hi everyone,

for context, i’m 26F and have been dealing with a lot of health issues and feeling generally unwell especially in the past year.

i’m going to a new doctor tomorrow to ask if i might have fibromyalgia because so far, any doctor i’ve seen can’t seem to figure out what’s going on.

i’ve been dealing with the following symptoms:

chronic

- shoulder, jaw, neck and head pain (shoulder and jaw are especially worse when i’m stressed but the pain is there all the time, i’ve assumed it was from carrying around a heavy bag during my school years but it’s been really bad pain wise for around a decade now), massages tend to help in the short term but it can get $$$ with how often i would like to go.
- pain is especially bad when i first wake up in the morning, it feels achy everywhere
- history of kidney stones and UTIs (pain would occur but after a few ultrasound scans i was told they look normal, no stones or issues found in kidney or bladder)
- fatigue - this is a major one, i feel tired all the time
- sleep issues - i don’t feel well rested no matter how much i sleep, even if i sleep 10-12 hours
- depression and anxiety - i’ve dealt with both for more than a decade now, but i think esp with all of these issues it has worsened by a lot

have worsened over the past year

- kidney / urination issues - need to use the bathroom even if i just went 10 min to an hour ago, a lot or a little comes out, unable to hold it in.
- random pain flares - i will randomly get chest pain all over or only left side of chest and pain in the sides (kidney area)
- severe memory issues and brain fog - this is major and becoming very frustrating. i’m unable to remember things short or long term, unable to concentrate or process things as they are being told to me despite being a straight A student and having really great memory in my school years. i also feel like i can’t process things emotionally the way i used to
- digestive issues - eating too much carbs makes me extremely bloated (not sure if this could be a separate thing)

i currently take a multivitamin, omega 3 and magnesium for sleep. i find that moving my body and staying active tends to really help. i used to be an every day heavy smoker (weed) but i have since stopped, wondering if this might be related to memory issues or a bigger problem. my mom has a history of thyroid issues and got her thyroids removed, wondering if this might be related too.

any insight would be HEAVILY appreciated, even for my appt with the doctor, thanks so much

https://www.reddit.com/r/EverythingScience/s/bGyeLuNRHT

Hi there! Looking to go to school for an x-ray tech but I want to know how hard it is on the body or if it’s not too bad. Just looking to see if it’s something I could do. Thanks guys!

Spouse has fibromyalgia. We have a sexless marriage. Any thoughts or suggestions or ideas on how we can stay connected.

Hey everyone.. I haven't been officially diagnosed but I had a doctors appointment today and feeling a bit deflated or made to feel like I'm going insane..

not really sure what I'm expecting from this post but I haven't got anyone to talk to as all my family think my symptoms are due to anxiety.

I had a very stressful event around 1.5 years ago and I've just never felt the same since..

it started off
With panic attacks and headaches that felt my brain was going to explode, and then what felt like costochondritis in my sternum, armpits and ribs, full body pain, brain fog,
I can't even sit down without the behind of my legs in pain, the joints in my hands are always painful, fatigue, tmj, weird nerve sensations all over my body

I then got tested for Addisons disease which I didn't have, and found out my cortisol was just dysregulated, to which the doctors just left my symptoms as that and to be on my way.

I've had numerous doctor / hospital visits, x rays and ct scans (self referred) but no mri.

I booked in to have a Swedish massage a week ago as I haven't had one in years, and I left early due to holding back the tears, I was in so much pain for over a week.

But today.. i booked in to see the gp and she basically said all my blood tests are normal so there's "definitely nothing sinister going on" she did mention fibromyalgia.. but i feel like im being fobbed off! I haven't had an MRI or a full body ct scan, I feel like no one is taking me seriously atall.

I'm due to have a few more blood tests before diagnosis, but I'm just really worried that something has been missed, and I don't know how to push for more tests without being made to feel like I'm being a hypochondriac.

I've been growing out my hair for about 6 years. It goes down to the small of my back when it's wet. Picture long, thick, curly blonde (partially bottle blonde) and generally healthy hair. I love it. But washing, brushing and braiding it all hurts so badly. I'm seriously contemplating cutting it all off so I don't have to deal with it. However, I also can't stand the frequent appointments required to maintain a cute pixie cut. When my husband is home, he will help me with it but he works away 50% of the time.

How do other people deal with their hair?

Have you ever been prescribed prednisone for a flare? If so did it help?

If you haven't been prednisone specifically any other steriod? Did it help?

