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Logical Next Step for TTS/PF?

Posted by Lynn on 4/15/03 at 14:55 (116207)

It seems like a lot of you have extensive experience with the type of problems I've been having, so I'd appreciate any input into my situation and what a logical next step might be.

I've been suffering from what I think is TTS and PF for several years, on and off. In general, I also have a lot of other aches and pains and have been diagnosed with fibromyalgia.

I'm on my second pair of orthotics (the second from a different doc. than the first), which I understand from this board is not uncommon. My podiatrist thinks that I have a lot of biomechanical problems with my feet, and that proper positioning through orthotics may alleviate pressure on the nerve and the sensations of burning, numbness, electric shock, swelling, pain and cold that I've been experiencing. However, when I described all of my symptoms on a recent orthotic check-up, he said that the problems may be coming from my back (I also have a history of back problems) and suggested an MRI to rule this out.

Another doctor suggested an EMG to determine whether the nerve problems are really coming with my feet. Several doctors have told me that I do have TTS, based on observation and not-very-scientific testing with a safety pin.

My question (yes, there is one!)is: What is the next logical step? I believe I will have significant out-of-pocket costs with both an MRI and an EMG. From what I've read on this board, and from my own experience with both EMGs and MRIs on other parts of my body, neither are that accurate. Plus, I'm not sure that the treatment would be any different even if I found out the cause of the problem!

In addition to the orthotics (which may or may not be worsening the situation), I'm doing a lot of stretching, icing and self-massage, as well as taking a natural anti-inflammatory, which I don't think is helping. I ordered compression socks to try.

Any advice?

Re: Logical Next Step for TTS/PF?

lara t on 4/15/03 at 23:34 (116257)

I'd try compression socks. They were magic for me, and help others, but not everyone. They are relatively inexpensive ($20.00/pair), and if they don't work, you just take the socks off without lasting effects (to my knowledge. Since they worked for me I can't say for sure, but those who say the socks didn't work or hurt haven't mentioned lasting effects). I still can't play tennis wtihout paying for it, but I can have a nice day in which I can feel my feet - but it doesn't bother me and I can have a nice life. I'd see if you can get your doctor to write a prescription for mild anklets. They are the most comfortable. if not, you can try to OTC ones sold in stores for folks with varicose veins. They aren't as strong as the prescription (which come in mild, moderate, and something even stronger).

Re: Logical Next Step for TTS/PF?

Pam S. on 4/16/03 at 16:30 (116333)

Dear Lynn:
I have alot to say to you but I do not have time at this moment. I also have fibro and the exact same symptoms you have. I have done alot of work on this and I would like to help you. Everyone is different but the compression socks HAVE helped me. THANK YOU LARA!!! Orthodics just flared me worse and many women with fibro cannot tolerate orthodics. I can give you the phone number where I purchased my compression socks out of a catalog but they are not prescription. I will be back to post more to you later tonight. Pam

Re: Logical Next Step for TTS/PF?

Pam S. on 4/16/03 at 21:14 (116361)

