Home The Book Dr Articles Products Message Boards Journal Articles Search Our Surveys Surgery ESWT Dr Messages Find Good Drs video

To Tammie

Posted by Laurie R on 2/11/02 at 22:44 (073394)

Dear Tammie , I wanted to wish you luck at your appointment tomorrow .. I think this is a great start on your path to getting the medical care you so deserve .... Please if you have time can you let us know what your new doctor had to say .... Much love , Laurie R

Re: Tammie, good luck at the doctor's!

Carole C in NOLA on 2/11/02 at 23:34 (073395)

Tammie, good luck! We are keeping our fingers crossed and I think that the new doctor will be able to help. He sounds very good and I hope you are on your way to happy feet at last!

Carole C

Re: TY I am verry nervouse

Tammie on 2/12/02 at 11:12 (073430)

Thank You all! I am very nervouse I must say, my stomache is in knots and I fel queasy, now could be the meds but sure that it is the start of another search and revealing my self as one in pain! I seem to hate to say this to a 'outsider' as I fear the report that it is mind related if you understand what I am saying. My foot is being its normal self so that is good I was worried that it would majically disappear when I got up today but no it reminded me that it is still with me! My wonderful sidekick hubby who not very understanding at times is going to be with me! Which is good and bad. I need privacy when I reveal all and it is harder when there as I dont want him to be aware I am not as strong as I appear sometimes. But then the flip side is he can relate to him if I clam up, at least get me started by cuing me. I have my pad of paper with me with lots of notes.I just hope I can give it to him if needed!

Count down now it is almost time to leave for my apt. and needed to write or talk the nervouseness down some so I can think not blank out. My wishes for all my friends is that they see the sun at the end of there pain filled tunnel! Have a good day and thanks for being here for me!

Re: Tell us all about it!

Carole C in NOLA on 2/12/02 at 14:43 (073465)

Tammie, how did it go? Please give us the 'play by play'. We are all hoping that this doctor will have some good ideas on what to do next about your feet.

Carole C

Re: With pen in hand !

BrianG on 2/12/02 at 14:45 (073466)

Good luck today Tammie, hope you get some answers...B

Re: To Tammie

Laurie R on 2/12/02 at 14:56 (073470)

Hi Tammie , Yes we are all waiting to hear how your appointment went .... When you have time please let us know ..... I have been thinking about you all day .

Much love , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Tammie on 2/12/02 at 15:15 (073475)

Well I need to come here to my friends, more then ever i need SOMEONE to understand Me and what I feel!The appt that I waited for with anticipation of finally getting on my road to finding someone to help me was a total disaster!I ended up crying my heart out and disagreeing with the dr. and telling him I dont think I can work with someone who does not want to hear what I am trying to say, and furthormore thinks this is in my head! He feels I have something called rsd and that it means my body is creating more pain because I am not fighting it off and I need to do more scar massage as to touch lightly cause pain, and that I need to do more aggressive stretches and exercises and quit walking funny, so forth get on with my life. I am quoting this from my hubby as he was more in control of his feelings and heard more clearly as I was realing between anger and sadness and hurt.He did not want to hear what I have done prior to any surgerys did not want to hear about pain . He said the pain may be real it is the body reacting to the surgery.Its the condition of rsd. I am so upset about everything I can barely write thru my tears. I want to give up and throw the towel in . All that I fear is coming a reality can this pain be in my head, How do I walk normal when it hurts me how do I (forget when my foot feels like a hotbed with hot nails or a hot knife inside or on other times cold as ice. How do I explain to my head that the prickly feeling I feel in my ankle and arch area is not real, or that what I feel as a shock into my big toe or up my calf is not real? How do I sleep when my body says it hurts weather I want it to or not.

He did xrays, and all he wanted to tell me about was my big toe has some halex??/ something or another which can be fixed surgicaly and has a spur there and when my toe flexes it hits the spur which may be causing my foot change and it could be surgicaly corected but I have had to many surgeries already. I ended up walking out with telling him I dont think we can work together as I feel pain and you are telling me to continue and do more on my feet and to forget the pain as it is that rsd which means the pain is brought on by my head.I left without a glance back .

My poor hubby tried to tell him things about me and such but he did not want to hear it and said I am being open and sometimes we have to be a bad guy and call it as we see it. I am not going to pat her head and tell her I will fix it all cause she has to do it.More pt, and maybe some meds (antidepressants) which I tried to tell him I am on. He says he doesnt know what to think. Please someone do you think I am nuts and it is in my head? I feel like I should just go shoot myself, Dont worry not going to yet. But I feel as tho my guts have been kicked out. I have to sort this out more and get some info on rsd Laurieeeeeeeeeeee where are u? Janet????? I believe you two have it??? I hardly believe that it is all psycological I am sorry no dice with me. Please please I need some help dealing with this . No mri again . PLEASE do not yell at me for seeing him and not big guys, Please not today. I dont know if I can ever go to another dr. period!@

Re: Please I need support badly Pleaseeeeeeeeeee

Shelley G on 2/12/02 at 16:12 (073483)

Dear Tammie,

I am so sorry to hear that your appointment today was such a disappointment. It's very frustrating when you wait so long for an appointment and show up with records, etc. in hand, and then feel as though you have been treated like a hypochondriac. I've seen that same sort of situation with my husband. I'm going to share with you what I say to him; 'you have got to keep trying!!'

I believe you (and my husband) have severe foot pain that you live with every day. I can't see anything when I look at Lloyd's feet that looks any different from anyone else's feet (except for the two TTS surgery scars), but that doesn't make the pain any less real. It is the doctor's responsibility to listen to his/her patient and then attempt to do the best they can for them, and if they do not feel qualified or able to help the patient, they should be honorable enough to say so and provide information, records, etc. for referral to someone who can help. I have heard some really fine doctors remark how important it is to LISTEN to their patients as they know their bodies better than anyone else and can give important clues to what the problem might be. Remember, this is not the only doctor on the planet. There is one out there you can work with and have confidence in. The doctors who post here seem to be very knowledgeable and caring. That tells me that the search for a doctor to help you is not without hope. The good ones are out there.

