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I have fibromyalgia, have had it since 2011, and within the past year started getting migraines too. I have a really difficult time with doctors. I'm super poor, on mine and my husband's disability, and only just got onto Medicare within the past couple of months. For most of the time I've been sick, doctors refuse to give me anything (I had to beg one doctor for piroxicam, and then was afraid to take it because it's notorious for causing ulcers). My favorite psychiatrist retired, but for a long time she was the only one doing any sort of pain management, which I know is really shady, but no one else would touch it and it was getting to the point where I was suicidal and angry and freaking out all the time. I'm on tramadol 100mg tid now, though I'm taking a break from it. I'm also on baclofen, Effexor XR, and a bunch of supplements. Recently, I got a new rheumatologist and they did labs, and my ANA levels were a bit elevated, so we're trying Plaquenil, but it takes three to four months to start working. I'm on the end of month one. Most of the doctors at the super-poor clinic I went to for a long time kept telling me it was myofascial, or trigger points, which didn't sound right to me (there is nowhere on my body that you touch and it hurts farther down or up the body, it just hurts where you jabbed your finger). I was pressured into trigger point injections by a DO, those made me scream and jerk away from the needles (protip: don't loving jab needles into places that already hurt!), and then she laughed at me and said "I'm done torturing you" when it was finally over. I hope to God she gets fibromyalgia and gets the kind of poo poo she put me through. I'm kind of vindictive, though. I've tried acupuncture briefly at a free event, and it made me hurt worse and also made me really anxious. Massage is a no-go for me because I have problems being touched, even my husband trying to give me a backrub will make me tense up really badly, and too much pressure is agonizing. I don't have a working car, so I don't have a choice but to walk a lot to and between bus stops, but apparently this isn't good enough when doctors tell me I need more exercise. I've been told I need pool therapy but no one seems to want to pay for it. I finally found a rehab hospital that has a pool though, so I may ask my doctor about it. Apparently doctors think that yoga and pilates are free things, too. I don't really have anywhere I can try to do yoga on my own, my apartment is way too small, and I'm frankly terrified of being in loads of pain from it. Ugh. This is getting too long. I have really bad depression, some PTSD, ADD, and borderline PD, too. When I developed fibro, I lost the job I loved (but good riddance to the loving management), my GPA went to poo poo and I had to leave school, and my blood relations generally handled it poorly. I don't talk to half my family anymore, I'm pretty certain they hate me. I should probably have therapy but my drat psychiatrist keeps dragging his heels on getting me a referral. But I did keep and marry my amazing boyfriend, I still have a roof over my head, I'm still mostly mobile, and I have my cats. So I feel like I'm not allowed to complain as much. Anyway, things that help: marijuana rarely helps, it has to be certain strains, and I have to be in the right place mentally; sometimes the smell freaks me out bad. Focusing on something outside my body is helpful, like reading the forums, playing computer games (this has been getting more difficult lately), video games, occasionally cross-stitching when my hands can handle it. I spend a lot of time trying to sleep. I spend more time out trying to get things done and go to appointments. I suspect I walk more than most people I know, but I don't have a reliable pedometer, and my doctors don't seem to count it as exercise. Midrin helps sometimes with the migraines, thank God someone brought it back on the market. TENS units are okay sometimes, I just don't remember to use mine as often as I should. I'm extremely tempted to try one of those electrical cranial stimulators, but I'm pretty nervous and I doubt it'd ever be covered for me. I have a cane which helps when I have pain in my legs, feet, and hips, and I have a walker for really bad days. I also use the electric cart in the grocery store; I realized I should when one of the managers told me "I see you in here all the time clearly in pain, why don't you use the electric cart?". I still can't stand for more than half an hour tops, and that's on a good day. Even walking gives me pain in the soles of my feet, my ankles, all the way up my shins, and into my hips. Also: sheer determination. I worked my rear end off to get my professional certificate (I'm a pharmacy technician), and this month, by God, I'm going to renew my certificate for another two years. It's one of the few things I have still. Also also: pure blinding rage is good for powering me through the day. Not so great the next day, but if I really absolutely have to do something, I get pissed off at it, at myself, at the world, at everything, and I can power through it. I'm sorry if none of this is helpful. I'm really beaten down by my pain and though I've been told people go into remission from fibro, I don't see the light at the end of the tunnel. I was doing okay with baseline pain for a while, and then I stopped the tramadol for an experiment and I feel like poo poo again. But I know they won't keep me on the tramadol forever and I'm sick of hearing "opiates are bad for chronic pain". No loving poo poo. I've heard the speech a hundred times. I know the mechanisms by heart now. I have done the goddamn research because most of my doctors wouldn't. Someone at a pharmaceutical company needs to make a fibro med that won't make you gain 60 lbs and hate yourself. cat_herder fucked around with this message at 07:58 on Jul 7, 2014 |
