just what does a pain mgmt clinic do for you?

Discussion in 'Fibromyalgia Main Forum' started by daylilyfan, Nov 25, 2005.

  1. daylilyfan

    daylilyfan New Member

    Hi all!
    On top of years of fibro, I have now been "blessed" with something called RSD in my shoulder. Believe me, if you think fibro hurts, it's a walk in the park compared to RSD. On the RSD sites, they rate RSD as more painful than childbirth, but the pain doc I went to, as well as my family doc say that the "new" thinking is not to prescribe pain meds for it. To much chance for dependance.

    I went to occupational therapy today, otherwise known as an hour of h**l.... which is the only thing they will prescribe. When I went in, I was crying from pain. They asked me what I was taking for the pain, and I said nothing. "WHAT? - WHY?" I said cause they won't prescribe anything that works. They said I should call my insurance company and see about switching to the pain clinic at the hospital their therapy place is at. They said they have other RSD people, and if they have that much pain, they do something about it.

    I'm not out to be put on heavy narcotics - at this point, I don't care if they tell me to wear a clothspin on my left earlobe if that is what will help. All I want is to be able to get a few hours sleep. I work 2nd shift, so it doesn't matter if I am groggy in the morning. I don't have to be coherant till one in the afternoon! Just knock me out at night for Gods sake so I can get some sleep!

    SO - I know many of you go to pain management clinics. I'd like to know, just what exactly do they do for you? I've read a little about clinics that send you to psychiatrists, or make you go to hypnotists, or do drug tests all the time that cost you a lot of money. BUT - what do they do that really helps you to feel better?????
  2. KerryK

    KerryK Member

    Sorry to read about your RSD. Do a Google search on low dose Ketamine therapy. It looks promising. Maybe a pain clinic would be willing to try that with you.

    Good luck!
  3. sues1

    sues1 New Member

    I had to look that one up.....so on a search engine I simply put RSD and found many articles on it and treatments.

    Maybe you will want to do the same and see what might be best for you.

    Wishing you the best.....Good Luck.........Susan
  4. daylilyfan

    daylilyfan New Member

    in the last 2 months since having this, I have read everything I can find on the net about RSD. I've joined several RSD message boards. BUT - they are nothing like this board! Very few messages a day. I know RSD is not fibro. I don't expect anyone here to be able to help me with a treatment for RSD. But- you all have been to pain clinics and could help me know what to expect and how to tell a good one from a bad one.

    I know MANY of you all go to pain clinics and docs. I've been a member here for a long time. I've seen so many people complain about how they get treated at pain clinics.

    BUT, I don't recall reading good experiances, or just what the pain clinics did to help you.

    I figured that going to a pain clinic would be about the same no matter the problem - because the way "pain" is looked at by the medical profession seems about the same. One thing that is different with the RSD is that it is something they can see and feel. My hand and arm is red, swollen, shiny and cold to the touch. Hard to have that with the fibro.

    I'm trying to decide if I want to try going to this other pain clinic, or try to find a doc somewhere in Ohio who has a clue about RSD. It seems they are few and far between.

    So.... I'm asking what they have done... did they just send you to a psychiatrist? Did they just give you an anti-depressant? Give you relaxation tapes? Make you so mad you never went back, or wonder of wonders- actually help you?
    [This Message was Edited on 11/26/2005]
  5. karatelady52

    karatelady52 New Member

    I was reading on my lyme forum and came across this post who is a person with lyme disease asking what this is:

    Most of my symptoms are right sided. My right seems inflammed, swollen, sometimes visiby. With treatment I began to feel like I was comming back into balance and my right was becomming less swollen and less warm.

    For some reason I am feeling an increase in this swelling and warmth again. I haven't changed ABX in a long while. I will be doing that on Saturday.

    So is this Lyme , babs, bart, mycoplasma?

    Any ideas on why it may be increasing? And what may be causing it.
    --------------------------------------------------------

    Sounds like Complex Regional Pain Syndrome (or Reflex Sympathetic Dystrophy). Has any doctor said you might have that? The swelling and inflammation can be signs.
    It's a nasty pain disorder, but apparently Lyme can sometimes be behind it so if Lyme treatment has helped you, then you've probably gotten to the source. It can progress and spread to other areas though, so you are right to be concerned.

    How long have you had the symptoms? Did you have an injury? You might see what a chiropractor has to say. Maybe also try increasing antioxidants and see if that helps.

  6. daylilyfan

    daylilyfan New Member

    in all the reading I have done, I have never read anything about Lyme having anything to do with RSD.

