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my teens an husband and friends dont understand

Posted by lisa k on 4/09/02 at 02:10 (078892)

welli was born with extremly flat fett and they began hurt in pregnancy then later in20's first heel paain , BUT it went away and i got custom orthos then the story continues....just thought foot pain is just a nuisance wwore band shoes lost orthodicts actually weel 2001i ignorned and dismissed it away again untill i just couldnt stand it anymore thought ok go bak to foot doc do what you did in your 20s and itll be ok.........it has now been 1 half year of 2 pts 3 shots new orthodicts birks only even to church ice viox then shower and walk only in birks and the doc says eswt...........im scared can barely drive got to store have to use wheelchairs IM ONLY 37 I feel like 60 and bummed cuz the prognosis seems chronic...................my kids ages 11 13 14 18 are so angry at me and think im just being lazy it makes me want to cry my foot loos normal to them i ve showed them medical pics and info they resent the money need for night splint orthodict birks slow them down and embarrass them at mall amusement parks i am trying acceptance and gatitude but i feel sad depressed incompetent guilty or something and old when i push to hard im back to sitting and bed i just would like to feel hopeful and ok again

Re: You are not alone.

Valerie S on 4/09/02 at 06:50 (078893)

Lisa,

I'm sorry to hear that you are in so much pain. I, like many of the people here, do know how frustrating and helpless PF can make you feel. I don't have kids, but understand how guilty you feel about not being able to do anything. PF is a lonely and humiliating injury.

I suffered for 6 months of severe pain on my feet before I had to leave my job, and now a year after leaving work, I am starting to lead a normal life again. You are young, you are proactive in your treatment, and there is plenty of hope left. Don't give up. You will find many friends here, if you want them, and try to remember that almost everyone gets better.

The hardest thing about having PF is the waiting. Since PF is a soft tissue injury, it takes a long time for it to heal. Like you, I kept thinking that foot pain was normal and that it would go away. Believe me, I spent many nights crying and wondering if I would ever be able to walk again. Now I walk the one mile to the beach without too much worry. It's amazing how you take something like walking for granted when you can do it, huh? Well, let me tell you... You will get better! and you will walk the mall again.

If you ever need a friend, feel free to email me at valerah @ yahoo. com .
Good luck to you. I hope you find some relief soon. In the meantime, we are all here for you.

Your friend, Val.

Re: my teens an husband and friends dont understand

Sharon W on 4/09/02 at 07:12 (078895)

Lisa,

I understand very well what you are saying. You say you just thought it was foot pain, just a nuissance, and didn't put much importance on it until it had become something much more serious. I did the same thing, and I am still very angry with myself about it. I think that is probably what my teenagers pick up on -- that I am angry about this -- and somehow they think that means I am not really in pain, I'm just exaggerating it. I am the sort of person who is embarassed by pain and tries to hide it. I retreat from my family when it gets really bad, because it makes me really grouchy and I don't want to snap at them -- but then I feel isolated and alone! Even more alone, when my kids look back at me with disgust as I limp along and speed up, as if to say, 'You can catch up with us if you want to, we're not going to wait for you!'

Whoa! I didn't mean to carry on like that! Anyway, you are not the only one who has those kinds of problems with the family. I know what you're going through. Sooner or later your loved ones will come around. Now that my foot has been 'immobilized' in a cast, so there is 'something wrong' with my foot that they can SEE, my family has gotten a lot better about it recently.

-- Sharon

Re: Family and friends

wendyn on 4/09/02 at 08:00 (078900)

Did Scott ever add a part to the book on how to deal with family and friends?

If not - maybe we should come up with some ideas to go in, this seems to be one of the most difficult things people have to contend with.

Re: LISA K

Carmen on 4/09/02 at 08:09 (078902)

Sounds like you are going to have to explain to them in no uncertain terms that this is NOT something you chose to have and it is going to take time to get through it and recover from it and you need their support. If they can't offer their support and continue to try and make you feel like you brought this on yourself tell them to leave the room and come back when they can be more understanding. Let them know you will explain it all to them as best as you can how this has happened, how this feels and the length of time it is going to take to get better if that will help them understand. If they are not interested in understanding than you're sorry but this is the way things are for now.
I know that seems harsh...or hard to do. Sometimes I think kids just need to be reminded of compassion, what it is like to feel for someone less fortunate then they. In this case it's their mom and it's probably not just anger they feel but fear...that you aren't getting better right away. I know it's hard o be strong...and positive but if you can act strong in front of them it may make it easier? Tell them you WILL get better, you're sorry to be a burden and if it makes it easier you will stay away from participating in the things that embarrass them.
But as far as you are concerned...do you have a plan NOW. What I mean is this...the Birks haven't helped-Have you tried different shoes? the PT didn't work-have you tried a new therapist with new techniques for treatment? The Vioxx isn't working-have you tried another type of anti-inflamm? The docotr says ESWT-have you had another opinion to make sure you have tried EVERYthing?
Don't just go by the one doctors opinion.....read as much as you can and learn about alternatives. There is always something you can do....
try not to lose hope, hang in there and stay with us...we'll do our best to help.
Can you outline your treatment in more detail for us?

Re: Family and friends

Carmen on 4/09/02 at 08:09 (078903)

I agree Wendy!!

Re: my teens an husband and friends dont understand

john h on 4/09/02 at 09:40 (078914)

Your story is told over and over here again. PF is a very insidious disease and we are very lucky if any of our family really understand how this effects us. Certainly venting here to people who understand will help. Facts are that most people will get better or even cured but you must continue to search for whatever will make your foot better. I assume their are a lot of things that you have not tried or their may be some things you are doing to make your condition worse so read all you can on the board and adapt some of what you can. One of our more promising treatments is ESWT. It is expensive and is not 100% guaranteed but for many it has been a big help.

Re: Family and friends

john h on 4/09/02 at 09:46 (078915)

Wendy: I think the mental part of PF can be every bit as bad as the pain for many people. If we see a person with one leg or one arm we can sympathize with them but with PF there is nothing to see. Your spouse or friends may sympathize with you for a while but after a year they tend to just pass it off unless you are real fortunate and actually can be upset that you do not want to do things that require a lot of walking,standing,playing etc.

Re: my teens an husband and friends dont understand

Rich on 4/09/02 at 10:04 (078916)

Lisa, I can relate to everything you posted. It is hard to understand what we are going through for anyone who has not suffered with PF themselves, especially your children. Mine are 3 and 6 and I am 35.

The spot on CBS last Friday finally got through to my husband and his dad. I work for them in a small family business and am fortunate to have extremely flexible work hours. I've gone to all my appts alone, even the PT, so nobody else actually heard the doc give his diagonosis or recommendations. When I have had to stay home off my feet, I have felt guilty about not going to our office to do my share. They are finally beginning to understand. It was like I was playing 'hookey' or something. At least they knew I wasn't going shopping!

My children do get disappointed but they also try to make mommy feel better. I try not to be too much of a burden on others but there are some things we just cannot do. My husband is being really good about eating 'easy' meals that I can prepare or else he does the 'real' cooking. He is also getting the girls ready in the mornings, putting one on the bus and driving the other to the sitter. He realizes that it's easier to delay his workday than leave one home with me so I can rest my foot. The laundry gets done...slowly. We do what we can to adjust.

I understand the depression. It's been very hard for me to give up even a little of my independance. I have worked outside the home since before we married. It took us about ten years to have our first child and I continued to work until my youngest daughter became so ill as an infant that we had to remove her from day care. My hubby always helped out in the house, but once I became an at-home mom I become responsible(by my choice) for all the shopping, transportation, household chores, bill paying, etc. And he gladly gave up these responsibilities! I think he was in 'heaven', actually. He forgot 'how' to do lots of things that did not involve the yard!

Once my little one was out of the woods I started doing light paperwork for my husband and eventually started working a few hours each day at his office. So all in all, I was beginning to enjoy some of that 'independence' again until this heel pain started. Now it's extra hard on him to have to 'relearn' some of the required household chores and I feel like an added burden on top of that. Because like you said, on the outside, we look perfectly normal! Well, until we try to walk!

Don't overdo it and push past your limits just to please others. You will regret it and pay miserably for it. You can get out and spend time with your family, you just have to make adjustments. I don't know if it was vanity or what, but I stayed home when my PF was at it's worse. If I was using a cane at home, I surely didn't go in public where anybody else would see. A dear friend finally insisted on taking me to Wal-Mart to do my Easter shopping and guess what? I actually used one of those motorized carts. At first I was embarrased by the stares...yes, people do stare. I felt, well they could at least see that I had a cast on so it was okay. Let me tell you, I enjoyed that outing so much that I don't care who stares now. I've been shopping three times since and feel better about myself.