I know you are tired and frustrated with tests and appointments, insurance, and all that stuff. And I know that being in pain zaps your strength and resolve. But PLEASE DON'T GIVE UP! There is someone out there who can help you; keep looking, keep learning, and keep hoping. I feel certain that all those who post to this board will share with you any information they may have that would help you find the right avenue for treatment. God bless you. Hang in there.

Shelley

Re: Tammie, it's not all in your head

Julie on 2/12/02 at 16:33 (073490)

Tammie, breathe out fully. Sigh if you like. Then breathe in slowly and as deeply as is comfortable: no strain. Do this at least five times.

You are not making the pain up.

It is not all in your head.

RSD is not 'psychological'. Laurie and Janet will be able to tell you more about it.

The doctor was not kind, he did not listen to you, and he did not help you. He was out of order speaking to you as he did. Forget him.

Get a good night's sleep. Then pick yourself up, dust yourself down, and start all over again.

No one is going to scold you for seeing this doctor - but it's a shame you did, because it has caused you such unhappiness. There are good doctors and bad. You drew a lemon. Full stop.

Now cut your losses, let go of what happened today, and continue your search for a doctor who will listen instead of lecturing you, understand instead of dismissing your pain, and help you to heal.

And finally: this is NOT YOUR FAULT. Please believe that.

And good luck with your next step.

Re: Tammie!!! {{{{{ BIG HUGS }}}}}

Carole C in NOLA on 2/12/02 at 17:16 (073503)

Tammie, I don't know much about RSD but I just read a couple of websites on it, after reading your post. The websites did not think it was all in your mind or all something that you have to deal with alone! They said that it was very very important to get early treatment for it from a doctor knows about it.

I just want to say that I believe you completely! Absolutely and without any doubt! I think that doctor has the mental problem, not you!

Some people should never become medical doctors because they have no more empathy than a fence post.

Carole C

Re: Please I need support badly Pleaseeeeeeeeeee

Laurie R on 2/12/02 at 17:18 (073504)

Dear Tammie , Frist I want to tell you how very sorry I am that this doctor was such a jerk .... Yes that is what I feel . If a patient comes in with the pain you have , he should of took the time to talk to you and go over everything to see what is really going on with your foot. I feel so bad , after reading your post , I called my hubby and told him what had happened to you .... He was so mad also ...

I will also tell you your pain is not in your head , none of it is .. Don't let this doctor make you feel like that .

Now for RSD , I can not believe he said that if you have RSD it is all in your head. I have never ever heard of anything like this in my life. Yes I do have RSD and it sure is not in my head.... The pain is real ....

Now I know you are very , very upset now , who would not be if it happened to them . But try to calm yourself down and read as much as you can on RSD . Their are many treatments for it . But you have to have the right doctor that treats RSD . I have two doctors , one is my POd and the other is my pain management doctor . My PM doctor is the one that treats my RSD .

Janet has helped me so much with my RSD and has helped me to understand it .. She is busy today , but I will email her and ask her to read your post so she could reply to you herself .. Their are so many wonderful websites on RSD that have also helped me .

RSD needs to be treated earily on Tammie , it is not something that should wait ....

Their are many different symptoms for RSD , you say your feet get really hot and then really cold , thoes are two of the symptoms , but again their are many more....

I am so sorry this happened to you today , I still can't believe you were treated like this . You did the right thing to leave. I would of also . No one should ever have to listen to a doctor that is like that .

Last week when you saw him with your hubby , wasn't he really nice and said for you to make the appointment ?? What happened ? Also from what he said to you about RSD , it just shows he does not know to much about it , a lot of doctors don't ....

I am here for you anytime , please let me help you and I will do my best to help you ...

Much love to you , your friend ,Laurie

Re: Tammie!!! {{{{{ BIG HUGS }}}}}

Laurie R on 2/12/02 at 17:21 (073505)

Dear Carole, Thank you for posting this . You are so right and also I am so glad you took the time to read up on RSD .It is very complex to understand .. I have had it now for a while and the pain from it is terrible . I have had 4 spinal injections for it also ...Also like I said in my last post early treatment is a must .....

Thank you again , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Suzanne D on 2/12/02 at 20:19 (073535)

Dear Tammie,
I am SO SORRY that this appointment which you had high hopes for ended like this. But perhaps you can look at it this way: today showed that he is NOT the doctor to help you, and you won't waste any more time with him!

Right now I just wish I could do something for you to make you feel better. I am just feeling so badly for you that you had to get so upset and that your hopes had to be dashed.

But, as others have already said, I BELIEVE YOU, and it is not 'all in your head'. Sometimes I think when doctors don't understand, that is just what they say. Know that WE believe you, and don't punish yourself with thoughts that you are 'losing it' or 'nuts'.

This is a bend in the road, and an unpleasant one, but it is not the end. Keep fighting! But for now, just get some rest and leave that for tomorrow.

You are in my prayers.

Suzanne

Re: On RSD

wendyn on 2/12/02 at 21:44 (073548)

Tammie, first I'm very sorry that your doctors appointment went so badly - I HATE IT WHEN THIS HAPPENS TO ONE OF US!

Second, RSD is not all in your head. I'm not sure if that's actually what your doctor said - or if that's the way you interpreted it.

RSD IS an over-reaction by your sympathetic nervous system - and yes, in a way, your body is generating it's own pain.

BUT - that is NOT to say that you are imagining it. The pain is real. The temperature changes are real. If untreated, RSD can eventually cause things like osteoporosis and permanent muscle atrophy - and you can't imagine that all in your head either.

In it's simiplest terms - it is usually a nerve injury that goes completely hay wire.

Remember - I'm just a patient, but let's see if this helps to explain it.

If you put your hand over a candle - the nerves pick up the signal of heat and pain - and they fire off a message to your brain that includes all kinds of information 'OUCH, PAIN, REACT, SPEED UP THE HEART, MOVE THE HAND, THIS HURTS!!!!'

