Reflex Sympathetic Dystrophy or CRPS (daily basis, hair, doctors, heart)

[Global Friend]

Two years ago I woke up in severe pain, couldn't lift my arm, open my hand, turn or move my head because of pain in my neck. Went to emergency, my MD and a neurologist. I had every test they could think of but they couldn't see anything, so just called it "possible" RSD. This went on for weeks and four doctors that saw me all said RSD but seemed to have a question mark at the end. I couldn't function and was in extreme pain. Went back to emergency another day because I couldn't take the pain and they gave me morphine which did nothing. Finially my Dr. said lets try physical therapy and I was lucky because I found an excellent PT. IT took weeks before I could open my hand or lift my arm because of pain and weakness but she did get me going in the right direction. She said that it's not RSD but postural from sitting at a desk and working on a computer. Hard to believe but it made sense. I made some changes to how I sat, where my computer was and had therapy for months. When my insurance stopped paying she said I was about at the level of a 70 yr old as far as movement (I was 41) but getting better. Months later and after trying to be conscious of how I stand, walk and sit....finially things started to get better. Now two years later I'm not 100% and it acts up when I work a lot but I'm able to function and without pain medication.

I told that story because when this happened, I got the feeling all four doctors didn't know what they were talking about when they said RSD. Maybe there's a chance your wife has some postural issues from a job she had or something she did repeatedly for a long time? Has she tried PT? I hope she finds something that helps. It's not fun to be in pain like that and I'm sure it's hard for you to see her suffer. Good luck to you.

[jmking]

Originally Posted by Rapture

Two years ago I woke up in severe pain, couldn't lift my arm, open my hand, turn or move my head because of pain in my neck. Went to emergency, my MD and a neurologist. I had every test they could think of but they couldn't see anything, so just called it "possible" RSD. This went on for weeks and four doctors that saw me all said RSD but seemed to have a question mark at the end. I couldn't function and was in extreme pain. Went back to emergency another day because I couldn't take the pain and they gave me morphine which did nothing. Finially my Dr. said lets try physical therapy and I was lucky because I found an excellent PT. IT took weeks before I could open my hand or lift my arm because of pain and weakness but she did get me going in the right direction. She said that it's not RSD but postural from sitting at a desk and working on a computer. Hard to believe but it made sense. I made some changes to how I sat, where my computer was and had therapy for months. When my insurance stopped paying she said I was about at the level of a 70 yr old as far as movement (I was 41) but getting better. Months later and after trying to be conscious of how I stand, walk and sit....finially things started to get better. Now two years later I'm not 100% and it acts up when I work a lot but I'm able to function and without pain medication.

I told that story because when this happened, I got the feeling all four doctors didn't know what they were talking about when they said RSD. Maybe there's a chance your wife has some postural issues from a job she had or something she did repeatedly for a long time? Has she tried PT? I hope she finds something that helps. It's not fun to be in pain like that and I'm sure it's hard for you to see her suffer. Good luck to you.

Thanks for the response Rapture. I wish it wasn't RSD but sadly it is. She broke her wrist in 2002 and the pain spread through out her body over the years. I used to help her with her physical therapy only to see her get worse. Early on it was a guessing game also with the doctors but overtime with added symptoms and several dull doctors later there is no doubt she has it at level 3. There are only four stages. She's a little popular at George Washington Hospital in DC, a teaching hospital, because she is rare because of the multi-limb-mirrored RSD that she has.

[old_cold]

Thanks for the update although it's a disappointing one.

[jmking]

Originally Posted by old_cold

Thanks for the update although it's a disappointing one.

old_cold, how long has your daughter suffered with RSD?

[jmking]

May I add that if the treatments do not workout in Washington, our next stop will be The International Research Foundation for RSD/CRPS. Here is a video of the center, scroll down and it will take you to the home page.
<Foundation_Tour>

[old_cold]

Originally Posted by jmking

old_cold, how long has your daughter suffered with RSD?

She has bone ends that are disintegrating due to RA and had surgery to realign/reattach a toe about 2 years ago.
RSD was diagnosed when, instead of getting better, the pain and burning of RSD made things appear worse.
It now most severly affects both feet and her hands.
As you can imagine, she now refuses a planned knee replacement and all other joint repairs after being cautioned that this may be a result for any other location.
The 'best' option she's been offered is disabling the nerve.
Do understand, she has other complicating disorders that haven't allowed conventional treatments and has been on time-release plus breakthrough does of morphine for many years now.
Even that seldom makes much of a dent on the burning pain of the RSD.

