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Locker Room Zubaz posted:I have a question: What do you guys do when your pain is a 10 and you can't get it under control? As I've said before, my doctor gives me the time old prescription of "if it hurts, stop doing it" for breakthrough pain. Which means on a bad day I don't get out of bed with all the lights off and as quiet as possible because when my body goes lovely I get really might/sound/scent sensitive, and weep pathetically if the cat tries so much as to lay next to me or shakes the bed.  Without a support network, I don't know how I wouldn't have killed myself by now. Thankfully my husband is very patient and understanding and knows when it:s beat to leave me alone, and when it's best to bring me a beer and a morphiene.
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Jun 12, 2014 05:12
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| # ? Apr 23, 2024 22:59 |
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Reading these posts makes me sad because I empathise with everyone so much. I've had lovely back pain on and off since I was 13 and it's so god drat hard to be taken seriously. For ages they didn't find anything and so, for the last year my rheumatologist has been bombarding me with enbrel thinking maybe psoriatic arthritis/ankylosing spondylitis. But I'm not convinced. So I saw a neuro recently who found a mild bulging disc and desiccation at L5, and did a nerve study to confirm the nerve is pissed. Now we're doing a myelogram to check for anything the MRI missed. It feels good to actually be taken seriously (my rheum did too but I think he was kinda at a loss and enbrel was our last ditch effort. I still can't figure out if it helps or is a really toxic dangerous expensive placebo...) I relate to the feelings of despair and near suicide on my worst days. Not actively doing something but more, I will just take as many painkillers and muscle relaxants until the pain goes or I fall asleep and if I don't wake up...welp. My husband has such a hard time understanding. He's such a fit active healthy guy and chronic pain is obviously a mystery to him. He hates me taking pain killers and muscle relaxants. But then expects me to go on a bike ride after a 12 hour shift! He's been better lately though. So, hugs to all...it's always good to know we're not alone.
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Jun 13, 2014 04:30
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Miranda posted:Reading these posts makes me sad because I empathise with everyone so much. I've had lovely back pain on and off since I was 13 and it's so god drat hard to be taken seriously. For ages they didn't find anything and so, for the last year my rheumatologist has been bombarding me with enbrel thinking maybe psoriatic arthritis/ankylosing spondylitis. But I'm not convinced. So I saw a neuro recently who found a mild bulging disc and desiccation at L5, and did a nerve study to confirm the nerve is pissed. Now we're doing a myelogram to check for anything the MRI missed. It feels good to actually be taken seriously (my rheum did too but I think he was kinda at a loss and enbrel was our last ditch effort. I still can't figure out if it helps or is a really toxic dangerous expensive placebo...) Nice one, Hang in there. Enbrel worked for me from the get go. It enabled me to do a bike ride after a 12 hour shift and shrug it off the next day. So if it is not working for you then I suppose do not take it. It took about 3 to 4 months to get the full effect and I have not looked back in about 3 years now. On a side not only once they finally found a fused joint did I take them seriously. But it is hard I was not taken seriously for about 10 years. I really thought it was me in the end , I thought I must be delusional and making it all up.
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Jun 13, 2014 13:08
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brakanjan posted:For 11 out of 10 pain I avoid walking near railway tracks. But seriously for 10 out of 10. It is just me time and bear through it. Do something do everything that helps. I play games or scream or curl up in a ball and feel sorry for myself. My pain is not in my head but my whole body so I try to separate myself from it - er meditatively. Painkillers or Drugs work sometimes but they do not really get me through. Have you ever tried LSD for migraines, I am sure I read an article about that but I will need to dust off some old magazines to find it. But yeah when that super pain comes I have learnt not to fight it just to be a reed in the wind. I've tried LSD for the pain and shrooms neither did anything besides make me start tripping while also feeling like dying, needless to say it was unpleasant. I hate "losing" days to pain and I hate it even more when it is a bunch of days in a row, but I guess that's the way it's gonna be for a while. I just saw my neuro and he talked about getting me into a clinical trial so now I at least have a sliver of hope. Anyone around here actually been cured/fixed? How hard was it to get back into the real world?
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Jun 13, 2014 19:06
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Locker Room Zubaz posted:I've tried LSD for the pain and shrooms neither did anything besides make me start tripping while also feeling like dying, needless to say it was unpleasant. What kind of clinical trail. I been kind of fixed, I responded well to the meds, was not so much getting back to the real world more I stopped and wondered what happened to the last 10years of my life as I had changed everything to accommodate the pain. Now I am renewing old friendships . Getting used to the idea of doing things normally. I took me a long time to even try something that would normally have triggered my pain. I did not believe for a year that it was working I thought I was just getting lucky lol. Other problems now crop up. You take so much time off because of pain that other normal problems I should have sorted years ago took a back seat. I was depressed for a while not knowing what to do either as I was not fit or healthy enough to even go do the things I used to. But end of the day all those other worries are nothing compared to the pain.
