anyone with allodynia? pain with light touch, breeze,clothes, cold etc
Hoping to swop tips/coping strategies with someone.
After a muscle transfer operation on my upper back/shoulder I developed allodynia in most of my right upper side. Gentle touch such as bedclothes, clothing, light touch of someone's hand are all excruciating. Also a breeze even in summer or air conditioning are intolerable. So often I can't get out if it's cold or slightly windy and on the best of days even in summer I have to wear woolly hats, face cover and windproof layers. All the time it just burns and burns, until touch or something triggers it - then it's like icy knives cutting in.
Coping with it is difficult, I've had it nearly 5 years now. I'm on Gabapentin but it only helps with some of the pain. I try to find fabrics I can tolerate better, cut up thermal vests into sleeves with a shoulder/back bit attached then I can wear these in summer just on my bad side. I use little handwarmer heatpads - sometimes in my hand, as that goes icy cold, or sometimes I stick them on my arm. Travelling is a nightmare, especially in summer as I cannot tolerate open windows or air conditioning and cannot rest on the seat back with my right back.
The worst bit is feeling isolated. I know other people do have this condition -but no one I actually know. The odd things I have to wear - the rooms I cannot go into - or when I cannot open the front door due to draught - other people cannot really understand the condition and it makes it difficult to socialise so much of the time.
I am a positive person but this non-stop crazy sensation is hard to live with. I have recently found out that I have coronary heart disease/ angina and am now waiting for cardiac cathetisation. But that NOTHING compared with this hell of allodynia. If I could cure one of them I would go for the allodynia - and take my chances with the heart! For the actual heart catheterisation procedure I am not worrying, but I AM worrying about how I can deal with the arm resting on the bed during the process, and having a sheet or anyone touching my arm. I shall use meditation to get through it but I do dread it.
I find that relaxation/meditation helps me to keep positive and happy usually, it really does help. I would be lost without it. But I wish I could swop tips and ideas with someone else who had this. Maybe I can actually help someone else out there who's also dealing with it. I'm 54 now and want to lead as active a life as I can but this affects everything I do. Bliss for me is a hot bath (until my neck complains) and also a swim in warm pool, as I can move easily with water not air against me so one can find ways to be active.
Re: anyone with allodynia? pain with light touch, breeze,clothes, cold etc
Yes i have this nightmare in my L arm on up over both shoulderblades.It is called central pain syndrome.Unfortunetly there is not alot of meds to treat this nasty crap from hell.The best things that have worked for me are the lidocaine patches(not the gel,it does not work as well as the patches)doxipin cream?I don't know why this works but it does.My physiatrist Rxed this for me whenthe pain first started while I was in rehab recovering from a spinal cord surgery.one thing that I have not tried but I am strongly considering right now is Methadone.For some reason it helps quite well with nerve pain.again, don't know why, it just does.If I were you, i would do some research on central pain syndrome.You will be amazed at how well your symptoms fit this.marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.