Chronic Pain

[reruho]

PLEASE DO NOT USE ICE IF YOU HAVE RSD/CRPS. Ice is the worst thing you can use, it causes more damage to the nerves for RSD/CRPS sufferers. Yes, it may feel good while you are doing it but it is one of the things will hurt you in the long run. Dr. Hooshmand, a well respected expert on RSD (at www.rsdrx.com) say this:
"The use of ice or Capsaicin has been shown to cause inflammation and death of the nerve fibers, especially the larger myelinated nerve fibers. Then the unmyelinated nerves are left uninhibited and unopposed with acceleration of CRPS pain (large myelinated fibers stop conducting at 20c, but unmyelinated fibers keep conducting down to zero degrees)."


I have to tell you I am one of those that used ice to combat swelling and now know that I may have made my condition worse. It did make me feel better and reduced the swelling but now I regret that relief. But, I was following instruction from the uneducated.

[nearlynew]

Just to clarify re; the use of ice was specifically for those of us who have radicular pain from disc pain. At least that is my case. THe pain from spinal cord injury due to disc is much like MS pain when the mylein sheath on the nerve is being destroyed. However, our nerve endings are not being destroyed but have received injury. Thus if you have the diagnosis as indicated in the earlier post of course please heed their words.

Re; Sue, I feel for you. I am close to reattending the pain clinic. The nerve blocks did nothing but I can tell you anaesthesizing the nerves really helped. I just got burned out of all the associated meds he had on my plan; the more meds leads me to Irritable bowel and I had just bought a kit IBS KIT that over the last year had helped me get this under control after all the anti inflammatory/percocet which dramatically affects your intestines. BUT, he did offer me a pain patch and I reluctantly keep it in my drawer - I was to put it half on but I was so frustrated to have to take more meds; especially get readdicted because where you take a 1/4 percocet or 1 whole the next night I could feel my body saying "hey where is that". Like you however, I am getting to my wits end after 8 years of this and now the swallowing. I look in the mirror and wonder what is going to happen to me.

My father in law passed away with a terrible dose of cancer this past year and the latter stages went into his throat. The poor soul had to travel to get his throat stretched and sit in emerg for hours till someone would get him the referral. What a way to treat a human being! I used to sit with him as I don't think he was unfortunately very sympathetic with my plight - he was a great man just not really understanding - again until you walk the walk- we would talk and he would look into my eyes and I knew he now knew what my injury was like - to a degree - and what I lived with.

However, like you my two children 16 (girl) and 22 (boy) are my life; I adore my husband and he is very loving and supportive. However, you cannot talk about this daily ..life is for the living and my living this life has changed...not theirs. So I will rethink my meds as I am getting weary like you. It would be nice to wake up and not feel this for just a few hours and only meds can do that. So ...as my husband said in an attempt once to keep me strong.."manage your pain..be responsible". That got my goat and made me mad and got me to the pain clinic ...so....

I am so glad we made contact...your girls are certainly your inspiration too. May god bless you and keep you sane....

Sincerely Elaine
PS today is bright and sunny and certainly worth enjoying !!!!

[jud]

FOR THE LAST 2 MONTHS I HAVE HAD THIS BURNING AND PAIN UNDER MY LEFT SHOULDER BLADE SO THIS MORNING IT IS UNDER MY RIGHT ONE I WENT TO MY FAMILY DR THEY SAY IT MIGHT BE SHINGLES BUT THERES NO BREAKING OUT ON MY SKIN THE PAIN GETS SO INTENSE SOME TIMES I THINK I CAN'T STAND IT ANYMORE THR DRS WILL NOT GIVE YOU ANYTHING BECAUSE THEY THINK YOU WILL BECOME ADDICTED WHAT ARE YOU SUPPOSED TO DO?

[oak1day]

I just began lyrica today. I have been diagnosed with dermatomyosits. But they cannot find a reason for so many of the symptoms. I have been told it is a rare disease and what I have is a rare subset of it!

Anyway, one of the things I go through from time to time, most recently, right now and the last week or so, is a burning and tingling neuropathic pain in my upper arms, calves, feet and even at night it feels as if it is in my esophagus too. I get itching as well.

Like so many posters related on this topic, codeine DOES help, but I am very very miserly with it because the last thing I want to do is build up a tolerance. Nor do I want to go through that lovely and demoralizing suspicion dance with the doctor. So when I say miserly, I do mean very miserly. Mainly maybe 30 in 6 months. Break them in half. So basically, I suffer. Luckily, I go through blessed periods where other stuff, or nothing is going on.

Lyrica has been prescribed several times but I shied away, because I try so hard not to be on a daily med if I can help it. I have needed blood pressure med since my thirties and daily asthma meds in cold weather. When i first diagnosed me with the dermatomyositis in 2005, I was on a ton of stuff. It is a serious disease, but it seems I may have a mild case of it. I took prednisone, methotrexate and all the stuff they prescribed for the inevitable side effects from THEM! For me, this caused as many physical issues as it solved, so I weaned myself off of it. I do alternative therapies and like "as needed" meds as much as possible. Unfortunately, with neuropathic pain, there does not seem to be too much does there!?!

