so much more pain

jasper_b

Member
Joined
Jun 1, 2022
Messages
22
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 🤷‍♀️
 
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