ALS

[Guest]

I am glad that I found this site. It is a relief to know that I am not the only one feeling this pain. Here is my story: I was a dancer for most of my life. I stopped at the age of 21 when repeated breaks to my feet got to be too much and my arches started to fall.
When I was 26, I began to have horrible swelling in my right foot. The doctor I went to told me I just had tendonitis Six months later, all I could wear were flip flops. (I called it sausage foot!) I then went to another doctor who saw that I had a severed tendon due to an extra bone in my foot chipping away at the tendon. I was on crutches for many months and for about four months after the whole recovery, I felt great!
Then came the pain...the same pain that only those with RSD understand. I have lost friends, had people say "It's just your foot, get over it", and just plain struggled to make people understand why some days I just cannot get out of bed. I have also gained a lot of weight. If anyone has been able to successfully take the weight off, I would love to know how. I am currently on 8 different kinds of meds (including MS Cotin, a sleeping pill, and Topomax for the shakes). I just want to be me again and am willing to try anything. I have a fabulous doctor, but I feel that there is a way to get my energy back and somehow resemble the old me.

[Christina Marie]

I don't have a clear diagnosis yet, although it seems my neurologist and I might be in agreement that my symptoms sound like RSD. I have a variety of symptoms which are unusual for RSD, although I did have my left ACL replaced about eight years ago after a skiing accident. I recently broke my toe which stopped me from exercising. It didn't heal properly and I thought they missed a broken bone in my foot, but after a second xray turned out ok, the doctors said it is probably a torn tendon. (Having an MRI on my foot is low on my priority list now because I have coronary spasms, a stent in my left artery from an unexplained heart attack, and an enlarged biliary duct...)

I also take a variety of medications, most of which I wish I could avoid. I think Provigil has helped me with getting my body functioning in the morning, along with two darvacet tablets to take the edge off of that morning pain. After I start moving I feel less stiff. Cymbalta has helped with my sleep, but it seemed to aggravate my tremors, facial numbness and dizzieness, so I take 60 mg rather than the 120 my doctor had tried. I sometimes skip it when I am going through a period of excessive tremors.

I'm going to start taking a water exercise class designed for arthritis patients two days a week starting next week. We don't have a pool at home, but whenever I've had access to one I've found this is the only exercise which has never hurt me or set me back.

Good luck and best wishes---