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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Mss,

Wow. Your average day just wore me out !!

Maybe you overlooked it cuz it was waaay back and, of course, this is an RSD board. I don't have RSD... at least I don't think I do. I've only had this pain for about 3 and a half years. My pain is severe. More severe than what can be explained by diagnostics. My doctor thinks its something similar to RSD in that he thinks with all my untreated pain levels over the past 3 years has cause my central nervous system to get "out of whack". He compared it to being in the "ON" position and not knowing how to turn off as my brain has been trained for pained (lol I'm a poet and don't even know it).

I think another diagnosis could be CRPD (Complex Regional Pain Disorder). Where a region on your body becomes very sensitive to pain because of bombardment of painful conditions.

My pain started in my neck about 1995... I really think that is where it began. In 2003 I started exercising and using weights. Then my shoulder began to pinch. I was misdiagnosed and mistreated with PT when I actually did have a bone spur and tear which was causing that pain. By the time I had that operation, other pain developed. My scapula started to wing.

Frankly, I think due to dyskinsia (using wrong muscles to compensate), my scapula started to wing and so on and so forth. After 3 years of continued pain, and one surgery under my belt already, I went to a University Hospital for another opinion. Immediately, that doctor told me after 4 EMGs my doctors still hadn't tested all the nerves involved with my pain.

He did another EMG and also gave me a cortisone injection in my brachial plexus. He was first doctor to do that even though I complained REPEATEDLY the worst of my pain was in that area. At this point, all I was using for pain was vicodin, and I only had enough in each script to use 3 or 4 tablets a day. So, you can understand how after 3 years of pain, I wasn't being treated properly for it....

Anyhow, that shot relieved 50% of my pain. I almost dropped to my knees and kissed his feet lol. Of course, it was the lidocaine working on my brachial plexus nerves. It actually helped the pain in my neck and scapula. Nerves are amazing in how they connect everywhere. It was an hour and half drive to OSU and I thought I was gonna die by the time I got there !! This shot allowed me to ride home in relative comfort. Amazzzzing. I thought I was healed ..... not really, but it felt like it.

My EMG he ordered showed brachial plexus entrapment and he then told me he was doing a "new" surgury to release BP entrapment and that the surgery would mimic that shot. I was also having a lot of tingling in my little finger. I elected for the surgery.

Now, this is where I wonder if I took the right path.... About the same time as I saw him I began with Pain Management (took docs 3 years to refer me). I was prescribed Oxycontin. The pain relief was amazing with that also.

My surgery wasn't scheduled for 6 weeks. When I was going for my surgery, my pain levels were being controlled quite nicely and I almost backed off. My only hope with this surgery that it would allow me to stop having to use narcotics. The surgery was VERY hard on me from a physical standpoint. The actual "work" on my shoulder was less invasive than my first where they had to reattach a tendon to my bone. This doc released my pec minor to make more room for my brachial plexus nerves and then he did some kind of nerve desection. It didnt help my pain very much, but what it did help was the tingling in my little finger which was, before that, almost constant.

So, here I am two surgeries later (6 months post-op from second), still with high levels of pain restricted to the right side of my body. Docs can't come up with a very good diagnosis to explain all my pain on right side. They haven't tried very hard in my opinion. A few MRI's which were messed up...
and that is another longass story of things going wrong. I was even injected during an arthrogram and "lost" for almost 2 hours when they were supposed to image within 15 mins of this injection....

Sorry for long post, but this is just a brief. It's a long 3 years of going down the wrong path and doctors, not having an easy diagnosis with me, chose to just "move on" and let me hang with pain. That's why I went to OSU. I exhausted almost every doctor in my area... lol

I believe RSD is much worse than my condition and it seems to have symptoms I don't have, like the swelling and reddness in an area. I don't have any of that. The injections the doc wishes to do will help in diagnosis me further. Right now all they can come up with is Thoracic Nerve Outlet Syndrom, entrapment of brachial plexus, shoulder impingement and the Central Nervous System Pain Disorder (??). I hate not have a better explanation for this pain. To look at me and see my shoulder range, no one would believe I h ave this much pain. Its a deep, stabbing, burning, twisting pain. Like a hot spear has been driven through the right side of my upper chest and comes out by my scapula in back. When its bad, its horrible. Right now its breaking through and my right arm is aching horribley and I must stop typing... it was worth the "chat".

It's hard to get to know each other in these posts. But I enjoy getting to know you guys. There is a
Oh, before I quit. Mss can't you check into having housekeeping for you covered by some kind of social service? With all you have to do, you might find some coverage for that.

Glad to hear you had a good pain day also. Those days of low pain are a joy!

hugs from your buddy,

Barb





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