All kinds of things happen between your nerve and your brain - and it's your bodies way of reacting to what those nerves say is happening. You don't sit down and say 'Gee, now let's think about this...what are my nerves saying, is this real - should I feel this pain or not?' Your brain and your breathing, and your heart rate, and your internal thermometer all rely on those nerves to do their job properly - and they believe what the nerves communicate.

Sometimes though - the nerves over react, and even after the inital pain stimulus goes away - they continue to send all the same messages 'OUCH, PAIN, REACT, SPEED UP THE HEART, MOVE, THIS HURTS!!!'.

When you have pain - actual chemical changes take place in your body - that send that message of pain through your nerves to your brain. If those messages are being sent - it causes the same pain to you no matter what the cause. It is not something you can control.

This is why RSD is often treated with nerve blocks - this puts the nerve to sleep for a while, and hopefully it will stop sending the pain messages eventually.

Please understand though - that RSD is a real, physical condition - it is no way a mental condition. But - it must be treated.

When is your next appointment and who is it with?

Do you have an appointment set up with a 'big name' doctor?

Remember I've been diagnosed with RSD too - so I happen to know for sure that that pain is REAL.

I do agree with your doctor that this is likely what you have - and that surgery would not be a good idea at this point, I just don't agree with him on it being in your head - and I'm not sure that I agree with his treatment plan either.

Re: Please I need support badly Pleaseeeeeeeeeee

BrianG on 2/12/02 at 22:48 (073559)

Hi Tammie,

Bad deal! Take an extra pain med tonight and get some sleep. You'll feel a little better in the morning. I look at it this way. The Jerk is probably correct, you may have RSD. So, now your done with him, DONE. Time to read up on RSD, and get a referrel to the Best RSD doc in your area. Like the others said, it's important to get it treated asap.

BrianG

PS I now give you permission to completely forget about whats his name that you met today. You know, the man with no compassion! Life is too short.

Re: Please I need support badly Pleaseeeeeeeeeee

Laurie R on 2/13/02 at 00:17 (073565)

Dear Tammie , I wanted to let you know that I did email Janet and asked her to read the board about your appointment ... She emailed me back and she is not feeling well ... She did ask me to tell you that , she is pulling for you and praying that you will soon get the help you deserve ....

Remember everyday is a new day , we are all pulling for you Tammie , I know today was very hard on you . My heart is very sad for you , please know that we are all here for you and we will help you get through this ..

Much love , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Janet C on 2/13/02 at 01:59 (073569)

Dear Tammie,

I have been pushing myself much too much lately, so I'm really hurting badly now, but I wanted to take the time to write you to let you know that I really care, and you have all my support, and best wishes. And I am so sorry you found a Dr. with so little knowledge and empathy for your suffering.

RSD is a very real disease, and I'm so sorry that you have been Dx'ed with it also, but I have thought for quite some time that it may be the reason your pain is so severe. I've found that many Drs. seem to be uneducated and misinformed about this horrendous disease, and I think it's really a shame that they haven't been taught more about it in Med School. The Dr. you saw also sounds like he needs sensitivity training. But in my experience, most Drs. have huge egos, and are not receptive to learning anything new, especially from their patients.

I truly understand the frustration you feel. But all I can recommend is that you keep searching, until you finally find a Dr. who is sympathetic to your needs. They are out there - however few and far between. In the meantime, please know that we are all here for you, and we know that the pain you feel is real.

Please feel free to e-mail me with any questions or concerns you might have, and I'll try to help you in any way I can.

With Love, Janet
(email removed)

Re: Please I need support badly Pleaseeeeeeeeeee

Dr. Zuckerman on 2/13/02 at 08:18 (073587)

Hi

I may be repeating this because I am on the bottom of this thread. RSD could account for all of your pain. Yes we do have some people on this site Laurie who do have this very painful disease. A pain management specialist is the doctor who usually treats this. The treatment is aimed at trying to keep you moving. Sitting still seems to make this disease worse. So how do you do this when you are in pain. Swimming. biking. sometimes lower back epidural injections can help to relieve the pain cycle.
Oral steriods, valium to help with the anxiety that the PAIN is causing you is very helpful. This is real and this disease is very painful. IT there is any thing that I say or do to help you understand this very PAINFUL DISEASE I am here for you.

Re: Please I need support badly Pleaseeeeeeeeeee

eileenc on 2/16/02 at 09:51 (073882)

Hi -- I had an unsuccessful TT Release in 1997 and live with that pain every day. I too have be DX'ed with RSDS or as they are now calling it; Complex Regional Pain Syndrome, sympathetically maintained.

GO TO A PAIN CLINIC NOW!!! Ask for something like Neurontin, Topamax, or Zonegran. Nerontin kept me from dying. You may also need something else -- I ended up on Vicodin. I probably should be on an anti-depressant too as I hear that certain ones can help. It is unfortunate that drugs are necessary (I rarely took anything before my sprained ankle decided to 'scar up' on me), but they WILL help.

Maybe your family doctor can prescribe something like this until you can get in to a pain clinic. I KNOW what it feels like -- you must get the pain issue addressed before you try to do anything else with the foot.

Re: Please I need support badly Pleaseeeeeeeeeee

Ptrust on 2/23/02 at 22:23 (074886)

Can some one please tell me what RSD Stands for and where I can learn more about it.
I had TTS sugery almost a year ago. I still have pain in that area, some times it is worse then it was before. But now I also have major pain on the out side of my ankle. Went to a new Doc thi last week he said something about RSD, but not very much. Also I will be going to physical theraphy for the first time from all of this. It has been two years sence hurting my ankle, and to me it is getting worse. At times even a sheet on my foot hurts like heck.

Any help would be very helpful, and thank you inadvance for your time.

Pearl

Re: RSD - copy of post from Januarl

wendyn on 2/23/02 at 23:47 (074891)

Posted by wendyn on 1/10/02 at 23:00
Monte - I believe it was you who asked a question about RSD...I am supposed to be working from home tonight - but I thought this would afford me a welcome reason to procrastinate just a LITTLE longer. Soon it will be too late to bother.

