[kimmieval]

Grrrrr...this fibro/ Undifferentiated connective tissue disease is getting on my last nerve. Lost 30 lbs in the last year. However, it is getting increasingly difficult to exercise without severe pain consequences.

Used to walk, and then after 4 months of a good walking plan, I started to get intense leg cramps, itchy skin as well as seemed to aggravate my gluteal trigger point (butt pain!). Tried upper body strength movements, only served to aggravate my shoulder/neck pain. Ah...maybe I can fall back on my Wii...it worked before, right? Wrong, more pain than ever before.

Instead of having better looking legs, my legs which are now much smaller, now look even more dimpled and puckered. They were FINE two weeks ago, and with only a 1 lb loss over the last two weeks and no change in my diet plan, my legs simply look horrible. To make it worse, today, for the first time in over two years, I have a swollen and stiff leg leg as well as a two lb weight gain.

I think for the first time since having Fibro/UCTD, I am about to feel depressed! How do I keep active to ward off the weight gain that happens if I even smell food? I can eat the recommended diet and yet gain weight even if I am eating 250 calories under maintainance calories. Without exercise, my weight gain is all but inevitable....

[kaplods]

I was also diagnosed with fibro and suspected Undifferentiated connective tissue disease (whatever autoimmune stuff I had going on was attacking my joints, skin, lungs, sinuses, and nose cartilage. Doctors said if I was lucky I'd never get a more specific diagnosis, as autoimmune diseases get their name from the pattern of organ damagae).

The autoimmune disease seems to be in at least partial remission (I haven't had to take a course of prednisone in almost a year, but I still have to use topical steroids for the skin issues and also a steroid cream for inside my ear canal when it swells and itches).

For me, it's very clear that a moderately low-carb diet is what's keeping the autoimmune disease in remission. I read several books on autoimmune disease that implicates high-carb foods, especially grains and Vitamin D deficiency with autoimmune disease. So I started reducing carbs and taking Vitamin D.

The skin issues reoccur if I eat wheat and to a lesser degree sugar and other carb-rich foods.


If I don't restrict carbs, I have to restrict calories to a ridiculous level to lose wieght. I can eat about 500 calories more on low-carb to lose about the same amount of weight on higher carb. I'm also less hungry and feel better (a lot fewer flares).

Weather is still my biggest trigger (We've been havhing a lot of weather changes recently, and I'm in misery. Today I've been in-bed most of the day).

As for exercise - water exercise is amazing, especially warm water exercise. Unless I'm having a very severe flare, I can exercise in warm water. I suspect that I could even exercise in warm water during a flair if I were able to afford to have an indoor pool in my house (dream on). It's the getting to the pool, getting dressed and undressed that wipes me out.

Warm water pools are kept in the mid 80's, and the water isn't so much warm as it is warmer than the air - or ideally about the same temp as the air (when the air is colder, getting into the pool is awesome, but getting out again not so much).

You can ask your doctor or call the Arthritis foundation, or the department on aging and disability resources, or even your local United Way to learn if there are is a warm water program in your area. Even if there isn't, call around and ask indoor pools what temperature they keep the pool, or visit to check. I've noticed that many YMCA's keep their pool at a comfortable temperature.

If I won the lottery, I'd build a heated indoor infinity pool in my living room, and I'd virtually live in the water.

[Porthardygurl]

i agree with the person above..my mom suffered severe fibro and her thing was to just go in the water at the pool and bob..it was all she could do because she was in so much pain all the time. She went to a naturopath who helped her to radically change her diet, because there are certain foods that can trigger more pain in a person with fibro, and then others that help with reducing pain..if your interested, you should read a book called "the brain diet".. it talks alot about auto-immune diseases and all about how to reduce the symptoms to the point of almost being symptom free just simply by changing lifestyle. Dont get discouraged and dont get depressed..and yes i know it hurts..but you need to keep moving because its what people with fibro need to keep doing..to not do any movement is far worse for you..You can lose weight..keep going..day by day..

[kimmieval]

Originally Posted by Porthardygurl

i agree with the person above..my mom suffered severe fibro and her thing was to just go in the water at the pool and bob..it was all she could do because she was in so much pain all the time. She went to a naturopath who helped her to radically change her diet, because there are certain foods that can trigger more pain in a person with fibro, and then others that help with reducing pain...

Thanks ladies,

Unfortunately we do not have as any support groups that I know of...healthcare, while free, does not have the resources to deal with persons with issues (doctor's view, not mine...lol). I usually have warm weather, but there aren't many homes with pools. There is one pool beside me, but has been unused for years.

I think I am a carb addict, and I think it stemmed from going on a low carb diet (monitored diet) twice and feeling so weak, that my nutritionist recommended increasing my carb intake. I will see if I can cut back on my carbs. I am gonna start taking some Vit D and see how that helps.

Weather is a death to me...surprisingly, the cold does not bring on flares such as when I am in NYC or NC, but once it rains...I am down for the count! It rained here for about a week the other day and I was down.

Thanks for the support so far....