happybunny
01-03-2005, 10:38 AM
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.
Anyone else with this "fire and ice" craziness?
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.
Anyone else with this "fire and ice" craziness?