My doc recently put me on crutches, so I feel back to square one...can't get around to well, yet, but I'm practicing! This cast can't stay on forever. And I am determined to beat this.

Follow your docs instructions...I assume you have a good Pod. The icing really helps. I recently switched from Vioxx to plain old Aleve. Two pills twice a day, and I don't have any more pain than with the Vioxx. Listen to your feet and be patient. And don't forget to STRETCH.

And don't hesitate to 'complain' to us here. We do understand and support each other, that's the best thing I have found so far to help me!

Sorry so long...I don't have anything else to do right now...LOL
Rich

Re: my teens an husband and friends dont understand

John k on 4/09/02 at 10:06 (078917)

I am 52 and have had PF for 16 years. It has gotten worse over time. I too understand how bad it is to be so crippled up. I was active until about 4 years ago until my PF got so bad. A wheelchair is no joke. No one can understand until they have this problem. You are not alone.

Re: Family and friends

John k on 4/09/02 at 10:14 (078920)

That is exactly right, John. Invisible disability is the worst kind. I just had surgery on my wrist. It looked normal but hurt like hell. I was driven out of my job because EEOC said I was not disabled according to legal definition even though I have PF, shoulder impingement, carpal tunnel and neck problems. I could not stand, walk, bend, case mail etc, but still I was just faking according to USPS. If I did not have a leg or hand I would still be working instead of on worker's compensation and SSD. I now spend my time reading legal crap about my compensation and how to survive as disabled person. Very unfair system for people with disablities that are not apparent to the eye.

Re: my teens an husband and friends dont understand

Sharon W on 4/09/02 at 10:34 (078923)

Dear Rich,

You said, 'If I was using a cane at home, I surely didn't go in public where anybody else would see...' I understand that; I am still struggling with it. Before I had the cast, it was easier to hide. In public, if there was any way to avoid it, I would walk very slowly and carefully but I wouldn't limp. With that in mind, I would try to only go out in the morning when everyone else is working anyway and my foot is at its best. Now that I'm wearing a cast, I try not to shop in places where I may run into acquaintances and would have to answer,'Oh, how did you hurt yourself?'

My best friend is handicapped and uses those grocery store scooters all the time, and ALWAYS walks with a cane. She thinks I'm being pretty stupid. She's probably right, I'm just not ready to yell my declaration from the mountaintops, 'I'm handicapped now! I can't walk like a 'normal' person!' It is not easy to face that reality, especially when you know it is a chronic problem and might be permanent. I have just been waiting, waiting to see what will happen, continuing with my treatments and hoping for the best but more and more fearing the worst.

There I go getting long-winded again today!

-- Sharon

Re: Family and friends

dave on 4/09/02 at 11:44 (078928)

I have had pf for five years now, i also have tried everything to try to get some relief. It seems that there are some people that are just uncaring.I have lost alot of friends over my pf. They just dont understand why i am unable to keep up. I was forced to quit the job that i loved. My coworkers to couldnt understand what i was going through. I know about the depression. i was depressed for a very long time. My life was so uprupted. i didnt understand why this was happening to me either. I have improved somewhat over the years. I know my limitations and rely on my wife for everything. Sometimes she gets angry that i dont help out enough. She needs me to remind her that i am not faking it. She has beegd me to have some kind of surgery. I absolutely refuse to go under the knife. i couldnt imagine the pain getting any worse. i finally saved up enough money and flew out to have the eswt treatment by doctor z. Its been almnost two weeks now and i am doing ok. I am doing better but i dont want to jynx myself. hang in there. Remember that 20 million people have foot pain every year. I have seen over a dozen people now that have had pf since i started getting symptoms 5 years ago.

Re: my teens an husband and friends dont understand

Suzanne D on 4/09/02 at 14:28 (078940)

Lisa, first of all we DO understand and care. Every one of us has been 'in your shoes' to some extent or another. I am 49 and am sorry for anyone whose feet hurt like mine did/do sometimes and have small children. Mine are almost 16 and 21. I teach first grade and am around little ones all day and need to be on my feet a lot, so I can sympathize.

When you feel your worst - when the depression hits and you think this will never end - come here, and you will always find a sympathetic ear and something new to learn and try. Just not feeling alone is a great help!

As others have said, don't give up! Keep trying with the shoes and the doctors and the medicines and the stretching. For me, the stretching and shoes have been the biggest aids in my improvement. And I learned the RIGHT kind of stretching here! (non-weight bearing). Before I found this site, I was doing stretching the doctor advised but which I think was making me worse. I learned all I know about shoes here, too.

It IS hard for anyone who hasn't experienced this pain to understand. But we do not deserve having family members becoming angry with us for not being able to 'keep up'. Learn to assert yourself more than you may have in the past. I say that from experience as I have been such a non-assertive person, always afraid I would offend someone or that they would not like me. Your children are certainly old enough to understand you are in pain, even if they cannot really know how you feel. You have always taken care of them; it is their time to show some of this concern for you. Sometimes we have to let them know that we need their help or that things cannot continue as they always have without some assistance.

I am thinking of you and wishing you well, Lisa! I hope that you will soon find some things which work for you and bring about improvement!

Suzanne :-)

Re: my teens an husband and friends dont understand

BrianG on 4/09/02 at 16:57 (078960)

Hi Lisa,

I think you hit the jackpot with your post! Have you tried to find a doctor that will really help you with the pain, and depression? The doctors who treat this injury are not always the best for follow up treatments, the failures. You may want to look for a pain management specialist who can treat the pain.

Along with the pain comes depression. If your not taking anything yet, it's time to talk to someone. It can be your family doc, or he can give you a referrel to someone that will treat depression. You'd be very surprised at how much better you can feel with the right type of treatment. Give it a try, and good luck.

BrianG

Re: Sharon you said it perfectly

Tammie on 4/09/02 at 17:04 (078961)

You just took a page out of my book! I still am embarased to admit or show pain! But sometimes it has its way of breaking me down and then i feel so guilty and scared that i am not as strong as I portrayed all my life, that was scary also! Every word you have said is like my life I cant believe it ! Thank you thank u so very much for sharing this I really mean it thank u a thousand times over! I am glad that you shared this , it is so familiar and I feel better just reading about your hidden secret! As it was mine to . I was happy that Julie gave me and others gave me permission to deal with my pain and to take care of myself. It is ok to take charge of our care and if we cant let family know just how bad it gets we know there is someone else here that is safe and they will truly understand . Hugs to you and I will thank the good lord for giving us yet another angel!

Re: I agree also !

Tammie on 4/09/02 at 17:08 (078963)

Good thing to do!

Re: You are not alone.

Tammie on 4/09/02 at 17:23 (078966)

I am so sorry that you to have to suffer with this awful several fold pain issue! I think everyone here knows something about it , as was said it is a page out of our own lives!Thank the angels for this board, as it is many things , it not only gives knowledge and advice and shared treatments and products but it also touches the issues of the heart and the home and life in general! It is good to know there are others just like us and that they truly know what it is like! It is a very safe area to share your worries and your frightening expierance along with the emotional issues that surly go hand in hand!

Please talk to someone about treating depression , really I am not kidding I was there not to long ago, myself. I am now a few months on paxil and can say that it indeed has been a life savor! No not a cure by far but it does help and I intend to keep up with it as long as needed! I also made a appt. with a pain management and am going to see how I can help myself to get some of my life back including a full nights sleep not thease frilly 2 hr,pop a pill 2 more hr pop a pill etc. I want my life back and hope that you to will get some help!

Can i offer you the tip of a angel wing along with the many other caring angels here. To help lift you up off the muddy bumpy road and stay with you till you have your steady feet again? Please know that we are here for you and only wish to give you a listening heart and a piece of wing to carry you thru! Many here have given very good advice! Again it is ok to find some help , it is something you must do for your body and life. I only wish i could show you how much it has helped me. It wasnt long agao that I was wondering how I was going to continue living, as there were no lights it was scary and dark and getting darker and darker. Now today I feel that there are some flickers of light and there is much work to be done but I am still in the search! Hugs to you and I wish you well

Re: John K -

Janet C on 4/09/02 at 19:11 (078979)

Have you ever spoken to a Dr. about the possibility that you could have progressed to RSD/CRPS?

Re: Sharon you said it perfectly

Sharon W on 4/09/02 at 19:15 (078980)

Dear Tammie,

Yes I really do believe that this board is a 'safe' place to talk about foot pain, and all the unpleasant changes that it brings into our lives. There are many comapssionate people here -- 'angels,' as you call them!

I always thought of showing pain as being like a dog rolling onto her back to expose her soft, vulnerable underbelly to every living creature around. The dog does that when she is being submissive, or else when she really feels safe and TRUSTS all those around her. Because when she does that she is offering an opportunity for others to attack her where she is weakest and SHOWING them the part that is most vulnerable.

