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Living with TTS

Posted by Lisa on 5/18/04 at 11:18 (150755)

Hello everyone with TTS. I'm new to this and very excited to find others.
How is everyone coping with your new life? I have so many mixed emotions. I'm still really young. The day I had surgery I wanted to know when I can return to my life style. The Dr. informed me maybe never...... Hiking biking, waterskiing, baseball and etc. Growing up, my parents wanted us to be active in this world and not passive. Now I'm finding out that I might have to be passive. My world is to be involved that is what wakes me up everyday.
I have 2 young kids who are involved in lots of sports. From coaching to going to games, now I'm relying on them to help me in the stores to push carts and grabbing things for me.
So I guess what I want to know is: What have you done to help you through this time?

Re: Living with TTS

marie on 5/18/04 at 21:18 (150797)

Just remember kids don't care how, where and when you spend time with them all they care about is that you spend time with them. Sometimes life isn't fair and Moms and Dads get sick. Sometimes their lives change because of their parents health. Figure out what you can do and go from there.

The big thing for me was that I missed my old body and was intent on waiting for it to come back. At some point you'll realize that it's not going to be the same. Adjustments have to be made. The best thing I did was get a used wheel chair. It allowed me to get out and about more. My kids realized that the old Mom's body was gone but the Mom was still here. We found new ways of doing things together. My youngest walked with me every day just in case I fell or needed help. We had alot of wonderful conversations that I'll treasure. My oldest son stayed closer to home for college. They survived. We survived.

best wishes marie

Re: Living with TTS Marie

John Martello on 5/19/04 at 07:39 (150816)


I would just like to commend you on all your input in this message board. MY question to you is how did you avoid surgery? Did you ever try any topical ibuprfen creams that helped and did you limit your time walking and standing?

Thanks John

Re: Living with TTS

LARA on 5/19/04 at 08:06 (150820)

This question comes up periodically and its good for us to revisit it. THere are ways to be active that don't require your feet. I was playing tennis (pretty good too), karate & jogging. I swore I wouldn't give up tennis, but the others could go. Well, I have given up tennis, and karate and jogging and a few other things. However, I took up art class and love it. I never would have considered art class otherwise and just kind of fell in to it because I was taking my kids to art class. I'm not as good at art as I was at tennis, but truth is I like it just as much - and it doesn't hurt! I wish I had my feet like they used to be. But I wish I had a great singing voice too - and I've never had that. There are lots of things I want that I don't have - and I still have a nice life. That adjustment was harder than the new life I live.

I've also given up long walks in the park - or mall. I was thinking of going with my husband on his annual professional conference this summer to a city I LOVE and realized that was a really dumb idea - I can't go do the things we used to do in the city. I'd be paying to camp out in a hotel (not a bad idea actually). Sight-seeing is not something I do alot anymore. But I know people who have given up far more than being able to visit different cities. Instead I'll take advantage of having the whole house to myself in peace and quiet and work on projects I never get to because the house is too busy. It's funny how often obstacles in my life and have led me to choices I never would have considered but turn out to be a really good idea.

An active life is a really neat thing. So are many other kinds of lives. If the choice were left to me I would choose the active life and never consider the benefits and joys of a more sedentary/peaceful life. I wish my feet hadn't forced the issue - but I can't say I'm worse off for it. Actually, as an added benefit and as a middle-aged woman, I've quit putting wear and tear on my joints. All that activity I did as a young woman was great for my heart - but lousy for various joints and after a few decades it takes it's toll. My mother can walk farther and has fewer knee problems and such than I do! And at over 80 years old, her heart seems just fine.

I will add that I am one of the people who does not have to live in constant pain so long as I monitor my lifestyle. I also will add that I did not come to this place of accommodation to my new limitations quickly and easily. And sometimes I still miss my feet. I don't expect that we can all be at a place of acceptance quickly and easily. It's a process. And it's a much easier process once you are out of pain.

Re: Living with TTS Marie

marie on 5/21/04 at 16:53 (150986)

I keep this on file. I hope this helps. I do pretty well now but have occasional flare ups...all minor.

I was dx with tts in 2002. TTS symptoms began in 2000. My first symptom was tightness in my knees. I thought it may be arthritis so I ignored it. In the summer of 2001 my feet began to bother me. In August I had a major flare up that literally knocked me off my feet. Assuming it was arthritis I thought I better consult my GP. He prescribed some arthritic medications but there was no improvement.

I was referred to a Podiatrist. He is a wonderful doctor. His concern was that some of my symptoms were not typical of tts so I went through a battery of additional tests before they began to treat me. Recovering from tts is like having another full time job.

I went from a wheel chair and scooter to walking two miles in the Multiple Sclerosis walk. A cause dear to my heart.

This is what has helped me.

Physical Therapy

Ice (frozen peas work well) for swelling. About 5-10 minutes per ankle. Two-three times a day as needed.

Light stretches......very light.

Medications: Neurontin 300 mg 3x daily, 50 mg elavil

Vitamins that I sware by: MSM, Glucosamine, Vitamin C, Magnesium. Some have had success with vitamin B6 and 12.

Compression socks and mens support socks.

Birkenstock shoes. I am especially fond of Arizona and other soft bed styles.

Progesterone cream on my ankles and knees twice daily.

My hubby massages my meta tarsals, ankles, calves and thighs. At first this was done twice a day. Now I only ask for a massage once or twice a week. NEVER massage the tarsal area vigorously. My PT and I found that out the hard way. It was a major setback.

Some have had success with Ibuprofin creams.

Light non weight bearing exercises.

Distraction from pain. My brother, who has MS, suggested emmersing myself in activities or projects that would take my mind off my feet. It helped me maintain my sanity.
Creating this site has been one of my projects.

Everyone is different. What has helped me may not help you. Please feel free to add what has helped you.

best wishes marie

Re: Living with TTS Marie

marie on 5/21/04 at 17:03 (150989)

Yikes I see I already posted this....oh well. Let me know if you have any questions.

It took 3 years to get to were I am now. I feel that I'm functioning at about 90-95% walking ability. No pain or numbness. I hate the numbness it's so annoying.

Re: Living with TTS

wendyn on 5/21/04 at 22:45 (151007)

Lisa, how old are you?

You don't need to be 'passive' even with foot problems. Living this way has given me a whole new perspective on life. No, I don't walk really fast any more - but I notice a whole lot more than I did before. I don't jog, but I bike. I don't do aerobics, but I do yoga.

For everything I gave up, I found something new that I may never have tried otherwise.


JEFF on 5/25/04 at 15:45 (151227)

Hi everyone, wow where do I start? 2 years ago Had a little bit of 'classic plantar fasciitis' waking up with heel pain. so I had a pair of orthotics made which gave me alot of pain in my arch. I had 6 pairs of orthotics made none of which worked. the heel pain in the morning has been gone for a long time, about a year. I have no pain at all without shoes. when I wear shoes I have burning pain in the ball of foot and across forefoot and also in my arch. again when i take the shoes off instant relief. I know with a neuroma you can have the ball of foot pain, but the arch? xrays negative, mri's negative. diabetes ruled out. rheumatoid arthritis ruled out. so my question to all of you is...... with tts does the pain go away with shoes off. also i hear of people with tts pain in their ankle which i do not have. I had a nerve conduction study and they said i had a mild form of tts, but my pod says 'those people diagnos everyone with tts. --------- are my symptoms classis tts or possibly neuroma Sorry so long, Jeff