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Hi ya'll .... I need some help

Posted by Pam S. on 7/13/03 at 21:54 (124347)

Hi friends:
I have been gone and busy getting daughter off to camp. I have NOT forgotten you all.

Here's the deal. My tts seems to be coming back. Had the release in 99 and lately that foot has been burning like crazy again. I am so worried. I wrote a question in ask the foot drs. I hope they respond.

Frankly, I do not have the energy to go back to the dr about this. I am just so sick of it. Maybe they would increase my Neurontin since I only take 400. The compression sock has helped alot. Maybe I am not wearing it as much since it is summer. I was GREAT on vacation and even hiked some very carefully and felt great the next days.

I am still getting the myofascial release and my left foot is pain free. Now the right one that I thought was CURED is flared like crazy.

What do you all think. I did the contrast baths today. Helps for a bit.
I know you all know how depressing this is. It is really painful. I do not really want to take more meds but I am willing. What about the ultram? My sensitive tummy cannot tolerate too much like Vioxx. I am a difficult patient with the fibro and all that. Maybe it is my fibro acting up. I do feel fatigue.

Thx for listening. Hope all is well with everyone and summer is going well. We Finally have some nice weather in the Midwest. Warmly, Pam

Re: Hi ya'll .... I need some help

BevN. on 7/14/03 at 06:41 (124365)

Hi Pam S.,

If it isn't one thing with us it's another thing , right? I am so sorry you are on this route again. I hope the doctors can help you out. As you say , could be the fibro acting up from the hiking and the extra effort you were putting out the last several days. Maybe some extra rest and you will be fine , think good thoughts :) We wait soooooo long for this nice weather , then we try to enjoy it and then look what happens, right :( Is life fair or what :-/ Take care friend and I hope you are feeling better very soon >:D< Bev

Re: Hi ya'll .... I need some help

Kathy G on 7/14/03 at 10:24 (124382)

Hi Pam,

I am so sorry to hear that the TTS is acting up. As you said, maybe you overdid it on vacation. The problem with overdoing it is that we don't know we've overdone until we've done it! And these conditions take a day or two to react, so the day after you do something, you may be fine but two days later, you may feel pain. Very frustrating, indeed.

If it's your Fibro, I don't know what to tell you although I have the condition, too. As I've said, I haven't read much about it and the fact that I've been diagnosed with it is just giving a condition I've had for years a name. In the past, I just thought it was 'Kathymyalgia' now they tell me it's 'Fibromyalgia'. My niece, who suffers from it, says that she has flareups of it, however. She has all these crazy dietary ideas and thinks it's when she eats soy or something that it acts up but I wouldn't recommend going that route.

I'd say the best thing to do is to treat your TTS as you did when it was active. I don't know that much about it but you must be an expert on it! The contrast baths, resting and the compression sock seem to be what work, right? As for the neurontin increase, if it were me, I'd wait a week or two and see how I was. If there's no improvement, then I'd call the doctor and ask about an increase in doseage. If you can get by with the 400mg, it would be better because of the side-effects.

You said that Vioxx bothers your stomach? That's too bad, although I don't honestly know if it helps TTS much and it is not definitely known if it helps Fibro. Do you take amitriptyline for the Fibro? Twenty milligrams at bedtime seems to be a tried and true remedy. The reumatologist I went to seemed very knowledgeable about Fibro and he said there were four drugs he prescribed: valium, 5 mg., some type of muscle relaxant, amitryptiline, 20 mg., and Zoloft, 50 mg. Perhaps, if this is a Fibro flareup, you could discuss these drugs with your doctor.

As for the Ultram, he gave me a prescription for it and I was sure it was going to help my arthrtis, PF and muscle aches. Alas, it does nothing for me. That doesn't mean it wouldn't help you. Most people with these conditions are helped by it. It's main side effect seems to be constipation and that can be counteracted. What's nice about it is that it doesn't knock most people out and you can drive while taking it, etc. Again, that's an option to discuss with your doctor.

