Has anyone had inflamed nerves on skin?
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August 20, 2009 at 10:06 am
These area starts out with a burning sensation, then little bumps that itch and burn so bad you end up ripping the top skin off. Really really hurts. Neurotin calms the skin pain down. It is the only thing that I have found that will help the skin pain.
I also have bad fatigue and have not been able to work in a long time.
Also without neurotin most of my body feels it is on fire. Have neuropathy only on one lower leg and foot. Confirmed by EMG.
I am out of remission and this is insane trying to find a doctor. The last one I saw said I should be careful about getting ripped off with bloodwork and he only treated conventional medicine. I had had stellar bloodwork done in the 90’s and I charted all the test and the results. I had the test repeated 4 times so there was a history. It was unfortunate that I intimidated the doctor.. I had had gamma gobulin injections and they were wonderful for a while (went back to the same after 1 year). I got desperate and tried alternative.. did chelation and vit. C IV and my positive ANA went to normal. It did not help very low natural killer cell activity though. At present after coming into pain again, nothing is helping except neurotin. I just started b12 injections to see if that will help. It did before.
I see a university immunologist in 6 weeks.. I as fearful I will be in remission regarding my skin.
I had silicone breast implants and when explanted there was appx. a cup of gel in chest cavity. Got really sick, had sparkling spit for years.. Did the IV’s of C and chelation and diet of course and was able to function again.
Sorry this is so long.. but I guess I am interested in knowing about the skin eruptions and pain. I am so discouraged… mention implants and doctors just glaze over. Show them bloodwork and they glaze again (My GP warned me they would not understand..Thank goodness he does) -
August 21, 2009 at 4:19 am
I have been dx with CIDP for over 5 years now and for the past 2 years have been in remission sorta. I take 30mg of morphine ms contin twice a day for my pain management. Also I take zolft for the depression. While I was going through my dx stage which took almost 3 years I was also dx with Celiac which is a Gluten intolerance. When I eat anything with Gluten I break out on my back with little white bumps that itch so bad that if I don’t scratch it I think I am going to loose my mind. Also my skin feels like it is on fire. I also have had such a hard time with sweats. Daytime and nighttime it really does not matter. It is not my hormones so my drs say. Just wanted to share my skin issue and hope that you do not have Celiac, but if you do get it dx. Always in my prayers anyone and all who suffer with CIDP.
Susan
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August 21, 2009 at 11:20 am
Have you been checked for shingles? I am not a doctor (I don’t even play one on TV:p ), however, I have had several family member that have had shingles and they have similar symptoms to what you are experiencing.
I am new here and have not posted much yet.
Thanks for allowing me to add my two cents!
Sue -
August 21, 2009 at 12:12 pm
[QUOTE=sblilbit]When I eat anything with Gluten I break out on my back with little white bumps that itch so bad that if I don’t scratch it I think I am going to loose my mind. I also have had such a hard time with sweats. Daytime and nighttime it really does not matter. It is not my hormones so my drs say. Susan[/QUOTE]
[B][FONT=”Georgia”][COLOR=”Sienna”]I’d guess hives from the gluten.
When you mention sweats … I am SO glad to read that someone else is having to deal with this problem. They just happen … no rhyme or reason. My neuro immediately wanted to do a sleep study. Well, no … not when the sweats can happen awake or asleep … usually awake, actually. The sweat rolls down from my head in literal streams. It’s CIPD. Maybe something not seen all that often, but it’s definitely CIPD[/COLOR][/FONT][/B]
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August 21, 2009 at 4:14 pm
I had the sleep study done and it was negative. You are right there are not rhyme or reason to when the sweats happen. I HATE IT! It is embarrassing for me. I also break out in hives over nothing. It seems that I am very hyper-sensitive with no consistence to a trigger. Some days it could be food and other days it could be sunscreen and other days it is just nothing. It is the most frustrating symptom I have.
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August 21, 2009 at 4:18 pm
Yes I have had shingles at least twice a year for the past three years. That is what my physician has concluded. I never really get over them they just go into a milder state. Still it is so painful. Does anyone take morphine MS Contin for pain management? I want to try to find something different for pain but so far have been unsuccessful. Please share any thoughts……
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August 22, 2009 at 10:42 am
[QUOTE=petalinthewind]Have you been checked for shingles? I am not a doctor (I don’t even play one on TV:p ), however, I have had several family member that have had shingles and they have similar symptoms to what you are experiencing.
I am new here and have not posted much yet.
Thanks for allowing me to add my two cents!
Sue[/QUOTE]
I have had shingles and my bumps are not it. I have had shingles and this is so totally different in as to the size and shingles are OMG so painful you cannot allow anything to touch them.. The bumps as they come nearer to the top of the skin are very itchy. When you scratch they break and burn, this is while the whole area has a stinging sensation. With neurotin the pain goes away, without it my body feels like an iron has been put on it. The last expensive bloodwork I had showed a lack of natural killer cell activity. I had noticed that when the activity is close to normal there is no pain. thanks for answering.
Merry -
August 22, 2009 at 10:53 am
[QUOTE=sblilbit]I have been dx with CIDP for over 5 years now and for the past 2 years have been in remission sorta. I take 30mg of morphine ms contin twice a day for my pain management. Also I take zolft for the depression. While I was going through my dx stage which took almost 3 years I was also dx with Celiac which is a Gluten intolerance. When I eat anything with Gluten I break out on my back with little white bumps that itch so bad that if I don’t scratch it I think I am going to loose my mind. Also my skin feels like it is on fire. I also have had such a hard time with sweats. Daytime and nighttime it really does not matter. It is not my hormones so my drs say. Just wanted to share my skin issue and hope that you do not have Celiac, but if you do get it dx. Always in my prayers anyone and all who suffer with CIDP.
Susan[/QUOTE]
I will look into the gluten.. I only eat sprouted breads but I will start watching the gluten..
BTW I sweat a lot also.. I keep my bedroom at 61 degrees and I throw covers off and on.
I just had a lumpectomy for breast cancer and went on tamoxifin which is a estrogen blocker. I have noticed that I sweat less. I cannot tolerate heat except in a steam or sauna and then I go into a cold dip (52 degrees) for 15 minutes.. that is wonderful after the first 3 minutes and gets to feel really good after 5 minutes. I read up on it and it is good for the immune system and it helps muscles after exercise plus it releases endorphins.. -
December 28, 2010 at 12:48 am
I have bright red spots that can be any place on my body just over night it seems. I have had this happen about every 5 years for the past 20 years. It takes about 2 months to get these to disappeare. I break out in a sweat at anytime summer or winter. I keep the house super cool the year round…at 58 degrees. It makes it cheaper to heat the house in the winter, but it catches up to me in the summer tho while useing the AC.:) One person commented that it was so cold in my house that you could hang meat in there. The sweats are embarrassing, but what can we do ? I can take a shower and by the time I get dry and put some clothes on sweat is streaming down my face. It takes a hour or longer of just laying still in the bed to get the sweats to stop. What alot of good it was to take a shower..right ? It all has to do with the messed up immunine system. I take cymbalta and lyrica and 80mg of oxycontine 3 times a day plus two kinds of muscle relaxers. Hang in there; it will all be over one of these days.
God bless, Drummer
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