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Peripheral neuropathy / sensory motor involvement


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#1 Looking4answers

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Posted 14 January 2009 - 04:34 AM

Good Morning All!

I hope everyone's New Year is off to a good start (or at leat better than last year). I have yet another question.....has anyone experienced pain, tingling or numbness due to peripheral neuropathy? If so, how are you treating it? I was also wondering if this can be caused by the sclero or if it is unrelated. Funny.....I am on my way to a neuro doctor in just a few hours but really would love input from you all.

Have a great day.

#2 Jeannie McClelland

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Posted 14 January 2009 - 06:15 AM

Hi L4A,

Yes, I have those symptoms, but it's never been diagnosed as specifically due to the sclero. A pain doctor put me on Neurontin, but I ballooned up like mad, worse than with the prednisone. My general practitioner prescribed big lidocaine patches to put on over the worst areas, but I turned out to be allergic to the adhesive! <_<

My rheumatologist suggested using a heavy balm like tiger balm, petroleum jelly, or the like. Strangely it does seem to help and the side effects are great - no snowstorms from dry, flaky skin.

I'll be interested to hear what your neurologist has to say.
Jeannie McClelland
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#3 Looking4answers

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Posted 14 January 2009 - 10:47 AM

Hi Jeannie;

I just wanted to let you know that the doctor prescribed Lyrica which is used to treat the pain of nerve damage. He was yet another strange one. I do not think he was very familiar with sclero or neuropathy. At one point he picked up my file (all info that I provided him with) and went to consult with another doctor....not very reassuring. He also said the way to keep the nerve damage from becoming worse is to get the sclero under control.....I bet we all wish it was that easy. This is all very new to me...I am looking at 8 pill bottles not 100% sure of what any of them do. My entire life I was never ill.....had a hysterectomy in 2005 and it has been downhill ever since. The crazy thing is that I have not even reached 40 yet.

Take Care

#4 red

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Posted 14 January 2009 - 12:13 PM

Hi Looking for Answers, good to hear from you again, I'd like some answers myself, am looking forward to others' comments!
I've had trouble with wrist pain, numbness, tingling in my hands (for a few years), was tentatively diagnosed as carpal tunnel long before my sclero diagnosis. Was treated, with partial success, with splinting at night. Lately I've had my feet going numb as well, with pain as the numbness goes away, been told it's not Raynauds as I have no color changes. I get some relief from the pain with the lidocaine patches that Jeannie mentioned. None of my doctors will even consider giving me anti-inflammatory meds because of my recent history of esophageal and gastric bleeding, although years ago I felt great on Vioxx, was on it a few years before it was taken off the market. Yesterday, I had only my 2nd rheumatologist visit since my sclero diagnosis, tried to pursue a conversation if the wrist, hand and feet symptoms were sclero-connected but got the brush off and was told it was probably osteoarthritis! :unsure: Back to the (doctor) drawing board! Not sure where to go now, let us know how your visit with the neurologist goes!
red

#5 Peggy

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Posted 14 January 2009 - 01:20 PM

This is how my sclero started. First my hands and feet tingled and then from there it advanced to them becoming numb. That has traveled up my leg as far as the knees. I doctor with a neurologist whose specialty is that he's the leading neuro guy in Minnesota that deals with peripheral neuropathy. He is wonderful. He treated it with neurotin and lyrica and then had me see his colleague who was a rheumatolgist who then was able to determine that I had sclero, Sjogren's, Raynaud's and polymyositis. I continue to see the neurologist to keep a watch on the damage to my nerves from the neuropathy. I see that there are a number of us who have sclero who have this so there must be a connection.

I don't take the neurotin or lyrica anymore and just deal with it through my sclero meds. I'm on Cellcept and a pain patch for the nerve pain and also take pain meds in addition. I have also been on IVIG treatments but I don't believe they are working so I have discontinued them until I meet with my new doctor in February to see what he thinks. I'm anxious to have a new set of eyes on my situation to see what he thinks and which way he will go with treatment. I am also dealing with worsening lung issues so those tests that are going to be done in February will be a relief to see how bad they are.

I have been told by my neuro not to sit by a fire because if they were to become on fire I wouldn't be able to tell that due to the damage to the nerves. Interestingly, the neuro doctor that I saw back when this all started at the Mayo Clinic told me to "learn to live with it"! Can you believe that! At the time it was progressing up my legs and I wasn't sure just where it was going to stop or go up my entire body. I could have hit him across the room but instead just walked out and proceeded to find a different doctor. Thankfully I found one whose specialty was this and from there I found out just what was the culprit in all of this...................Sclero!!!!

Warm hugs,

Peggy

#6 Looking4answers

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Posted 15 January 2009 - 03:32 AM

Good Morning Red;

Nice to hear from you also. All I got out of the neuro doctor what to start taking the Lyrica. Maybe it is wishful thinking but I already feel like some of the numbness has been alleviated! I wish you the best of luck with everything. Keep us posted and Have a Wonderful Day. Snowing here on the east coast~

#7 Jeannie McClelland

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Posted 15 January 2009 - 05:54 AM

Morning All,

I've had to giggle when I read of the different doctors' replies and advice. I'm never sure whether the ones who are like that are being dismissive or whether they think they are actually being reassuring! :D

I haven't tried Lyrica, it's new on the market since the last time I saw the pain doctor. I think it's "pregabalin" and would work in similar ways to Neurontin, which is gabapentin. Good luck to those who are on it!