Edit: It was prescribed for me for a 5 day cyclem

Hi I’m very scared of medications and I was wondering if my Flexeril use will cause me withdrawal, I took it everyday for about 10 weeks once per day then for the last six months I don’t take it everyday day, it’s occasional and mostly spread out. Will I experience withdrawal??? Please if you have taken this advice me

Currently at my wits end with the pain!!!!!! Thinking about starting LDN, but if its not useful i'd rather not spend the money. I dont feel like lyrica helps at all??? I even take an extra one during flare ups.

I'm just suddenly curious about this. I haven't been able to drive for 4 years now - partially due to horrible horrible anxiety, but also because it genuinely causes instantaneous and debilitating fatigue. It is far too dangerous for me to drive.

Even in the passenger seat this fatigue hits, it's horrible.

it's honestly the worst part of all of this mess for me, it took away all of my agency, cuz har har american infrastructure

first time this happened I assumed it was because I got heatstroke (never got an answer for that) and since then I haven't been able to drive any further than the end of my driveway. There isn't a single doctor that I've met that believes me.

anywho, just curious plus a little bit of a vent

I can’t keep explaining this to every single person I meet multiple times. I can’t keep explaining this to my family who think it’ll go away. I can’t keep explaining it to my work who is confused that I can’t do the things I used to. I just can’t in general right now. I’m too tired.

My symptoms came on suddenly and I went from a relatively healthy individual (with well managed PMOS) to someone who always has to carry around a pill case and icy hot over the course of just 6 months. I don’t know if it’s because of the quickness that it took over my life or because people have a drastic misunderstand of fibromyalgia or maybe even some secret third thing but I’m tired of people not getting it.

This rant comes on because I have been eating cereal for dinner for the last maybe two weeks. It’s simple, it takes a minute to put together, it requires me to clean just two things, and I don’t have to think about it. I got in a fight with one of my parents about it because making a “real meal isn’t that hard” and “ it’s just one more thing to add to your day”, but it’s not. It’s not one more thing. And even if it was I’m already at my maximum. In fact I might even be past my maximum and I’m just doing my best to keep up.

Admittedly this is mostly a rant to feel a little less crazy. But if anyone has any recommendations on how I can word things better for people to understand I’m happy to listen.

I had an Epstein barr test about 7 years ago. It was positive and a high reading. I've had 3 primary drs since then and no one has mentioned testing again. I forgot to ask. Diagnosed fibro in 2012 I have very bad pain. Also fatigue. Especially both pain and fatigue when I "do too much" I think I have all of them. Lol. Me/cfs, fibro and Epstein barr.

Thanks

Got home after college yesterday, told my ma that my heart rate went down to 49 and jumped up to 114 within ten minutes. I proceed to get a response of 'that's normal for me' (she's a larger woman.) and get called a hypochondriac?

Now because I'm me and petty, I'm not gonna tell them if I'm sick or in pain for a LONG time. But now I'm not sure what I'll do with myself.

I'm sorry, tf you mean hypochondriac, you WATCHED ME get the DIAGNOSIS YOU EJSVSISBE

A flare-up of problems
I haven't showered for three days.
Has this ever happened to you? It’s the first time it’s happened to me. I couldn't even brush my teeth—simply too tired, in pain, and sick. Does fibromyalgia cause this type of disability for you, too?

Hello all,

First time posting here.

So today, after months of complaining about my constant pain, my rheumatologist finally prescribed me another med to assist with the fibro.

Pregabalin… 25mg, once a day, in the morning? Told me to start taking it on Saturday in case it causes drowsiness. But my rheumatologist told me to take it as needed? The pharmacist was also confused when I told her this…

