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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hello! all
I'm told I may have RSD. It's been about two months.
First I had bad spasm, needling pain, and aching pain on my left hand and two weeks later on my right hand.
And another week later , I began feeling needling pain and aching pain (no spasm though) on my feet too.
Now I feel pain on my feet when pain is bad on my hands. if my hands are feeling better, I'm symptom free on my feet.
Dr. asked me to get a ganglian block for my left hand. And I'm still not sure if i want the blcok and I'm not sure if the block for only my left hand is right thing when I feel the symptoms on my left hand and feet too.
My emg is normal, and I've done MRI which I don't have result yet.
Topamax and zenaflex made my symptoms worst, now I'm on gabapentina and elavil, but they don't seem to do much to relieve the aching pain.
I feel that maybe I should try combinations of other pills before getting a block, and I am not sure if that is a right thing when I don't exhibit typical symptoms of RSD.
I can use anyone's comment, it is going to help me on deciding on what I will do next.
thank you

below is more detailed story of mine.

It's been about 2 months since I had strange symptoms.
I injured flexor tendon on left thumb, and about two weeks later I had very painful spasm right underneath of trigger point. First, I had spasm and felt the whole hand and arm became cold. The first one seemed to disapear after 6 hours or so. and next day I had second spasm that lasted longer and went to e.r. where I got a muscle relaxtant. Then I began to have a burning pain.
I talked to my hand surgeon and he gave me elavil. I could sleep better with the pill and felt better with the burning pain. Also he asked me to go to the pain clinic. Immediatly I began to get an appointment and earlist I could get was a month later. Within that month, two weeks after the 1st spasm on my left hand, I began having spasm on my right hand. And another week later when I had bad needling pain on my hands, I began having needling pain on my feet too. Basically my symptoms include milder spasms and cramps and needling pain and aching pain which come and go. and while I'm in pain, I notice vasodilation. I don't feel sensitive to gentle touch, but I feel uncomfortable on touches with certain pressure (eg. tapping table with fingers). And my hands were only cold when I had first two bad spasm and they are not cold anymore.
Three weeks ago, I went in for the 1st appointment at pain clinic. There I was told that I don't have typical symptoms for RSD. Dr. gave me topamax, and zenaflex. After taking this medicine, I began to feel needing pain all over my body and aching got worst on my hands and feet. I continued taking them for three days and I stopped. I immediatly felt better after stopping these two pill. Now I'm on gapapentin and still on elavil, but I'm not symptom free.
Dr. also asked me to get a ganglian block for my left hand. but I can't still decide if i want this before trying out any pill combination.
Past couple of days, I began feeling aching pain more constantly. Originally I only had aching pain as a small patch and didn't last more than a minute and it went away. But now I'm getting them more spread and pain is worst when I streach my fingers out.
I have my second appointment tomorrow. I'm still not sure if I want the block?

thanks for reading and I would appreciate any comment.
Hello Kim
I totally understand your frustration.
Just now I came back from an appointment with a neurologist.
When I decribed the symptoms of spasms,burning, needling and aching pain on my hands and feet, he said I may have Raynaudís disease , NOT RSD. He was so sure that I don't RSD because I can't have the symptoms on both my hands and feet in two months. Well, the meeting with the Dr. was last than 10 minutes and I'm now being told to get a MRI of brain and some special blood test to make sure I don't have any other disease.

At the pain clinic, they say I have RSD. and now a neurologist says I have something called Raynaudís disease.

I'm totally confused!!!
Hi June,
Although some of your symptoms sound like RSD, the fact that it went so quickly to all of your limbs is a bit odd. RSD can spread, but yours seemed to spread unusually fast. Also, the lack of temperature fluctuation is atypical for RSD. But RSD can do very strange things!

Raynaud's can be primary or secondary. Even if it is Raynaud's, there might be an underlying cause, so don't settle for a casual answer. Although 10 minutes seems way too brief to get a complete picture of what's going on with your body, I do think the neuro was wise in ordering an MRI and blood work. There are a lot of diseases that mimic one another.

If you come back full circle to the RSD, this has been my experience with blocks - I had three ganglion blocks and each one built upon the last until I experienced marked improvement. Like Laura said, they are good as a diagnostic tool. Personally, I would get blocks over being on meds. The medications necessary to help with the pain are hard on the body and mess with your head. If you get a block, don't be afraid to ask for sedation.

I really hope you find out what's causing your symptoms. I know how difficult it is being in limbo with a bunch of problems going on.

Best wishes,
Julie
Thank you~ Kim, Laura and Julie~ for replying

I just came back from the pain clinic.
Dr. said it can not be Raynaud disease with kinds of symptoms I have.

