[Kakimbo]

Hi everyone. My name is Kim and I was diagnosed in January of this year with RSD. I am new at this, so please bare with me and help me navigate as I become familiar with this site.

I would very much like to chat with you and hear your stories. I have been unable to work since October, 2008 because of this illness, and I feel like I am losing my mind! I was injured at work; hit in the left hip/buttock by a steel cart while I was squatting down. Torn hamstring and Piriformis Syndrome. My symptoms didn't improve, and finally in January of this year I was diagnosed. Since then, I have seen MANY doctors, had P.T., Chiropractic and accupuncture. I have had several EMG's (awful!), and a series of Sympathetic Nerve Blocks. I have atrophy in my leg of one inch, and can hardly walk, much less function! My Pain Management doc is very unsympathetic to my needs, as I react poorly to Narcotics and am physically sick almost every day. I am at my wits end -- sick from the meds, or in agony from the pain. I just want to be listened to, and have someone understand my situation.

If anyone is willing to give me advise, please do! Thank you all for listening!

[lostmary]

Kim,
welcome to our group. I'm sorry you have this monster we call rsd, but I'm glad you found us and hopefully lots of new friends. We are here for you on your good days, but even more so on you bad days. We don't judge. what you feel is real and don't let anyone tell you it isn't. I've had rsd for about 4 yrs or so. It started in myu left foot and it now includes both feet, legs, left butt, left side of back up to my left shoulder. I've tried meds, I've had two spinal cord stimulators, and I was just approved today to have the pain pump trial. We all have different experiences and thoughts with rsd. Again, welcome, and please feel comfortable here.

Gentle hugs
Mary

[AintSoBad]

Kim,
I'm glad you found us.
You'd be hard pressed to find anyone here, who's been diagnosed without going to many doctors, and going through much time. It took me 7 years for a diagnoses, I've had rsd, tos (thoracic outlet syndrome), since '83. In '98 another auto accident, I got a traumatic brain injury, herniated neck and low back discs, and assorted other maladies...
(Funny thing is, I'm a healthy old horse, without these imposed injuries). I have sleep apnea (a real bear, w/pain, too).
I use a Cpap machine for that..
Take methadone for pain. ( my lifesaver ).
Cymbalta / pain, depression.
diazepam, for nerves, spasms.
zanaflex, muscle relaxer, sleep.
imetrex / migraine
aricept / to help my brain "think". It's an altzheimer's med.

For you, if your PM doctor isn't very empathetic, find someone who is.. There's a limit to what they can do, so, the least they can do is understand.
What is your line up of doctors?
I've been seeing my neurologist for almost 20 years.
He runs my entire show, but is wanting me to find a new "family doctor" he can communicate with, as he had a mild heart attack last year.
It's so difficult to find a doctor who isn't immediately on alert for pill shoppers.
So, that's his concern. I couldn't imagine if something happened to him.

Tell us what you can about your treatment currently, your meds and why, and your doctors. Then, if you have specific questions, we can go from there.
You'll find this place is full of kind folks who only want to help.
I've gotten so much support and friendship here.

Welcome!

Pete
asb

[Imahotep]

Good luck. You do have one big advantage and that is that you have an early diagnosis so you have a better chance of kicking it.

For me this disease has been about learning my triggers. It seems to manifest in many people a little differently like there could be several or many diseases here rather than a single syndrome. I do share at least one thing with you and that is the pain killers are mostly ineffective. Even a large dose of morphine just makes me not care about the pain rather than truly easing it. Methadone has no analgesic effect until the day after I take it! There are a couple I use and find important. One is tramadol apap in fairly large dose. This doesn't end the pain but I can actually feel it kick in so I get a feeling of control over the pain. It seems to reduce it 20 to 40% depending. Tylenol 3 will ease all the associated pain and greatly expand the window to get to sleep. Most of us have insomnia and this one does help me sometimes when nothing else does. It also reduces my dependence on the tramadol.

Try to look on the bright side. This can be one of the hardest things of all but it what keeps me going when I'm going.

[Kakimbo]

Thanks to all of you who replied to my post. You have made me feel truly welcome, and I feel like I have finally found a home!

Kim

[Hockey]

Welcome TO NT!

I'm sorry for your suffering, but I know that you have found a place where you'll receive wise advice and understanding emotional support.

The link to the RSD forum is
http://neurotalk.psychcentral.com/forum21.html

[finz]

Hi Kim !

Welcome to NT !

On the bright side........most of us in our search for a doc with a clue have been told it's all in our head, etc and also have had it been implied or said outright that we are drug seekers...at least they can't throw that one at you !

What other meds have you tried ? Are you able to tolerate Neurontin or Cymbalta ?

Have you tried a variety of narcotics, or just one ?

[Jennelle]

welcome to the site!!! The people here have helped me tons! I too was injured at work (left arm) spread to all my limbs eventually.... but I am back to work now and hopeful. I heard the pain pumps can work great...and they don't have the same side effects as taking the meds by mouth.
Jennelle

[finz]

Have you seen this new thread ?

http://neurotalk.psychcentral.com/thread106822.html

[Kakimbo]

Originally Posted by finz

Hi Kim !

Welcome to NT !

On the bright side........most of us in our search for a doc with a clue have been told it's all in our head, etc and also have had it been implied or said outright that we are drug seekers...at least they can't throw that one at you !

What other meds have you tried ? Are you able to tolerate Neurontin or Cymbalta ?

Have you tried a variety of narcotics, or just one ?

Hi finz!

I was on 2400mg of Neurontin, but found that it severly impared my memory (renting the same DVD, telling the same stories, etc.) so I slowly weaned myself off. I currently take Percocet, 30mg Baclofen, two hypertension meds and Lidoderm patches. I also have a TENS unit, which helps greatly. I am trying to get a new pain doc, my current one just doesn't seem interested in the fact that my meds make me sick on a daily basis (I won't be graphic here). But since it's been a year from the w/c injury, nobody wants to get involved until my permancy hearing in December. My current pain doc just doesn't listen to me (about the nausea, etc) and is not willing to change my meds to something I can better tolerate. He makes me feel like a junkie. I wouldn't wish this on my worst enemy! I just want my life back! Thanks for your interest and your reply!