Just wondering ?

[catkar]

Hello Everyone,

I am at my year anniversary of my diagnosis of Crest... At first I was in panic mode, but as the year has gone on I have calmed down and am dealing with it, however everytime I have an ache or pain I put it down to my immune system attacking my own body... Does anyone have some of my symptoms...

1. My toes are always numb unless I push them against something, though I can't even bear the weight of a sheet on them. The thickening in my skin has given me a claw like appearance.

2. My fingers are swollen and I get pins and needles at night constantly moving my hands and legs to get circulation back.

3. I have intermittent burning in my feet and legs but they feel cool to touch.

4. I get sudden pain in my knee hip shoulder and other joints out of the blue.

5. I get a pain underneath my ribcage as if a belt is being pulled tightly round my middle.

There are other symptoms Raynuads etc and I know everyone has there own symptoms I just miss feeling being me .....

I have noticed a weakness in my muscle tone and have taken up pilates twice a week for the past 6 months to try and maintain what I currently have...

If anyone has any advise on the feet situation or the tightening around the rib cage (is this even Crest related ) I would appreciate it.

Take care all spring is coming ...

Cathie x

[cowhide]

Dear Cathie, congrats on getting through your first year! As you say, after an initial panic, one has to learn to live with it. I too have the CREST set. You don't mention if you are on any medication. I used to get stabbing joint pains but these have gone, but they might have been related to low Vit D levels which have now been addressed (mega dose for about 3 months now on a maintenance). My toes - feet in fact - are almost permanently cold and numb, due to Raynauds (despite sildenafil), make sure you keep them well moisturised and as warm as poss, and check them every day. My skin tightening (which isn't too bad yet) is worse on the right side of my body and my right hand/arm is weaker than my left, despite being right handed. Mycophenolate does seem to have helped to put the skin tightening 'on hold'. I do a lot of physical work which uses my muscles but pilates is probably ideal for you. Regarding the ribs - do you have reflux issues? This pain might be related to GI involvement/heartburn which is very common in limited Scc. Take care x

[catkar in reply to cowhide]

Hi Cowhide,

I had a huge dose of vitamin D for 6 week then my readings came back to normal, however I was not given a maintenance dose , I took it upon myself on the advise of an anaesthetist to take 3,000 mil on a daily basis which I have in spray form from Holland and barrett.. I do have reflux issues and take gaviscon and lanzoprazol every day as well as Rennies.... I have resisted taking any medication apart from Losartan (100mg) , Thyroxine, Urso acid (Liver) and Pregabalin (nerve damage)...

My Raynuads is getting worse and the thickening on the soles of my feet is getting worse. I also take eye gel for sjorgens (dry food is a nightmare ) ...

I appreciate your reply and I do moisturise my feet every other night in bed.... I have to go to bed 30 minutes earlier to do all the meds moisturising etc its a right palava .lol !

My Gastro entorologist thinks the pain under my ribcage is Musculo skeletal !! one more thing to contend with...

Hope all is good with you......

Cathie x