[jmking]

Originally Posted by old_cold

She has bone ends that are disintegrating due to RA and had surgery to realign/reattach a toe about 2 years ago.
RSD was diagnosed when, instead of getting better, the pain and burning of RSD made things appear worse.
It now most severly affects both feet and her hands.
As you can imagine, she now refuses a planned knee replacement and all other joint repairs after being cautioned that this may be a result for any other location.
The 'best' option she's been offered is disabling the nerve.
Do understand, she has other complicating disorders that haven't allowed conventional treatments and has been on time-release plus breakthrough does of morphine for many years now.
Even that seldom makes much of a dent on the burning pain of the RSD.

Very sorry to here that she's suffering so much. I'm no doctor but I will say that evasive procedures such as cutting off nerves is a very bad idea. I've read and been told that in most cases this can cause other severe issues such as spreading of the disease and no relief in pain. At the least she could try a nerve block (not remove) that in most cases can give temporary relief. She should look at Ketamine treatments too. RSD effects people differently so lidocaine and ketamine can work for her or maybe not. I once talked to a lady who had RSD for 30 years and Ketamine allowed her to stand and walk without much pain after several years in a wheelchair. She should look into spinal stimulators and morphine pumps but they are evasive and may or may not work. My wife declined those and every other evasive treatment except for the infusions because their outlook is so promising. Physical therapy is something your daughter should look into. She can not let her body stay still and do nothing, she needs to move around, very important! Water at body temperature may help her also. One thing I've learned through the years there is a link between the symptom "Phantom Pain" and RSD. Phantom pain is a real condition where people who have had limbs removed still feel pain in their missing limb and still feel the presence of their missing limb. This is one of many reasons not to have the nerves cut out of a person suffering from RSD--this is a bad procedure for any doctor to recommend to an RSD patient and it tells me this doctor does not know what they are talking about. As far as pain meds are concerned, different opiates effect different people differently. My wife takes several meds including muscles relaxants, drugs that relax the nervous system. She did take morphine and percocet but it did not help much. What she found that helps her the most are vicodin and timed released oxicodine.

Do an extensive search on the web you'll see the same things I've stated. Check out the website and its content I provided in my earlier post. It is the first RSD center in the world and just opened last February. Also, check this site my wife and I are members of. And strive to find a doctor who really and truly understands RSD.
RSDSA :: welcome

[old_cold]

Ah yes.....Vicodin is Acetaminophen based.
She also has ITP which precludes the use of aspirin,acetaminophen and such.

That's one of the reasons she was allowed to be on Percocet, then morphine, for years.

She switched to Morphine since she stayed working as long as she could.....the morphine didn't screw up her mental processes as much as the Percocet did.

Unfortunately, these pain control meds did nothing to help with swelling and associated joint deterioration.

And yes...for those familiar with RA and the really wonderful injection meds, Enbrel, Humira, Remicade as well as Methotrexate....severe reactions to them all.
I admit she has not looked into any of the newer ones. You get discouraged living with the medical community for years only to have one disappointment after another.
This has been going on for...oh.....18 years now?

Believe me, she pushes herself and stays as active as possible on days when moving is at all possible....does more than I would, I think
Steroids will probably be the reluctant choice if she gets too crippled. When she has to take them for one of the other 1000 associated things there is a noticable improvement with everything.
Right now,she lives with and through it and hates the idea of the horrors that long term steroids cause.
Pot was suggested and it helps but she has a teenage daughter and thinks it will send the wrong message so won't use it .....it's also rather expensive since it's not on the 'approved' list
I bet the daughter would be totally comfortable with the idea and might be more inclined to sneak it.

[dantesnana]

There is a new book about a successful, non-invasive treatment for RSD. This treatment has been around since the 1990’s. If you want to read the first part of the book free, go to Google Book Search and key in PAIN BANISHMENT, NOT PAIN MANAGEMENT.
If you want to buy the book, you will find it on Amazon. This treatment worked for me and has worked for thousands of other people. It works when nothing else has. To see videos of patients telling their stories, go to the doctor’s website, paindefeat.com. Click on the Video Testimonials and select the ones that interest you. You will be taken to YouTube. This treatment works on a variety of related conditions, of which RSD is the most common.


This doctor is definitely worth checking out.


My best wishes to you.

dantesnana

[lorriem]

I broke my wrist also but it was in 1994. After the cast came off the burning pain and swelling begain.I was diag with RSD but doctors tend to shy away from drugs. I took vicodin for two years along with PT then he switched me to tylonal 3 because he didn't want me to take strong pain meds which i did need but i wasn't the doctor. He then switched me to neuontron and elival for the pain.Those two drugs I am still taking but even though the swelling has gone down the pain has not and they never could starighten my fingers on my hand. I have no idea what else to do and it has been so many years that I have lived with RSD. have been to many doctors and some don't even think RSD exsits but is a catch all diag for what they have no idea what your problem is.