CMT or lupus?

[strawberryshortcake]

Is it possible to have CMT, reynards and lupus? Can you have lupus without a rash or just a small rash now and again. I had a small one on my face but it went, now I keep getting it between some of my fingers.

[Amanita]

Hi, Strawberryshortcake,

I have just looked up both Lupus and Reynaud's disease, and find that lupus is an autoimmune disease, so I suppose that having CMT would not absolutely preclude having lupus as well. If someone did, it would be an example of very bad luck, a bit like having CMT and, for example diabetes, or CMT and arthritis. It would be nice to think that CMT prevents you from getting other stuff !

Reynaud's disease seems to be characterised by having very cold extremities, which tend to go white - in winter, or sometimes as a result of stress. CMT certainly can quickly make my hands unusable- then painful, in cool conditions, and it is very hard indeed to warm up my feet once they get cold. Mine go purplish or bluish, not white.

So it seems to me you need to do some more research (after all there are lots of things that can cause a rash, and fatigue, too) - or much better, consult a qualified medical expert.

[strawberryshortcake in reply to Amanita]

I've definatly got reynards and arthritis. I was diagnosed with CMT about 12 years ago but other people think some of my symptoms are not like CMT. I cough a lot get really bad tingling, all over the place,I've got a bent elbow and bent fingers , itching, and I've had flue like symptoms that come on out of the blue and after a few doses of asprins go away. Fatigue is the worst which has got worse with every operation I've had. Really hard to get dressed, I can't Hoover. I find it hard to pick up plates, frying pans and big bottles of milk. I can't climb the stairs. Some things came on about 15 years ago but others. Such as itching and bent fingers I have always had. Terrible toes. I couldn't do gym at school. I've no balance so walking about gets really hard these days. I sound nouroticit took ages to get my doctor to send me to a nourologist but now he's retired and my new doctor told my husband he thought I had ME so I'm reluctant to tell her all these things. Iv been having physio for3 months because of a pain in my leg that apeared almost overnight. Was so bad I couldn't walk hardly at all. At one point u could only shuffle backwards, then after 6 months it disapeared. Absalutely mad.sorry this is long. I expect you gave up reading it ages ago. Thanks for your reply. Strawberry shortcake.

[REGreen]

Dear Strawberryshortcake.

Sorry to hear of all your problems. The itching between your fingers and rash could be Lichen simplex or Lichen planus. I have both CMT and lichen simplex. The lichen is nothing to worry about, just another nuisance. I was diagnosed with Raynaud's phenomenon (not Raynaud's disease which is something else) years ago before I showed any signs of CMT, but looking back I think it was an early sign of the onset of CMT. So far no one has suggested that I might have lupus, but my poor father was never diagnosed with CMT, although he had classic presentation, and lupus was one of the wrong things he was diagnosed with. Like most of the other way out things suggested for his symptoms it was quietly forgotten. Reading posts on this site, it seems that CMT can occur with many other things (not least getting older) and also that the range of symptoms associated with CMT is wider than many doctors suppose.

Best wishes,

REGreen

[strawberryshortcake]

My reynards came on in the middle of summer 1985 in a heatwave. I was under a lot of stress at the time as we were in the process of adopting a baby. It came on late in the day, just pain in my fingers at first then they went blue. When I went to bed , everytime I dropped off to sleep I was woken with terrible pain in my arms and hands. They went dead when I went to sleep and it kept me awake all night. The CMT didn't really show till about 10 years later when my legs suddenly decided not to walk anymore on the way up a big hill rushingy younger adopted daughter to school. It was all down hill after that. I had always wondered why I found it such hard work to Hoover and do the housework. If I walked to the shops I'd be totally exhausted when I got back and would. Just fall on the sofa with my coat on for about 15 miniutes. I was diagnosed with CMT but not which type it was. Trouble I'd the nourolagist had wrongly diagnosed me years before when I was 18 with Epalepsy. He did the same with hundreds if other people so I don't know whether I have it or something else.

[Brad2613]

Hi Strawberryshortcake,

I was born with CMT. I never let it control me. Once i learned I had CMT around the age of twenty I was already lifting weights six times a week and relying on my healthy muscles to compensate for my damaged ones. Almost nine years ago I was in a very terrible car accident where my car flipped over and rolled down a steep embankment. The trauma and damage to my body and brain was significant. After about eight months of awful pain my doctor did a comprehensive blood test that showed I had Lupus. At that time it was believed you cannot get Lupus through severe trauma. Being I am a white male the odds of me having Lupus were very small. I went through repeated tests and there was no doubt that I had Lupus. I joined an online support group in the US and posted my profile. I was immediately contacted by two women whose husbands had an almost identical story. Eventually I found out that there was no doubt based on more recent tests that trauma is a recognized cause of Lupus. I was overwhelmed rapidly with diagnosis of Fibromyalgia, extreme photosensitivety, short term memory loss, Lupus Fog, recently small fiber neuropathy was added to the list. I had concussions from the car accident and recently had five discs in my neck replaced and my neck fused. I have constant numbness in my shoulders arms and hands and was told a few months ago that I have cervical spinal stenosis at six levels in my my neck. Surgery may eventually be my only option. I have been in the hospital many times due to small cuts on my calves and shins that became infected because my immune system is compromised by the Lupus. I am utterly fatigued almost always. Get exhausted from doing little things. Have almost no recall of anything I read and my short term memory is almost zero. It is like yesterday never was. My long term memory was damaged by the concussions and undoubtedly is not helped by chronic pain, severe depression and anxiety. My youngest son thinks I have Lupus Fog all the time since I don't remember what I say to him. I can go on and on. If I was British I would probably say it's a "spot" of bad luck :). But I am American so I will say it is tough to stay sane and I wearing down. I also can say I never ask G-d why me. Better to ask myself why not me. It is all a test and G-d has more confidence in me than I have in me. Without my wife I would not be here and most certainly have given up by now. Everyone on this site is struggling in ways it is hard to understand if we are not dealing with same illnesses or combination of illnesses. I hope the Almighty strengthens you and all others that are enduring terrible illnesses. But to answer anyone who wants to know, it is possible to have Lupus and CMT and much more together. Take care.