Thank goodness for 'angels' who make us feel safe...

-- Sharon

Re: I am impressed

Tammie on 4/09/02 at 19:23 (078982)

Amen to that! You said it all so perfectly I am so impressed as this is EXACTLY how I feel! Thank you so much ! Yes there are a assortment of angels here and forever I will be indebted to them as if not for them I dont honestly believe I would have had the courage to stay in this race! But for all there hard work and much patience I was carried thru the worse and now I am on my own two feet, ok ocasionaly I stumble LOL but I am getting stronger! Hugs to you again and thank u from my heart!

Re: I am impressed

Sharon W on 4/09/02 at 19:25 (078983)

Tammie,

You know that you are one of MY 'angels,' don't you?

-- Sharon

Re: Friends and family

wendyn on 4/09/02 at 22:51 (079011)

Obviously this is something that most of us find difficult to deal with. After dealing with this for years, I've found that it helps to have pre-planned ways to deal with questions and comments....

1. For strangers who comment on my ugly shoes or limp, I usually have an off the cuff remark and I change the subject. I do not dicuss my condition with people I don't know - it's really none of their business. I'm not rude to them - but it's not something I feel obligated to talk about.

2. For friends and coworkers - I keep answers very simple, and I don't go into detail. I don't look for sympathy from them - but I also don't feel as though I them any apologies. If people really want to know, I will give them a basic explanation and let their interest and ability to understand guide how much I say. I am long since past feeling obligated to apologize for the restrictions I have to live with. Generally I try to keep a sense of humor about the comments, but that's usually the way I deal with most things.

3. For family, I don't say too much either - if I need to sit, or if I'm having a bad day - I just say so. But, I don't expect them to really 'understand' - they can't know what it's like unless they've been through it. If I need to just vent and complain - I come here...

Fortunately for me, I have a pretty understanding family. If you're having a lot of difficulty with your family being angry with you, it may help to go for some family counselling to find ways to cope with what's happened. It can be a really big adjustment for everyone.

Re: GREAT advice, Wendy!

Suzanne D on 4/10/02 at 06:34 (079019)

I admire your ability to so concisely express your thoughts and feelings, Wendy! I 'beat around the bush', as the old expression goes, when I say anything! You seem to always be able to drive right to the heart of the matter and make so much sense.

We would all be wise to take heed to what you wrote. I think I will print out your message to remind me.

I hope you have a GOOD day!

Suzanne :-)

Re: John K -

dave on 4/10/02 at 07:26 (079022)

So what exactly is rsd/crps?

Re: GREAT advice, Wendy!

john h on 4/10/02 at 09:43 (079046)

The only place I really discuss PF to any extent is right here on the board. Unfortunately most just do not understand and you may can get some understanding for a while but that quickly wears off. If I want to whine then I whine here.

Re: Friends and family

Tammie on 4/10/02 at 09:56 (079048)

I agree with you to as I have always been secretive about my aches and pains in life or when i am ill I do not want people areound me and I get that guilty feeling that I should not let anyone know about how weak i am for being unable to hide pain has been a awful guilt trip.

I think part of my troubles have been that I have felt guilty that I have pain and I felt I am not aloud to hurt.

I have not figured out what to say about my heavy limp or my need to sit down and sometimes in a weird spot, oh my is it embarresing but if I didnt I would fall down as it can hurt so much it makes me feel dizy and sick to my stomache. How do you explin this one ? I mean we are talking about in the grocery store or the drugstore at work i have been caught and they thought I fell. I try to gloss over it as it embarreses me but some push as they want answers that I do not have.If it is a bad day and asked I say simply I have had better days and I have had worse I am just thankful I am still here. I then take leave and get busy.

I guess I am a bit different with family, I want them to understand some, most of all I dont intentionaly try to mess up there lives,and that yes the pain is very real, no I dont have a cut or broken bone but even tho they cannot see it there is pain.I just would like them to understand this I dont want symathy or coddled but then there was a recent day with a lot of pain and I went and sat on hubbys lap and cried myself silly and that was a wonderful feeling that he held me and rubbed my back and allowed me to just get it out and comforted me. You see I dont show much pain if I can help it I really try hard not to but sometimes it happens. I think he knows there is something very wrong as I have always hid my feelings I dont cry not very often in front of family it takes a lot .

Wendyn, You have alot of interesting comments I have most likly used the better days and worse from you I believe. It works great and leaves me feeling I am in charge, haha I have a issue with allowing someone telling me how I should feel or trying to beat each others worse pains lol I dont think it can be measured each is a individual so there fore we all have differences. This is a interesting thread! I would love to hear others thoughts.

Re: Friends and family

Sharon W on 4/10/02 at 10:51 (079054)

Wendyn,

I agree, it's good advice. It's more or less what I've done so far -- on those occasions when I've been unable to avoid the situation! But maybe sometimes I AM a bit rude in situation #1 -- when STRANGERS ask, 'How did you hurt your leg?' I'm not really very good at making a joke of it so I often just say, 'I didn't,' and go on about my business. That usually leaves them quite dumbfounded, and they don't ask anything else...

-- Sharon

Re: Friends and family

dave on 4/10/02 at 14:08 (079088)

Wow, i cant believe how much that hits home. I cant even add to that.That is exactly how its been for me. I wish you luck in your recovery.

Re: Sharon you said it perfectly

John h on 4/10/02 at 18:14 (079125)

Well put Sharon! Kittys also do the same thing.

Re: A Description of RSD/CRPS:

Janet C on 4/10/02 at 23:43 (079184)

Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS), is a complicated pain problem. It is characterized by severe pain and progressive physical changes that persist long after the original injury has healed. The original injury may have been as severe as a bullet wound or as simple as a sprained ankle. The syndrome can also sometimes occur after routine surgery.

Victims of RSD usually describe the pain as burning or shooting with extreme sensitivity to touch. For example, an article of clothing rubbing the affected area will often cause severe, extraordinary discomfort.

RSD usually occurs in an extremity (leg and foot or arm and hand), but can occur almost anywhere, including the chest, breast or abdomen. It is impossible to predict who will develop RSD. RSD is suspected when pain and other physical changes persist after healing appears complete and other causative factors have been ruled out.

Stages and Physical Changes:

RSD develops slowly, in stages, over several months or years. Initially the area may appear swollen and feel warm to touch due to both inflammation and spasms of the surrounding blood vessels.

In the second stage, the blood supply to the area diminishes and the area becomes cool to touch. The skin becomes shiny and waxy and there is a loss of hair and skin tone. The pain increases and there can be weakening of the underlying bone.

In the third and final stage, there is wasting of the affected muscles and disabling pain. Left untreated, the area can develop contractures from disuse which can become permanent.

Many Doctors classify RSDS into these different stages. It helps to understand the complexity of the disease. But all the stages can combine with one another, and not everyone experiences the same symptoms, or you may never advance to another stage. This is part of what makes RSDS difficult to diagnose.

Treatment:

Because of the complicated and progressive nature of this potentially devastating pain syndrome, treatment must be aggressive and must focus on rehabilitation as well as pain management. The doctor will prescribe treatment for the causative factors as well as the resultant physical, psychological and emotional side effects.

Nerve blocks are used to break the pain cycle and prevent progression of symptoms. These are most effective in the earlier stages and may need to be repeated several days in a row. Hospitalization for continuous nerve block is sometimes necessary.

Narcotic medications will decrease the pain of RSD but do not impact the underlying problem. In the early stages, it is preferable to use pain medicines that are also anti-inflammatories. Steroids may be prescribed short term to relieve symptoms and arrest their progression. Anti-depressants are used to improve sleep and inhibit pain pathways. Anti-convulsants and oral anesthetic agents may also be helpful for this type of pain.

Physical therapy is very important for pain relief and to maintain muscle strength and mobility. Massage, ultrasound and whirlpool may be employed for comfort, while aquatic or land exercise and mobilization prevent muscle wasting and disability.

The intensity of pain and muscle weakness often make compliance with prescribed treatment difficult for the patient. It is extremely important that all medicines be taken as directed and that exercises be performed regularly despite the pain. Education and counseling related to coping with and managing pain are available and may be helpful. In addition, biofeedback can assist individuals in learning to control blood flow and muscle tension to lessen symptoms.

Re: A Description of RSD/CRPS:

Sharon W on 4/11/02 at 07:18 (079195)

Janet,

WOW! I've been reading up on RSD, but that is clearer and more informative than anything I've come up with. Thanks!

-- Sharon

Re: GREAT advice, Wendy!

Carole C in NOLA on 4/11/02 at 11:58 (079245)

John, whine here all you want; we understand. You really haven't whined much at all, especially considering how long you have been fighting this PF monster.