I hope you start to feel better soon. It is truly discouraging when we have a relapse. Keep us posted and get well!

Re: Hi ya'll .... I need some help

marie on 7/14/03 at 12:16 (124387)

I am certainly no doctor but I take 900 mg of neurontine and 50 mg amitriptyline. I found I had side effects from the neurontin when I was on 400 mg of neurontin. The slight increase in neurontin along with the amytriptyline made the difference. Are you using an orthotic? This low pressure system that moved throughthe midwest in the last week affected me as well.

Hope you get to feeling better soon!

Best wishes, marie

Re: Hi ya'll .... I need some help

Sharon W on 7/14/03 at 12:17 (124388)

Pam,

Believe me, I understand what you mean about just 'not having the energy' to go back to the Dr. on this. Sometimes going to doctors for these things can be VERY frustrating!

I would suggest you ask around and see if there is a podiatrist or a physiatrist in your area that other people recommend, rather than go back to the same ortho surgeon who operated on you before. Sometimes a new, fresh point of view on these things can be like a ray of sunshine!

It does sound like, for now at least, you probably do need either a higher dose of Neuronin (400mg per day is a VERY low dose!) and/or you need something you can take just when it's really burning and causing lots of pain (Ultram - tramadol - might be a very good drug for that).

In the meantime, contrast baths are a good idea; they always seem to have helped me feel better for a little while -- I just wish the relief from them would last a lot longer!

My thoughts will be with you; I hope this is only a temporary setback and you'll be feeling better very soon, Pam!

Sharon
.

Re: Hi ya'll .... I need some help

john h on 7/14/03 at 13:56 (124405)

Ask your Doctor about a low dose of Klonopin/Clonazepam. By low dose i mean 1mg. With a dose this low no chance of addiction and it is widely used for various pain conditions,anxiety, and even for seizures.

Re: Hi ya'll .... I need some help

Pam S. on 7/14/03 at 14:02 (124408)

Dear Friends:
I just drove my daughter to camp and I could not wait to get home to see if you all had answered!!! Sad right, get a life, Pam!!!!

No answer from the foot drs. They do not seem to answer me too often. I think I am too wordy. I just wonder ladies, WHY do you all think this condition could come back. I would seem if they RELEASE the nerve that would be a done deal. Is it a scar tissue issue. Maybe I could get ultra-sound for that. I do not think my insurance will pay since I have had the myofascial (which did help the fibro and my left foot) and all the work for my bladder pain. Brother, how did I get myself in this shape. If you knew me you would never know because I fake it so well!!!!!

The meds I am on are Klonopin .75 (a cousin to Valium), Lexapro (newest version of Celexa and I split those in half, half of the week and a whole one the other half. This has helped me sooooooo much with my fatigue and I guess I was depressed because I am less anxious and have more pep. The Neurontin and yes the psy. I see really likes this drug and she feels it is very helpful for nerve pain. She is not wild about Elavil because of the side effects. I am very sensitive to side effects. I can ask her because I see her next week. My rhumatologist sent me to her and I love her. He just did not feel qualified to prescribe all these meds. She has a fabulous reputation. I can sleep well on all this for the first time in my entire life. My fibro pain in really not that bad. BUT

I have read that people with fibro can have burning feet. I think we have discussed this before. Truthfully, I have been all over the place, I am out of foot drs. I will talk to the myofascial people tomorrow. They believe they can release all that ails you. I am getting tired of driving there too.

I really do not want another needle EMG. If it showed TTS again what would I do about it anyway. Do you blame me for not wanting to get the surgery AGAIN> I would be nuts. I will just do what it takes to stay comfortable and hope things do get better. I do worry alot. Sometimes I read all these posts and they make me worry more. But I do sometimes want to chime in and help someone.