Dr. said that the ganglion block is to see if the pain is sympathetically mediated or not and if it's going to relieve the pain, it's going to help with the Physical therapy.
I shared my concern that how I could tell if the relief is from the block since my pain comes and go and I'm not sure what good it is to block only one arm when I experience random pain on both my hands and feet,she said it's just up to me to decide. Then she gave me a schedule to increase gabapentin gradually upto 3000mg per day(I've been taking only 300mg per day and felt it wasn't doing anything). she also asked to increase elavil to 50mg per day and gave me buclofen for spasms.

Currently I'm using HMO and I had 1st evaulation with p.t. two weeks ago and I'm sure when my next appointment going to be. It seems like people with RSD who need timely response to treat their pain can grow their pain over time waiting for referrals.

I guess I will try out the pill for couple weeks until my appointment at other pain clinic since my overall pain is not bad as how others are describing. And after reading the replies, I guess I can say I'm less afraid of getting an injection. The block sounds better than juggliing with bunch of pills, but now I'm stuck with the pills and will see how I react to them.

thank you again for reading
[QUOTE=june789]Hello! all
I'm told I may have RSD. It's been about two months.
First I had bad spasm, needling pain, and aching pain on my left hand and two weeks later on my right hand.
And another week later , I began feeling needling pain and aching pain (no spasm though) on my feet too.
Now I feel pain on my feet when pain is bad on my hands. if my hands are feeling better, I'm symptom free on my feet.
Dr. asked me to get a ganglian block for my left hand. And I'm still not sure if i want the blcok and I'm not sure if the block for only my left hand is right thing when I feel the symptoms on my left hand and feet too.
My emg is normal, and I've done MRI which I don't have result yet.
Topamax and zenaflex made my symptoms worst, now I'm on gabapentina and elavil, but they don't seem to do much to relieve the aching pain.
I feel that maybe I should try combinations of other pills before getting a block, and I am not sure if that is a right thing when I don't exhibit typical symptoms of RSD.
I can use anyone's comment, it is going to help me on deciding on what I will do next.
thank you

below is more detailed story of mine.

It's been about 2 months since I had strange symptoms.
I injured flexor tendon on left thumb, and about two weeks later I had very painful spasm right underneath of trigger point. First, I had spasm and felt the whole hand and arm became cold. The first one seemed to disapear after 6 hours or so. and next day I had second spasm that lasted longer and went to e.r. where I got a muscle relaxtant. Then I began to have a burning pain.
I talked to my hand surgeon and he gave me elavil. I could sleep better with the pill and felt better with the burning pain. Also he asked me to go to the pain clinic. Immediatly I began to get an appointment and earlist I could get was a month later. Within that month, two weeks after the 1st spasm on my left hand, I began having spasm on my right hand. And another week later when I had bad needling pain on my hands, I began having needling pain on my feet too. Basically my symptoms include milder spasms and cramps and needling pain and aching pain which come and go. and while I'm in pain, I notice vasodilation. I don't feel sensitive to gentle touch, but I feel uncomfortable on touches with certain pressure (eg. tapping table with fingers). And my hands were only cold when I had first two bad spasm and they are not cold anymore.
Three weeks ago, I went in for the 1st appointment at pain clinic. There I was told that I don't have typical symptoms for RSD. Dr. gave me topamax, and zenaflex. After taking this medicine, I began to feel needing pain all over my body and aching got worst on my hands and feet. I continued taking them for three days and I stopped. I immediatly felt better after stopping these two pill. Now I'm on gapapentin and still on elavil, but I'm not symptom free.
Dr. also asked me to get a ganglian block for my left hand. but I can't still decide if i want this before trying out any pill combination.
Past couple of days, I began feeling aching pain more constantly. Originally I only had aching pain as a small patch and didn't last more than a minute and it went away. But now I'm getting them more spread and pain is worst when I streach my fingers out.
I have my second appointment tomorrow. I'm still not sure if I want the block?

thanks for reading and I would appreciate any comment.[/QUOTE]
Who is the doctor who is advising you? Is it a neurologist? If they are , I'm sure they wouldn't mind if you got a second opinion.
Also , I take neurontin 300 mg, 3 times a day.
Now for the scary part.. I've had RSD for 2 1/2 years. It quickly spread all over from my right foot to my right leg to my left foot to my left leg and then to my hands , eyes and mouth...I was so bad that my neurologist recommented I try on "off label " drug called Thalidomide...It was used in Canada by women when they were pregnant and their children were born deformed.. it's heavy duty stuff. Well I knew the consequences and many people told me not to be a guinea pig.. but I went ahead and took it. and I'm happy to say I'm back to work and out of my wheelchair and I only use my cane when I go for long trips. I have spasming in my hands and eyes occaisonally but NOTHING like it was...
:)





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