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summer

Peripheral Neuropathy and Scleroderma

8 posts in this topic

I have Limited/Crest Scleroderma, and also have Peripheral Neuropathy. I'm just wondering whether this is caused by Scleroderma or something else?

 

Many thanks,

 

Summer

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Hi Summer,

 

Sometimes it can be due to various complications of scleroderma; but peripheral neuropathy can also be caused by other things, like diabetes. So it is a very important symptom to have properly assessed. Even with scleroderma, you'd want to know what is causing the neuropathy, such as, is it due to skin involvement, or carpal tunnel or Raynaud's, etc. because the treatment for each can be different.

 

So inquiring minds want to know what you find out regarding your particular involvement and how it can be treated?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I, too have CREST and peripheral neuropathy. I always assumed it was part and parcel of the CREST. It was diagnosed fairly soon after they finally diagnosed the CREST. I also have Raynaud's, Restless Leg Syndrome and have had bilateral carpal tunnel surgery. On my next visit with my rheumatologist, I will ask her opinion as to which is causing which.....


Peace :)

Barbara aka relicmom1

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Hi Summer - You can add me to that list. I also have neuroma in both feet. It is really a good question. I think I've always assumed that is was connected to the scleroderma. I will also ask my rheumatologist in February. I am on meds that seem to be routine for treating the neuropathy (gabapentin and a few others). It will be interesting to hear from others. Thanks for bringing this up and good luck with everthing-Ann

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Peripheral Neuropathy is how my disease started. After a year of going from doctor to doctor and finally seeing a neurologist whose specialty is neuorpathy (it was his determination to "put the pieces of the puzzle together") that he had me see a rheumatologist who then diagnosed me with Systemic Sclero. I also have 4 other diseases including Sjogrens, Raynauds, Polymyositis, and Hypothyroid. I have no idea if the sclero is why the neuropathy started but it sure seems to be connected. I have permanent muscle damage from the neuropathy up to my knees and hoping that it doesn't continue to get worse. I have constant leg pain. Which disease is causing this I have no idea but just gets hard to have to deal with. When it's less painful I just try to rejoice in what is considered a "good" day. I hope this helps.

 

Warm hugs,

Peggy

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I also have neuropathy in both my feet/legs/hands/face. I was told it was probably caused by sjogrens secondary to scleroderma. I do have pain from it that progressively gets worse as the day goes on. It is much worse in cold weather.

EAH


ANN

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Thanks everyone for replying, I have an appointment with my rheumatologist next week, so I shall be asking a lot of questions.

 

I didn't realise that this is somehow related to Sjogren's, so I shall look further into this.

 

Happy new year to all,

 

Summer

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Hi guys, I'm curious as to whether this is my main problem with the still yet not firmly dxed sclero. My problem is the pain and burning and tingling....no numbess, or weakness. If I didn't have the pain part, I would feel fine! Mine started with muscle twitching back in Nov .of 08 aft coming in from a 6 mile run.(Long time 26 year runner)then went to quad muscle pull, hip flexor pull, achy quads, and then a three day burning,tingling pain in my arms and quads and behind my knees. Rheumy ran tests positive SCL70 but all other tests, normal....had all baselines done.....normal...have had very mild Raynaud's for 14 years. BUT as time went on I had to change to swimming as the pain etc. would come on abt three to four hours aft working out. It continued to get worse to the point that I am basically bed bound for the last week. The last episode of burning,tingling pain seemed to be throughout my legs, arms, feet along with the muscle twitching and jerking....My appt with the sclero specialist at UAB is in a couple weeks, thank goodness,and the local rheumatologist here has put me on Lyrica for the time being. I can do short episodes of movement around the house...cleaning,etc. but if I do for longer periods of time...say 30 40 minutes....3 to 4 hours later, I am in terrible pain. I haven't been able to fnd anyone with the same symptoms....u "long timers" have any thoughts? When the rheumatologist asked me "Well, if u didn't have the pain, how would u feel?" I said, "fine!" So frustrating cause I NEED to move around......haven't been able to lift weights or swim since right before holiday. I am very concerned that if I can't exercise, I will go down hill very quickly....already am emotionally! :sick2:

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