My good friends brother just had that lazer surgery for his eyes and now he is legally blind and has to have a cornea transplant. Three families here lost children in that porch collaspe. OK ladies. I just want you all to tell me I can live with a burning foot and how things can be so much worse. Who has a perfect life? Sorry this is so long. I got carried away but you all are such great therapy. You are all so smart and funny. Warmly, Pam

Re: John: I just saw your post

Pam S. on 7/14/03 at 14:07 (124409)

John, YOU are funny and smart too. It is not just the ladies. I have been on Klonopin for many years. It is so helpful I could not believe it. Many of my friends with fibro take it. I worry about addiction but I do not require more of it so I feel I am not addicted.

I could try a little more Neurontin tonight. I have the 100's to play with if I need to. I have this mind set to try to take as little meds as I can get away with. Thank you for your help!!!

Re: Hi ya'll .... I need some help

BevN. on 7/14/03 at 15:48 (124419)

Pam S,
This fibro thing , is it where everything kind of aches ? It seems as if every part of me aches anymore , if it dosen't tingle, it aches, or burns, or just plain hurts . I hope this new doctor I am seeing in August will run some labs so maybe we can find out some stuff. It all just started with PF and now it has gone to all of this other stuff :( Maybe it is just all in my head :-/ Oh, can't be, the PF is in my feet :> I am so confused anymore I don't even know what is up and what is down any more :) Oh, well, have a good evening :) Bev

Re: info for Bev.

Pam S. on 7/14/03 at 16:14 (124421)

Dear Bev:
I am sorry you are struggling so much. There is no 'test' for fibro. It is basically a rule out everything such as MS, Lupus,Rhumatoid arthritis types of illnesses. This is not to say it is a catch all diagnosis, there is new compelling research that shows that this syndrome does exist.

Yes, you have aches in several points throughout the body. It does seem to come and go and weather does affect this. Sleep problems are common also. There are MANY books on this disorder. I have noticed people with this seem to have one part of their body which is worse that others such as their back. In my case it MUST be my FEET!!! Some people have irritable bowel or bladder with this also. You just feel sort of mildly flu like but you are not sick. It is hard to explain.

This is not easy to deal with but if you do have this you CAN deal with it. I could go on all day but you really have to have to motivate yourself to exercise, stretch, eat well. Meds really help to. It just can take a while to figure it all out...what works for you.

To tell you the truth, my all started with my feet too. My arms hurt too.
You are on the right track. Just be patient, really patient. It really takes a long time to figure it out. Hopefully, you have a good dr. who will know what to rule out. You might want to read up on fibro before you go. I am sure there is alot on the web. I have been so into foot things I have put the fibro info on the back burner so I am not sure what the best books are now. Are you taking any meds now? Antidepressants helped more than I could believe. Are you tired? Do you get any exercise? Moving helps alot but I know it is hard.

Ask me anything you want. I know Kathy has this too, and maybe Marie. Hope this helps. I want to be encouraging to you because I have really gotten better and you will to. Take care, Pam

Re: info for Bev.

BevN. on 7/14/03 at 20:11 (124430)

Hi Pam,

How many years have you been dealing with all of this? You used to work as a social worker at one time, didn't you , or am I mixed up again? You quit working due to all of this health issues? I had to. The meds I take for the PF are Topamax 100mg. at night , Ultram , Mortin. The only exercises I do are the Winsor Pilates video tapes , I have the set of 3 . They are all easy and do not require me to be on my feet . I house clean on my hands & knees so that is exercise too, right? I do get really tired out very easy , but that could be just from pure depression too , as that is common with any chronic illness.I am not on any meds for that. I have been trying to deal without it. I am on three heart and BP meds too and vitamins (inherited all my parents bad health). So that is my story and I am stickin' to it. Pretty boring :D
You get a good nights rest and get yourself feeling better , okay ;) Bev

Re: info for Bev.

Kathy G on 7/14/03 at 22:27 (124443)

Bev,

My mother and my two sisters suffer from depression. One sister is bipolar and my mother was what is called unipolar. Both sisters are recovering alcoholics, which I believe was a result of their depression.

