I went to my internal medicine doctor today (he manages my medicine and everything so I don’t have an hour trip each time I need a check up, etc). He checked my journal I keep notes in each day and said he didn’t like how many days in the past month, let alone 4 months, that I was in pain despite gabapentin, Cymbalta, and tramadol. He is referring me to a pain management doctor. I was just wondering how many of y’all have seen a pain management specialist and what should I expect?
Thanks!
Hi small-town girl
I’m due to see a pain specialist anytime soon. Gabapentin Tramadols and Duloxetine barely work for me anymore. As far as I am aware they help you learn ways of coping with the pain using self help techniques. No idea what exactly is involved but I’ve heard it’s amazing what they do. If I get to see them before you I’ll let you know what happens
Darren
I went to a pain specialist and she reviewed my whole body, pain levels, strength, mobility and medications. Definitely understood the disease. She agreed with the gabapentin but suggested I go off cymbalta and try savella. She (of course) recommended I loose weight and sent me to pool therapy. Unfortunately I am in the small percentage of the population that had a bad reaction to savella. Best wishes
I have been seeing a pain specialist for about four years. After trying and retrying all the medications that supposedly help fibro I said no more! She agreed that nothing new or old has given me any relief. We agreed to stop all meds and just use Percocet 5/325 on an as needed basis. I have been dealing with this for over 25 years. I try and do water aerobic twice a week which only increases my pain level. If friends ask me to go out for the day, I start with percoset. I pick what I am willing to pay for in pain. Wish I was more positive but at 74 this is very old.
Pain management specialists can be very mainstream. So they may just offer advice based of statistics or research rather than specifically best for you. So if something they suggest doesnt work for you don't feel pressured to keep doing it. I would ask if they can try you on orphenadrine and LowdoseNaltrexone. LDN or low dose naltrexone is an opiate blocker and somehow tricks your brain into creating natural pain killers. I don't think gabapentin is the be all and end all. Try asking your pain management doctor to let you try different/alternative things and see if they can find any underlying cause of pain :) Good luck!
I also am on gabapentin, low dose Butran patches and hydrocone (low dose as needed). I have tried so many different combinations including Cymbalta, Savells, Lyrica, etc. It does seem that the meds I am currently on have helped the most. At least to the point where I have 5 or 6 good days a month. By good I mean I can function without wanting to hit something because of the pain. My Doctor is the best I have found, and I went to several before finding him. He is an internal medicine Doctor, but is very knowledgeable about fibro. He also listens. If I read something about fibro, or a new med, he will listen and is willing to try to help me. I don't know if they will ever find something to totally help the fibro pain, and sometimes I think changing meds from time to time helps.
I have seen a pain management specialist and fibro expert twice. She’s a very nice person but her answer is, up the Tramadol, now twice daily 50 mg, she wants three times. She is knowledgeable, reads all of the studies I do, but I joke that it’s time to open the safe and give me the secret cure she only hands out to a Few people. Tramadol has.somewhat manageable side effects, but works erratically for me, and doesn’t touch severe pain and neuro feet. I’m not sure I’m going to get much help there as I don’t want to go to higher level opiates. May retry LDN, probably went up too fast, worsened my FM unbearably. Have medical MJ card but…no appropriate strains for pain available in this idiot state yet. I have many days where I lie on the couch and groan much of the day, exactly what I envisioned in retirement.
I DO NOT KNOW IF ANYONE WANTS TO HEAR MY STORY OR NOT...
IT IS REQUIRED THAT YOU GO TO A PAIN MANAGEMENT SPECIALIST BEFORE YOUR REGULAR DOCTOR CAN PRESCRIBE THE PAIN MEDICATION NOW.
WELL I WENT TO MY APPOINTMENT WITH THEM - AND YOU COULD HAVE KNOCKED ME OVER WITH A FEATHER... THEY TURNED ME AWAY!!! THEY TOLD ME THEY COULD NOT HELP ME!!! THEY SAID I HAD TOO MANY ISSUES AND THEY DIDNT HAVE THE STAFF OR CAPABILITY OF HELPING ME!
I FOUND OUT LATER THOUGH, THEY DID ME A FAVOR.... I GOT TO STAY WITH MY DOCTOR, WHO KNOWS ME, INSIDE AND OUT... AND I DONT HAVE TO LEAVE TOWN EITHER.
Where is it required you see pain management before being prescribed stuff??? 'Tis not the case in a lot of places thank gosh. NZ is much nicer than that haha.
Glad you’re all good now! :*
That is what I would like to have kown.. they didnt even evaluate me before turning me away..
Indi said:
Where is it required you see pain management before being prescribed stuff????? 'Tis not the case in a lot of places thank gosh. NZ is much nicer than that haha.Glad you're all good now! :*
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Yea maybe try taking 3mg of LDN at first? I guess pairing it with tramadol is slightly oxymoronic as LDN would block the effect of tramdaol :P Which is meg annoying aye. I just take orphenadrine and diclofinac instead, when needed. I only take 4.5mg of LDN but thats because I'm on sleeping meds which is lessons the effects of if I take too much
Capefibro said:
I have seen a pain management specialist and fibro expert twice. She's a very nice person but her answer is, up the Tramadol, now twice daily 50 mg, she wants three times. She is knowledgeable, reads all of the studies I do, but I joke that it's time to open the safe and give me the secret cure she only hands out to a Few people. Tramadol has.somewhat manageable side effects, but works erratically for me, and doesn't touch severe pain and neuro feet. I'm not sure I'm going to get much help there as I don't want to go to higher level opiates. May retry LDN, probably went up too fast, worsened my FM unbearably. Have medical MJ card but...no appropriate strains for pain available in this idiot state yet. I have many days where I lie on the couch and groan much of the day, exactly what I envisioned in retirement.