    What I am trying to figure out is what will a pain management clinic offer me that a regular doctor will not? If they are just going to send me to a shrink and charge me an arm and a leg while they give me drug tests that my insurance won't cover, I don't need that. But, if clinics really do something to help - and I can't give examples, because I don't know what it would be... then I'd be willing to try to find one to go to.

    And, how do I know if I am at a good clinic verses a bad one?
  7. twister425

    twister425 New Member

    Idont post alot and I dont know if this will give you any insight or not. I've only been to my 1st aptt. I saw a psychiatrist first. He agreed with the depression. Then I saw a nurse practitioner who is supposed to specailize in fibro. She did her exam agreed I have fibro. Increased my neurontin from 600 mg at night to 2400 mg throughout the day added zanaflex (working dose up to 3 times a day) 4mg.
    oh ya and did a flexion/ extension xray of my lower back.(my right leg is numb on the outer thigh) she yhen informed me that she will wean me off my fentynal patch. I am not happy about that. I have tried to go 3 or 4 days without and I cant even get around. I am not addicted to them for I have only been on them for a month. I just have a bad feeling about the place. I am all for non narcotic pain relievers but I want to feel better first. But also know if I need the extra pain relief that I will get it and i'm not sure?


    well good luck
    sherri
  8. Yucca13

    Yucca13 Member

    will look for many alternatives to help you with the pain.

    I had RSD about 15 years ago. I know what kind of searing, awful pain you are talking about. At that time, they gave me a series of presnisone shots and some Tylenol 3. The narcotic didn't relieve all the pain but it was enough to be able to sleep. It took about six months to be able to walk without a walker. I am one of the lucky ones in that I was diagnosed within a month of the onset and don't have disabling side effects. It can be a severe ongoing problem and because of that, giving a person a kind of pain relief that is time-released makes sense.

    Most of the doctors I've run into like to prescribe antidepressants and the gabapentin type drugs nowadays for many different kinds of pain. Physical therapy can be very important too (if you are comfortable enough to participate!) because it helps keeps the affected limb from atrophying. Sometimes so are nerve blocks. I've found that it takes a lot of trial and error to find what works. When you have a problem like RSD, you must be your own advocate and keep looking for what will help you.
    I hope you are able to find a good doctor that will treat the whole problem quickly.
  9. rigby

    rigby New Member

    Not a thing!!!!
  10. Yucca13

    Yucca13 Member

    Until I was able to go to a physiatrist who has a pain practice - not a clinic as such, I was Never given adequate pain relief. At least these doctors have the credentials (whether they help everyone is very debatable), but they are Able to prescribe what is needed.

    Being on a time-released type of medication has made a tremendous difference in my life and I am so thankful that I kept seeking until I found someone that was understanding and willing to try different modalities of treatment.
  11. karatelady52

    karatelady52 New Member

    I went to one for 6 years before finding the FFC. I hate to say, they never were much help.

    First of all, they didn't test for viruses and bacteria. Those can be underlying causes for many illnesses. What my pain doctor told me was everyone has a little bit of Epstein-Barr, for example, so there is no point in testing for it. Well, there's a huge difference if the viruses is active compared to being dormant.

    They never gave me very strong pain meds and my pain was horrible towards the end. She did try massage, accupuncture, pressure point injections, I bought that cane thingy for the trigger points --- nothing really helped.

    I keep thinking I want to send her a copy of my blood work from the FFC and show her my lyme diagnosis and the 3 viruses I have.

    Maybe each pain clinic is different, I don't know. I just know I wasted 6 years and never felt any better while going there.

    Sandy
  12. daylilyfan

    daylilyfan New Member

    and told her the therapy place suggested pain mgmt, but I really didn't want to do that - I'd rather stay with her (the family doc) if I could. She said to start taking Ultram with the patch, and also is adding doxepin at night. I HATE to do that, because I have been working SO hard to lose weight, and it's been coming of so very slow. I just dread gaining any of it back by taking the doxepin.
    She said she would send me to the pain clinic anytime I want to go - just ask for the referal.
    She offered to up the patch, but said to try the ultram/doxepin first since I am so afraid of the opiates.
    So far, adding the ultram to the patch has helped. Ultram alone doesn't do squat for me, but it seems to when adding it with other things.
    I went to the massage therapist today - she worked on my shoulder and arm for an hour and a half. Wow, pain and pleasure at the same time. Has felt so much better today. I think she can really make a difference. But, she doesn't like to do this type of massage more than twice a week. Said it could set me back if she did. I go again on Thursday. Of course, insurance won't cover it at all.

    I was so glad to see a post saying they had RSD 15 years ago -- leading me to believe they don't have it now. You don't see that very often - that someone actually gets rid of it!