First, I am not a doctor, just a patient who reads too much. Second, I am posting from memory - so my information is only to the best of what I've heard and read, and what I remember.

Someone else posted some really good info from their doctor here on RSD - you may want to run a search to see what you come up with.

RSD stands for Reflex Sympathetic Dystrophy, and it is also known as CRPS - Complex Regional Pain Syndrome.

In a nutshell, it is an over-reaction of the sympathetic nervous system to what often begins as an injury or surgery. In my case it seems to have started following a repetitive strain type injury to my post tib tendons - and some related damage to my Tarsal tunnel area/post tib nerve It started in one foot (my right) and then flared up eventually in my left.

RSD is usually characterized by severe pain (out of proporation to the original injury) and it often causes color and temperature changes in the affected limb. The foot (for reference here) can become very cold and often bluish (in Laurie's case - or very red and hot (in my case). Although sometimes mine are cold - they hurt more when they are hot.

My surgeon explained that it seems to be related to an old evolutionary reflex - and he compared it to what happens to an injured salamander. If the salamander sustains an injury to a limb - it's body will shut down circulation to the limb - and it eventually falls off. I think maybe they grow a new one after that but I don't remember.

Anyway - he said that this problem is essentially a take off from that - the body perceives an injury - and it starts firing off all kinds of innapropriate signals that cause more problems. In my case - it causes a massive increse in blood circulation to my feet - causing the temperature change and color changes. Because of this - my doctor does not want to do surgery. They are not treating this (the RSD) in my case - evidently because it is not in an acute phase...please do not ask me to explain more because I can't! I don't know much more! I do know that it used to be worse, it hurt to have a bed sheet touching my foot.

Laurie's RSD is bad - they are treating her with spinal injections to settle down the sympathic nerve. Hopefully once that's under control they will be able to do the surgery she needs.

I believe there is some connection between RSD and TTS - but that is not to say that TTS develops in to it.

It is quite uncommon - and I have more questions about it than I do answers.

If there are any doctors or anyone else reading this who wants to jump in and add stuff (or correct me) please feel free!!!!!

Laurie - I hope you don't mind me explaining your situation...I certainly don't presume to speak for you - I just think it helps to show two fairly different examples of what's been diagnosed as the same thing.

Re: Please I need support badly Pleaseeeeeeeeeee

Julie on 2/24/02 at 03:23 (074894)

Hi Pearl

I believe you're new here? I'll make things easier for you. As luck would have it, Wendy has just re-posted an explanation of RSD on another thread. to save you hunting for it, I've copied it. Here it is:

Posted by wendyn on 1/10/02 at 23:00
Monte - I believe it was you who asked a question about RSD...I am supposed to be working from home tonight - but I thought this would afford me a welcome reason to procrastinate just a LITTLE longer. Soon it will be too late to bother.
First, I am not a doctor, just a patient who reads too much. Second, I am posting from memory - so my information is only to the best of what I've heard and read, and what I remember.
Someone else posted some really good info from their doctor here on RSD - you may want to run a search to see what you come up with.
RSD stands for Reflex Sympathetic Dystrophy, and it is also known as CRPS - Complex Regional Pain Syndrome.
In a nutshell, it is an over-reaction of the sympathetic nervous system to what often begins as an injury or surgery. In my case it seems to have started following a repetitive strain type injury to my post tib tendons - and some related damage to my Tarsal tunnel area/post tib nerve It started in one foot (my right) and then flared up eventually in my left.
RSD is usually characterized by severe pain (out of proporation to the original injury) and it often causes color and temperature changes in the affected limb. The foot (for reference here) can become very cold and often bluish (in Laurie's case - or very red and hot (in my case). Although sometimes mine are cold - they hurt more when they are hot.
My surgeon explained that it seems to be related to an old evolutionary reflex - and he compared it to what happens to an injured salamander. If the salamander sustains an injury to a limb - it's body will shut down circulation to the limb - and it eventually falls off. I think maybe they grow a new one after that but I don't remember.
Anyway - he said that this problem is essentially a take off from that - the body perceives an injury - and it starts firing off all kinds of innapropriate signals that cause more problems. In my case - it causes a massive increse in blood circulation to my feet - causing the temperature change and color changes. Because of this - my doctor does not want to do surgery. They are not treating this (the RSD) in my case - evidently because it is not in an acute phase...please do not ask me to explain more because I can't! I don't know much more! I do know that it used to be worse, it hurt to have a bed sheet touching my foot.
Laurie's RSD is bad - they are treating her with spinal injections to settle down the sympathic nerve. Hopefully once that's under control they will be able to do the surgery she needs.
I believe there is some connection between RSD and TTS - but that is not to say that TTS develops in to it.
It is quite uncommon - and I have more questions about it than I do answers.
If there are any doctors or anyone else reading this who wants to jump in and add stuff (or correct me) please feel free!!!!!
Laurie - I hope you don't mind me explaining your situation...I certainly don't presume to speak for you - I just think it helps to show two fairly different examples of what's been diagnosed as the same thing.

Pearl, I hope this gives you the information you wanted. The vital thing, as I understand it from reading the boards, is that you get a firm diagnosis quickly, because if you do have RSD, it can get worse and needs to be dealt with. Laurie and Janet both have it and may respond to you - they have both been under the care of pain management doctors.

Re: OOPS

Julie on 2/24/02 at 03:25 (074895)

Sorry everyone. I thought Pearl's post was on a different thread.

Mea culpa.

Oh well. No harm repeating Wendy's good summary.

Re: Please I need support badly Pleaseeeeeeeeeee

Ptrust on 2/24/02 at 11:08 (074914)

yes I am new here.
Who would have thought from me twisting my ankle two years ago that this is what would come from it.
My doc wonts me to try therapy first to see if it helps, then if I dont get the relief on to a pain managment doc.
I am like most, it drives me crazy and I am normally a prety active person. I use to work as a waitress. but due to this have changed my jobs. not that that is a bad thing..lol. but I do miss it.