Carole C

Re: my teens an husband and friends dont understand

Carole C in NOLA on 4/11/02 at 12:06 (079251)

It's not easy to face that reality of being handicapped. Facing it can be a big step in recovery for some of us, though. It allows us to give our feet a break when necessary, which sometimes is helpful for recovery from PF. It also helps with the depression when feet hurt a little less.

Carole C

Re: One more comment

Carole C in NOLA on 4/11/02 at 12:35 (079260)

Wendy, your list is great! I have one peripheral comment to add, which you didn't really put in because it doesn't apply to you.

Some of us are overweight, and my family 100% and very aggressively and openly have 'determined' that no matter what the doctors say, my PF is completely due to my overweight and that nobody ever gets PF for any other reason. Therefore, you see, according to them it's my fault and something I should be ashamed of. That's not true, but that is the attitude they have taken. Overweight is considered very shameful and wrong in my family and one's weight is considered a measure of one's worth. My big brothers have always teased me (as big brothers do) and in this case they have 'ganged up on me' about my PF and it really hurt. They blame not only my PF on my overweight, but also anything else wrong with me including my arthritis and my multiple sclerosis. My Mom believes them because they agree.

To me, the added burden of being expected to be ashamed of my disability is much worse than any embarrassment over using wheelchairs, and so on. When I was at my heaviest weight, for years, I had no foot problems at all; I only got PF after losing 83 pounds and beginning a vigorous and poorly thought out exercise program on which my doctor blames my PF. He specifically told me very firmly and repeatedly that in my case my PF was NOT caused by my remaining 95 pounds or so of overweight, when I asked him. The reason that it was caused by my new exercise program and not caused by my overweight is that it came on very suddenly, last September 22nd.

I have had great success in dealing with this by telling my brothers that since they already know it all, that I will not be sharing any more information with them concerning any aspects of my health including my arthritis, my multiple sclerosis, my overweight, and especially my PF. Since none of my family live close by, that's fairly easy to accomplish. If one of them asks or hints about my health in one of our 'round robin' e-mails, I just ignore that sentence and comment on the rest of it in cheery and friendly fashion.

They aren't bad people, but I can't get support from them (so I get support here instead). They are intelligent and well read, but they have strong opinions and see what they want to see when they read about PF. Oh well! I can accept that they are not perfect when it comes to empathy and understanding. They are lots nicer than some peoples' relatives.

Carole C

Re: One more comment

Sharon W on 4/11/02 at 13:16 (079276)

Carole,

I, too, am overweight (OK, make that 'obese') and I know it contributes to my foot problems. But I also know that it did not CAUSE them. The only sib of mine who knows anything about this is my sister, who I thank God for every day. But my best friend, the one who is handicapped, constantly talks to me about losing weight and sends me books for birthday and Christmas that are really 'hints'. She isn't nasty about it, but she also isn't telling me anything I didn't already know! I have read some of your posts on this subject and I know you will understand when I say, the immobility (not working anymore, etc.) and boredom forced on me by PF and TTS, combined with effects of steroid injections, has led me to GAIN quite a bit of weight, not LOSE it, since I was diagnosed. I am not proud of this, but I've been trying to cope as best I could...

Anyway, I wanted to say how much I admire your achievement (the weight loss) -- congratulations on your success in this very difficult task!

-- Sharon

Re: One more comment

Rich on 4/11/02 at 13:20 (079277)

Isn't it amazing how some siblings are NEVER wrong in our parents eyes? This is such a chore to deal with! I think they should have been congratulating you on your efforts to lose weight and to exercise and to offer encouragement for continued weight loss, not to mention sympathy when you injured yourself. It is so easy for someone else to place their admonitions on us but they never seem to receive!

Hang in there! Only YOU can live YOUR life!

Rich

Re: One more comment

Carole C in NOLA on 4/11/02 at 14:02 (079287)

Thanks, Sharon. I still have my work cut out for me as far as weight loss, but Weight Watchers plus cutting way back on refined sugar seems to work for me so I have hope. I agree TOTALLY about the immobility and boredom causing weight gain. I gained quite a lot after I hurt my knees and then got arthritis in them and lost my mobility. Even though I kept attending Weight Watchers I wasn't able to lose any when my PF was bad, but now that I'm feeling better I'm ready to tackle this again. Wish me luck! :)

Carole C

Re: One more comment

Carole C in NOLA on 4/11/02 at 14:06 (079290)

Yes, that's true. And I know my brothers well enough to know they would never truly mean me any harm. On the other hand, they are in their fifties also and I doubt they will ever change much at this age. So, I just got really firm with them and I refuse to discuss my health with them any more. It seems to work, and it's 'the punishment to fit the crime' because they are really pretty curious about it now. (grin) See? I'm as awful as they are. We just torment each other terribly sometimes! LOL

Carole C

Re: One more comment

john h on 4/12/02 at 09:11 (079403)

Sometimes the weight gain comes because of PF rather than PF because of the weight gain.

Re: One more comment

Barbara S. on 4/12/02 at 09:43 (079408)

Amen to that I have gained 25 lbs since aug,2001 when I had to stop walking. I walked 2miles in afternoon and 4 miles with my dogs when I got home from work. My poor dogs also gained 10lbs. I bought a Vision Fitness semi-recumbent fitness cycle. End of Dec,but my foot was getting worse and worse and it seemed the rotation was aggravating my ankle area. So I haven't been riding. I started to do just 15 min morn, noon and night instead of 50min at once seems to work a little better.

Re: Weight loss efforts and PF

Carole C in NOLA on 4/12/02 at 09:45 (079409)

Yes, I can sure see how that could happen. I tried my hardest to stick with Weight Watchers throughout my PF, but as you know I was pretty depressed for a while there, and resting constantly too. So, I have only managed to maintain my weight. I guess I should consider that to be a success, under the circumstances. I am utterly in awe of people like Mehatmelissama who have actually LOST weight with PF. They prove that it's actually possible, though not for me at that time.

Speaking of weight loss, what a relief! I weigh exactly the same this morning (to the 0.2 pound) as I did before I went to sea. I kind of pigged out on the ship and so I am amazed and happy about that. They had about 20 flavors of Bluebell ice cream (my favorite brand) that was available to us at any hour, with chocolate syrup, along with cakes, pies, and lots of other foods. Mealtime entrees were outstanding and pretty fattening too. The chief scientist kept bringing us large quantities of fresh buttered popcorn while we watched videos, which really hit the spot but it wasn't the low cal kind.

Maybe I was able to maintain my weight because of the additional exercise due to the rocking of the ship, when trying to just stand or walk. At any rate, I'm back on Weight Watchers now and I mean business! LOL! We started a new 'At Work' ten week session while I was gone and I think I can start losing again now.

Carole C

Re: One more comment

Carole C in NOLA on 4/12/02 at 10:17 (079423)

During the past few weeks I have just started again with my recumbent bike, which is my favorite form of exercise but which also actually caused my PF. When I found that out from my doctor, a couple of months after my PF started, I stopped my cycling completely for several months and tried to rest constantly and limit what I ate. That was difficult due to the depression that comes with PF. Now that I'm mostly healed, I am beginning my recumbent bike again very carefully and I know some of the things I should NOT do on it. LOL

Here's what helps me (and thanks to John H for some of these tips):

1. Turn the tension down to zero
2. Make sure that my knees don't completely straighten at any point.
3. Wear the shoes that seem best for my PF
4. I make sure that my feet are placed correctly on the pedals and that my feet and legs are moving properly and lined up straight forward like they are supposed to be, and not 'slopping' around doing weird things at angles. Also the angle of my ankles should be correct, and I even try to cycle with my back fairly straight and not leaning to one side. Basically I try to ride with perfect form, as though I was being filmed for an instructional video on cycling.

I wear my custom orthotics when I cycle, in my tie-up SAS shoes. Cycling in a somewhat loose sandal like a Birkenstock is not a good idea for me either, because it moves around on my foot and so it does not constantly provide support while I cycle.

So far, so good, because it hasn't aggravated my PF so far. You probably know more about this than I do, because I am not riding as far as you yet. I started at only 0.1 miles per day and before I left to go to sea, I gradually worked up to 1.1 miles in 5 minutes. Since I didn't ride for a week, I'll back off a little and work back up to that. My next goal is two five minute periods like that, one in the morning and one in the afternoon.

