[dealingwithtos]

Hi Everyone,

I'm relatively new to RSD, but have had it undiagnosed for about 3 years until about 6 months ago. I had rib resection in August of 04 on my left side. The swelling, burning, sensitivity and muscle cramps are horrible. Well, my question is really about the spreading. I had wrote awhile ago about my eyes being affected. Well, now I have burning in my face (5-6 times a day) but is red constantly, burning and cramping in my other arm (often), hurting/burning in my hip and burning on the tops of my legs.

My husband wants me to go to my GP and get extensive blood work to make sure that I have RSD and not something else. I am more than willing to do that. Have any of you gone through this?

I'm currently on 600mg neurontin X3, Cymbalta, norflex and lidocaine patches. I tried a nerve block but was unbearably painful - but also didn't help at all.

Now, I know that I've gone a long time without a diagnosis and probably is incurable since I didn't get a diagnosis sooner. But, does another disease act like this? I just see it spreading everywhere.

I have a pain specialist that I've been going to. He diagnosed RSD. But, at this point, they only suggest physical therapy - and the DR told me to RELAX. Now, I'm in pain and the doctor has the nerve to tell me to relax!!! (pardon the pun). This was before I was taking a muscle relaxer - I just don't see anything improving. Not to mention it's expensive for the drugs!!!

I don't know, I just can't see that this is just RSD... This disease is absolutely horrible.

Can anyone help?

[Jomar]

If you aren't certain yourself and only 1 dr dx'd it - I would for sure go get a full work up to verify and to make sure it isn't something else or another condition in conjunction with TOS & RSD.

[lostmary]

I've just spoken to my pod surgeon and he said I have had rsd well over 2 years. Like you I haven't been treated for it. I just saw PM for the first time last week. He did tell me that if you have rsd for under 2 years than nerve blocks may work. if you have had it over 3 years, he told me that blocks don't work. He said if he did it, he would just be taking my money. He said anything over two years that spinal stims would be the treatment of choice. As you have had it over 3 years, that might explain why the block didn't work. I had my pod surgeon think rsd, then my new primary a couple of months ago, and now the PM said rsd. Idon't think there is a real blood test to prove it, but it does help to remove other possiblities. I wish the meds would help with my typing tho lol
Mary

[used to be]

Sorry to hear what you are going through. It is sad that it took them 3 years to diagnose you with rsd. The doctor that told you to RELAX needs to be replaced ASAP. I went to 10 before I found 1 that was knowledgeable and compassionate. I went for an entire year with no pain meds!!! So, please don't be afraid to find another doctor and get a second opinion. Normally they do extensive blood work as well as a bone scan before they diagnose rsd so, like Joan suggested, be sure to have these done. Please don't feel bad that nothing has worked yet. Many here have had the same experience.It takes time and a good doctor to find what will work for you. Wishing you the best...Jeannie

[Desi]

Originally Posted by used to be

Sorry to hear what you are going through. It is sad that it took them 3 years to diagnose you with rsd. The doctor that told you to RELAX needs to be replaced ASAP. I went to 10 before I found 1 that was knowledgeable and compassionate. I went for an entire year with no pain meds!!! So, please don't be afraid to find another doctor and get a second opinion. Normally they do extensive blood work as well as a bone scan before they diagnose rsd so, like Joan suggested, be sure to have these done. Please don't feel bad that nothing has worked yet. Many here have had the same experience.It takes time and a good doctor to find what will work for you. Wishing you the best...Jeannie

I am quoating "everything" Jeanie said here!! Jeanie, you are so right on!! My surgeon and pain doctor kept telling me the 3rd. and final block would help me. None of them worked(except maybe the 2nd. one??and only for a short while!) anyway, yesterday I went for an MRI and a bone scan and blood work. ya have to keep at these darn doctors!! I got so fed up when my P.D. said I can't give you anymore neurotin, until I kept calling his office! yesterday where my bone scan and MRI was scheduled(my surgeon who did the carpal tunnal surgery, kept saying my wrist, hand will get better) well, he kept on seeing me, giving me pain pills until my pain traveled to my shoulder.. he then said; I think you have RSD, matter of fact I BELIEVE You do!! well, anyway, I didn't have an appointment with him, I just walked on over to his office and said.. ok, the bone scan is done, the MRI is done.. I just had blood work drawn too, now what about my shoulder pain?? he ordered the tech. right then and there to do an MRI on my neck as well. I was always saying;"oh, ok to these Dr.'s" until I was so fed up, that I keep bugging them and bugging them. So, my surgeon ordered all these tests, and is now concerned as to what I HAVE TO SAY! he even pinched my cheeks yesterday and said I just want to see you get well. So, remember, your in the driver's seat, NOT these doctors. do they feel your pain?? noooooooo!! hang in there and I too am so sorry that they waited so long to diagnoised you !...darn it!! And, like Jeannie said, that Dr. who told you to relax?? well, HE needs to hit the road! much love and (((hugs)) going out to you. Love, Desi

[unrouley1]

i am so lucky that i was sent to the right doc who has been able to help me. just before i was diagnosed i had strange things happen to me. i had surgery on my R shoulder and it started to break out around the incision, down my arm, my back... and it wasn't pimply. it was red sores. very strange. THEN the right side of my face looked like something exploded on me! i actually wish i would have taken pictures because it was all connected. once i began treatments, the swelling, the redness and the acre of bumps on my face went away. i have been very fortunate to get relief from the blocks. they have been hurting like hell, but i will take the 2 minutes of agony compared to all the other.

i'm so sorry that you are hurting. but you really need to get another opinion and a doctor with some bed-side manner.

shalom,
angie

[InHisHands]

Originally Posted by dealingwithtos

Well, now I have burning in my face (5-6 times a day) but is red constantly, burning and cramping in my other arm (often), hurting/burning in my hip and burning on the tops of my legs.

The same things happen to me, and I have a dx of RSD. I am afraid that this really is RSD, the way you describe it. It is horrible!! Hang in there!