Please! Someone w/ Pain Mgmt Clinic/Ctr Experience???

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 16, 2005.

  1. orachel

    orachel New Member

    Just made this into its own post, as wasn't getting response at the end of the other pain clinic post...I'm pretty desperate here, so Thanks for the help!

    Another ??? abt Pain Clinics, here... 09/16/05 09:34 AM

    And NJE...thanks so much for this post. I've really been wanting info on this, and now it's a really time sensitive issue for me, so perfect timing!

    I see my FM doc Monday to discuss extreme pain issues. I'm on ultram and zanaflex, but still regularly have pain in the 7-9 range (where 10 means off to ER) while RESTING, let alone trying to do anything.

    So here are my questions...would love any input. Thanks in advance!!!!

    1) How did you first get your doc (or approach your doc) about sending you to pain management clinic?

    I like my doc, but its a new relationship and rapport isn't really there yet. I've already called him and tried to expl that while ultram and zanaflex may get more effective over time, and I know that, I'm in almost unbearable levels of pain very frequently, and its taking its toll. He gave me an appt 3 weeks before I was scheduled to see him again (that's this coming Monday), but I know he doesn't believe in narcotics, or anything stronger than what I'm on. I'm already going to take him MULTIPLE articles from other doctors/studies abt how true ADDICTION is impossible as long as you take acceptable amts for your pain level, don't take when not needed, and never exceed dosage (dependence is different matter, clearly). But I really think I need a referral to a pain clinic, as I know he's not going to scrip me anything stronger than what I'm on. I don't want to change docs, but how do I get him to send me to a pain clinic in the 1st place?

    2nd...When you're choosing a pain clinic, what is the accepted way to find out (preferably on phone before 1st appt) whether they're one of the clinics that NEVER use pain meds and only alternative therapies, or if they'll consider pain meds if your situation warrants it? I'm not sure how to ask that, and I DO NOT WANT TO COME OFF LOOKING LIKE A DRUG SEEKER! I'm not...I keep hoping the ultram and zanaflex "kick in" like doc says they will, and I'm already doing Aquatic Physical therapy, and have an appt with a pain mgmt psychologist who specializes in biofeedback on Tuesday. I'm reading everything I can get my hands on, switching to all natural diet, researching supplement plans in a big way, and practicing deep breathing/meditation/ and visualization techniques to try anything to deal with this pain without over medicating. IT'S JUST NOT WORKING! I know it will work in the future, I know I can get well, but seriously...I'm ready to lose it with this pain. I'm usually on the couch rocking and sobbing silently by the time my husband gets home in the evening, just because the pain has been awful all day, all night, and it gets worse as the day goes on. Plus, I'm taking klonopin for sleep, which is great for my restless leg, but I'm still waking up 5-15 times every single night! No wonder I'm hurting, but I just can't bear it anymore, and I really don't think I should have to suffer THIS badly every single day, nonstop.

    I didn't mean this to become a pity party...I'm so sorry, but I just almost can't stand it anymore. Plus, its really nearly killing my husband emotionally to watch me like that in the evenings, and that is so not fair to him. He desperately wants to "fix" me (he's an engineer...go figure! lol) and is so sad because theres nothing he can do.

    Does ANYBODY have any advice on these issues? I know this is totally too long...sorry. I'm just sitting here now with tears rolling down my face because I can't stand the physical pain....It's really making me a little bit nutso!Please? Anyone have any ideas?

    Thanks, and Gentlest hugs...
    Rachel
  2. tngirl

    tngirl New Member

    Actually my primary care physician recommended the one I go to. I just lucked out that they do prescribe meds.

    The pain management specialist is also a physiatrist (physical medicine specialist) who does believe in also using physical therapy, tens units, etc and does believe in trying the lowest dose possible to relieve your pain. But when that doesn't work he is willing to prescribe stronger meds.

    About waking up at night, I used to wake up that much too. Now I am taking Lunesta. I can't say it works 100% of the time but it does help significantly. I wake up much less, now sometimes only 1 or two times instead of 12. I believe I am sleeping sounder when I do sleep. I still have the occasional night that is very restless.

    I also have sleep apnea and use a cpap machine. Have you ever had a sleep study.

    I am so sorry your pain is so bad. I hope you get the help you need.