Carole C

Re: Friends and family

Diane O. on 4/16/02 at 11:44 (079831)

I can really relate to what you posted. I feel at time that I am sick of myself yapping about PF. Everyday my mother calls me and asks How are your feet today and lately I just say OK. I know she means well but after awhile it gets old. My family has also made comments of my weight causing my PF and I would give them every other cause factor and deny it had anything to do with my obesity. I feel that this PF has actually made me take charge of my life and my need to shed some weight but at the same time very difficult to become more active when your feet scream everytime you even walk to the car let alone a gym. I have started swimming and find it to be excellent for me minus the discomfort of getting to and from the pool. Everytime I see my co-workers they ask how Ièm doing and I used to get into a lengthy discussion but feel that I sound like a complainer and a broken record. At times I feel I should post my progress or lack there of on the BB at work. Testy, Testy. I really donèt want there sympathy but just there understanding that this is REAL. I have found a great support group out in cyber-space, I am so thankful
Diane O.

Re: You are not alone.

Valerie S on 4/09/02 at 06:50 (078893)

Lisa,

I'm sorry to hear that you are in so much pain. I, like many of the people here, do know how frustrating and helpless PF can make you feel. I don't have kids, but understand how guilty you feel about not being able to do anything. PF is a lonely and humiliating injury.

I suffered for 6 months of severe pain on my feet before I had to leave my job, and now a year after leaving work, I am starting to lead a normal life again. You are young, you are proactive in your treatment, and there is plenty of hope left. Don't give up. You will find many friends here, if you want them, and try to remember that almost everyone gets better.

The hardest thing about having PF is the waiting. Since PF is a soft tissue injury, it takes a long time for it to heal. Like you, I kept thinking that foot pain was normal and that it would go away. Believe me, I spent many nights crying and wondering if I would ever be able to walk again. Now I walk the one mile to the beach without too much worry. It's amazing how you take something like walking for granted when you can do it, huh? Well, let me tell you... You will get better! and you will walk the mall again.

If you ever need a friend, feel free to email me at valerah @ yahoo. com .
Good luck to you. I hope you find some relief soon. In the meantime, we are all here for you.

Your friend, Val.

Re: my teens an husband and friends dont understand

Sharon W on 4/09/02 at 07:12 (078895)

Lisa,

I understand very well what you are saying. You say you just thought it was foot pain, just a nuissance, and didn't put much importance on it until it had become something much more serious. I did the same thing, and I am still very angry with myself about it. I think that is probably what my teenagers pick up on -- that I am angry about this -- and somehow they think that means I am not really in pain, I'm just exaggerating it. I am the sort of person who is embarassed by pain and tries to hide it. I retreat from my family when it gets really bad, because it makes me really grouchy and I don't want to snap at them -- but then I feel isolated and alone! Even more alone, when my kids look back at me with disgust as I limp along and speed up, as if to say, 'You can catch up with us if you want to, we're not going to wait for you!'

Whoa! I didn't mean to carry on like that! Anyway, you are not the only one who has those kinds of problems with the family. I know what you're going through. Sooner or later your loved ones will come around. Now that my foot has been 'immobilized' in a cast, so there is 'something wrong' with my foot that they can SEE, my family has gotten a lot better about it recently.

-- Sharon

Re: Family and friends

wendyn on 4/09/02 at 08:00 (078900)

Did Scott ever add a part to the book on how to deal with family and friends?

If not - maybe we should come up with some ideas to go in, this seems to be one of the most difficult things people have to contend with.

Re: LISA K

Carmen on 4/09/02 at 08:09 (078902)

Sounds like you are going to have to explain to them in no uncertain terms that this is NOT something you chose to have and it is going to take time to get through it and recover from it and you need their support. If they can't offer their support and continue to try and make you feel like you brought this on yourself tell them to leave the room and come back when they can be more understanding. Let them know you will explain it all to them as best as you can how this has happened, how this feels and the length of time it is going to take to get better if that will help them understand. If they are not interested in understanding than you're sorry but this is the way things are for now.
I know that seems harsh...or hard to do. Sometimes I think kids just need to be reminded of compassion, what it is like to feel for someone less fortunate then they. In this case it's their mom and it's probably not just anger they feel but fear...that you aren't getting better right away. I know it's hard o be strong...and positive but if you can act strong in front of them it may make it easier? Tell them you WILL get better, you're sorry to be a burden and if it makes it easier you will stay away from participating in the things that embarrass them.
But as far as you are concerned...do you have a plan NOW. What I mean is this...the Birks haven't helped-Have you tried different shoes? the PT didn't work-have you tried a new therapist with new techniques for treatment? The Vioxx isn't working-have you tried another type of anti-inflamm? The docotr says ESWT-have you had another opinion to make sure you have tried EVERYthing?
Don't just go by the one doctors opinion.....read as much as you can and learn about alternatives. There is always something you can do....
try not to lose hope, hang in there and stay with us...we'll do our best to help.
Can you outline your treatment in more detail for us?

Re: Family and friends

Carmen on 4/09/02 at 08:09 (078903)

I agree Wendy!!

Re: my teens an husband and friends dont understand

john h on 4/09/02 at 09:40 (078914)

Your story is told over and over here again. PF is a very insidious disease and we are very lucky if any of our family really understand how this effects us. Certainly venting here to people who understand will help. Facts are that most people will get better or even cured but you must continue to search for whatever will make your foot better. I assume their are a lot of things that you have not tried or their may be some things you are doing to make your condition worse so read all you can on the board and adapt some of what you can. One of our more promising treatments is ESWT. It is expensive and is not 100% guaranteed but for many it has been a big help.

Re: Family and friends

john h on 4/09/02 at 09:46 (078915)

Wendy: I think the mental part of PF can be every bit as bad as the pain for many people. If we see a person with one leg or one arm we can sympathize with them but with PF there is nothing to see. Your spouse or friends may sympathize with you for a while but after a year they tend to just pass it off unless you are real fortunate and actually can be upset that you do not want to do things that require a lot of walking,standing,playing etc.

Re: my teens an husband and friends dont understand

Rich on 4/09/02 at 10:04 (078916)

Lisa, I can relate to everything you posted. It is hard to understand what we are going through for anyone who has not suffered with PF themselves, especially your children. Mine are 3 and 6 and I am 35.

The spot on CBS last Friday finally got through to my husband and his dad. I work for them in a small family business and am fortunate to have extremely flexible work hours. I've gone to all my appts alone, even the PT, so nobody else actually heard the doc give his diagonosis or recommendations. When I have had to stay home off my feet, I have felt guilty about not going to our office to do my share. They are finally beginning to understand. It was like I was playing 'hookey' or something. At least they knew I wasn't going shopping!

My children do get disappointed but they also try to make mommy feel better. I try not to be too much of a burden on others but there are some things we just cannot do. My husband is being really good about eating 'easy' meals that I can prepare or else he does the 'real' cooking. He is also getting the girls ready in the mornings, putting one on the bus and driving the other to the sitter. He realizes that it's easier to delay his workday than leave one home with me so I can rest my foot. The laundry gets done...slowly. We do what we can to adjust.

I understand the depression. It's been very hard for me to give up even a little of my independance. I have worked outside the home since before we married. It took us about ten years to have our first child and I continued to work until my youngest daughter became so ill as an infant that we had to remove her from day care. My hubby always helped out in the house, but once I became an at-home mom I become responsible(by my choice) for all the shopping, transportation, household chores, bill paying, etc. And he gladly gave up these responsibilities! I think he was in 'heaven', actually. He forgot 'how' to do lots of things that did not involve the yard!

Once my little one was out of the woods I started doing light paperwork for my husband and eventually started working a few hours each day at his office. So all in all, I was beginning to enjoy some of that 'independence' again until this heel pain started. Now it's extra hard on him to have to 'relearn' some of the required household chores and I feel like an added burden on top of that. Because like you said, on the outside, we look perfectly normal! Well, until we try to walk!

Don't overdo it and push past your limits just to please others. You will regret it and pay miserably for it. You can get out and spend time with your family, you just have to make adjustments. I don't know if it was vanity or what, but I stayed home when my PF was at it's worse. If I was using a cane at home, I surely didn't go in public where anybody else would see. A dear friend finally insisted on taking me to Wal-Mart to do my Easter shopping and guess what? I actually used one of those motorized carts. At first I was embarrased by the stares...yes, people do stare. I felt, well they could at least see that I had a cast on so it was okay. Let me tell you, I enjoyed that outing so much that I don't care who stares now. I've been shopping three times since and feel better about myself.

My doc recently put me on crutches, so I feel back to square one...can't get around to well, yet, but I'm practicing! This cast can't stay on forever. And I am determined to beat this.

Follow your docs instructions...I assume you have a good Pod. The icing really helps. I recently switched from Vioxx to plain old Aleve. Two pills twice a day, and I don't have any more pain than with the Vioxx. Listen to your feet and be patient. And don't forget to STRETCH.

And don't hesitate to 'complain' to us here. We do understand and support each other, that's the best thing I have found so far to help me!

