Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-18-2010, 10:59 PM #1
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Default RSD in my head, neck, shoulder and back

Hi All,
I am wondering whether or not my RSD has spread to my neck, shoulder, back and head. I had a car accident last June and suffered neck sprain. I had physical therapy for months with some relief. However, i alway had the tight shoulder and back with burning pain. Last November, i had a biopsy in my neck. By end of december, i had constant burning pain my the back of my head, spread to the side of my head. Now the whole back of my head hurt. I am wonder whether or not i have RSD spread to my neck, shoulder, back and head due to constant burning pain that i have.
My question is how to diagnose this? Is it the SGB?
Any feedback is appreciated.
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Old 05-18-2010, 11:11 PM #2
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Do your arms, hands & fingers have any symptoms?

If it was like a whiplash type injury/ accident it might have triggered some version of thoracic outlet syndrome...

Did they do x rays or MRI of the neck or was it a very minor accident?

What was the biopsy for? - something related to these symptoms or unrelated?
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Old 05-19-2010, 12:02 AM #3
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I have RSD symptoms in my hands and arms. No new symptoms in my hands and arms after the auto accident. A young man ran the red travel light and hit me on the side in the intersection. It is a moderate impact. I had MRI done and the result is more or less the same as the previous one done prior the accident. EMG shows no nerve damage. The biopsy in the neck due to cysts. Dr. put five needle sticks in my neck and i am wondering whether it set off RSD in my head and the auto accident set off RSD in my neck, shoulder and back. I had the constant burning pain, muscle tightness all the time. Now my head has the worse pain and i can't really sleep. As i lay down, my head hurt more due to pressure from laying down. I can hardly think and function at work. Besides PT, i have tried chiropractic therapy with massage but w/o help. i tried accupunture which really helped my neck, shoulder and back but not the headache. Still the burning and tightness in my neck, shoulder and back have always returned. Now trying chinese herbal medicine to see whether or not it will reduce my pain.
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Old 05-19-2010, 12:28 AM #4
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Can they work on the spasms and check for trigger points in the muscles? Or does the touch and pressure bother too much with the RSD?

If you have trigger points in the muscles they can't fully stop spasming until the TrPs are resolved.

TOS gives us severe spasms too, many get horrible headaches. It just sounded so familiar I had to mention it.

I remember the time I had really bad spasms -neck/chest & upper body, ugghhh, misery.
Felt like I could not turn my head, felt like I had tight turtle neck sweater on all the time and a metal vest.
Riding in a car on a rough road , or even the stops /starts my neck was so fatigued but I could not get it to relax. i had no clue what was going on back then...

My chiro and helped me with the spasms and a really good PT guy found that my top ribs had got raised up and was kind of stuck against my collarbone.
This was increasing my hand/arm symptoms , limiting my hand use as well as stalling my recovery progress {RSI/TOS}.

Anyway this PT guy pressed downward on my top rib/shoulder area and it dropped down to the normal place - he did one side at a time so we could compare the differences, it was a good inch lower - so he did the other side and I felt so much better..
I was able to drive 40 mins home with no hand /arm pain.

The spasms had been so severe that they pulled my top ribs up and they just happened to stick there and not drop back down on their own.
Partially because I have some hyper mobility of my joints.
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Old 05-19-2010, 07:27 AM #5
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Default Hi,

When Jo explained what she went through it brought back memories of what I went through. I was in the same shape as she was talking about. My head was too high up too from my neck injury. I spent 4 years in PT to get everything better and back in place. My ribs were too high too. My left side was the worst with the TOS but after I went to a quack she worked on me and made my right side worse.

I did get blocks too and they did help some with getting the pain level down. I also got triggerpoint injections where the spasms were and that helped a lot. I have Methadone and lidocaine patches around for pain now. I still get shots if something flares up too.

I have RSD, TOS, and Fibro so we dealt with all of it with the PT. I was thinking you might have TOS from the accident also.

It is possible that you have RSD and the TOS and you could also have Fibro going on. It goes with the RSD quite often. I would see a good Rheumotologist for this and also find a good Anesteologist for blocks. Some people don't do good with blocks but I think they are worth the try. I don't think either one or two does any good. I think it taks a series of them and they often want to do a series. They wanted to do 15 on me but I got sick on the 3rd one and quit. I honestly think I had a panic attack when I had the 3rd one and I didn't go back for more but the 3 did help.

What I have noticed on here is that one thing only doesn't help calm the RSD it takes a number of treatments to help get it under control. I listen to what everyone is saying and one treatment isn't the answer for most of us.

Ada
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Old 05-19-2010, 09:22 AM #6
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Quote:
Originally Posted by dreambeliever128 View Post
When Jo explained what she went through it brought back memories of what I went through. I was in the same shape as she was talking about. My head was too high up too from my neck injury. I spent 4 years in PT to get everything better and back in place. My ribs were too high too. My left side was the worst with the TOS but after I went to a quack she worked on me and made my right side worse.

I did get blocks too and they did help some with getting the pain level down. I also got triggerpoint injections where the spasms were and that helped a lot. I have Methadone and lidocaine patches around for pain now. I still get shots if something flares up too.

I have RSD, TOS, and Fibro so we dealt with all of it with the PT. I was thinking you might have TOS from the accident also.