    Is there a chronic pain support group or Fibromyalgia support group near you? If so some of the participants are probably going to pain management clinics and might have some good advice on choosing a doctor.
  3. orachel

    orachel New Member

    Hmmmm...You gave me some serious food for thought. My primary FM caretaker is a Physical Medicine doc...Just liked him btr than the Rheumy's I consulted. I bet that explains his hesitation to overmedicate me. Like I said in post, I'm literally following each and every one of his PTherapy suggestions, as well as going 10 times beyond that with diet, quit smoking, positive Self talk (except for this post! Sorry ya'll...just realized I was so frantic because it was time for me to take pain meds I do have, and I'd forgotten!), and working on all sorts of self help stuff to try to manage the pain...it just isn't working.

    As for Support group and other resources...I've checked everywhere in the area, and they keep starting, then noone ever shows up bc they're in so much pain! Oy! I can totally understand that. Thinking seriously of starting one, but till I have the strength and energy for that, YOU GUYS are my support group. And you all do make me feel so much better!

    I'm sure it will get better, and just crossing my fingers for Monday! Thanks so much for your help and support!!!

    Hugs!
    Rachel

    OH! And forgot the sleep study ?....No. That's another thing I need to get out of Monday's appointment. I'm going to be VERY INSISTANT that I need both a sleep study and also some memory/focus/cognition testing (nothing expensive...but they do have actual paper testing that measures "fog" type of things). My sleep and my cognition are two of my biggest concerns. Oh, and pain too. I guess I have a lot of issues! ;)
    [This Message was Edited on 09/16/2005]
  4. orachel

    orachel New Member

    and really hoping I can get a lil more input. thanks in advance for help!

    rach
  5. CarolK

    CarolK New Member

    I am so sorry to hear that you are having so much "break through" pain... pain that cannot be controled with the Ultram and otc meds!

    I KNOW EXACTLY WHAT YOU ARE GOING THROUGH!!!! I too have used Ultram and have needed something much stronger!! Problem is (and you can look at my past postings regarding this issue) I cannot get ANY doctor to write script for me!!

    Very frustrating indeed. I've gone to a rheumy, a neurologist, my primary care and TWO PAIN SPECIALISTS... NONE OF THEM WILL GIVE ME ANYTHING STRONGER THAN ULTRAM!!

    After spending over an hour with the "pain management specialist".... she asked if I wanted to talk to a pain nurse, try biofeed back, meditate, see a psychiatrist, try yoga.... everything but PAIN MEDS!!

    I hate to say this, however, I had a very unproductive experience with the "pain doctor"!! Like you I was made to feel like a "druggie"... I even tried to make a contract with some of my doctors... ie... give me 10 Vicodin... you can even check my bottle to make sure that I am not abusing the drug!! BUT NO ONE WILL GIVE ME ANYTHING!!

    So Rachel, I feel for you!! I wish I could say that it is easy to find a doctor with a sympathetic ear... but they must be few and far between. I get frustrated reading some of the posts here.. I see people getting vicodin, oxycontin, morphine patches... etc.... all the "heavy duty" drugs.... but I cannot get one vicodin. Some people I've heard of have even resorted to smoking pot to get relief!! How aweful that this pain is so very UNDERTREATED that people have to resort to pot in order to get relief. I for one have never smoked in my entire life, so smoking pot is out for me!

    Well good luck to you Rachel!! I wish you well and I hope you have a much better experience than I've had in getting your pain under control!

    Do let us all know how your appointment goes with the pain doctor... it will be interesting to hear your story!

    Blessings to you Rachel.... CarolK
  6. nje

    nje New Member

    hon i just got treated like a druggie at a pain center today. i am so upset. read my post about it. its a long one .now i`ve got to find me a doctor,somewhere that will precribe me something. see my post it says bad experience with pain management center. but they are all different maybe you`ll find a good one.
    (((((((((hugs)))))
    NJE[This Message was Edited on 09/16/2005]
  7. orachel

    orachel New Member

    sooo sorry for your trauma!
    Rachel
  8. ckk

    ckk New Member

    hello, i was going to a neurologist, then it just became too much of a drive, someone suggested a pain mgt. doctor and so i looked one up in the yellow pages by me and made an appointment. just lucked out i guess. he used to just give me ultram then the last few visits he gave me vicodan, however, last visit he said...i have to ask, are you addicted to the vicoden? i was like are you kidding me? ( i didnt really say that) i just said no, i just take them when i am in a lot of pain and take the ultram for my regular pain. i have an appt. on tuesday, so i am actually wondering if i gave him the "right" answer". anyway, i take ultram with 3 motrin at once maybe that will help you. also, little suggestion, maybe i am wrong but i wouldnt bring those articles about addiction to the docs office. i just feel the more you try to "convince" them that you are not just wanting to take meds for the heck of it the more they will raise their head and say hmmmmm. i could be totally wrong. as a matter of fact does anybody here have a comment on that? as for knowing whether they do give out drugs or not you are not going to know until you go and see what he prescribes to you. if its nothing thank him and try someone else. hope any of this helps.
    good luck and let us know. i think i need a little luck myself for my appt. on tuesday! remember....take motrin with the ultram.
    ckk
  9. tandy