Sorry so long...I don't have anything else to do right now...LOL
Rich

Re: my teens an husband and friends dont understand

John k on 4/09/02 at 10:06 (078917)

I am 52 and have had PF for 16 years. It has gotten worse over time. I too understand how bad it is to be so crippled up. I was active until about 4 years ago until my PF got so bad. A wheelchair is no joke. No one can understand until they have this problem. You are not alone.

Re: Family and friends

John k on 4/09/02 at 10:14 (078920)

That is exactly right, John. Invisible disability is the worst kind. I just had surgery on my wrist. It looked normal but hurt like hell. I was driven out of my job because EEOC said I was not disabled according to legal definition even though I have PF, shoulder impingement, carpal tunnel and neck problems. I could not stand, walk, bend, case mail etc, but still I was just faking according to USPS. If I did not have a leg or hand I would still be working instead of on worker's compensation and SSD. I now spend my time reading legal crap about my compensation and how to survive as disabled person. Very unfair system for people with disablities that are not apparent to the eye.

Re: my teens an husband and friends dont understand

Sharon W on 4/09/02 at 10:34 (078923)

Dear Rich,

You said, 'If I was using a cane at home, I surely didn't go in public where anybody else would see...' I understand that; I am still struggling with it. Before I had the cast, it was easier to hide. In public, if there was any way to avoid it, I would walk very slowly and carefully but I wouldn't limp. With that in mind, I would try to only go out in the morning when everyone else is working anyway and my foot is at its best. Now that I'm wearing a cast, I try not to shop in places where I may run into acquaintances and would have to answer,'Oh, how did you hurt yourself?'

My best friend is handicapped and uses those grocery store scooters all the time, and ALWAYS walks with a cane. She thinks I'm being pretty stupid. She's probably right, I'm just not ready to yell my declaration from the mountaintops, 'I'm handicapped now! I can't walk like a 'normal' person!' It is not easy to face that reality, especially when you know it is a chronic problem and might be permanent. I have just been waiting, waiting to see what will happen, continuing with my treatments and hoping for the best but more and more fearing the worst.

There I go getting long-winded again today!

-- Sharon

Re: Family and friends

dave on 4/09/02 at 11:44 (078928)

I have had pf for five years now, i also have tried everything to try to get some relief. It seems that there are some people that are just uncaring.I have lost alot of friends over my pf. They just dont understand why i am unable to keep up. I was forced to quit the job that i loved. My coworkers to couldnt understand what i was going through. I know about the depression. i was depressed for a very long time. My life was so uprupted. i didnt understand why this was happening to me either. I have improved somewhat over the years. I know my limitations and rely on my wife for everything. Sometimes she gets angry that i dont help out enough. She needs me to remind her that i am not faking it. She has beegd me to have some kind of surgery. I absolutely refuse to go under the knife. i couldnt imagine the pain getting any worse. i finally saved up enough money and flew out to have the eswt treatment by doctor z. Its been almnost two weeks now and i am doing ok. I am doing better but i dont want to jynx myself. hang in there. Remember that 20 million people have foot pain every year. I have seen over a dozen people now that have had pf since i started getting symptoms 5 years ago.

Re: my teens an husband and friends dont understand

Suzanne D on 4/09/02 at 14:28 (078940)

Lisa, first of all we DO understand and care. Every one of us has been 'in your shoes' to some extent or another. I am 49 and am sorry for anyone whose feet hurt like mine did/do sometimes and have small children. Mine are almost 16 and 21. I teach first grade and am around little ones all day and need to be on my feet a lot, so I can sympathize.

When you feel your worst - when the depression hits and you think this will never end - come here, and you will always find a sympathetic ear and something new to learn and try. Just not feeling alone is a great help!

As others have said, don't give up! Keep trying with the shoes and the doctors and the medicines and the stretching. For me, the stretching and shoes have been the biggest aids in my improvement. And I learned the RIGHT kind of stretching here! (non-weight bearing). Before I found this site, I was doing stretching the doctor advised but which I think was making me worse. I learned all I know about shoes here, too.

It IS hard for anyone who hasn't experienced this pain to understand. But we do not deserve having family members becoming angry with us for not being able to 'keep up'. Learn to assert yourself more than you may have in the past. I say that from experience as I have been such a non-assertive person, always afraid I would offend someone or that they would not like me. Your children are certainly old enough to understand you are in pain, even if they cannot really know how you feel. You have always taken care of them; it is their time to show some of this concern for you. Sometimes we have to let them know that we need their help or that things cannot continue as they always have without some assistance.

I am thinking of you and wishing you well, Lisa! I hope that you will soon find some things which work for you and bring about improvement!

Suzanne :-)

Re: my teens an husband and friends dont understand

BrianG on 4/09/02 at 16:57 (078960)

Hi Lisa,

I think you hit the jackpot with your post! Have you tried to find a doctor that will really help you with the pain, and depression? The doctors who treat this injury are not always the best for follow up treatments, the failures. You may want to look for a pain management specialist who can treat the pain.

Along with the pain comes depression. If your not taking anything yet, it's time to talk to someone. It can be your family doc, or he can give you a referrel to someone that will treat depression. You'd be very surprised at how much better you can feel with the right type of treatment. Give it a try, and good luck.

BrianG

Re: Sharon you said it perfectly

Tammie on 4/09/02 at 17:04 (078961)

You just took a page out of my book! I still am embarased to admit or show pain! But sometimes it has its way of breaking me down and then i feel so guilty and scared that i am not as strong as I portrayed all my life, that was scary also! Every word you have said is like my life I cant believe it ! Thank you thank u so very much for sharing this I really mean it thank u a thousand times over! I am glad that you shared this , it is so familiar and I feel better just reading about your hidden secret! As it was mine to . I was happy that Julie gave me and others gave me permission to deal with my pain and to take care of myself. It is ok to take charge of our care and if we cant let family know just how bad it gets we know there is someone else here that is safe and they will truly understand . Hugs to you and I will thank the good lord for giving us yet another angel!

Re: I agree also !

Tammie on 4/09/02 at 17:08 (078963)

Good thing to do!

Re: You are not alone.

Tammie on 4/09/02 at 17:23 (078966)

I am so sorry that you to have to suffer with this awful several fold pain issue! I think everyone here knows something about it , as was said it is a page out of our own lives!Thank the angels for this board, as it is many things , it not only gives knowledge and advice and shared treatments and products but it also touches the issues of the heart and the home and life in general! It is good to know there are others just like us and that they truly know what it is like! It is a very safe area to share your worries and your frightening expierance along with the emotional issues that surly go hand in hand!

Please talk to someone about treating depression , really I am not kidding I was there not to long ago, myself. I am now a few months on paxil and can say that it indeed has been a life savor! No not a cure by far but it does help and I intend to keep up with it as long as needed! I also made a appt. with a pain management and am going to see how I can help myself to get some of my life back including a full nights sleep not thease frilly 2 hr,pop a pill 2 more hr pop a pill etc. I want my life back and hope that you to will get some help!

Can i offer you the tip of a angel wing along with the many other caring angels here. To help lift you up off the muddy bumpy road and stay with you till you have your steady feet again? Please know that we are here for you and only wish to give you a listening heart and a piece of wing to carry you thru! Many here have given very good advice! Again it is ok to find some help , it is something you must do for your body and life. I only wish i could show you how much it has helped me. It wasnt long agao that I was wondering how I was going to continue living, as there were no lights it was scary and dark and getting darker and darker. Now today I feel that there are some flickers of light and there is much work to be done but I am still in the search! Hugs to you and I wish you well

Re: John K -

Janet C on 4/09/02 at 19:11 (078979)

Have you ever spoken to a Dr. about the possibility that you could have progressed to RSD/CRPS?

Re: Sharon you said it perfectly

Sharon W on 4/09/02 at 19:15 (078980)

Dear Tammie,

Yes I really do believe that this board is a 'safe' place to talk about foot pain, and all the unpleasant changes that it brings into our lives. There are many comapssionate people here -- 'angels,' as you call them!

I always thought of showing pain as being like a dog rolling onto her back to expose her soft, vulnerable underbelly to every living creature around. The dog does that when she is being submissive, or else when she really feels safe and TRUSTS all those around her. Because when she does that she is offering an opportunity for others to attack her where she is weakest and SHOWING them the part that is most vulnerable.

Thank goodness for 'angels' who make us feel safe...

-- Sharon

Re: I am impressed

Tammie on 4/09/02 at 19:23 (078982)

Amen to that! You said it all so perfectly I am so impressed as this is EXACTLY how I feel! Thank you so much ! Yes there are a assortment of angels here and forever I will be indebted to them as if not for them I dont honestly believe I would have had the courage to stay in this race! But for all there hard work and much patience I was carried thru the worse and now I am on my own two feet, ok ocasionaly I stumble LOL but I am getting stronger! Hugs to you again and thank u from my heart!