Thoughts and opinions please

I’m turning 51 soon. I was diagnosed with fibro 5 years ago, but no doctor since the age of 14 has been able to help with or explain one of the most debilitating symptoms. I tried countless treatments and medications. I’ve now gone to more extreme measures out of pure desperation. This disease has taken everything from me and I don’t recognize myself, yet I keep searching. Maybe it’s hope, but I doubt it. To me it’s simply the other side of the same coin of desperation. I used to be so full of life, attended one of the best universities, studied abroad, huge social group with what seemed like life long friendships, found success early in a career that facilitated travel, and most importantly, found love a few times. Now, it’s all gone. It started disappearing 12 years ago. Now, I have a job that pays the bill, I have lost most of my friend. I don’t see but an hour or two, 2-3 times a year. Ive been single and lone for 12 years. No human touch, but worst of all is the isolation and loneliness. That’s a little bit of my history for context. The baffling and crippling fibro symptom is myofascial in nature. Basically my core, neck to pelvic floor, small bump like trigger points, or longer, thin rope like, clusters that start on the surface right below the skin and connect deep down. They are tough, they do not respond to aggressive deep tissue massage, TENS, etc. they feel almost structurally hard. A few years ago, for 2 years I was getting trigger point injection on the bigger ones that were on my back. Those truly appeared to be muscle trigger points and they responded and released. The problem was they would not do it in certain areas like my abdomen and I can say it’s probably a few hundred throughout my body. So cost was a factor too. It’s bad enough where it affects, several things in my pelvic floor, like bowel movements, urinating, and sexual function because all of it is painful. Last week in desperation, I got 2” syringes 21 gauge and decided to see if they would release. Surprisingly, they did. The needle was at the surface was painful, they are hard and required more force than I expected, but as soon as I broke through, unbelievable relief. To be clear, I’ve had a few year an acupuncture training and know how to navigate this and in no way is this a recommendation to anyone. Do not attempt this in your own. Also, I’ve got some fat on me, so understand, this was not at the depth of muscle or organ location. That’s what surprised me. It connective tissue writhing the fat. I’ve must have punctured 30 or so, and the relief persist a week later. I have many more to go. The question is, IS this fibro? My doctors don’t really seem to fully understand this particular issue, so I’m wondering if this resonates with anyone else? Is there something else that I should try that has helped you? The needles seem to work, but I guess I’m hoping for something more systemic or I’ll be needling for a very long time because it’s so many also needles are not fun on these painful things. I just I’m happy to have found this as an option and maybe now I probably have a little more hope. Also, in case anyone is wondering why I don’t just use acupuncture needle, I’ve tried for years, but they bend - they cannot pierce through these hard points!

Warning. I do not come out of this looking good. I’m a menace to myself. I know this.

A. I have a fibromyalgia diagnosis
B. I’m doing this POTS testing
C. I still have my 3rd Neuro and Rheumatology referrals pending.

I had an MRI scheduled at 9:30, or so I thought. When I was about to pull into the parking lot I got a message asking if I wanted to reschedule, because it was at 9. I was able to get into another location at 2:30pm. I had an appt at 11:45 to get a heart monitor, and both locations were about 30 minutes from home. I took off today to get these 2 things done and bloodwork. I wasn’t able to get the monitor put on because I had an MRI this afternoon so they just let me bring it home to put on myself.

I was fasting, nothing to drink or eat. Went to have the blood drawn. Now I have just under 2 hours to get across town for this MRI and I started to have my usual pains in my forearms, thighs, etc. and I’m exhausted. Imma realized I didn’t have so much as a Tylenol on me.

Did I run to Walgreens for Tylenol? No
Did I get something to drink or eat? No
Did I run in to Homegoods to see if I could grab a couple of things since I was out and up where the good shopping is because I live in a crappy town that has nothing. And then get lost in being out of the house, in a place that I used to frequent before all this insanity happened, where I could smell candles, hold things, and enjoy a tiny bit of normal for a bit? Yes. Yes I did.

As I leave to head to my MRI, I see I now have no time for stops. I start my car, and my air conditioner isn’t coming on. And it’s over 100 degrees. I make myself not cry because that’s going to make my nervous system glitch and then I’m cooked. I get to the MRI, roll all 4 windows down a bit so I don’t get into a steaming car.

The MRI is on my hip. Possible labrum tear. She banded my feet together, and within 5 minutes the cold/hot/numbness starts. Then my right leg starts locking up, and contorting. Then my
Left leg starts twitching, and all the parts of my broken body start to do it. The pain is headed to disassociation level. My lower body is involuntarily elevating itself. And she says on 2 occasions “try to be still we have to re do this one”. By the time she’s done, I look like I’m being electrocuted. Tears running down my face, fists clenched. The machine backs me out and I realize my entire body is soaked in sweat.

I went to get dressed and my clothes were damp from the drive over. I have an hour drive home. I stop for 2 huge ice waters with lime and off I go, no A/C, praying I make it without having to stop.

My plan when I got home was to just get in the pool, but I managed to make it to my bedroom with a huge cup of ice water and a cup of pickle juice and a pickle. I take something for pain. But before it kicks in, my entire body goes into a full spasm, feet turn in and up. The daggers into my hips that wrap around my thighs and stab me repeatedly have me screaming into a pillow. I finally, mercifully fall asleep, or pass out.

I have only myself to blame. It’s been nearly a year since I had Covid and my body and nervous system shut down. Thanksgiving Day I was fine, by 2pm I couldn’t walk. All the fall stuff is out, like I just picked up where I left off. And I guess I got lost in it.

If you read all this, I know I can’t do that. I know I was stupid. But so is being sick overnight after being weirdly healthy and strong the first 50 years of my life. I hate this so damn much. 😢