[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.

[finz]

Well, I've certainly met QUITE a few so called medical professionals who I've been tempted to 'deck' since I started with RSD.......so I can't guarantee that you'll have luck avoiding them if you follow my advice.....

If the hand rsd that started it all was dx'd by a hand specialist, who has dx'd all of the new areas ?

You asked specifically about seeing a pain doc. I don't believe seeing a pain doc is a necessity for ALL rsd'ers. I do believe it can be helpful for many of us.

Despite what I have read in their promo materials, the pain clinics that I have seen don't seem to have the dedication to "evaluating the cause of your pain and determining an interdisciplinary plan to help alleviate your symptoms" that they promise My experience has been that they seem to offer injections and procedures (trigger point injections, nerve blocks, SCS's, etc), but NOT the diagnostic skills, interdisciplinary plan (PT, accupuncture, counseling), or maintanence with oral meds that many chronic pain patients require.

The (non injection) meds that can help many rsd'ers usually (in my area and from what I've read on here) aren't prescribed by a pain doc. That has never made much sense to me, but I'm just a patient Those types of meds more often are prescribed by a primary doc or neurologist 'managing' the rsd. Some of the meds frequently used include narcotics, anti seizure meds (Neurontin/Lyrica), anti-inflammatories, anti-depressants (Cymbalta, Savella, Elavil, etc), topical meds.

None of the 'traditional' meds will make your legs feel stronger, but IF they help you FEEL better, you may be able to move better, exercise more, and get your legs stronger. I was having severe issues with L leg weakness/giving out on me several months ago.

My rsd is not in my legs, but in my neck/thoracic outlet area. I also have fibro and have tendonitis in both elbows, both knees, and bursitis in both hips. The knees and the hips were ALL acting up something awful. Had to have help getting out of chairs, couldn't manage stairs, numb L leg when walking, few falls, lots of banging into walls. Numbness L saddle region (including labia, occ incontinence)

I had a strange sequence of events. Saw a new shrink, re-started on Cymbalta, . Went on vacation and couldn't do what I wanted to because of difficulty ambulating. Got call on vacation that my mom fell and broke her back.....hurried home for her surgery. Worried about my own mobility AND trying to help mom (I"m a nurse.....or I was until rsd hit). Saw orthopedist, got steroid injection to L hip. Saw neuro, went up on narcotic dosages so that I could try to exercise more.

2 months later........walking about 4 miles a day, helping care for mom, like having a new body (still not a 'great' body by most people's standards, still dealing with chronic pain, but so much more functional than I was)

Now another 2 months later......I am WELL overdue for another hip injection. That is my worst lower extremity area and it seems when that goes downhill, everything does. I have GOT to get that taken care of soon !

Notice there was NO pain doc in there ?

There were other docs though, who are helping me manage my rsd and the fall out from it.

And I look forward to adding the pain clinic back into the mix because I'm also long overdue for nerve blocks to my neck, but waiting on WC approval.

If you have the right doc overseeing your rsd plan and you know what options are out there, you may not NEED to see a pain doc right now. Seeing SOMEONE though, I think is CRITICAL.

Are you still working ? If you need to apply for SSDI, or get an SSDI review in a few years, you will NEED documentation from a doc managing your rsd.

[PhyllisJ]

Well, I haven't seen anyone for the RSD since my hand specialist did all he could to help my wrist and my hand therapist finished out all of the visits my insurance was covering at the time. After that I did my own therapy on my L wrist and hand, trying to do as much with as possible...which is very little compared to what it was since I was left handed before.

As for the new areas...I suppose you would say they're self-dx'ed. So so so tried to deny what it was, but knew pretty quickly it had spread. Denied the abdominal area the longest, telling myself it was my imagination and it would get better as more time passed after surgery. That didn't happen, so a year later I finally had to admit to myself that it really had gone there.

I was in a car accident in 1992 and my L hip and knee were jammed and twisted, making my L leg 1/2 shorter than the R. Both of my knee caps sit off-center, so even before the RSD spread, they gave me problems...kneeling became impossible. I've been able to hide my limp most of the time, but can't now.

Not sure if you're familiar with narcolepsy and cataplexy, but cataplexy is generally brought on by strong emotion and causes the muscles to go limp, kind of a shaky jello feeling, and you lose control. Laughter, fear, and stress seem to be my main triggers. When I was thinking the other day about how to explain the weak feeling in my knees and hips, I realized it felt just like cataplexy. I go back to my sleep specialist Thursday, and I plan to talk to her about it. It's kind of funny...everything I have is made worse by stress...and everything I have causes stress.

I'm used to the stiffness and weakness in my L hand...very annoying, but I just deal with it. The legs aren't as bad as my hand yet, but I don't walk on my hands, so I definitely notice the weakness and pain in my legs. I have arthritis and fibro, but the RSD is definitely it's own kind of pain.

Oh and that sucks about it being in your neck. I read that and cringed...have enough neck problems to know I don't want to deal with RSD there, too! That has to make things rough!

No, I don't work. I've worked less than 5 years out of the last 24...enjoyed being a stay at home mom and wife. Since my hubby works and has a good paying job, I don't know that I would try for SSDI or anything like that. I did fill out a thing on their website one time and they sent me a letter saying I hadn't worked enough to qualify...which seemed kind of crazy to me since there's all kinds of people on it who have NEVER worked.

Thanks for the input and advice. I'm still not sure at this point which way I'll go. I see 2 docs Thursday (sleep and gyn), and will be talking to both of them about the RSD. I know my hubby will insist I see someone about it since he can barely touch me anymore and it's so hard for me to walk or stand. I think he's having a hard time with this. it was just a few months ago that we found out I had narcolepsy and my license was suspended (California law). I'm ok with not driving cuz I don't feel like it's safe, but it sucks relying on other people if I have to go somewhere.

Again, thanks for the input. It's good to talk to people who know what this stuff is.

[LIT LOVE]

Regarding SSD, those who don't have enough work credits only receive SSI, not SSDI. And that is only for those with very limited income. It's essentially welfare to keep the disabled from becoming homeless.

[painman2009]

HI phyllis. no pain management dr.. huh.. I kinda like that idea. I have my nightly cocktail but it doesn't do much for the pain until or hold i say unless i take three or more over lapping consecutively. and sleep evades me often. I think I read earlier in this thread that you should do what you are comfortable with. and as far as dr,s saying its all in your head.. have fun with them. they hate being educated those types of Dr,s. bring material on RSD to him/ her and make the Dr read it then see what is said. do not be afraid . stand tall be confident in the knowledge you have . and remember that it is the dr,s "job" to find out why u are in pain, and if they are unequal to the task you can either walk out and find a different Dr or challenge them to do their job. I would do both and never return to that dr . I think best bet is to find an RSD dr near ou if you can. or a dr that isn't afraid to continue to learn and be open minded. Remember their is no cure for the common cold either but dr,s see patients and treat them any way. good luck.