Because of my family circumstances, I am very aware of depression and what it can do to people. Don't let depression go! I cannot stress that enough. It is simply too dangerous to 'try and work it out yourself.' If you are depressed, you aren't able to get better without the help of medication and sometimes counseling. It's not a sign of weakness. In fact, to my way of thinking, my one sister who is going for counseling and is taking appropriate medication is stronger than my other sister who is sticking her head in the ground and pretending she has no problems.

Sometimes depression has no root cause; it's a physiological condition as is the case for my family. Sometimes it's brought on by a traumatic event in one's life. There are numerous causes but one that is always near the top of the list is chronic pain. Heaven knows that you have a reason to be depressed.

Please, please, talk to your doctor about going on an antipdepressant. The side effects are nothing compared to the positives. I, personally, am taking 50mg. of Zoloft daily; not because I suffer from depression as so far God has spared me that family curse, but because my Primary Care Physician believes that anyone entering menopause and suffering from chronic pain should take an antidepressant. If one of my children showed signs of depression, I would drag them, if I had to, to a doctor to get the proper treatment. (Actually, I did just that with my sister and my mother, but that's another story!)

You are a dear person, Bev, and you are having a difficult time right now. You need to give yourself every edge you can in this battle against whatever is causing your chronic pain. Please don't let this depression go; it will take your life over.

I'm sorry if I am preaching but this is a subject I am painfully educated bout. Depression is a disease that needs to be treated just the same as PF or heart disease or diabetes. You need to get that treatment immediately.

Re: Amen, Kathy, well said

Pam S. on 7/14/03 at 23:22 (124449)

Bev:
What Kathy has just said I would have never paid any attention to last year. One day I realized I was not getting dressed until noon and never wanted to do anything. (Not like me) I never thought I was depressed until I went to see this pharmacologist, who is a psychiatrist also of course. I think I mentioned this to you in my earlier post. She just flat out told me that 'people with chronic pain issues get depressed'. I said oh, well maybe you are right. I felt better within a few months. It was striking. Depression really sneaks up on you. I have no depression in my family and I am really an upbeat person. BUT....anti-depressants help boost serotonin which in turn helps you cope with pain and all you are dealing with.

I know you have alot to think about right now but put this on you list of things to talk to your dr. about. I know this all does not happen overnight. It took several years for me to find this woman who picked up on the fact that I could BENEFIT from an antidepressant. Lucky you. Bev. You have all of us giving you the heads up.HA! I wish I had found this post back in 99. Warmly, Pam ps write back and tell us what you think

Re: To Bev, again

Pam S. on 7/14/03 at 23:36 (124450)

Sorry Bev,
I did not even see your post until I was re-reading what everyone said earlier. I am up too late as usual. I really do not rest well these last few nights with this burning.

I have been dealing with fibro since 99 AFTER I had the TTS release I really fell apart. Pain everywhere. I do not want to bore you all with all that story. I was a social worker after college and masters in the field too. My husband and I moved around a bit with his career and I stayed home with my two daughters. I have been very blessed to be able to stay at home. I have done alot of volunteer work, PTA, you name it. After the foot surgery and resulting fibro, I was completely unable to do much of anything for about a year. So, I did not have to quit a job, just my active life. I felt I contributed alot to the community. I really got depressed because I did not have the energy to go out and do anything.

I like it that you are doing the pilates. Be careful with your neck on some of those exercises. I really like yoga. You might try a beginners video. I like the stretching aspect of yoga for my back and legs. As long as you are moving that is good. It is tempting to lie around and that is the worse thing you can do.

Does the ultram work for you? I wonder if the Topamax is helping you?
There are so many great antidepressants out now that have so few side effects. This Lexapro I am taking has had no side effects for me and I would have them believe me. Sorry this is so long. Always know you can ask your dr. if you think something is not helping. Ask Ask Ask Pam

Re: info for Bev.