Re: I am impressed

Sharon W on 4/09/02 at 19:25 (078983)

Tammie,

You know that you are one of MY 'angels,' don't you?

-- Sharon

Re: Friends and family

wendyn on 4/09/02 at 22:51 (079011)

Obviously this is something that most of us find difficult to deal with. After dealing with this for years, I've found that it helps to have pre-planned ways to deal with questions and comments....

1. For strangers who comment on my ugly shoes or limp, I usually have an off the cuff remark and I change the subject. I do not dicuss my condition with people I don't know - it's really none of their business. I'm not rude to them - but it's not something I feel obligated to talk about.

2. For friends and coworkers - I keep answers very simple, and I don't go into detail. I don't look for sympathy from them - but I also don't feel as though I them any apologies. If people really want to know, I will give them a basic explanation and let their interest and ability to understand guide how much I say. I am long since past feeling obligated to apologize for the restrictions I have to live with. Generally I try to keep a sense of humor about the comments, but that's usually the way I deal with most things.

3. For family, I don't say too much either - if I need to sit, or if I'm having a bad day - I just say so. But, I don't expect them to really 'understand' - they can't know what it's like unless they've been through it. If I need to just vent and complain - I come here...

Fortunately for me, I have a pretty understanding family. If you're having a lot of difficulty with your family being angry with you, it may help to go for some family counselling to find ways to cope with what's happened. It can be a really big adjustment for everyone.

Re: GREAT advice, Wendy!

Suzanne D on 4/10/02 at 06:34 (079019)

I admire your ability to so concisely express your thoughts and feelings, Wendy! I 'beat around the bush', as the old expression goes, when I say anything! You seem to always be able to drive right to the heart of the matter and make so much sense.

We would all be wise to take heed to what you wrote. I think I will print out your message to remind me.

I hope you have a GOOD day!

Suzanne :-)

Re: John K -

dave on 4/10/02 at 07:26 (079022)

So what exactly is rsd/crps?

Re: GREAT advice, Wendy!

john h on 4/10/02 at 09:43 (079046)

The only place I really discuss PF to any extent is right here on the board. Unfortunately most just do not understand and you may can get some understanding for a while but that quickly wears off. If I want to whine then I whine here.

Re: Friends and family

Tammie on 4/10/02 at 09:56 (079048)

I agree with you to as I have always been secretive about my aches and pains in life or when i am ill I do not want people areound me and I get that guilty feeling that I should not let anyone know about how weak i am for being unable to hide pain has been a awful guilt trip.

I think part of my troubles have been that I have felt guilty that I have pain and I felt I am not aloud to hurt.

I have not figured out what to say about my heavy limp or my need to sit down and sometimes in a weird spot, oh my is it embarresing but if I didnt I would fall down as it can hurt so much it makes me feel dizy and sick to my stomache. How do you explin this one ? I mean we are talking about in the grocery store or the drugstore at work i have been caught and they thought I fell. I try to gloss over it as it embarreses me but some push as they want answers that I do not have.If it is a bad day and asked I say simply I have had better days and I have had worse I am just thankful I am still here. I then take leave and get busy.

I guess I am a bit different with family, I want them to understand some, most of all I dont intentionaly try to mess up there lives,and that yes the pain is very real, no I dont have a cut or broken bone but even tho they cannot see it there is pain.I just would like them to understand this I dont want symathy or coddled but then there was a recent day with a lot of pain and I went and sat on hubbys lap and cried myself silly and that was a wonderful feeling that he held me and rubbed my back and allowed me to just get it out and comforted me. You see I dont show much pain if I can help it I really try hard not to but sometimes it happens. I think he knows there is something very wrong as I have always hid my feelings I dont cry not very often in front of family it takes a lot .

Wendyn, You have alot of interesting comments I have most likly used the better days and worse from you I believe. It works great and leaves me feeling I am in charge, haha I have a issue with allowing someone telling me how I should feel or trying to beat each others worse pains lol I dont think it can be measured each is a individual so there fore we all have differences. This is a interesting thread! I would love to hear others thoughts.

Re: Friends and family

Sharon W on 4/10/02 at 10:51 (079054)

Wendyn,

I agree, it's good advice. It's more or less what I've done so far -- on those occasions when I've been unable to avoid the situation! But maybe sometimes I AM a bit rude in situation #1 -- when STRANGERS ask, 'How did you hurt your leg?' I'm not really very good at making a joke of it so I often just say, 'I didn't,' and go on about my business. That usually leaves them quite dumbfounded, and they don't ask anything else...

-- Sharon

Re: Friends and family

dave on 4/10/02 at 14:08 (079088)

Wow, i cant believe how much that hits home. I cant even add to that.That is exactly how its been for me. I wish you luck in your recovery.

Re: Sharon you said it perfectly

John h on 4/10/02 at 18:14 (079125)

Well put Sharon! Kittys also do the same thing.

Re: A Description of RSD/CRPS:

Janet C on 4/10/02 at 23:43 (079184)

Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS), is a complicated pain problem. It is characterized by severe pain and progressive physical changes that persist long after the original injury has healed. The original injury may have been as severe as a bullet wound or as simple as a sprained ankle. The syndrome can also sometimes occur after routine surgery.

Victims of RSD usually describe the pain as burning or shooting with extreme sensitivity to touch. For example, an article of clothing rubbing the affected area will often cause severe, extraordinary discomfort.

RSD usually occurs in an extremity (leg and foot or arm and hand), but can occur almost anywhere, including the chest, breast or abdomen. It is impossible to predict who will develop RSD. RSD is suspected when pain and other physical changes persist after healing appears complete and other causative factors have been ruled out.

Stages and Physical Changes:

RSD develops slowly, in stages, over several months or years. Initially the area may appear swollen and feel warm to touch due to both inflammation and spasms of the surrounding blood vessels.

In the second stage, the blood supply to the area diminishes and the area becomes cool to touch. The skin becomes shiny and waxy and there is a loss of hair and skin tone. The pain increases and there can be weakening of the underlying bone.

In the third and final stage, there is wasting of the affected muscles and disabling pain. Left untreated, the area can develop contractures from disuse which can become permanent.

Many Doctors classify RSDS into these different stages. It helps to understand the complexity of the disease. But all the stages can combine with one another, and not everyone experiences the same symptoms, or you may never advance to another stage. This is part of what makes RSDS difficult to diagnose.

Treatment:

Because of the complicated and progressive nature of this potentially devastating pain syndrome, treatment must be aggressive and must focus on rehabilitation as well as pain management. The doctor will prescribe treatment for the causative factors as well as the resultant physical, psychological and emotional side effects.

Nerve blocks are used to break the pain cycle and prevent progression of symptoms. These are most effective in the earlier stages and may need to be repeated several days in a row. Hospitalization for continuous nerve block is sometimes necessary.

Narcotic medications will decrease the pain of RSD but do not impact the underlying problem. In the early stages, it is preferable to use pain medicines that are also anti-inflammatories. Steroids may be prescribed short term to relieve symptoms and arrest their progression. Anti-depressants are used to improve sleep and inhibit pain pathways. Anti-convulsants and oral anesthetic agents may also be helpful for this type of pain.

Physical therapy is very important for pain relief and to maintain muscle strength and mobility. Massage, ultrasound and whirlpool may be employed for comfort, while aquatic or land exercise and mobilization prevent muscle wasting and disability.

The intensity of pain and muscle weakness often make compliance with prescribed treatment difficult for the patient. It is extremely important that all medicines be taken as directed and that exercises be performed regularly despite the pain. Education and counseling related to coping with and managing pain are available and may be helpful. In addition, biofeedback can assist individuals in learning to control blood flow and muscle tension to lessen symptoms.

Re: A Description of RSD/CRPS:

Sharon W on 4/11/02 at 07:18 (079195)

Janet,

WOW! I've been reading up on RSD, but that is clearer and more informative than anything I've come up with. Thanks!

-- Sharon

Re: GREAT advice, Wendy!

Carole C in NOLA on 4/11/02 at 11:58 (079245)

John, whine here all you want; we understand. You really haven't whined much at all, especially considering how long you have been fighting this PF monster.

Carole C

Re: my teens an husband and friends dont understand

Carole C in NOLA on 4/11/02 at 12:06 (079251)

It's not easy to face that reality of being handicapped. Facing it can be a big step in recovery for some of us, though. It allows us to give our feet a break when necessary, which sometimes is helpful for recovery from PF. It also helps with the depression when feet hurt a little less.

Carole C

Re: One more comment

Carole C in NOLA on 4/11/02 at 12:35 (079260)

Wendy, your list is great! I have one peripheral comment to add, which you didn't really put in because it doesn't apply to you.