It is possible that you have RSD and the TOS and you could also have Fibro going on. It goes with the RSD quite often. I would see a good Rheumotologist for this and also find a good Anesteologist for blocks. Some people don't do good with blocks but I think they are worth the try. I don't think either one or two does any good. I think it taks a series of them and they often want to do a series. They wanted to do 15 on me but I got sick on the 3rd one and quit. I honestly think I had a panic attack when I had the 3rd one and I didn't go back for more but the 3 did help.

What I have noticed on here is that one thing only doesn't help calm the RSD it takes a number of treatments to help get it under control. I listen to what everyone is saying and one treatment isn't the answer for most of us.

Ada
I had TOS ~ 20 yrs ago due to me being rearended in a nasty car accident... I had to have both of my first ribs removed {ouch} bilaterially due to impingement of the blood flow in my chest... How about discoloration from grey/black when arms are down to bleach white when arms raised over your head..and pain in your upper arms and hands??? Bulls eye for TOS.. as for RSD..the burning, progressive pain is hallmark...let us know we care a ton...


Hugz, Kathy
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Old 05-21-2010, 12:08 AM #7
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Quote:
Originally Posted by numb View Post
Hi All,
I am wondering whether or not my RSD has spread to my neck, shoulder, back and head. I had a car accident last June and suffered neck sprain. I had physical therapy for months with some relief. However, i alway had the tight shoulder and back with burning pain. Last November, i had a biopsy in my neck. By end of december, i had constant burning pain my the back of my head, spread to the side of my head. Now the whole back of my head hurt. I am wonder whether or not i have RSD spread to my neck, shoulder, back and head due to constant burning pain that i have.
My question is how to diagnose this? Is it the SGB?
Any feedback is appreciated.
Hi numb,
I am so sorry you are going thru this pain and suffering. You'll find much helpful and comforting information here along with tons of educated information. Most of us that have RSD have had spread. Mine started 15 years ago and has been full body or generalized last 6 years. The head pain is very difficult to deal with, but typical of upper body RSD. I also have Trigeminal Nerve Disorder since RSD. There is a separate place on the forum for that. Like was mentioned the burning pain is sure sign. Please get a Dr. with experience. I did a lot of physical therapy, warm water pool therapy, massage therapy, I'm talking maybe 150 each. But I am mobile in all my limbs with the exception of left had-frozen like a claw-misdiagnosed and got into therapy too late. Water needs to be 86 degrees according to RSDSA.
A lot of information on that site as well as rsdrx.com puzzles list.
Support groups are helpful. RSDSA has a place to put your zip code in and they will give you closest group with phone number and name.
Please get a Dr. who has lots of experience and do tons of research if any procedure is encouraged. We are all different. Some get worse and spread and some don't. Any surgery or even needle,blood draw has risks.
Take care, one of your new friends.loretta Hope you have a good attorney with knowledge as there is no cure for RSD and the expense adds up. I personally would think about leaving that open for the insurance company. Many of us can no longer work as the disorder progresses and spreads. Not trying to be negative, but be smart. big hugs
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Old 05-22-2010, 05:00 PM #8
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On the TOS forum THURSDAY and I are having great success with accupuncture. I started out with accupressure which totally releases spasms, knots, toxins, and headaches. It has helped my FM and RSD so much. It is not a cure however it helps release. Now using eastern medicine along with my master professional western medicine team.

Here is some info THURSDAY posted i'd like to share with you!

Although I'm in Northern California, there are community acupuncture clinics across the country. Please see this site to find a clinic near you http://www.communityacupuncturenetwork.org/clinics.

This is a great video that shows the community acupuncture experience. It explains so much!!
http://www.youtube.com/watch?v=1-j0Mrelfno

I welcome any questions you have!
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Old 05-22-2010, 07:24 PM #9
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Your symptoms sound very similar to mine during the past few years. I started ketamine infusions in April, and my RSD is about 90% in remission.

I injured my shoulder, had a few shoulder surgeries, and was diagnosed with RSD. Over time the RSD spread from my shoulder into my neck and the back of my head (the "occipital" region), especially after a series of trigger point injections in the area. My head became by far the most painful of all areas, and I couldn't lie down on it either. It was a nightmare!! I was never diagnosed with TOS, but some of my symptoms in my hands and arms were similiar.

I bought a very firm foam memory pillow that helped quite a bit with my sleep. I still can only sleep on my side. And in addition to the ketamine, I had an occipital block on the right side that helped. But there remains a spot in the back of my head that is very sore and tender that perhaps will always be like that.

Have you tried using Voltaren gel? I smear it on my head on night and it does help. A heating pad around my neck feels good, too.

Good luck to you. XOXOX Sandy


Quote:
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I have RSD symptoms in my hands and arms. No new symptoms in my hands and arms after the auto accident. A young man ran the red travel light and hit me on the side in the intersection. It is a moderate impact. I had MRI done and the result is more or less the same as the previous one done prior the accident. EMG shows no nerve damage. The biopsy in the neck due to cysts. Dr. put five needle sticks in my neck and i am wondering whether it set off RSD in my head and the auto accident set off RSD in my neck, shoulder and back. I had the constant burning pain, muscle tightness all the time. Now my head has the worse pain and i can't really sleep. As i lay down, my head hurt more due to pressure from laying down. I can hardly think and function at work. Besides PT, i have tried chiropractic therapy with massage but w/o help. i tried accupunture which really helped my neck, shoulder and back but not the headache. Still the burning and tightness in my neck, shoulder and back have always returned. Now trying chinese herbal medicine to see whether or not it will reduce my pain.
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