Any way,,, thank you very much for all the responces to my question. It helps to know that I am not crazy.

Pearl

Re: Tammie, good luck at the doctor's!

Carole C in NOLA on 2/11/02 at 23:34 (073395)

Tammie, good luck! We are keeping our fingers crossed and I think that the new doctor will be able to help. He sounds very good and I hope you are on your way to happy feet at last!

Carole C

Re: TY I am verry nervouse

Tammie on 2/12/02 at 11:12 (073430)

Thank You all! I am very nervouse I must say, my stomache is in knots and I fel queasy, now could be the meds but sure that it is the start of another search and revealing my self as one in pain! I seem to hate to say this to a 'outsider' as I fear the report that it is mind related if you understand what I am saying. My foot is being its normal self so that is good I was worried that it would majically disappear when I got up today but no it reminded me that it is still with me! My wonderful sidekick hubby who not very understanding at times is going to be with me! Which is good and bad. I need privacy when I reveal all and it is harder when there as I dont want him to be aware I am not as strong as I appear sometimes. But then the flip side is he can relate to him if I clam up, at least get me started by cuing me. I have my pad of paper with me with lots of notes.I just hope I can give it to him if needed!

Count down now it is almost time to leave for my apt. and needed to write or talk the nervouseness down some so I can think not blank out. My wishes for all my friends is that they see the sun at the end of there pain filled tunnel! Have a good day and thanks for being here for me!

Re: Tell us all about it!

Carole C in NOLA on 2/12/02 at 14:43 (073465)

Tammie, how did it go? Please give us the 'play by play'. We are all hoping that this doctor will have some good ideas on what to do next about your feet.

Carole C

Re: With pen in hand !

BrianG on 2/12/02 at 14:45 (073466)

Good luck today Tammie, hope you get some answers...B

Re: To Tammie

Laurie R on 2/12/02 at 14:56 (073470)

Hi Tammie , Yes we are all waiting to hear how your appointment went .... When you have time please let us know ..... I have been thinking about you all day .

Much love , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Tammie on 2/12/02 at 15:15 (073475)

Well I need to come here to my friends, more then ever i need SOMEONE to understand Me and what I feel!The appt that I waited for with anticipation of finally getting on my road to finding someone to help me was a total disaster!I ended up crying my heart out and disagreeing with the dr. and telling him I dont think I can work with someone who does not want to hear what I am trying to say, and furthormore thinks this is in my head! He feels I have something called rsd and that it means my body is creating more pain because I am not fighting it off and I need to do more scar massage as to touch lightly cause pain, and that I need to do more aggressive stretches and exercises and quit walking funny, so forth get on with my life. I am quoting this from my hubby as he was more in control of his feelings and heard more clearly as I was realing between anger and sadness and hurt.He did not want to hear what I have done prior to any surgerys did not want to hear about pain . He said the pain may be real it is the body reacting to the surgery.Its the condition of rsd. I am so upset about everything I can barely write thru my tears. I want to give up and throw the towel in . All that I fear is coming a reality can this pain be in my head, How do I walk normal when it hurts me how do I (forget when my foot feels like a hotbed with hot nails or a hot knife inside or on other times cold as ice. How do I explain to my head that the prickly feeling I feel in my ankle and arch area is not real, or that what I feel as a shock into my big toe or up my calf is not real? How do I sleep when my body says it hurts weather I want it to or not.

He did xrays, and all he wanted to tell me about was my big toe has some halex??/ something or another which can be fixed surgicaly and has a spur there and when my toe flexes it hits the spur which may be causing my foot change and it could be surgicaly corected but I have had to many surgeries already. I ended up walking out with telling him I dont think we can work together as I feel pain and you are telling me to continue and do more on my feet and to forget the pain as it is that rsd which means the pain is brought on by my head.I left without a glance back .

My poor hubby tried to tell him things about me and such but he did not want to hear it and said I am being open and sometimes we have to be a bad guy and call it as we see it. I am not going to pat her head and tell her I will fix it all cause she has to do it.More pt, and maybe some meds (antidepressants) which I tried to tell him I am on. He says he doesnt know what to think. Please someone do you think I am nuts and it is in my head? I feel like I should just go shoot myself, Dont worry not going to yet. But I feel as tho my guts have been kicked out. I have to sort this out more and get some info on rsd Laurieeeeeeeeeeee where are u? Janet????? I believe you two have it??? I hardly believe that it is all psycological I am sorry no dice with me. Please please I need some help dealing with this . No mri again . PLEASE do not yell at me for seeing him and not big guys, Please not today. I dont know if I can ever go to another dr. period!@

Re: Please I need support badly Pleaseeeeeeeeeee

Shelley G on 2/12/02 at 16:12 (073483)

Dear Tammie,

I am so sorry to hear that your appointment today was such a disappointment. It's very frustrating when you wait so long for an appointment and show up with records, etc. in hand, and then feel as though you have been treated like a hypochondriac. I've seen that same sort of situation with my husband. I'm going to share with you what I say to him; 'you have got to keep trying!!'

I believe you (and my husband) have severe foot pain that you live with every day. I can't see anything when I look at Lloyd's feet that looks any different from anyone else's feet (except for the two TTS surgery scars), but that doesn't make the pain any less real. It is the doctor's responsibility to listen to his/her patient and then attempt to do the best they can for them, and if they do not feel qualified or able to help the patient, they should be honorable enough to say so and provide information, records, etc. for referral to someone who can help. I have heard some really fine doctors remark how important it is to LISTEN to their patients as they know their bodies better than anyone else and can give important clues to what the problem might be. Remember, this is not the only doctor on the planet. There is one out there you can work with and have confidence in. The doctors who post here seem to be very knowledgeable and caring. That tells me that the search for a doctor to help you is not without hope. The good ones are out there.

