Chronic CRPS & Change in Pain
 

I have to know- anyone with chronic crps that has spread and gone into a calmer state(I wouldnt call it remission). That the pain has calmed down or changed? Mine has spread out of control to all 4 extremities and face and put on Methadone- now I'm backing down from methadone and the pain is changing-my burning is down, aching/stabbing is up(I can take any pain but that burning!) Although I never slept well, now the aching wakes me up all night. I also stopped PT and am only doing water therapy. I am afraid of hoping to say that this beast is settling down. Has anyone had periods of pain backing down or changing? How long did yours last? Did it flare up again because of something you did, or just because? momof4

Well I was doing better with slow but at least progress. Then I went backwards and my other leg is worse. I feel like I am on a constant roller coaster. For the first 2 years of this I did not have the burning people talk about but this last year it developed. I do have changing symptoms but some I feel is that I do my physical activities different now so that adds more strain which in turn adds different symptoms. Does that make sense? Sometimes I get flares from nothing and then sometimes like just recently I tripped or because of weather etc. I wish I had more answers for you but I can relate. I hope you have better times ahead

From my own experience,,Its ussually the other way around,,{meaning} When I taper off pain meds,The pain ussually gets worse for a few day{depends on how high of a dose your on...This is normal,The body is adjusting to the less input of meds and the start up of making or using more endorphins,,,From what im seeing in your post is the opposite,which is REAL GOOD,,sounds like hope and relief,,,this is a very good sign ,,enjoy,,,Id love to see you and others get a remission,,That would be hope for all of us,,,

Hi Momof4, Welcome to NT! Isn't it a wonderful family of caring, compassionate, friends. I've had RSD 15 years following breast biopsy. After over a year of pt and massage therapy for frozen shoulder, I had over a year of remission. Then it went to other side like they said it might. Another year of therapy and a 2nd year of remission. Then while water skiing felt a pull in original hand. RSD used to be called hand shoulder syndrome. In my 4th year I was diagnosed by a hand ortho surgeon. more pt, tens unit. the hand is 50% paralyzed. Then it spread to other hand both feet and legs, full body and now internal pelvic area. I used to have electric shocks, jolts-full body thru the brain-very scary. I was on 3200 mg of neurotin and other meds. I gained weight on neurotin and asked to go off. My Dr. gradually reduced the med and I've been off for a year and half. I've had shocks about half dozen times. So I feel that is a calming effect. I've gone from two different antidepressents double and triple dosed to 120 mg of cymbalta My two high blood pressure meds have been reduced. My pain med of vicodin has been reduced from 6 to4 as well as anti anxiety med reduced from 6 to 4. I went off ambien cr and it wasn't working at all. Wouldn't go to sleep till 5-6 a.m.
Put me on a study of 200 people for seroquel xr which just was approved by the FDA for an antidepressant. I'm sleeping 10 hours with it. He just reduced it from 300 mg to 150 mg. I was feeling I didn't need 300.
The worst part now is the internal burning pain in the pelvic region. I live in Arizona and am already worrying about the summer. I also have fibromyalgia and trigeminal nerve disorder along with ptsd.
Have you read Dr. Hooshmand's website: rsdrx.com He practiced for 40 years in Florida. His website is still up and very informative. His theory is against opiods and using other meds for pain. The part called puzzles list has 146 questions and his answers.
Take care, and let us know how you are doing. One of your new friends, loretta with big soft hugs:grouphug::grouphug:

Mine hasnt spread, but it has went into a kind of remission. there is still pain but it is managable and i go to school and work still. i did Physical Therapy for 6 monthes and now i can walk without crutches. im very sorry yours has spread. Have you ever tried PT?

Lidocaine infusions (I've had six) got rid of the terrible burn for me. I still get the aching, stabbing. The headaches in the evening haven't abated all that much, and sometimes I don't know why I get them. And I can't use my arms or my head will hurt. I used Skelaxin and Ambien CR for sleep and it helps, even though I do wake often.

I am glad that there has been some improvement for you.

Sandy

SO happy to read Mommaf4..that you are feeling some less pain or difference to the good of your RSD. I have never reached that point but when one of our family members are feeling better..then we all feel better..for you/them as we are a close caring group..we are all in this together...contiue to do well on this upswing!!

Hugz, Kathy:grouphug:

Hi Snowboarder13, yes I have done PT/OT for 2years. Now do hot water therapy with a PT which has helped my walking. thanks for responding.
momof4

update: Well the beast didnt settle for long. I have unrelenting burning and aching in all 4 limbs. RSD has finally spread up to my right shoulder. My walking is doing torrible. I have started seeing pysch again because i am feeling so sad. I worry how i will make it down/up the steep hill to my kids sports events. My husband tells me he will piggyback me if he has too. He even thinks we should get a wheel chair incase i want to go somewhere on a bad day. I wont even be able to push myself. I just cant believe how things have changed. I use to work out 3Xweek and walk/run every other day. It is really overwhelming. momof4

Hello momf4..~RNcrps2

I am so so sorry for your relentless pain...and it level again...I hope I can help you as I can relate to the sports event things as I "cane" it in and out to my kids events also...it is just a terrible affliction both physically to our dignity..but I must say our vanity has to go.. I understand how active you were before RSD..it hurts to let that go..I was a tennis instructor for many many years...I was a fast walker when for my 45 yrs prior to RSD..It is so sad and I hope altho I can't take it away for you that i can help to take your sadness on my shoulders cuz I am there for you as well as our friends here!! Something good has to counter balance our disappointment. I think that it is us finding our friends here if it were not for our illness..there is a positive!!!

Have a restful night, my friend...Kathy:grouphug: