[PhyllisJ]

So I have had RSD for over 5 1/2 years in my left wrist/hand. It has now spread to both arms, abdomen (including inside I think), face, possibly upper back, and my legs. It had hit my legs pretty hard, attacking old injuries in my knees and hip, making them so weak and unstable that I have to hold onto things to walk at all. I had to get my cane out again that I use when my hip gives me problems, but now it's like I can't go out without it, and finding walking almost impossible...not as much from the pain as the weakness. Oh, and the skin on my calves feels sooo tight and it's shiny! My legs will be burning but be cold to the touch sometimes, and my toes get really icy. Other areas will feel hot. I'm attempting to be in denial that it may be in my vaginal area and in my mouth.

Anyway, I have never gone to a pain doc for RSD (or anything else). The RSD in my wrist/hand was diagnosed by my hand specialist and hand therapist. The nerves in my left wrist were removed over 3 years ago, but the pain remains...I just don't notice the constant pain as much there. Any type of nerve block, shots, pumps, scs, injections, or anything like that would be an absolute last resort. No pain meds I've ever taken have helped the wrist pain. I'm currently on meds for narcolepsy and cataplexy, so a lot of pain meds don't play nice with those. Also, meds have never helped with the weakness and stiffness in my hand. So is there really any point in trying to find an RSD pain specialist? I'm so afraid I would be told it's all in my head...I've heard that many times with other things. I hate doctors as it is, so having them not believe me doesn't make me like them any better. Oh, and I will probably be starting on hormone replacements soon...so hoping the vaginal issues are low estrogen. So if docs are gonna tell me I'm crazy, meds won't help me walk better, and I don't want shots, is there really any point in going to a pain doc?

[alt1268]

phyllis

I really don't know how you have made it 5 years without seeing a pain dr. I barely made it 11 months. I say if you are in pain you should go see a rsd pain dr.

[Jimking]

Strange disease indeed. My wife who has RSD suffered for years before finding a doctor that was serious about treating her. I hesitate to respond to the OP because I fear others who are really in severe pain may take my wife's experience as something themselves are doomed to emulate. Everyone with this conditions suffers differently for sure. And there is no doubt the condition changes and moves and feels different overtime.
My wife's doctor stopped seeing her because she wanted nothing to do with those who are on medicare, although I was paying out of pocket for the visits, medicare was covering the medicines. Her doc referred my wife to several docs who took medicare but appeared to be the bottom of the barrel. They treated my wife as though she was a drug seeker, pushing SCS and charging several hundred to medicare for a sales pitch and to a patient who stated from the start "No invasive treatments".

Long story short my wife no longer is under a doctor's care. She stopped all medicines and suffers on her own. She made it clear to me that all those strong narcotics never really controlled the pain anyway. She suffers everyday hour of the day but in reality she seems to be in the same amount of pain as when she was on 2 60mil Oxys + several vicodins a day.

PhyllisJ, keep in mind, my wife suffered with no meds for years until she could not take it any longer, found a doc who treated her for 5 years and now is seeing no one and seems to be in the same amount of pain when she was taking meds. But I will add her pain level did decrease when she first started her meds, no doubt about it, it just seems she has been able to maintain a certain amount of tolerance perhaps. Very hard to explain.

[PhyllisJ]

Thanks for your input...both of you. I also don't want others to be influenced by my experience or not to seek medical help for their pain.

Thankfully, God seems to have blessed me with a high pain tolerance, but I also have a high tolerance to medications. I think I deal with pain differently than a lot of people. I have had back and leg problems for as long as I can remember, so I don't really know what it's like not to have pain of some level. I was born with this weird condition (not sure what it's called) that is basically a non-union of the shin bone. Mine never grew together completely...left one did most of the way, but the right has almost an inch space. Didn't find that out until I was in 7th grade, after years of telling my parents my legs hurt. By that time, the muscles, ligaments, veins, etc. had moved between that area. Needless to say, it caused all kinds of issues. Like RSD, it's rare so many doctors don't have a clue if I talk about it. When I was a few weeks old, they found out I had double hernias. Back then they didn't really operate on babies, so they waited until I was 8 months old, when I almost died because they were "strangling" me to death even though they were in the lower region. My family said they couldn't even hold me normal and I would writhe in pain and scream. My uncle, a PT, said he believed all the writhing and twisting I did as a baby were the beginning of my back problems. I stayed active growing up...I'm quite stubborn Now as I get older and the RSD gets worse, all my old injuries are coming back to haunt me. Oh, did I mention I was always dubbed "an accident waiting to happen?" LOL

I think some of my main concerns about going to a pain doc are them telling me there's nothing wrong and the fact that I want nothing invasive. Are there really any pain meds strong enough to take the fluctuating levels of pain without knocking you out? Plus, the walking problem isn't the pain, it's the weakness. I swear it feels like my knees and left hip are all having their own little ongoing cataplexy attacks!!

[LIT LOVE]

Everyone reacts differently to every med. I went years without strong pain meds, and now have been on them for years. Even a small dose of time released morphine helped me tremendously. A reduction of pain is more likely than an absence of pain. Things like Lidoderm patches can be helpful as well.

So long as you find a doc experienced with RSD, I doubt you'll be accused of exaggerating.

If you're content with your situation, there is no reason you have to start meds. But if a fear of a stranger's opinion is stopping you, then that's giving them quite a bit of undeserved power over you. A pain psychologist can help you work through some of these issues, as well as giving you additional resources to decrease your pain.

[PhyllisJ]

Originally Posted by LIT LOVE

Everyone reacts differently to every med. I went years without strong pain meds, and now have been on them for years. Even a small dose of time released morphine helped me tremendously. A reduction of pain is more likely than an absence of pain. Things like Lidoderm patches can be helpful as well.

So long as you find a doc experienced with RSD, I doubt you'll be accused of exaggerating.

If you're content with your situation, there is no reason you have to start meds. But if a fear of a stranger's opinion is stopping you, then that's giving them quite a bit of undeserved power over you. A pain psychologist can help you work through some of these issues, as well as giving you additional resources to decrease your pain.

No it's not a matter of being "afraid" of them. More concerned they would say the wrong thing on a really bad day and I would deck them LOL!! Just kidding...maybe.

But I'm just trying to decide whether to find one or not. I got a couple recommendations from the hand therapist I went to. One isn't covered by my insurance anymore and I still need to call the other one, so we'll see. It may come to the point of choosing pain meds over narcolepsy and cataplexy meds, especially since I don't drive anymore. But I so don't want to become dependent on drugs.