so much more pain

jasper_b

Member
Joined
Jun 1, 2022
Messages
24
Reason
DX FIBRO
Diagnosis
01/2018
Country
US
my symptoms have been getting so much worse over the last few months. lately, every other day or so I wake up in enough pain to cry. being in the same position for five or more minutes has become torturous, i have to move and shift constantly, and often i won't even feel how bad it's gotten until i move, and then it hits all at once. at least I have a referral to pain management soon.

I had to quit my job a week ago. I have a disability hearing in july, but god knows i'm not holding my breath.

and I'm so tired of no one having answers. they just keep testing me for things that aren't fibromyalgia, and they keep coming up with nothing but fibromyalgia. and it's good that they're trying to see if it's anything else, I know how often fibromyalgia is bundled with other things for people, or it's used as a "shut up and go away" diagnosis, but... it really just seems like I have fibromyalgia. and i wish it was possible to treat that. or that anyone trying to treat it in me would even keep up with the news about it. I brought up the autoimmune link and my rheumatologist just fully shut me down, saying I was wrong. nevermind that this study is three years old.

has anyone here actually had benefits from any of the medications "approved for use" with fibromyalgia? personally i've been on lyrica, gabapentin, cymbalta, and savella, and I've never really noticed any differences. what really gets my goat is that the only abnormal biomarkers i ever have are always signs of inflammation, but of course there's no anti-inflammatory medications approved for use. at least I have ibuprofen. guess I can just start taking ibuprofen all the time. it does help quite a bit. wonder if i could get a prescription for it anyway... i'm living in poverty, so getting medicaid to cover it would go a long way.

i really, really wish they'd let me try other classes of medication. studies keep showing fibromyalgia has autoimmune factors... but the medical industry is so afraid of the concept of people who just want medication or treatment for 'no reason', as if there's ever no reason for something like that. and like, if my doctors aren't effectively treating me, why can't i be allowed to try to figure something out myself? :(

it also seems like... any time I hear or see more research into the mechanics and effects of long COVID, it reminds me very much of fibromyalgia. and while it's really good they're finding out so much about it so quick, I wish fibromyalgia research wasn't always at a snail's pace in comparison... it really just... seems very similar to me. they're both linked to onset through trauma (a severe infection being a kind of trauma); they both manifest with brain fog, chronic pain, depression/anxiety, trouble sleeping, and GI symptoms; they both seem to have aspects of inflammatory diseases and autoimmune disorders. if there are concrete connections beyond my base level observations, I hope someone sees that. maybe developing treatments for long covid will help with developing effective treatments for fibro. (or maybe those class of medications will also not be approved for use with fibro, and nothing will change.)

i've been trying to do more physical therapy exercises and yoga lately, and it helps a bit... it doesnt really seem like it does anything to prevent the onset of pain, but it does help treat it. i would go ask for physical therapy but my insurance only covers it for three months out of the year and i feel like it would just suck to fall off of that.
 
Hi jasper
I completely understand your frustrations. I found some relief with physical therapy. I have Medicare (California’s Medicaid) as well. The way it was explained to me through the front office staff at the physical therapy center is that Medicare allows a certain number of physical therapy hours per year. Like you, I didn’t want to have something that was a benefit suddenly be taken away from me. To make it through the year, we spaced out my visits. Instead of going two or three times a week, I go once. At the end of each session, I’m given at home exercises and I do those each day, often times multiple times a day. I like feeling that I’m moving and stretching with a purpose.
I think physical therapy can benefit anyone. If you decide to try it, I’d suggest letting your physical therapist know your plan (ie to have spanned sessions to last the whole year) right from the start so the two of you can tackle the goal as a team.
Just my two cents. I hope this helps. Oh also Medicare covers acupuncture, I assume Medicaid does as well. Maybe look into that too 🤷‍♀️
 
Jasper, in reading your post I found a few things very interesting. I’ve been diagnosed with fibromyalgia by two physicians and yet all my bloodwork shows zero inflammation and no autoimmune markers. My pain is much worse when I move and if I lay on my back without movement I’d never know there was anything wrong. Physical therapy is extremely painful for days afterward. We seem to have the same illness with completely opposite symptoms. Our one similarity seems to be long Covid.
 
