Escalating a lot quicker than expected
 

After being diagnosed a month ago with RSD pain the past two weeks has reached new indescribable levels. I currently take Vicoden ES and Lyrica 75. The Lyrica gave me some relief with the burning for about the first 3 days, however its no longer effective. When the pain is so bad I have no relief from the Vicden. On my "good" days the Vicoden makes the pain tolerable (but "good" days are rare). I knew that the RSD was progressive but, I didn't think it was going to progress this quickly. I go back to the nerve specialist/ pain management this week, thank god! I really hope that there are different meds he can put me on so I can have some relief. I also know that we are going to talk about nerve blocks if both of us were not happy with the results of pain management therapies and PT regimen we tried. I also think that the RSD is already crawling up my leg. It started out lower right leg, ankle and foot but the pain is up to mid thing now. I have no burning in the thigh (yet) just the excruciating pain with tingling.
Has anyone else had this pain escalate so quickly and crawl up the extremity this quickly? It's gone from bad to worse in a matter of a month, and worse to unbearable within the last two weeks.
Wishing everyone a pain free day!
HurtsBad (Amy)

Amy,

Sorry to hear that the RSD is becoming a controlling painful monster. My RSD started in my right leg (knee down to toes) due to an auto accident and possibly from the surgeries to fix my dislocated knee cap, torn meniscus, bone chip in ankle and Lis Franc Fracture in my foot (had toes fused to "help" - yeah, right.).

The pain was unbearable, the tingling, the coldness, the achy unstable lump that was once my leg. I was stupid though. I didn't research RSD completely. I went through all the fun injections (hurt like hell) to the point where I did the spinal cord stimulator trial. Out of a week, I had one good day (the last day). The relief it provided was amazing, or so I thought. I think I was just happy to be "pain free", and the "promise" of once the permanent is implanted, it would work amazing.

Well, the first attempt at the stim had to be redone. Even though in the trial, my doctor knew the leads migrated, he didn't "permanently" place the leads. He also placed my battery under a stretch mark, and this caused the battery to move into a position where no one could "safely and quickly" communicate with it. Two months later, an orthopedic surgeon performed a laminectomy and placed a paddle instead of just lead wires. He also moved my battery to another location.

Since the laminectomy implant, my RSD has gone from just my right leg to what I fear might be a full body. It is affecting my arms, hands, fingers, back and neck. I can't use my stim because it affects my heart/chest. Even with the stim off, I am feeling sensations in my chest that feel like my limbs feel. This makes me think that is "all over".

I am seeing a doctor/specialist on the 29th of March in Cleveland. People say that the Cleveland Clinic is great for RSD treatment. Treatment of RSD responds better when caught quickly. Avoid surgeries if at all possible. Consult with a neurologist if you can. Research and read! Ask questions! If the first two blocks don't help, look into something else and look quickly and aggressively.

RSD is a crappy thing. Not too much information out there and the pain management doctors all seem to want to do the same thing - blocks and then the spinal cord stimulator implant. Ask yourself if the risk of it taking over everything is worth the relief for just one part of your body right now. If I could go back with the knowledge I have now, I never would have consented to the 2nd implant. I would have forced my orthopedic surgeons who told me that the icy cold water dripping, tingling, swelling, mottled coloring and bruises that seemed permanent was nothing and would go away to send me elsewhere. To send me to a neurologist at that time. Surgeons always do their "jobs right". It's always the patients fault or it's in their head.

Please research and read. Ask questions. I cannot stress this enough. Hugs to you and best of luck on your "journey" through what I call hell.

I'm sorry you are in such pain. If you were diagnosed a month ago, how long have you had RSD? If it's relatively recent and you are getting the right treatment, you may actually have a pretty good prognosis. I was treated within about 6 weeks of onset, and while it initially seemed to spread up my leg (quickly), eventually the whole thing went into remission. It took about 1 1/2 years for the pain to completely go away, but I did have very aggressive treatments from the beginning of my diagnosis. I'd be happy to share what I tried (it's a rather long list). Please try not to worry about it spreading, as the fear of that happening can make your pain worse. Ask your doctor what else you can try. Maybe Lidoderm patches, Ketamine/baclofen cream, different meds (neurontin?), nerve blocks, TENS unit, biofeedback, mirror therapy. Whatever can make your pain manageable so you can do PT (maybe aqua-therapy?) The more you can use your limb the less likelihood of it spreading. I also used to play a lot of "mind games" with myself--I would try to focus more on the limb (or other parts of my body) that DIDN'T hurt. It can be a long road, but even if it seems to be spreading now it can get better.

I think the course of this condition vaires a lot from person to person.
It is a positive you are getting treatment so soon. I hope the pain doctor this week can help you and you get relief asap.

I'm sorry to hear about the progression of your disease. It sounds a lot like mine as far as the speed with which it progressed. The "good" news for me is that it is still limited to my left leg only, although it has spread beyond the original distribution of the damaged nerve.

I agree with daniella, early treatment is best. There are some other good drugs/combos out there that can help if the Lyrica isn't cutting it any more. Hang in there. :hug: