I have never met anyone else who has it, though it is apparently a pretty popular disease. People often ask me what it is and don't take my disease seriously because they haven't heard much about it. Any fibro-sufferers on Subeta that could offer me some advice?

So, I was diagnosed with Fibromyalgia in October by my physician after nearly 3 years of chronic, agonizing back and neck pain. I have also developed TMJ because of it. I see a chiropractor and a physical therapist once a month but I am still constantly in pain. As a treatment, they put me on cymbalta to relax my muscles and to help stabilize my mood. It worked in the beginning and it was a massive difference at first. But now my body is starting to ache more, I'm getting migraines again, and my muscle strength is definitely weakening. I have to crack my jaw, neck and back multiple times a day just to be able to do everyday tasks with less discomfort. I seriously don't know if anything will work considering how constantly stressed out I am and having to work two jobs. I have been so emotionally and physically drained lately I feel like I need to open up and talk about it.

I just posted something about it as well. Except from a different view. My mom has it.

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Ah, I didn't see your post! What does your mum do for treatment? I've even tried cortisone shots which hurt like nothing I've ever felt before (the anesthesiologist told me I probably had a bad reaction to them) , but I can't seem to find anything that really works.

I personally don't have it but my mom has had it for a long time. No one understands her pain and I sort of do - but I guess no one will understand unless they get it themselves. However, it seems like a thing no one should have to deal with.

My mom only takes medication for it, I'm not sure what else there is for her to try.

, Any idea what the medication is? I feel like Cymbalta worked at first but now the positives don't seem to be worth it's side-effects.

I'm not sure, but I know that it's not Cymbalta. I can ask her what medication she uses for it.

, I would appreciate it very much c: Thank you. It's not a fun condition to have and it really makes just every day things much more difficult/painful then they should be.

I have Lyme disease, but from what I know fibro and lyme share a lot of common symptoms. I was working 2 (at one point 3) jobs with the Lyme last year and just powered through the pain until it got worse, and this month my health has already declined past the point of me being able to take care of my own apartment and pets, let alone work. :/ So I can empathize even if it's not exactly the same thing.

I know a lot of people who received diagnoses of fibro originally and then later got one for lyme, though. I think the chronic, widespread pain is similar, I dont have TMJ but I do have back pain and meningitis-like neck pain and stiffness, I've developed arthritis, cognitive /memory issues, stomach issues, headaches almost every day, twitching, all kinds of awful stuff. And I'm 22 so it's like oh cool I get to be old before anyone else I know, that's fine, I didn't like, need to finish going to college, or working, or anything like that, right? :|

, I have actually already been tested for Lyme. They can't diagnose my symptoms as anything else so they lumped it in with Fibromyalgia. I have the stomach issues & migraines too as well as muscle weakness. I dropped 13 products yesterday at work. I counted. ): I'm 20, so I definitely know how you feel. Doctors and people in general tend to think we can't have any real issues because we are so young! Not to mention for the most part (besides looking run down & the bags under my eyes) I look healthy. People don't realize that just because you can't SEE my illness doesn't mean it's not there. My bosses don't ever seem to take it seriously and even though I've told them about my issues they just disregard it. I had one manager flat-out say to me, "You don't know pain yet. Fibromyalgia doesn't exist." I just laughed because what else can I do? /I/ know my pain is real, but I can't seem to express it to anyone else.

barfing forever at your manager what the hell. I hate that "but you dont look sick!" attitude. Shut up oh my god

interesting factoid, my tests for lyme actually came back negative and they often do. if you've had it for a while, the bacteria (which is corkscrew shaped) digs into your tissues. they also tend to only test for 1 or 2 of the proteins that relate to antibodies, when in reality there are like 14 that should be tested for. it's very tricky to catch.

not saying I think you have lyme, but i've heard this story sooo many times from people who couldnt get a solid diagnosis of anything else and wound up with fibro because the doctors were like "welp, whatever." im not even entirely convinced i have lyme precisely because its so hard to catch, but I do live in a high-risk area and have dozens upon dozens of it's symptoms, so I just go with it. i talk to people online who have had it for 10, 20, 30 years. the CDC insists it's easy to cure but its NOT, at all, and if you get 10 days of an oral antibiotic and still have symptoms they say you have some lyme "syndrome" that isnt really lyme but its you thinking that you still have lyme. its a mess, honestly, i hate it.

theyre both just such new-ish diagnoses. you couldnt even report lyme until the late 80's, not even thirty years ago. fibromiyalgia as a concept has actually existed longer than Lyme disease has been known, I think, and yet doctors tend to treat them like they already know everything there is to know and that's that. frankly I just dont feel like theres enough research on either.

but let me tell you what, other people trying to tell you what you do or don't feel, or what's a "real" disease and what isnt, are the kind of people that should be launched into space. seriously, fuck them. that is so incredibly hurtful and obnoxious i cant even deal with it. the age is frustrating too. ive been told if i want to apply for disability my age is going to be "a problem" which really just makes me mad. its not enough of a problem that I'm this young AND I cant work or go to school? are you kidding me? ughhh

Sorry for not responding sooner, I ended up busy. :c Yeah I asked my mom and she says that she takes normal painkillers. None of the medications that's on television.

, Thanks for the response (: , At my next physical I'll have to mention it. I tested 'half positive' for celiac disease as well (I guess there's two parts you can be positive for and I was only positive for 1) and I tried going gluten free for 3 months and it made no difference in my pain. You may want to consider it if you haven't been tested already. It definitely improved my IBS but diarrhea & cramps a couple times a week is worth being able to eat what I want personally lol. Disability is something I have looked into as well. I'm finding it harder and harder to do every day tasks, let alone work 2 jobs. Literally just brushing my hair hurts my back and neck. Unfortunately, some people are always going to sneer if you're receiving aid, and our age definitely makes it much harder to get. I've even looked into a medical cannabis card but I know my doctor would never prescribe it, even if it would help, simply because I am so young. Over the past 3 years the only thing that I have been prescribed that helped was a one time script for percocet, and I had to beg my doctor for something to ease the pain. Doctors should just give you what you need; age shouldn't even be a consideration when writing scripts unless it effects a medication directly.

That's so funny that we were talking about this, I wound up back in the doctor's office for a check-up on my stomach the other day, and she drew more blood and wanted to test me for celiac. So I'm gonna find out in a few days I suppose!

Omg the hair brushing thing is something I TOTALLY get. I always feel so weak because my arms get tired trying to style my hair or brush it, but it's definitely a thing I also experience. Where do you live, just out of curiosity? I'm actually about to move to Colorado and part of the reason I'm about it is definitely for the weed, NOTHING has helped me with the pain as much as smoking has. It's like taking a temporary break from having a body and it's just lovely, and it helps my other symptoms too insofar as anxiety and depression. It's not for everybody, that's to be sure, but it's going to be helpful to live in a state where it's legal both recreationally and medically. I know a dude here who got arrested for smoking alone in his own apartment and it's just so sad because it seriously doesn't hurt anyone, and it's such an asset to people like you and me who have chronic illnesses and chronic pain, I just don't understand why it's not legal in more places.

Disability is something causing me a lot of stress. I think even if I can make a good case for myself, I'll have to wait the full 2 years, and in the meantime I have no choice but to keep working because how else will I have income and support myself? but at the same time, working is going to make my health worse from the increased stress, and will be harder and harder. It's such a catch-22. I hate it. Our society really isn't very accommodating in the least bit. I've already had 15 jobs in the last 4 years because it's so hard for me to stay at one when I know it's hurting me. Age, income, none of that should matter. And it's SO EXPENSIVE to get care here, its infuriating to me... my doc tried to give me a medication that would coat my stomach so I dont experience pain when I eat, it's got a $99 co pay! wth for!! It doesnt even barely do anything!! I bet you can get it for $5 in Canada, ugh it makes me so mad.

, Yeah, I hear you. I just am so sick of being in pain constantly. I feel like they won't give you a medical card unless you have horrible stage 4 cancer or something. It is a medicine that should be more readily available to people with chronic conditions. I saw this article on a little girl who had like 300 seizures a day. They gave her medicinal cannabis and it made the amount of seizures go down drastically...She can actually function again. Fortunately, I think we will be seeing changes in the near future. (:

Don't get me started on the co-pays. Just my cymbalta is $55...Chiropractor is $30, I've even stopped seeing my psychologist because hers is $20. MASS Health dropped me in December, and even though I only I made $10,000 this year for some reason the government thinks I can afford to pay them all on my own. It's unbelievable, because I am working as much as I can and I still only made like $300 dollars a week. And that goes to car insurance or my car payment. Hopefully I'll be done paying off that POS soon. :|

I read about that little girl! That was such an amazing story. Yeah, it's really just so much more than for stoners. I hope we see changes though, that would be awesome.

Ugh that's terrible. My uncle has ulcers and struggles with mental illness and his medications cost $4,000 a month. It's absurd...

I was diagnosed with fibromyalgia nearly 8 years ago when I was 16. I was unable to go to school most days because I didn't have the physical or mental energy to get out of bed so I ended up in a home bound program through my school for the last 2 years of high school and ended up attempting college but ultimately dropping out because it wasn't worth the suffering. Three of the huge things for me were migraines, short term memory loss, and my inability to sleep for longer than an hour and a half at a time.

The doctor I had (well, have. He is still in the picture somewhat.) was really against putting me on anti-depressants because I have a bad family history with them, so I never tried Cymbalta or the like. I have some prescribed pain killers, but I very, very rarely take them (mostly because of the family history thing yeahh). Chiropractors or any type of physical therapy didn't help whatsoever. In fact, I got in a car accident at ~17 and the chiropractor made my pain significantly worse.

Saying that, I'm currently in a remission stage where I'm ultimately okay for the most part. The pain is minor if any and I have no issues functioning. I still have bad days where I'm overall drained of energy but I'm okay. For right now, at least. I still get migraines and have issues staying asleep at night, but yeah, my symptoms have gotten significantly better in the last ~8 or so months.

I actually do have Stage 4 cancer and I've had it for over 10 years now, so my case is definitely different, but I've certainly dealt with chronic pain issues too. I've also met a handful of fibro patients since the children's hospital I went to had the onco and fibro clinics on the same floor. I know different things help different people and no cases are really exactly alike, but something I know that's helped me and a fibro patient a lot when even morphine and codeine weren't helping is acupuncture. I was suffering from back spasms and severe back pain for a while that nothing seemed to be able to touch, and I had had pain before and had a friend recommend acupuncture but I was always too stubborn to go. I didn't think it would help and the whole idea just seemed weird. But now the pain was so bad and no one could help in any other way that I figured it definitely couldn't HURT me any more than the pain I was already having! I practically had to be carried in and after an hour, I walked out of there myself without pain. I go there for all kinds of things now, 8 years later. I know it's not for everyone, but I figured I'd share, just in case you were like me and were desperate enough to try anything.

, I live in Massachusetts by the way. (: So we are pretty liberal. I'm sure if i found the right doctor I could get a card but that seems like so much time and effort... :l Just legalize it already. sheesh.

, It's comforting to hear that it can have a remission. I honestly think mine might be going into one. I still ache like crazy and my body is constantly tired. I can't lift anything or do any heavy exercise without feeling terribly sore the next day either, but I think I'm in less pain lately. Maybe the Cymbalta is kicking in again, or maybe I'm just used to the pain now. Heh. I have heard that stress effects the severity of Fibromyalgia, and up until about a week ago I have been in a 2 month period of distress. Maybe because I'm not as stressed out I'm starting to feel better. (:

, Oddly enough my psychologist suggested I try that too. Needles make me a little queasy but I'm sure if it relieved the pain enough it would be worth it. I just remember my cortisone shots and how sick I felt during/after. I could feel the medicine sinking into my muscle and the pain was just indescribable. I honestly think I might look into it though, as I have heard very positive things about it. What does it feel like? I have a VERY high pain tolerance (I work with Green Wing Macaws that have a beak which could nearly sever your fingers) but those shots killed me. My psych told me they used really thin needles and she could barely use her knee after some injury and the only thing that worked was Acupuncture. Do you know how it works on a physiological level? d: I wonder why it makes you feel better.

That was honestly my worry too, and that felt like the stupidest thing ever to me because I have a crazy-high pain tolerance too, from years of being treated for health stuff, and I didn't want to try it because I was worried about the pain! So, good news straight up: I barely even feel any of it. "Needle" feels like the worst word for it possible, they look like stiff hairs, usually about an inch long. My acupuncturist has been doing this her whole life and her daughter also works as a practitioner, so they are very experienced, and that probably has to do with why it's so entirely painless and practically even sensation-less, but at worst, I'll feel a tiny prick like a sharp branch suddenly snagged and poked me or something. What I didn't know is that they'll place them pretty much anywhere on your body - they know where it all relates but I don't! For instance, when I had the back pain, I had needles placed in my legs and arms. I've since felt more comfortable and allowed her to place them in what seems like weirder places - my toes, my fingers, my forehead, even my ear! But I don't like my stomach being touched so I asked her not to place any there. She had wanted to, but because I told her I'd rather not, she was cool with that. So a good acupuncturist will listen to you and won't do anything you're not comfortable with! I really don't know how it works on a physiological level, I went in completely blind about it and was so skeptical about it but now it's helped so often with so many crazy things that I'd really love to learn more! All I know is whatever comes up when you Google it. lol I still don't know if I really believe in the scientific theories behind it or if I just think it's a particularly effective placebo effect, but to be honest I don't really care because it's been helping! haha

Wishing you luck in whatever you do!

honestly, i believe stress impacts it sososo much. i kind of had one thing after another happen from ages 16-22 and i was really, really depressed for a really long time. i've changed the way i see and do things and over the last year is when i've ultimately started feeling better. i totally understand the whole getting used to the pain type thing too. whenever someone mentions pain to me i usually realize oh hey yeah my back is hurting too since i really dont even realize it unless its up there on the pain scale. i've also heard of a lot of people having success with acupuncture. my dad and my uncle both swear by it (they have injuries due to work though, so different situation), its definitely something to look into.

although! one thing i will mention is when i come down with a cold/allergies/anything that involves my immune system taking a crap, it hits me like a ton of bricks. last weekend a coworker got me sick and i literally could not physically get of bed because the pain in my neck/back was so bad.