Jump to content
Sclero Forums
Sign in to follow this  
Joe2

Diffuse scleroderma and myositis.

Recommended Posts

I'm trying the autoimmune protocol (AIP) diet in a desperate attempt to outwit very rapidly progressing diffuse Scleroderma and myositis. I was very fit two years ago,and only had Sjogren's symptoms this time last year, plus mild Raynaud's.

 

It is my only hope. I'm having a scary time with huge changes each week, struggling with walking, eating, much pain  etc.

 

I haven't yet been started on any medication.Can anyone suggest what medication can help please?

 

Also does anyone find the AIP or other diet helps?

 

Thanks for any feedback.

 

 

Share this post


Link to post
Share on other sites

Hi Joe2,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with very unpleasant symptoms and I can understand your sense of desperation over what appears to be a steady worsening of your condition.  Please note that I have no medical training (except a now out of date first aid certificate ) however, I would advise that systemic scleroderma patients should always consult their doctor(s), especially their rheumatologist, before making any significant changes in their diet. In general, most doctors recommend that scleroderma patients follow a normal, well-balanced diet and do not cut out any food groups from their diet, nor go on any "cleansing" diets, since this may accelerate the disease process. We have a medical page on Diet and Systemic Scleroderma, which I hope you'll find informative and useful.

 

Since your symptoms appear to be galloping on a bit, I would recommend that you consult a listed scleroderma expert, as such a complex disease requires specialist knowledge and expertise and any dietary needs and medications should be taken under the advice of a properly qualified professional.

 

Kind regards,

Share this post


Link to post
Share on other sites
On 12/27/2017 at 11:39 AM, Joe2 said:

I'm trying the autoimmune protocol (AIP) diet in a desperate attempt to outwit very rapidly progressing diffuse Scleroderma and myositis. I was very fit two years ago,and only had Sjogren's symptoms this time last year, plus mild Raynaud's.

 

It is my only hope. I'm having a scary time with huge changes each week, struggling with walking, eating, much pain  etc.

 

I haven't yet been started on any medication.Can anyone suggest what medication can help please?

 

Also does anyone find the AIP or other diet helps?

 

Thanks for any feedback.

 

 

I have pain everywhere. Not aware of diet. I have myositis. I am disabled and my pain doctor gives me some effective medication. It works well for me.

Share this post


Link to post
Share on other sites
On 12/27/2017 at 11:39 AM, Joe2 said:

I'm trying the autoimmune protocol (AIP) diet in a desperate attempt to outwit very rapidly progressing diffuse Scleroderma and myositis. I was very fit two years ago,and only had Sjogren's symptoms this time last year, plus mild Raynaud's.

 

It is my only hope. I'm having a scary time with huge changes each week, struggling with walking, eating, much pain  etc.

 

I haven't yet been started on any medication.Can anyone suggest what medication can help please?

 

Also does anyone find the AIP or other diet helps?

 

Thanks for any feedback.

 

 

Hi Joe2, 

Has anything improved your myositis? I too am feeling muscle fatigue in one arm that just came on suddenly. Recently noticed muscle atrophy in my calfs. I too was very fit and my leg muscles were my best attribute. It is crazy because I have not had any symptoms of scleroderma as I was recently diagnosed and coincidentally since I started taking Cellcept I started feeling all kinds of issues to my muscles (spasms & atrophy) and nerves. I just think it is odd that all these symptoms have came about shortly after my diagnosis and put on Cellcept. 

 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

×
×
  • Create New...