Jasper, in reading your post I found a few things very interesting. I’ve been diagnosed with fibromyalgia by two physicians and yet all my bloodwork shows zero inflammation and no autoimmune markers. My pain is much worse when I move and if I lay on my back without movement I’d never know there was anything wrong. Physical therapy is extremely painful for days afterward. We seem to have the same illness with completely opposite symptoms. Our one similarity seems to be long Covid.
Just so you know, Jasper has not been seen on the forum for 6 months, so probably won't get this message.
 
Jasper, in reading your post I found a few things very interesting. I’ve been diagnosed with fibromyalgia by two physicians and yet all my bloodwork shows zero inflammation and no autoimmune markers. My pain is much worse when I move and if I lay on my back without movement I’d never know there was anything wrong. Physical therapy is extremely painful for days afterward. We seem to have the same illness with completely opposite symptoms. Our one similarity seems to be long Covid.
man, thats wild. im always frustrated with how little information we have... there's always some research going on and making progress but it feels like the medical industry doesnt bother to keep up with that, and any source on fibromyalgia will just talk about the simplest and most surface level symptoms, and not how differently it can affect everyone.
Just so you know, Jasper has not been seen on the forum for 6 months, so probably won't get this message.
very fair but i still get emails for replies!
 
Imagine how scary it was before modern medicine, you would be scared of a common fall cold and prepare for a funeral
Actually, although of course I wasn't there, I think it was the opposite. People were a lot less likely to go to a doctor and they just dealt with whatever came along, using whatever they had at hand. People didn't get scared of being sick because being ill was accepted as what it is --- a natural part of life.

I think more people are scared of getting ill these days than they were 100 years ago or more. No one worried about disinfecting everything back then.
 
@oliv988 @sunkacola i feel like probably less scared, more resigned. a lot of daily effort going into taking whatever comes your way and rationalizing it as the machinations of the universe.

i feel like its probably a little different now because (at least in my experiences in the us) it feels like we dont have much community anymore - and more reliance on the general economy. if you get sick, it often means taking care of yourself, worrying about ways to keep buying food, worrying about ways to pay for the doctor, and also maybe getting your loved ones sick so they have to go through the same thing. people also expect to live longer and see more generations after them.

it also feels like theres this general structural attitude of... getting sick is a personal failing, something you couldve tried harder to avoid. theres always been stigma to illness but even with something like a cold or flu now... you have to justify why youre claiming youre sick and why you wont just work through it. why you didnt somehow avoid it with vitamin c supplements or something. its like perfect attendance rewards in school... which always felt super unfair to me! they get to be perfectly healthy And have an ice cream party. arent sick kids dealing with enough

we also know a lot more about illnesses and how theyre caused and what they do... though definitely not all of them! people ask me what fibromyalgia Is and i just have to say "theyre not sure yet". having to figure out how it works for Me, what it does to my body, and couch all my language accordingly
 
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Hi
All I can say is I know how you feel and just talking with folks who understand is comforting as I wish I had a medicine or vitamin to help but I don't
Exercise, walking try to get as much sleep as you can even two hours straight is a huge thing
Keep sharing
 
Actually, although of course I wasn't there, I think it was the opposite. People were a lot less likely to go to a doctor and they just dealt with whatever came along, using whatever they had at hand. People didn't get scared of being sick because being ill was accepted as what it is --- a natural part of life.

I think more people are scared of getting ill these days than they were 100 years ago or more. No one worried about disinfecting everything back then.
You make a good point, I think you're right. They didn't fear getting Ill cause that meant the end of the road, like accepting there's no cure. Must've been thankful if they died easily in the sleep
 
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