BevN. on 7/15/03 at 10:33 (124465)

Kathy and Pam,
I do understand about the chronic pain and needing an antidepressant, but my husband thinks it is a sign of weakness and I do not need it. He does not understand all of this stuff , he is the greatest husband but he does not agree with some things . I guess it is because all of my doctors can't agree on things either. Every doctor tells you something different and that really gets his dander up.
I just got up a while ago , I could not sleep either last night due to the foot pain, and the pills did not work. I finally took a Tylenol PM about 3:00 and I slept till 10:00 AM :) The Topamax has really cut down on the burning and tingling pain tremendously . I can't believe how well it has helped :) I believe that last report that Sharon shared with us , it does help. I could not take the Neurontin as it left me with terrible brain fog ( as if it could be worse haha) .
Having a beautiful rain storm here today , dosen't matter as I don't go anywhere anyway 8-(PIPE) time for ~o) Have a nice day girls :) Bev

Re: info for Bev.

Sharon W on 7/15/03 at 11:25 (124473)

Bev,

50mg of Elavil every evening would help you sleep, and it's a common treatment these days for neuropathic pain so it could be presented to your husband that way, not as an antidepressant. And if it helps with the depression, too... well, there's no reason to bring that up to your hubby, is there? (Besides, Elavil is really CHEAP, not like Neurontin or Topamax. So he wouldn't have a lot to complain about, there.)

Sharon
.

Re: Bev

marie on 7/15/03 at 11:31 (124475)

Bev,

I know that you care deeply for your husband and his opinions, however it is your body and only you can make the decesion to seek counseling and perhaps aan antidepressant.

My mother was dx with schizophrenia and a persicution complex. My father was from the old school and thought her dx should be hidden. He never encouraged her to get help. As a result our family suffered horrendous damage. My mother spent most of her life on valium or Zanax. My father became bi-polar as many elderly do. I know and understand mental health issues.......my only advice is please don't suffer needlessly when help is so easy.

On fibromyalgea...ti is not in your head. I go to a fibro message board and we have found that we have some commonalities.....like all of us had MS screening and all of us had MRIs that showed tiny lesions on our brain unlike the lesions seen in MS. I take neurontin and a very small dose of elavil it has worked for me. I still get affected by the weather but it is not as bad prior to my medication. I feel like my old self. I am happy and am well.

Bev...you are a dear sweet lady who I admire and am grateful you come to this message board. Please be happy and well. You're in my thoughts.

marie

Re: Bev

BevN. on 7/15/03 at 12:25 (124478)

Marie,
Maybe that is why I was soooo sore yesterday, it is raining a good one today . Thanks for the advice, I will talk to the doctor at my appointment in August .The nurse at his office told me that he is a physiatrist , M.D. but he does not prescribe meds, so I do not know about him :-/ I guess I will find out when I get there. Then I will have a follow-up appointment with the D.P.M. after that. Boy, what a mess of doctors we go through. Do all of you go through this too :-/ What is so hard to figure out about us :-s No wonder our families get tired of all of this run around ~ for better or worse ~ right :x

Re: Bev

john h on 7/15/03 at 13:17 (124480)

I am with Marie on this. I never advise my wife on her medical decisions unless she ask me what I think and even then I always preface it with it is your body and get all the best advice you can and then make your decision. I think I saw on TV this week that there are probably over 20 million people who have untreated depression. This is a very treatable disease and with all the new medications can be brought under control. Most family Doctors will treat depression these days with such meds as Zoloft. Almost anyone with chronic pain experiences depression and some can deal with it and some need some help. Start with your family Doctor. Tell him right up front how you feel and you need some help.I would guess more people are treated and helped for depression with meds rather than talk thearpy these days. Actually this board is a form of talk thearpy where you can just belly up to the bar and say 'I am depressed' and there is someone who will hear you and respond. Family members are not always the best ones to advise you on these matters amd as many of you know they sure do not understand what PF does to your life.