Dear Lynn:
Your post caught my eye when you reported that you have fibro plus the foot pain. So have i for the past 4 years. It is quite a challenge to have fibro plus foot problems because exercise is so important in controlling the pain and stiffness of fibro. I am currently considering swimming because i need to give my feet a rest these days I think. Yoga is also good but cardio work is especially great for you to help with sleep (also a challenge for fibro sufferers).
I will try not to forget your question which is should you get the EMG. I did have the needle EMG which verified that I had tarsal tunnel back in 99. I was in extreme pain in that foot and I had the surgery right away. I am glad I had the test done because if I had not I would always be second guessing that I should not have had that horrific surgery. It is not a pleasant recovery. I was diagnosed with the fibro after that surgery. I was just in alot of pain. I think people with fibro are hyper sensitive to pain. My foot did get better but still to this day I will have periods of burning in that foot - even tonight. Surgery is a challenge for people with fibro but I did not know I had it when I had the TTS surgery. It took me a long time to recover...
I also had MRI done of my back, my brain. I had every test known to man which many of us do that go thru the diagnosis process. All came back negative except the TTS nerve test was positive. I am fortunate that my husband has good health insurance. If this is coming out of your pocket I do not know what to tell you. You will have to trust what your dr. suggests. I like to know WHY I have this or that pain. The nerve pain in my foot was unreal. I knew I could not live with that. If you do not plan to do anything at all about it then maybe it is not necessary . It depends on how much you are hurting etc.
People with fibro seem to have alot of tendonitis. I have often wondered if that is why our nerves are impinged. No dr. has really ansered that for me. I now have fairly severe symptoms in my other foot. I am not having the EMG now because I know I do not want to have the surgery. You could try physical therapy if your insurance will cover it.
There are meds like Neurontin ( which I take) that help with nerve pain. Everyone is different and this is just my experience and remember I am not a dr. Hope this helps. I am happy to answer any questions for you. ps I have heard and read others with fibro say they have burning in their feet. Who knows why and there is no easy answer as to what to do about it. I wish I had a magic bullet and I would share it with everyone!!! Good luck, Pam Orthodics will not work for me... Why?????

Re: Logical Next Step for TTS/PF?

Lynn on 4/17/03 at 12:25 (116412)

Pam

Thank you so much for your posting. It's helpful (well, maybe more like reassuring) to know that others out there have the same sort of problems. I do think that sometimes people think I am crazy:)I'm only 36, and I constantly have all of these weird problems!

It's interesting that you note that people with fibro seem to have a lot of tendonitis and nerve impingement. I have these problems in other areas of my body in addition to my feet. What a pain!

I had neuroma surgery on both feet about five years ago, and swore never to have foot surgery again unless absolutely necessary, so I'm not sure that I'd ever have the TTS surgery unless I really had to. My recovery form the foot surgery, like yours, was very long...and I feel that my feet have never been the same since!

Do you have any side effects from Neurotin? I see that a lot of people take it, but I was under the impression that it's quite sedating.

Thanks again.

Re: Logical Next Step for TTS/PF?

Pam S. on 4/17/03 at 21:41 (116468)

Dear Lynn:
I am pleased that my post was helpful. It was soooo long but these issues are not simple!!! I do want to be reassuring. First of all that you are NOT crazy one bit. As time goes on, you will feel better and you will learn so much about yourself. You will learn how to take very good care of your body. By the time you are 50 and your friends are having issues too you will be awesome and giving lots of advice!!!
I also seem to have alot of nerve pain . I even have bladder pain. I promise I will not even go there. My point is that we seem to have areas of weakness and if we are not careful we will flare that area up. Too bad it is our feet. So easy to overdo those puppies. I was a big tennis player and outdoor race walker. NO MORE! I am (sort of) over it. BOOOOO
I also had alot of arm pain at the onset of my fibro but that is much better. Probably because I quit tennis. I overdo everything too.
It is really hard to cope with the foot issues as you can tell by all these nice folks on these boards. I am still thinking I can get better. There is a very small chance I might have my left foot released 'someday'.You are right, that surgical foot really does not ever feel the same again and it takes us alot longer than most to recover. But I know that now. I had no idea what was wrong with me after I had the surgery. My whole body was just flared up. It was so bizarre.
The neurontin works for many people with nerve/burning type pain. Elavil is another popular prescription for those with this type of pain, but there are more side effects. We are very sensitive to side effects. It took me over two years to get up to 400mgs of Neurontin (they start at 100's. I just had to start out very slowly and take this at bedtime only. Still do. Yes, it can make you sleepy. You do get used to it after a while. I am currently trying to take 100 around dinner time because that is a time I have alot of burning and I have to cook and do homework with my child. I have one away at college too.
Good luck. I am happy to help. Keep stretching and strengthening your body and you will be better over time. Learn all you can about fibro and eat the best diet you can. It pays off. I promise I will stop! Pam