Argh sounds so frustrating. What the heck.
SNEAKERS1 said:
That is what I would like to have kown.. they didnt even evaluate me before turning me away..
Indi said:Where is it required you see pain management before being prescribed stuff????? 'Tis not the case in a lot of places thank gosh. NZ is much nicer than that haha.Glad you're all good now! :*
I was at 2.5 LDN when my fibro went off the charts, back to " normal" three days after I stopped. Actually, I would now think of taking LDN in early AM and suck it up until late afternoon to take a Tranadol, not ideal but doable. Tramadol is not exactly an opiate, works on different receptor sites than the ones LDN blocks. I couldn't take LDN at night because I had two of the worst, vivid nightmares in my life on it, apparently a side effect for some. First, I'm going to try yoga as I'm getting tired of medication. With a sinus infection now I'm on Tramadol, Tylenol, Ambien, codeine with guafenesin, augmenting, Flonase...too much crap, waking up is like having been hit by a truck.
What were the bad effects LDN had for you? I've been on it for about 8 months and I find it pretty good appart from sometimes sleeping a little less deeply so I don't know what it was like for you. And I totally totally agree on the having less medication argh. It makes you feel like a zombie sometimes! I try to eat a well as possible and exercise so I don't need many painkillers but can totally relate to the cold thing! I had an awful bout of a flu type virus and was so medicated I couldn't peel myself off the couch or stay awake long enough to watch a single episode of 'Weeds' haha. Hope you feel better from the sinus infection soon ! Also I'm gonna try this yoga bussiness now :)
Capefibro said:
I was at 2.5 LDN when my fibro went off the charts, back to " normal" three days after I stopped. Actually, I would now think of taking LDN in early AM and suck it up until late afternoon to take a Tranadol, not ideal but doable. There's a very active LDN Facebook group and very skilled pharmacist who posts and uses LDN himself. Tramadol is not exactly an opiate, works on different receptor sites than the ones LDN blocks. I couldn't take LDN at night because I had two of the worst, vivid nightmares in my life on it, apparently a side effect for some. First, I'm going to try yoga as I'm getting tired of medication. With a sinus infection now I'm on Tramadol, Tylenol, Ambien, codeine with guafenesin, augmenting, Flonase...too much crap, waking up is like having been hit by a truck.
Hi smalltowngirl,
I am glad to see your regular doctor is looking at the whole picture. I know for me it took a lot of trial and error to find a balance that works pretty well most of the time. I spent many years taking lots of medications with no real benefit that I saw. Instead I grew more and more depressed which then led to more medication. I finally reached a point where I decided I needed to be more proactive and research other treatment options aside from meds. I began a journey of trial and error and eventually stopped all medication. I did fairly well off meds for many years, mainly using things like mindfulness and massage and managing stress level. I did restart a routine med last year for nerve pain and I do take a muscle relaxer prn. I added physical therapy last year and found quite a benefit in that. Anyway I wish you the best of luck in exploring pain management options. There really is a variety of things to try and for me the non medicated options proved to be more effective. Please keep us updated on how you are doing. Hugs.
Hi Indi,
There is a very good published yoga study and followup by Carson, Oregon State Health university, I think, very encouraging. I went to yoga once before I got my month old sinus infection. We did a common, apparently, lying down posture and breathing called shavasana. After an hour, while I still had my major FM bad points, many small muscle aches and that overall feeling of malaise were much improved, I think, for a whole day actually. You want gentle or restorative yoga, maybe individual to start if you can a afford it. I went first to an intermediate non-gentle group class once due to a different incompetent instructor’s mistake and was in agony for hours.as for LDN, I started at .5 and went up .5 per week, probably too fast, until the day I was going to 3.5 and woke up with same horrific cranial fibro pains that got me diagnosed three decades ago but had gradually faded and been replaced by others. As I mentioned, they went away immediately after stopping LDN. I had those nightmares I mentioned twice when I started, taking before bed. I had no other positive or negative effects of LDN. Probably not a good trial, some people start even lower and stay on for months before going up, always hard to get yourself to do with no effect. I suspect there are subsets of FM and some nonresponders to LDN. Good luck.
Thanks for all of the replies. I'm just wary of new doctors and like to know what I should expect. This is sort of a touchy thing for me, as I really didn't want to see a pain management specialist until it was absolutely necessary. I've told my doctors that the last thing they need to do is send me to a pain specialist because I have a younger brother who would love for me to have a prescription to pain medicine. I already keep most of my medicine hidden in a lock box just in case he decides to come over (I live with and help my disabled mom).
You are doing amazing to cope without painkillers! Go you Small town girl!!!
smalltowngirl said:
Thanks for all of the replies. I'm just wary of new doctors and like to know what I should expect. This is sort of a touchy thing for me, as I really didn't want to see a pain management specialist until it was absolutely necessary. I've told my doctors that the last thing they need to do is send me to a pain specialist because I have a younger brother who would love for me to have a prescription to pain medicine. I already keep most of my medicine hidden in a lock box just in case he decides to come over (I live with and help my disabled mom).
Have had FM for almost 20 years, possibly more. I tried mainstream pain control and worked with Pain Specialists and most the medications listed in this thread, however, the most effective treatments have been massage (even just foot or chair massage), reflexology, warm baths and very low impact excercise like swimming. I eat as clean as possible and acutally do Yoga even though I am "full figured". It works! Not perfect. Still have my pain days, but cover myself in grace and allow a light activity day. Drink lots of water too. Because it takes attention to manage pain, my lifestyle had to change and I can't do everything anymore, but am more content and feel better. Good luck. I hope you find what works for you!
KeeKee