    tandy New Member

    Man-o ! I read your post and had to look into your profile! Your on the very same treatment plan as I am.
    Ultram,zanaflex,pool therapy and starting bio-feedback next thursday! So far nothing is helping.
    I have extreme pain too so sure do relate.I looked at your profile to see if you were near me in NY.
    I did go to a pain clinic this past Jan. and got nothing more than I have now. I hoped for something stronger because I NEED it. No luck!
    Wishing you more luck then I have had~
    I will continue to look for better help tho~ I must!
    My good days are still at a 6. What the heck kinda life is that?! Most days are 8-9.
    (I hate to say 10 because to me,10 is not even able to pick your head up off the pillow)
    Hugs
    Beautiful pic BTW!! Your gorgeous![This Message was Edited on 09/16/2005]
  10. lilaclover30

    lilaclover30 New Member

    I had previously read your post and saw your beauitful pix of you and DH. I know your pain! I hurt so very bad today and I feel for you. My only pain med. is Tylenol #3 with Cod. That lasts for about 2 hours when I take 2 and they are to be taken every 6 hrs.

    My PCP recommended an MRI of back, a dx of spinal stenosis also, sent me to a neurosurgeon, (why, I don't know), he did x-Ray, said nothing but surgery just for back, then an appt. with pain clinic in Oct., then PCP wants to see me to give me my options~~~~~~~~ I have no idea WHERE I stand now.

    A friend said the pain clinic uses injections for spine and for trigger points. So, I can't help you (certainly wish I could) because I have no idea what lays ahead except pain.

    This is one of those days when I too am discouraged! Where doi we go for help? I do so wish that I could give you an answer. You are such a beautiful lady!! God Bless you.

    Gentle Hugs and hope that ayou can find help
  11. rrsbaby

    rrsbaby New Member

    sent me to pain management DR. Had my first appointment today. Went well, so far, he wants to inject me in one month if I let him. I am not so keen on the idea of being injected in 16 of 18 trigger points.

    I was sent to pain management DR because of a worn out disc in the lumbar area and bone spurs there and in my neck and I do not want to have surgery now.

    I could be wrong but I think you need a referral to see a pain management DR.

    Good luck to you,
    rrsbaby
  12. orachel

    orachel New Member

    Ckk...excellent point abt the articles. I'll have to mull that one over. Though I already think my doc knows I'm a research nut bc when i went for the first time, I took 130 pages of my journaling of symptoms, and about 2 dozen articles, charts...and I was making suggestions to him about my treatment plan! LOL....I am one pushy Broad! But, you may be right.... I'd do the motrin, but i've never felt very well on motrin, even before the FM...always upsets my tumtum, but thanks for suggestion!

    Tandy...we must catch up on here soon...amazing similarity in treatment! I start biofeedback on Tuesday! That is wild! I'll page you or you page me in next few days so we can touch base in more detail...

    and both of you. I just read this amazing article about how a standard cough medicine has virtually no side effects or interactions w/other meds, but when taken with ULTRAM virtually doubles its effectiveness!!!! Scientists can't figure out why, but its been extensively tested, and is literally almost doubling the pain relief brought by Ultram. I will make sure to look name up for both of you within next day or so and page u...but if for some reason the fog hits and I forget, track me down, ok? This could be the blessing we've all been waiting for! And about flipping time! lol

    And thanks to every one else who posted, also...huge support and hugs to all of you
    Rachel
  13. karatelady52

    karatelady52 New Member

    My pain specialist missed my diagnosis for 6 years.

    She gave me pain meds (light ones like Ultracet)
    told me to exercise lightly
    told me to de-stress
    tried accupuncture
    massage
    synthroid
    bought that cane thingy for pressure points
    used heat around sore neck
    tried pressure injections

    ANYWAY ---- I found out about the Fibromyalgia and Fatigue Center in Marietta, GA and was tested for viruses and get this:

    I started going to the Fibromyalgia and Fatigue Center. The first visit they took 22 vials of blood and what came back was amazing. I had low everything, progesterone, testosterone, cortisol, nk cell, hypercoagulation (which is where viruses hide), thyroid reverse T3, my whole body was out of wack.