The hardest thing, since just before I was diagnosed, is that mostly am not up to doing consistent exercise and I was a jogger for decades. Recently I was walking again and even jogging a little and SO HOPEFUL AND HAPPY. But now this neuropathic pain is getting worse lately so tried Lyrica beginning last night.

[fireball]

dear burning and pain i only hope you come back and read this. what you have is rsd or some called crps. I know i have it and all the symptoms that you have. the doctors are somewhat right it is nuertophy as rsd deals with nerves. an easy explanation of this disease is that your nerves are hyper--at first they try epidural injections to settle the nerves down in hope that they will stay that way and take away the pain and buring--unfortunately it doesnt work for all people especially when the rsd has spread throughout the body. i also have full body rsd--all my limbs burn including my stomach back burn--loud noises send a electric shock through my body--i dont feel like doing anything and of course depression sets in. this all started in 1994 i did nt walk for 5 years then it reolved enough so i could return to work--in 2007 i suffered an injury that brought in on full blown again. i have been in the er many times i take morphine pills and oral morphine zanxa flexeral kolonipinn benedral to try and sleep,cymbalta and lyica. this last year i had injections that did not work. i hated my life as you i have a wonderful spuouse and 2 children i have missed alot of things. when the injections did not work my last hope of getting off the morphine was a spinal cord stimulator. m I had heard the ups and downs of it but there was nothing left to do. the do a week trial first if it takes away 50 % of the pain it is considered a succes and will implant it in you. i started this all the beginning of dec. the trial was hard as the rsd made my body swell when the wires were put in. oncw the swelling went down i could start using the programs and to my amazement the tens unit really made your brain think of it not the burning pain. on dec 26 i had the implant. after the surgery your basically in the chair in pain(from the surgery) like before but you know have a device to help with the burning pain. 3 days ago i had the staples removed and new programs added to the machine. it is the best i have been in 2 years---what i can do my attitude it has really begu to change my life. being weak for so long and no energy i tried a energy drink 2 days ago--i do not drink coffee--i myself cannot believe what a different person i am. i feel like getting upand doing things--i actually sleep--i am once again the person i was and i can control the amount of pain or no pain. i really recommend that you talk to a doctor about the spinal cord stimulator after everything possible for rsd done to me and all the meds since 1994 this ius the only thing that has given me back a life i wish you well and dont give up the fight--your family deserves the you back its a terrible disease b ut we cant give up

god bless

[springdaisy]

Hello I was diagnosised with RSD a year ago. I understand what you are saying about the burning pain I at times want to cut my arm off I am now having burning pain in my left arm it is a pain that takes its time going away. Though not knowing when it will let up or go away it is so severe at times I don't know what to do or how to deal with it. I have been a nurse for twenty years and I am right handed and fell at work it took them so long to decide what it was and have put me through so much hell I don't have much faith in the medicsl system. I do have a good pm dr and he tries to keep onto of my pain. know that the burning is in my other arm I am starting to worry. I don't like to complain but W/C puts you through so much red tape. if anyone else has this diagnosis I would like to talk to them at least so I don't feel so alone. thanks for reading. springdaisy

[springdaisy]

Yes lyrica does work alot I am on 225mg twice daily. I started on 75mg bid and worked my way up.

[springdaisy]

I just stoped going to an extensive pt program they were pushing me so hard my hand and arm was feeling worse than when I started the program. the pt not registered was having me put on ice and said it would make it feel better. thanks

[oak1day]

Hi Fireball!

I did come back and read this. It IS very interesting info. Is this rsd/crps also an overlapping syndrome? I ask because the diagnosis I received of dermatomyositis was made through a biopsy. It was called into question a couple years later by neurologists, so I went back and three dermatologists reconfirmed the diagnosis.

At the beginning of the disease, I had enough classic symptoms that a rheumatologist/allergist/immunologist got me biopsied. But as time has gone on, it has not followed a classic course. Or more precisely, so little is really known about dermatomyositis, that if you don't manifest in a certain way, they really don't know how to treat you.

But something that is know and commonly accepted, is that too often, people with "a myositis" also have other connective tissue diseases or diseases with an autoimmune component. This is called "overlap syndrome". I need to tell you that I am no longer on any MEDICINE, as far as prednisone, methotrexate, plaquenil, and the other stuff they give you for DM. So at least I know that whatever I am dealing with is what my body is actually doing and not the result of a side effect.

Well, that is my question. This IS new information and I do appreciate it.

Sincerely.

[springdaisy]

ask your dr about rsd those are the same symptoms I have. in both arms and hands it is very hard to make someone understand the burning pain and some drs don't know much about rsd all my results came back normal even a bone scan. I was still diagnosed with rsd. I am on Lyrica which really helps and cymbolta for depression whhich helps some I also take mso4 for pain. I still have alot of pain and the burning is horrible to me it is like someone is inside my arms with a torch and running it uup and down my arms sometimes it last for days other times a few hours. the dr recomended a stellate gangloin block which was to help with pain and mobility but when they attempted the block twice in one day. They stuck two three and a half inch needles in the right side of my neck and I became paralyized on the left side of my body for three and a half hours was shiped to Hershey Medical Center my body came back but left side of my face I have episodes where my eye closes and won;t open I get severe slurred speech and total loss of energy they say this had nothing to do with the block because the didn't inject the medicine I never had any of these episodes before the block was attempted I think they hit a nerve and I have to live with it