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Jul 7, 2014 07:52
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Arsenic Lupin posted:I'm guessing you've already tried Lyrica, then. (I take Lyrica. It hasn't hurt the depression, but boy howdy does it cause weight gain.) Have you tried any of the triptan meds for migraine? In my experience they work better than anything over-the-counter. Both of these meds cost large amounts of money, of course. Yeah. Lyrica didn't seem to do anything except make me gain a lot of weight. I'm still trying to figure out how to lose it when I can't exercise very well. Gabapentin made me brain-foggy, but I might give it another try, since Low Carb Bread said it's supposed to be effective at higher than the starting dose. I won't be able to go back to handling people's medication if I'm brain-foggy, but maybe I can get into something else someday. Amitriptyline didn't do anything for the pain, but in conjunction with the Effexor, it was great for my depression. The only thing that's done much was tramadol, and that only took care of baseline pain, not the flare-ups (I could be fine sitting on the couch or puttering around the house, but 100 yards from my house walking somewhere, and I'd get leg pain again). I seem to be allergic to Imitrex. A doctor tried me on Relpax once, which worked pretty well, but at 6 tablets being considered a 30 day supply, it wasn't feasible. Certain types of light trigger my migraines, namely late afternoon sunlight when it's filtering through trees and buildings, and I'm frequently out of the house at this time, and especially in the winter I can get several migraines a week. You know how you feel sick after driving along a road where the sun is shining through the trees? It's like that, but an insta-migraine. It's apparently well-documented in France, according to my neurologist. Thank you. I feel bad constantly word-dumping. cat_herder fucked around with this message at 19:45 on Jul 7, 2014 |
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Jul 7, 2014 19:43
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Arsenic Lupin posted:The great thing about the PT (again if you can afford it) is that s/he meets you where you are, not where you ought to be. I told mine that, no, fifteen minutes of walking really did make me sick, and right now I'm doing large-muscle (thigh/buttock/core) exercises with breaks to breathe and rest. If your doctor approves it, and if you can afford it, a qualified PT may be able to help you find some way to move that doesn't make the fibro worse. I went to "PT" at the teaching hospital I usually go to, and the lady just... you know those extremely basic sitting exercises that some people do at their computers? The whole stretching your neck, sticking your tongue out stuff? That's all she really had me do. She gave me a couple of extremely simple leg exercises, but I think she was under the impression that outside of appointments I'm totally bedridden or something, which really isn't the case; I do as much housework as I physically can, like I said I walk and bus everywhere, and I'm also frequently helping my sick husband around the house. But, I did find that rehab hospital with pool therapy, so I'm probably gonna ask my PCP if I can get a referral to them now that I'm on Medicare. Araenna posted:I just got a gastric bypass, in part because of Lyrica weight. gently caress that med so hard. It put me over from fat to obese, where any exercise just hurt too drat much. Cymbalta works for me, though. No real weight gain, and it helps my depression. If you miss a pill though, or have to go off it, the withdrawals are terrible. I'm hoping I can go off it once I lose weight, just so I don't have to worry about taking it late and getting a migraine. Yeah, my BMI says I'm obese, though it's mostly distributed everywhere. I'm a recovering anorexic and already gained a lot of weight on mirtazapine, and the Lyrica was just awful. Combo Plaquenil and Ritalin have at least kept me from inhaling everything in the house, but no weight is coming off. Idk if I'd be a candidate for gastric bypass  . Gonna ask about Belviq or any other weight-loss med, though, and see if that + PT + Plaquenil can do it. I know carrying extra weight isn't doing me any favors.Good luck losing weight though, Araenna! And noooo Arsenic Lupin, you totally aren't alone. /sadbrofist
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Jul 9, 2014 00:07
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