    About a month later they tested me for Lyme disease at Igenex labs. I came back with 5 positive bands. So I do have Lyme disease plus 3 other viruses. Now I'm on a regiment of ABx's, Heparin to thin the blood and other supplements. None of this would have been found with my pain specialist.

    After dealing with the lyme, we will start to kill the other 3 viruses I have.

    If I had stayed with my pain doctor, she would have continued giving me pep talks, blood work, Synthroid which wasn't working for thyroid and I would probably get worse and worse as these viruses ravaged my body.

    There are quite a few centers opening up around the U.S.
    Many people travel to get to them and then do phone consultation on their second or third visit.

    These centers will give you pain medicine that really help with pain. I'm taking a low dose of Oxycodone and it helps tremendously with pain so I can actually have a half-way normal day. My doctor asked me what strength I thought would be best!!! What a difference!

    Believe me, its well worth the trip to get your life back!

    Sandy
    p.s. Rachel, my husband is an engineer too--they want to fix us!
  14. mollyq

    mollyq New Member

    I have an appointment next week with the third PM clinic I'm trying in order to get relief for my pain. The first one thought I might be a candidate for long-acting narcotics, but he doesn't prescribe them. So he referred me to another place that he mistakenly thought prescribed them. So on to the third.

    I am very tired and discouraged and can relate to the rocking and crying on the couch in pain by the end of the day. I just found this site. It's too bad there are so many people who know what this is like, but I'm glad that i found you!

    Molly
  15. tandy

    tandy New Member

    Bumping this up till you get the name of the cough med.
    teehee :) yup,...we're desperate!!

    I wonder if its dextromathorphan??(sp? something like that) Its an ingredient found in many OTC cold meds.
    Suppose to make any pain med work better.
    I heard something before about this.
    But never needed to check into it further.Then I forgot.
    (talk about fog!)
    You re-freshed my memory~


    Yes,... lets see how our lil treatment plan goes.
    My 1st bio feedback is this thursday.
    They even mentioned taking part in a study of a new fatigue drug. Not sure if I'll participate tho.

    My therapist said that most Fibro'ers/CF patients have off the charts beta brainwaves shown by bio feedback printouts.
    and that basically our brains never rest or are working overtime to process even the simplist info.
    (I feel overworked!)
    Our muscles are in an almost constant contraction of being worked out too!! even at rest our muscles show signs of being on a treadmill or some other exersize. ?? always!
    weird huh? no wonder we're exhauted!

    Take care :)
    keep us posted/and have a nice weekend!
    Hugs
    Tandy
  16. spasco

    spasco New Member

    Hey Rachel,

    I've been going to a pain spec for about 4-5 mths now. I need to give a bit of background though, if you'll forgive me.

    I've had Crohn's Disesse for 27 yrs. Immediately the back and sacrolilitis set in. My GI and all other drs, including my Rheumatologist kept telling me it was Crohn's associated Osteoarthritis. I know that arthritis doesn't jump around though. I did my own research on AS and FMS as they are both associated with Crohn's. I knew I had FM.

    My GI would only give me Codeine #3. What a joke! My Rheumy tried Vicodin 550, then Ultracet and of course Prednisone. No help there unless I took at least 2, then only the minimum. I got to the point where I was almost bedridden when I finally got the Pred out of my system. I called the rheumy's office anmd told them I wanted to see a pain specialist. THey made an appt.

    That was the best move I ever made! Within 30mins I was diagnosed with FMS! He told me I had horrible headaches without my saying a word about it. He just asked some ?'s, had me walk back and forth, do some gentle bends then he touched the tender points. He said I have weak legs. We went on to do nerve conduction studies also, and found carpal tunnel, with lots of nerve damage throughout my body.

    He started me on Vicodin 750, but they didn't help. We moved up to Morphine 30mg time release. A little better than Vicodin, but still too much pain. We moved on to Morphine 50mg and that is where I am now. He said it's a reasonable dose. On some days, with an occasional SOMA, I can handle it as it knocks the pain level down to around 5. On bad days, like the last 3-4, I am still in the 8-9 range. But. it's better than where I was!

    This man has been a godsend! On the first day, I cried all the way home! I was so relieved when I finally found someone, after 27 yrs, who understood. We are still working on it and I expect it to take time. But I would recommend this man to anyone. He is compassionate and willing to talk and listen, no matter how long it takes.

    God bless! Stephanie