I know you are tired and frustrated with tests and appointments, insurance, and all that stuff. And I know that being in pain zaps your strength and resolve. But PLEASE DON'T GIVE UP! There is someone out there who can help you; keep looking, keep learning, and keep hoping. I feel certain that all those who post to this board will share with you any information they may have that would help you find the right avenue for treatment. God bless you. Hang in there.

Shelley

Re: Tammie, it's not all in your head

Julie on 2/12/02 at 16:33 (073490)

Tammie, breathe out fully. Sigh if you like. Then breathe in slowly and as deeply as is comfortable: no strain. Do this at least five times.

You are not making the pain up.

It is not all in your head.

RSD is not 'psychological'. Laurie and Janet will be able to tell you more about it.

The doctor was not kind, he did not listen to you, and he did not help you. He was out of order speaking to you as he did. Forget him.

Get a good night's sleep. Then pick yourself up, dust yourself down, and start all over again.

No one is going to scold you for seeing this doctor - but it's a shame you did, because it has caused you such unhappiness. There are good doctors and bad. You drew a lemon. Full stop.

Now cut your losses, let go of what happened today, and continue your search for a doctor who will listen instead of lecturing you, understand instead of dismissing your pain, and help you to heal.

And finally: this is NOT YOUR FAULT. Please believe that.

And good luck with your next step.

Re: Tammie!!! {{{{{ BIG HUGS }}}}}

Carole C in NOLA on 2/12/02 at 17:16 (073503)

Tammie, I don't know much about RSD but I just read a couple of websites on it, after reading your post. The websites did not think it was all in your mind or all something that you have to deal with alone! They said that it was very very important to get early treatment for it from a doctor knows about it.

I just want to say that I believe you completely! Absolutely and without any doubt! I think that doctor has the mental problem, not you!

Some people should never become medical doctors because they have no more empathy than a fence post.

Carole C

Re: Please I need support badly Pleaseeeeeeeeeee

Laurie R on 2/12/02 at 17:18 (073504)

Dear Tammie , Frist I want to tell you how very sorry I am that this doctor was such a jerk .... Yes that is what I feel . If a patient comes in with the pain you have , he should of took the time to talk to you and go over everything to see what is really going on with your foot. I feel so bad , after reading your post , I called my hubby and told him what had happened to you .... He was so mad also ...

I will also tell you your pain is not in your head , none of it is .. Don't let this doctor make you feel like that .

Now for RSD , I can not believe he said that if you have RSD it is all in your head. I have never ever heard of anything like this in my life. Yes I do have RSD and it sure is not in my head.... The pain is real ....

Now I know you are very , very upset now , who would not be if it happened to them . But try to calm yourself down and read as much as you can on RSD . Their are many treatments for it . But you have to have the right doctor that treats RSD . I have two doctors , one is my POd and the other is my pain management doctor . My PM doctor is the one that treats my RSD .

Janet has helped me so much with my RSD and has helped me to understand it .. She is busy today , but I will email her and ask her to read your post so she could reply to you herself .. Their are so many wonderful websites on RSD that have also helped me .

RSD needs to be treated earily on Tammie , it is not something that should wait ....

Their are many different symptoms for RSD , you say your feet get really hot and then really cold , thoes are two of the symptoms , but again their are many more....

I am so sorry this happened to you today , I still can't believe you were treated like this . You did the right thing to leave. I would of also . No one should ever have to listen to a doctor that is like that .

Last week when you saw him with your hubby , wasn't he really nice and said for you to make the appointment ?? What happened ? Also from what he said to you about RSD , it just shows he does not know to much about it , a lot of doctors don't ....

I am here for you anytime , please let me help you and I will do my best to help you ...

Much love to you , your friend ,Laurie

Re: Tammie!!! {{{{{ BIG HUGS }}}}}

Laurie R on 2/12/02 at 17:21 (073505)

Dear Carole, Thank you for posting this . You are so right and also I am so glad you took the time to read up on RSD .It is very complex to understand .. I have had it now for a while and the pain from it is terrible . I have had 4 spinal injections for it also ...Also like I said in my last post early treatment is a must .....

Thank you again , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Suzanne D on 2/12/02 at 20:19 (073535)

Dear Tammie,
I am SO SORRY that this appointment which you had high hopes for ended like this. But perhaps you can look at it this way: today showed that he is NOT the doctor to help you, and you won't waste any more time with him!

Right now I just wish I could do something for you to make you feel better. I am just feeling so badly for you that you had to get so upset and that your hopes had to be dashed.

But, as others have already said, I BELIEVE YOU, and it is not 'all in your head'. Sometimes I think when doctors don't understand, that is just what they say. Know that WE believe you, and don't punish yourself with thoughts that you are 'losing it' or 'nuts'.

This is a bend in the road, and an unpleasant one, but it is not the end. Keep fighting! But for now, just get some rest and leave that for tomorrow.

You are in my prayers.

Suzanne

Re: On RSD

wendyn on 2/12/02 at 21:44 (073548)

Tammie, first I'm very sorry that your doctors appointment went so badly - I HATE IT WHEN THIS HAPPENS TO ONE OF US!

Second, RSD is not all in your head. I'm not sure if that's actually what your doctor said - or if that's the way you interpreted it.

RSD IS an over-reaction by your sympathetic nervous system - and yes, in a way, your body is generating it's own pain.

BUT - that is NOT to say that you are imagining it. The pain is real. The temperature changes are real. If untreated, RSD can eventually cause things like osteoporosis and permanent muscle atrophy - and you can't imagine that all in your head either.

In it's simiplest terms - it is usually a nerve injury that goes completely hay wire.

Remember - I'm just a patient, but let's see if this helps to explain it.

If you put your hand over a candle - the nerves pick up the signal of heat and pain - and they fire off a message to your brain that includes all kinds of information 'OUCH, PAIN, REACT, SPEED UP THE HEART, MOVE THE HAND, THIS HURTS!!!!'

All kinds of things happen between your nerve and your brain - and it's your bodies way of reacting to what those nerves say is happening. You don't sit down and say 'Gee, now let's think about this...what are my nerves saying, is this real - should I feel this pain or not?' Your brain and your breathing, and your heart rate, and your internal thermometer all rely on those nerves to do their job properly - and they believe what the nerves communicate.