Some of us are overweight, and my family 100% and very aggressively and openly have 'determined' that no matter what the doctors say, my PF is completely due to my overweight and that nobody ever gets PF for any other reason. Therefore, you see, according to them it's my fault and something I should be ashamed of. That's not true, but that is the attitude they have taken. Overweight is considered very shameful and wrong in my family and one's weight is considered a measure of one's worth. My big brothers have always teased me (as big brothers do) and in this case they have 'ganged up on me' about my PF and it really hurt. They blame not only my PF on my overweight, but also anything else wrong with me including my arthritis and my multiple sclerosis. My Mom believes them because they agree.

To me, the added burden of being expected to be ashamed of my disability is much worse than any embarrassment over using wheelchairs, and so on. When I was at my heaviest weight, for years, I had no foot problems at all; I only got PF after losing 83 pounds and beginning a vigorous and poorly thought out exercise program on which my doctor blames my PF. He specifically told me very firmly and repeatedly that in my case my PF was NOT caused by my remaining 95 pounds or so of overweight, when I asked him. The reason that it was caused by my new exercise program and not caused by my overweight is that it came on very suddenly, last September 22nd.

I have had great success in dealing with this by telling my brothers that since they already know it all, that I will not be sharing any more information with them concerning any aspects of my health including my arthritis, my multiple sclerosis, my overweight, and especially my PF. Since none of my family live close by, that's fairly easy to accomplish. If one of them asks or hints about my health in one of our 'round robin' e-mails, I just ignore that sentence and comment on the rest of it in cheery and friendly fashion.

They aren't bad people, but I can't get support from them (so I get support here instead). They are intelligent and well read, but they have strong opinions and see what they want to see when they read about PF. Oh well! I can accept that they are not perfect when it comes to empathy and understanding. They are lots nicer than some peoples' relatives.

Carole C

Re: One more comment

Sharon W on 4/11/02 at 13:16 (079276)

Carole,

I, too, am overweight (OK, make that 'obese') and I know it contributes to my foot problems. But I also know that it did not CAUSE them. The only sib of mine who knows anything about this is my sister, who I thank God for every day. But my best friend, the one who is handicapped, constantly talks to me about losing weight and sends me books for birthday and Christmas that are really 'hints'. She isn't nasty about it, but she also isn't telling me anything I didn't already know! I have read some of your posts on this subject and I know you will understand when I say, the immobility (not working anymore, etc.) and boredom forced on me by PF and TTS, combined with effects of steroid injections, has led me to GAIN quite a bit of weight, not LOSE it, since I was diagnosed. I am not proud of this, but I've been trying to cope as best I could...

Anyway, I wanted to say how much I admire your achievement (the weight loss) -- congratulations on your success in this very difficult task!

-- Sharon

Re: One more comment

Rich on 4/11/02 at 13:20 (079277)

Isn't it amazing how some siblings are NEVER wrong in our parents eyes? This is such a chore to deal with! I think they should have been congratulating you on your efforts to lose weight and to exercise and to offer encouragement for continued weight loss, not to mention sympathy when you injured yourself. It is so easy for someone else to place their admonitions on us but they never seem to receive!

Hang in there! Only YOU can live YOUR life!

Rich

Re: One more comment

Carole C in NOLA on 4/11/02 at 14:02 (079287)

Thanks, Sharon. I still have my work cut out for me as far as weight loss, but Weight Watchers plus cutting way back on refined sugar seems to work for me so I have hope. I agree TOTALLY about the immobility and boredom causing weight gain. I gained quite a lot after I hurt my knees and then got arthritis in them and lost my mobility. Even though I kept attending Weight Watchers I wasn't able to lose any when my PF was bad, but now that I'm feeling better I'm ready to tackle this again. Wish me luck! :)

Carole C

Re: One more comment

Carole C in NOLA on 4/11/02 at 14:06 (079290)

Yes, that's true. And I know my brothers well enough to know they would never truly mean me any harm. On the other hand, they are in their fifties also and I doubt they will ever change much at this age. So, I just got really firm with them and I refuse to discuss my health with them any more. It seems to work, and it's 'the punishment to fit the crime' because they are really pretty curious about it now. (grin) See? I'm as awful as they are. We just torment each other terribly sometimes! LOL

Carole C

Re: One more comment

john h on 4/12/02 at 09:11 (079403)

Sometimes the weight gain comes because of PF rather than PF because of the weight gain.

Re: One more comment

Barbara S. on 4/12/02 at 09:43 (079408)

Amen to that I have gained 25 lbs since aug,2001 when I had to stop walking. I walked 2miles in afternoon and 4 miles with my dogs when I got home from work. My poor dogs also gained 10lbs. I bought a Vision Fitness semi-recumbent fitness cycle. End of Dec,but my foot was getting worse and worse and it seemed the rotation was aggravating my ankle area. So I haven't been riding. I started to do just 15 min morn, noon and night instead of 50min at once seems to work a little better.

Re: Weight loss efforts and PF

Carole C in NOLA on 4/12/02 at 09:45 (079409)

Yes, I can sure see how that could happen. I tried my hardest to stick with Weight Watchers throughout my PF, but as you know I was pretty depressed for a while there, and resting constantly too. So, I have only managed to maintain my weight. I guess I should consider that to be a success, under the circumstances. I am utterly in awe of people like Mehatmelissama who have actually LOST weight with PF. They prove that it's actually possible, though not for me at that time.

Speaking of weight loss, what a relief! I weigh exactly the same this morning (to the 0.2 pound) as I did before I went to sea. I kind of pigged out on the ship and so I am amazed and happy about that. They had about 20 flavors of Bluebell ice cream (my favorite brand) that was available to us at any hour, with chocolate syrup, along with cakes, pies, and lots of other foods. Mealtime entrees were outstanding and pretty fattening too. The chief scientist kept bringing us large quantities of fresh buttered popcorn while we watched videos, which really hit the spot but it wasn't the low cal kind.

Maybe I was able to maintain my weight because of the additional exercise due to the rocking of the ship, when trying to just stand or walk. At any rate, I'm back on Weight Watchers now and I mean business! LOL! We started a new 'At Work' ten week session while I was gone and I think I can start losing again now.

Carole C

Re: One more comment

Carole C in NOLA on 4/12/02 at 10:17 (079423)

During the past few weeks I have just started again with my recumbent bike, which is my favorite form of exercise but which also actually caused my PF. When I found that out from my doctor, a couple of months after my PF started, I stopped my cycling completely for several months and tried to rest constantly and limit what I ate. That was difficult due to the depression that comes with PF. Now that I'm mostly healed, I am beginning my recumbent bike again very carefully and I know some of the things I should NOT do on it. LOL

Here's what helps me (and thanks to John H for some of these tips):

1. Turn the tension down to zero
2. Make sure that my knees don't completely straighten at any point.
3. Wear the shoes that seem best for my PF
4. I make sure that my feet are placed correctly on the pedals and that my feet and legs are moving properly and lined up straight forward like they are supposed to be, and not 'slopping' around doing weird things at angles. Also the angle of my ankles should be correct, and I even try to cycle with my back fairly straight and not leaning to one side. Basically I try to ride with perfect form, as though I was being filmed for an instructional video on cycling.

I wear my custom orthotics when I cycle, in my tie-up SAS shoes. Cycling in a somewhat loose sandal like a Birkenstock is not a good idea for me either, because it moves around on my foot and so it does not constantly provide support while I cycle.

So far, so good, because it hasn't aggravated my PF so far. You probably know more about this than I do, because I am not riding as far as you yet. I started at only 0.1 miles per day and before I left to go to sea, I gradually worked up to 1.1 miles in 5 minutes. Since I didn't ride for a week, I'll back off a little and work back up to that. My next goal is two five minute periods like that, one in the morning and one in the afternoon.

Carole C

Re: Friends and family

Diane O. on 4/16/02 at 11:44 (079831)

I can really relate to what you posted. I feel at time that I am sick of myself yapping about PF. Everyday my mother calls me and asks How are your feet today and lately I just say OK. I know she means well but after awhile it gets old. My family has also made comments of my weight causing my PF and I would give them every other cause factor and deny it had anything to do with my obesity. I feel that this PF has actually made me take charge of my life and my need to shed some weight but at the same time very difficult to become more active when your feet scream everytime you even walk to the car let alone a gym. I have started swimming and find it to be excellent for me minus the discomfort of getting to and from the pool. Everytime I see my co-workers they ask how Ièm doing and I used to get into a lengthy discussion but feel that I sound like a complainer and a broken record. At times I feel I should post my progress or lack there of on the BB at work. Testy, Testy. I really donèt want there sympathy but just there understanding that this is REAL. I have found a great support group out in cyber-space, I am so thankful
Diane O.