Re: Bev

BevN. on 7/15/03 at 13:25 (124482)

This board is the bestest therapy for so many of us I am sure. Of course most of you out there 'have a life' , and a great one at that. I am pretty much in limbo now , so this board keeps me sane and gives me friends to yack to , get help from , and advice from . Some day I hope to 'have a life ' again too , until then , thanks to all of you for helping me along the way :) John, do you still fly? You sure have led a facinating life :)

Re: To Bev, again

BevN. on 7/15/03 at 14:50 (124490)

Pam,
Did the TTS surgery cause the fibro ? Does chronic pain cause fibro ? Is that what caused you to get the fibro ?

Re: Bev

john h on 7/15/03 at 17:11 (124502)

Bev my only flying now is in my dreams. Probably all of us out her Bev are pulling around some baggage so get out there and get a little help. Things have a way of getting better but you have to help it along some times. I look back at all I have done and still wonder how I did all I did. I had my dream boyhood job and traveled the world. A lot of luck and some planning and effort along the way. I still find wonderment in meeting great people on this board from Africa to Australia to Europe. I have met a number of the board members in person like Judy,Nancy N,Barb Dr. Z and others in New Jersey and Dr.A om St Louis. I hope someday to meet in person some of the others. Hang tough because there will be light at the end of this tunnel.

Re: To Bev, again

john h on 7/15/03 at 17:14 (124503)

I do not think there is any known cause of Fibro or any real diagnosis except by the power of elimination. Lots of books on this subject. If you live near a Barnes & Noble go in pull one out and sit in a comfy chair and read. No read to buy it. Soak up the atmosphere and a cup of tea or coffee.

Re: Bev

BevN. on 7/15/03 at 18:08 (124506)

john,
I do get a lot of help, john , lots of doctors , lots of opinions , lots of run-a-rounds ,so more doctors and more opinions . I have another appointment coming up soon so I am getting close to the end I hope . I have had therapy and all the route twice, so I have been working hard at getting diagnosed and finding help with my problems. I read everything I can so I try to keep informed , the internet has about anything one could want on everything , not the atmosphere or the good coffee though ;) I have gained so much knowledge from all of you here also that I could never thank you all enough. The doctors never help us out as you all have. I am so thankful every day that I found you all . I know I am a pest , but someday I will be cured and out of your hair , I promise :D

Re: Bev

marie on 7/16/03 at 20:57 (124582)

Bev,

I hope that this pain will all be a faint memory to you some day, but don't you dare ever get out of our hair. We need you just as much as you need us.

best wishes marie

Re: Bev

marie on 7/16/03 at 21:02 (124583)

John we're going to have to get you up to Indiana some day soon. I know my family would love to take you flying. Don't give up your dream...once a pilot always a pilot.

I am not fond of flying in small planes myself. But my hubby, sons, father-in-law are up frequently. My hubby frequently hangs out of planes to do aerial photography. I prefer not to know when he is doing this.

marie

Re: The message above is for John

marie on 7/16/03 at 21:03 (124584)

Smile!

Re: Bev

john h on 7/17/03 at 10:01 (124616)

Since you have the Pacers,Colts,the Fighting Irish I could probably find some things to do.

Re: Bev

marie on 7/17/03 at 18:48 (124665)

And don't forget the Indy 500....of course there may be some who would debate that as a sport.

marie

Re: Bev

john h on 7/18/03 at 10:26 (124715)

The 500 sure qualifies as a sport in my mind. It takes some strength and conditioning to keep those cars on the track for 4 hours aside from the danger. It is supprising how bright many of these drivers are. They are generally not red neck beer drinking womaninzers.

Re: Bev

marie on 7/18/03 at 13:03 (124734)

I consider it a sport but I think they do like beer and pretty women. Rednecks no. Most are family men...at least the good ones are.