Sometimes though - the nerves over react, and even after the inital pain stimulus goes away - they continue to send all the same messages 'OUCH, PAIN, REACT, SPEED UP THE HEART, MOVE, THIS HURTS!!!'.

When you have pain - actual chemical changes take place in your body - that send that message of pain through your nerves to your brain. If those messages are being sent - it causes the same pain to you no matter what the cause. It is not something you can control.

This is why RSD is often treated with nerve blocks - this puts the nerve to sleep for a while, and hopefully it will stop sending the pain messages eventually.

Please understand though - that RSD is a real, physical condition - it is no way a mental condition. But - it must be treated.

When is your next appointment and who is it with?

Do you have an appointment set up with a 'big name' doctor?

Remember I've been diagnosed with RSD too - so I happen to know for sure that that pain is REAL.

I do agree with your doctor that this is likely what you have - and that surgery would not be a good idea at this point, I just don't agree with him on it being in your head - and I'm not sure that I agree with his treatment plan either.

Re: Please I need support badly Pleaseeeeeeeeeee

BrianG on 2/12/02 at 22:48 (073559)

Hi Tammie,

Bad deal! Take an extra pain med tonight and get some sleep. You'll feel a little better in the morning. I look at it this way. The Jerk is probably correct, you may have RSD. So, now your done with him, DONE. Time to read up on RSD, and get a referrel to the Best RSD doc in your area. Like the others said, it's important to get it treated asap.

BrianG

PS I now give you permission to completely forget about whats his name that you met today. You know, the man with no compassion! Life is too short.

Re: Please I need support badly Pleaseeeeeeeeeee

Laurie R on 2/13/02 at 00:17 (073565)

Dear Tammie , I wanted to let you know that I did email Janet and asked her to read the board about your appointment ... She emailed me back and she is not feeling well ... She did ask me to tell you that , she is pulling for you and praying that you will soon get the help you deserve ....

Remember everyday is a new day , we are all pulling for you Tammie , I know today was very hard on you . My heart is very sad for you , please know that we are all here for you and we will help you get through this ..

Much love , Laurie R

Re: Please I need support badly Pleaseeeeeeeeeee

Janet C on 2/13/02 at 01:59 (073569)

Dear Tammie,

I have been pushing myself much too much lately, so I'm really hurting badly now, but I wanted to take the time to write you to let you know that I really care, and you have all my support, and best wishes. And I am so sorry you found a Dr. with so little knowledge and empathy for your suffering.

RSD is a very real disease, and I'm so sorry that you have been Dx'ed with it also, but I have thought for quite some time that it may be the reason your pain is so severe. I've found that many Drs. seem to be uneducated and misinformed about this horrendous disease, and I think it's really a shame that they haven't been taught more about it in Med School. The Dr. you saw also sounds like he needs sensitivity training. But in my experience, most Drs. have huge egos, and are not receptive to learning anything new, especially from their patients.

I truly understand the frustration you feel. But all I can recommend is that you keep searching, until you finally find a Dr. who is sympathetic to your needs. They are out there - however few and far between. In the meantime, please know that we are all here for you, and we know that the pain you feel is real.

Please feel free to e-mail me with any questions or concerns you might have, and I'll try to help you in any way I can.

With Love, Janet
(email removed)

Re: Please I need support badly Pleaseeeeeeeeeee

Dr. Zuckerman on 2/13/02 at 08:18 (073587)

Hi

I may be repeating this because I am on the bottom of this thread. RSD could account for all of your pain. Yes we do have some people on this site Laurie who do have this very painful disease. A pain management specialist is the doctor who usually treats this. The treatment is aimed at trying to keep you moving. Sitting still seems to make this disease worse. So how do you do this when you are in pain. Swimming. biking. sometimes lower back epidural injections can help to relieve the pain cycle.
Oral steriods, valium to help with the anxiety that the PAIN is causing you is very helpful. This is real and this disease is very painful. IT there is any thing that I say or do to help you understand this very PAINFUL DISEASE I am here for you.

Re: Please I need support badly Pleaseeeeeeeeeee

eileenc on 2/16/02 at 09:51 (073882)

Hi -- I had an unsuccessful TT Release in 1997 and live with that pain every day. I too have be DX'ed with RSDS or as they are now calling it; Complex Regional Pain Syndrome, sympathetically maintained.

GO TO A PAIN CLINIC NOW!!! Ask for something like Neurontin, Topamax, or Zonegran. Nerontin kept me from dying. You may also need something else -- I ended up on Vicodin. I probably should be on an anti-depressant too as I hear that certain ones can help. It is unfortunate that drugs are necessary (I rarely took anything before my sprained ankle decided to 'scar up' on me), but they WILL help.

Maybe your family doctor can prescribe something like this until you can get in to a pain clinic. I KNOW what it feels like -- you must get the pain issue addressed before you try to do anything else with the foot.

Re: Please I need support badly Pleaseeeeeeeeeee

Ptrust on 2/23/02 at 22:23 (074886)

Can some one please tell me what RSD Stands for and where I can learn more about it.
I had TTS sugery almost a year ago. I still have pain in that area, some times it is worse then it was before. But now I also have major pain on the out side of my ankle. Went to a new Doc thi last week he said something about RSD, but not very much. Also I will be going to physical theraphy for the first time from all of this. It has been two years sence hurting my ankle, and to me it is getting worse. At times even a sheet on my foot hurts like heck.

Any help would be very helpful, and thank you inadvance for your time.

Pearl

Re: RSD - copy of post from Januarl

wendyn on 2/23/02 at 23:47 (074891)

Posted by wendyn on 1/10/02 at 23:00
Monte - I believe it was you who asked a question about RSD...I am supposed to be working from home tonight - but I thought this would afford me a welcome reason to procrastinate just a LITTLE longer. Soon it will be too late to bother.