A thought about all our pill bottles - you might set up an appointment to talk with your pharmacist, if you like him or her, about what the meds are, what they are supposed to do, interactions, don't-take-with's, etc. I'm fortunate in that my oldest daughter is a pharmacist. She periodically does a review of my meds and prints me out several sheets of things she thinks I need to be aware of. (She also drives her dad nuts by going through the medicine cabinet and tossing anything she thinks is stale-dated or no good! :lol: )

One thing I have noticed is that heat seems to make the burning sensation worse (the comment about sitting too close to a fire reminded me of that). Another is that if the affected area is normally covered with clothes, any sort of texture, other than very smooth, drives me nuts. I used to be able to put a fleece jacket on over a short-sleeved tee, but can't stand the brush of the fleece against my skin. Same with the feel of jeans on the worst patch on my legs. I'm dreaming of the day I win the big lottery so I can have everything made of silk!! :D
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#8 Sweet

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Posted 15 January 2009 - 08:44 AM

Hi Looking,

Yes, I have had problems with the same thing. I also was put on Lyrica, although since then I went off of it, due to the weight gain I was having... Been having problems again recently, so I guess I should consider going on it again. What dosage did he give you?
Warm and gentle hugs,

Pamela
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#9 Looking4answers

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Posted 15 January 2009 - 08:56 AM

Hi Sweet;

Ok, now you are scaring me. I had no idea that weight gain was associatied with Lyrica.....that is my BIGGEST fear. Dont worry about the sever pain, constant itchy skin, heart burn, lung issues....it is all about the weight gain.

It is amazing how the doctors treat us. He really scared me too with his ignorant questions...such as where are you, why are you hear, spell world backwards (well I failed that miserably and just started to cry). I will try to post often with any updates I receive regarding new meds or anything.

Thank for the replies, it helps me so~

#10 Sweet

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Posted 15 January 2009 - 09:03 AM

Sorry, I didn't mean to scare you, but to be honest, weight gain is one of the biggest factors I use when deciding to agree to take a medication or not. I gained 10 pounds licky split on the Lyrica. I haven't lost it yet either. I've gained 35 total since diagnosis and I hate it.

What dosage did he put you on? I was only on 50 mg at night....
Warm and gentle hugs,

Pamela
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#11 Looking4answers

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Posted 15 January 2009 - 09:10 AM

Sweet,

The Lyrica is 50mg twice a day. How did you know it was from the Lyrica? Where can I find information on the different pills and weight gain. I did not see weight gain as a side effect but the side effects they do list for this drug which are....suicidal thought...mood swings (already have those), depression. I realize that they are just possible side effects but it is still scary. The other pills are Limbrel, Vitamin D and C, Corvite (multi vit) and Plaquenil. Do you know if any of these are also associated with weight gain? I have also gain alot of weight. Prior to my hysterectomy in 2005 I was 115 pound...now between the hysterectomy and all this other stuff I am already 130. I know that is not huge but when you are use to being thin it makes a big difference. You very thin from what I can tell by your picture.

PS....where is the spell check button on this forum????

Have a great day~

#12 Sweet

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Posted 15 January 2009 - 09:16 AM

Looking ~

Look at the side effects again, weight gain is there. I knew it was from the Lyrica because nothing else had changed for me.

I feel strongly that Plaquenil also causes weight gain. I'm on that and once I started it, that is when my weight skyrocketed. I'm a very big health nut so it's not like I'm eating junk, or any of the wrong food either, so I can't kid myself and think perhaps it's something else. For me it is the meds. You should be able to look any of your drugs up online and find the side effects. If not call your pharmacist.

Like you I'm not obese or anything, so most I am thin, for for me I'm not!

I'm not sure the forum actually has spell check, but I use google tool bar and it comes with it. Maybe you can look into that.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#13 Looking4answers

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Posted 15 January 2009 - 09:30 AM

Hi Sweet;

You are correct.....I found a blog about it and it looks like the average weight gain is 10 pounds but with people on 300mg or more it was around 30 pounds. I am going to call my doctor tomorrow to see if there is something else I can take. Right now both feet are sleeping so I think I need to take something. Thank goodness for everyone on this site!

#14 gigi08

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Posted 15 January 2009 - 04:02 PM

Pamela,
I had to chuckle when I read that you said plaquenil caused weight gain. I've been giving plaquenil the credit for helping me to lose the last 5 pounds that I've been trying to lose for awhile. Now I'm wondering if it was the plaquenil that really helped.

Jeannie,
You mentioned all the pill bottles. I wish there was some way we could recycle those pill bottles that still have pills in them because our meds got changed. I'm starting to get quite a collection of different meds because they keep changing me. I just got 4 new ones in the mail today. Needless to say, I've never liked taking any meds so this has been a very hard journey for me and sometimes I'd like to just quit taking them and see what happens.

Have a wonderful evening
Gigi
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#15 Purr

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Posted 16 January 2009 - 07:29 AM

Wow. I didn't realize there were so many treatments. My neurologist has put me on cymbalta for neuropathy pain. I'm on a low dose right now (30 mg once a day) and it seems to help some. My cousin took it for fibromyalgia and said it worked very well. She had to stop taking it though because it raised her blood pressure.

Christy
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