It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Brain & Nervous System Disorders Message Board

anyone with allodynia? pain with light touch, breeze,clothes, cold etc

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 01-03-2005, 06:38 AM   #1
Senior Member
Join Date: Dec 2004
Posts: 103
happybunny HB User
Talking 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.

Anyone else with this "fire and ice" craziness?

Sponsors Lightbulb
Old 01-04-2005, 06:03 AM   #2
Senior Veteran
Join Date: Dec 2003
Posts: 10,120
feelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB Userfeelbad HB User
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 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
3-22-01,herniated C-6-7
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.

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Does anyone have Neurofibromatosis? kerrysmom95 Neurofibromatosis 5 05-11-2010 05:12 PM
anyone take Lyrica? SnowBunny89 Fibromyalgia 18 01-06-2009 11:07 AM
Does anyone have these symptoms? Lizzy73 Lupus 13 10-20-2008 07:16 AM
Is anyone there!! cazajacks Open to All Other Health Topics 14 03-04-2008 07:00 AM
FM and allodynia (painful touch) 4thof4 Fibromyalgia 11 03-27-2007 10:39 AM
has anyone tried calcium channel blockers? happybunny Reflex Sympathetic Dystrophy (RSD) (CRPS) 6 09-24-2005 01:14 PM
Questions On Nerve Damage CocoandChase Pain Management 5 01-31-2005 08:16 AM
Anyone a compulsive overeater?? Charlyssa Eating Disorder Recovery 383 06-01-2004 12:08 AM
Dysesthesia/Allodynia. andraa2 Brain & Nervous System Disorders 0 12-20-2002 08:24 PM

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:01 PM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!