First, I am not a doctor, just a patient who reads too much. Second, I am posting from memory - so my information is only to the best of what I've heard and read, and what I remember.

Someone else posted some really good info from their doctor here on RSD - you may want to run a search to see what you come up with.

RSD stands for Reflex Sympathetic Dystrophy, and it is also known as CRPS - Complex Regional Pain Syndrome.

In a nutshell, it is an over-reaction of the sympathetic nervous system to what often begins as an injury or surgery. In my case it seems to have started following a repetitive strain type injury to my post tib tendons - and some related damage to my Tarsal tunnel area/post tib nerve It started in one foot (my right) and then flared up eventually in my left.

RSD is usually characterized by severe pain (out of proporation to the original injury) and it often causes color and temperature changes in the affected limb. The foot (for reference here) can become very cold and often bluish (in Laurie's case - or very red and hot (in my case). Although sometimes mine are cold - they hurt more when they are hot.

My surgeon explained that it seems to be related to an old evolutionary reflex - and he compared it to what happens to an injured salamander. If the salamander sustains an injury to a limb - it's body will shut down circulation to the limb - and it eventually falls off. I think maybe they grow a new one after that but I don't remember.

Anyway - he said that this problem is essentially a take off from that - the body perceives an injury - and it starts firing off all kinds of innapropriate signals that cause more problems. In my case - it causes a massive increse in blood circulation to my feet - causing the temperature change and color changes. Because of this - my doctor does not want to do surgery. They are not treating this (the RSD) in my case - evidently because it is not in an acute phase...please do not ask me to explain more because I can't! I don't know much more! I do know that it used to be worse, it hurt to have a bed sheet touching my foot.

Laurie's RSD is bad - they are treating her with spinal injections to settle down the sympathic nerve. Hopefully once that's under control they will be able to do the surgery she needs.

I believe there is some connection between RSD and TTS - but that is not to say that TTS develops in to it.

It is quite uncommon - and I have more questions about it than I do answers.

If there are any doctors or anyone else reading this who wants to jump in and add stuff (or correct me) please feel free!!!!!

Laurie - I hope you don't mind me explaining your situation...I certainly don't presume to speak for you - I just think it helps to show two fairly different examples of what's been diagnosed as the same thing.

Re: Please I need support badly Pleaseeeeeeeeeee

Julie on 2/24/02 at 03:23 (074894)

Hi Pearl

I believe you're new here? I'll make things easier for you. As luck would have it, Wendy has just re-posted an explanation of RSD on another thread. to save you hunting for it, I've copied it. Here it is:

Posted by wendyn on 1/10/02 at 23:00
Monte - I believe it was you who asked a question about RSD...I am supposed to be working from home tonight - but I thought this would afford me a welcome reason to procrastinate just a LITTLE longer. Soon it will be too late to bother.
First, I am not a doctor, just a patient who reads too much. Second, I am posting from memory - so my information is only to the best of what I've heard and read, and what I remember.
Someone else posted some really good info from their doctor here on RSD - you may want to run a search to see what you come up with.
RSD stands for Reflex Sympathetic Dystrophy, and it is also known as CRPS - Complex Regional Pain Syndrome.
In a nutshell, it is an over-reaction of the sympathetic nervous system to what often begins as an injury or surgery. In my case it seems to have started following a repetitive strain type injury to my post tib tendons - and some related damage to my Tarsal tunnel area/post tib nerve It started in one foot (my right) and then flared up eventually in my left.
RSD is usually characterized by severe pain (out of proporation to the original injury) and it often causes color and temperature changes in the affected limb. The foot (for reference here) can become very cold and often bluish (in Laurie's case - or very red and hot (in my case). Although sometimes mine are cold - they hurt more when they are hot.
My surgeon explained that it seems to be related to an old evolutionary reflex - and he compared it to what happens to an injured salamander. If the salamander sustains an injury to a limb - it's body will shut down circulation to the limb - and it eventually falls off. I think maybe they grow a new one after that but I don't remember.
Anyway - he said that this problem is essentially a take off from that - the body perceives an injury - and it starts firing off all kinds of innapropriate signals that cause more problems. In my case - it causes a massive increse in blood circulation to my feet - causing the temperature change and color changes. Because of this - my doctor does not want to do surgery. They are not treating this (the RSD) in my case - evidently because it is not in an acute phase...please do not ask me to explain more because I can't! I don't know much more! I do know that it used to be worse, it hurt to have a bed sheet touching my foot.
Laurie's RSD is bad - they are treating her with spinal injections to settle down the sympathic nerve. Hopefully once that's under control they will be able to do the surgery she needs.
I believe there is some connection between RSD and TTS - but that is not to say that TTS develops in to it.
It is quite uncommon - and I have more questions about it than I do answers.
If there are any doctors or anyone else reading this who wants to jump in and add stuff (or correct me) please feel free!!!!!
Laurie - I hope you don't mind me explaining your situation...I certainly don't presume to speak for you - I just think it helps to show two fairly different examples of what's been diagnosed as the same thing.

Pearl, I hope this gives you the information you wanted. The vital thing, as I understand it from reading the boards, is that you get a firm diagnosis quickly, because if you do have RSD, it can get worse and needs to be dealt with. Laurie and Janet both have it and may respond to you - they have both been under the care of pain management doctors.

Re: OOPS

Julie on 2/24/02 at 03:25 (074895)

Sorry everyone. I thought Pearl's post was on a different thread.

Mea culpa.

Oh well. No harm repeating Wendy's good summary.

Re: Please I need support badly Pleaseeeeeeeeeee

Ptrust on 2/24/02 at 11:08 (074914)

yes I am new here.
Who would have thought from me twisting my ankle two years ago that this is what would come from it.
My doc wonts me to try therapy first to see if it helps, then if I dont get the relief on to a pain managment doc.
I am like most, it drives me crazy and I am normally a prety active person. I use to work as a waitress. but due to this have changed my jobs. not that that is a bad thing..lol. but I do miss it.

Any way,,, thank you very much for all the responces to my question. It helps to know that I am not crazy.

Pearl