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Jun 13, 2014 20:17
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I have chronic migraines so severe that I'm disabled (but not covered by work disability insurance, thanks so much). Years ago, when the migraines weren't so bad, I learned to do self-hypnosis to control the pain. It turned out to be useless then because as soon as I broke out of the hypnotic trance the pain came back. Down the road, when the migraines became horrible, I discovered that, while I lay in the dark room with the pretty flashing lights and the hypersensitivity, putting myself in the trance let me copebetter. It's especially useful while waiting for the heavy drugs to kick in. So. Working pain meds are better. But if you can't find meds that work, think about trying self-hypnosis. My doctor taught me to do it in a couple of sessions. For me, it doesn't disappear the pain, but it drops it down a point or two.
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Jun 27, 2014 17:21
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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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meteloides posted:
Meds questions aside, chronic pain sucks, and by everything I've heard fibromyalgia sucks double because of the exhaustion. I'm sorry.
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Jul 7, 2014 19:07
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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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If lower doses of Gabapentin made you brain-foggy, don't expect higher doses to not do that. High doses do nothing but knock me the hell out, and make me feel drunk/dizzy/off-balance. Does help the nerve pain when my back is killing me, but the best thing about it is it knocks me out to the point where i can get a couple of hours of sleep no matter how much pain I'm in. Chronic pain sucks. I've been dealing with it with a knee that every ortho I go to gives me a new reason for why the hell it hurts so bad. (I've gotten everything from arthritis to chondromalacia patella to "no drat clue".) X-rays are normal, MRIs show no severe cartilige/meniscus problems, but it hurts like a son of a bitch on a regular basis. Best anyone came up with is I walk super splay-footed, and that it's caused my knee to go off track so the kneecap rides on bone instead of cartilige. And now my back is in on it too, with achy lower back stuff that's easy to deal with, but horrible upper back pain that has me unable to sit still. Opiates help, but more in the "numb you out so that you don't feel poo poo about poo poo" way, which is not a long-term solution for chronic pain. Gabapentin helps, but like I said, the best thing about it is 1600-2400mg knock me out cold for a few hours. I went to see a chiro today just because he's a buddy of my bosses and it was free, and outside of making me go snap crackle and pop a bunch it did absolutely nothing. (I mean, I know the SA stance on chiropracty, but hey, i couldn't sit still, I figured it wouldn't hurt to try it for y'know, free.) I've been doing pain management with a psych that's been a lot of biofeedback stuff, about how to relax and poo poo when the pain is really bad, and it's helped a little bit, but when the pain is bad, the pain is bad, and ERs here are so reluctant to give you anything for fear of enabling drug-seekers that people in legit pain get skipped over, especially if you're young. e: chiro did more harm then good. ER thinks I have a herniated/bulging disc, but can't confirm that without imaging, and I fall into the loophole of "state refused medicaid expansion, but I don't make enough for subsidies" so I'm uninsured, so they didn't want to do imaging and rack up more costs on me. Their best guess is I have a herniated disc or two and when i went to the chiro he managed to twist me just right to set one of the discs down on my ulnar nerve, so now the entire outside of my right arm is numb/tingly. They said it should go away, but referred me to the walk-in ortho clinic across the way since my ortho no longer practices, and see if they can do something to help. Dr Jankenstein fucked around with this message at 14:54 on Jul 8, 2014 |
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Jul 7, 2014 21:14
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meteloides posted: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. I finally went to my migraine specialist and said, "Look, you want me to exercise, but I've been inactive so long because of the migraines that I exhaust myself when I try." He gave me a prescription for physical therapy; now I'm seeing a PT twice a week to create an exercise program that works with my disability. 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. quote: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. It's really common for flickers to trigger migraines for people: light through trees, light through Venetian blinds, repeated jump-cuts in videos or movies, fluorescent lights, even certain black-and-white patterns. Who knows what's going on.Thank you. I feel bad constantly word-dumping. [quote] Actually, I'm relieved every time I remember that it's not just me, and that I'm not just imagining it all. There's no way to "prove" a migraine; it's all based on personal testimony, which means that it's really easy for your insurance company to blow it off.
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Jul 7, 2014 22:29
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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.
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Jul 8, 2014 20:25
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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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