Reason I’m asking is because I’ve found every luteal (and my PMDD Is severe) it triggers my fibro, more than ever. So the widespread pain in my hips, top arms and knees especially.
Mentally it’s a slog anyway but I think the trauma of PMDD with it being hell just brings up the pain because of what my body is holding.
i have regular fibro fatigue as my most bothering symptom, even more than the pain, that is currently manageable with meds. but i am so tired and even sleepy most of the time. i sleep ok most days, and take naps when i have days that i sleep less. but even so, sometimes i am watching tv and just fall asleep without even noticing.
i wonder if because i am about to have a big social thing my body is trying to prepare, so it makes me want to take a nap even after a full night of sleep, or because i am worried next semester i won't be able to rest as much, i am subconsciously trying to prepare.
i have always been more of a sleepy person, and used to sleep for 9-12 hours since my teens when i don't have an alarm on and on heavier days or right after them, i would take a 1-3 hour nap and it would not affect my night sleep, but even for me it's happening way too often and i would like to know if any of you feel something similar too.
So yesterday at 4pm i started having chest pains, just hurt to breathe deeply, i thought this is just normal fybro/chosto pain, s9 monitored over the next hour or 2, at 6pm i went down stairs to cook mine and my dads dinner, at which point i was also getting pain in my shoulder, numbnees in my arm and neck/jaw, so i spoke with my mum who said its nothing to worrie about, at about 7pm after i had eaten i still didnt feel right so i did an ecg on my watch (samsung galaxy watch 6, im aware there not 100% accurate but can give an indication of whats going on), yea my heart was in afib, so called 999, told them what going on, they sent out rapid responders who confirmed afib and took me to hospital, i was monitored for a few hours, till my heartbrate returned to normal (well normal sinus rythem), was given an aspirin which eased the heart pain (i know its a blood thinner, so means my heart was working less), had a contrast (with iodine) ct scan, a chest xray, and s3veral lots of blood taken. Results of the ct were clear, no damage to heart, blood vessals and arteries are working as they should, not sure why xray but it came back fine, all blood tests showed no sign of clotting (so no heart attack or stroke), all in i was there for 9.5 hours, got home at 6.10 am was absolutly shattered did not wake up till 3pm this afternoon.
so im now reffered to a cardiac specialist (apparently afib does not just happen), and my doctor for further testing.
Why am i posting here, because what i thought was just fybro pain turned out to be a life-critical emergency, DO NOT THINK EVERYTHING WILL BE FINE, DO NOT WAIT, it it does not feel right call 999, they really dont think your wasting there time.
I would include a pic of me in hospital but i cant for some reason
I’m beginning to think I can’t eat beef, but it’s the primary ingredient of my go to easy lunch. I know I can (or rather should) just make something in advance for the bad days but if I have bad weeks/months I don’t know what easy healthy food I can have as backup. I’m also just, really uneducated with food. If it’s not a microwaved piece of crap, is easy no prep food possible? I’m eating trail mix for breakfast lately and don’t know what else to do
The pain that is constantly in the balls of my feet is so intense, maddening, distracting, painful and literally almost drives me to insanity all day long. I've tried orthopedic shoes, the pads that go over balls of feet, shoe inserts, cream, EVERYTHING.
I don't have diabetes, I have a messed up lower back that may be the culprit but I'm curious if other Fibro sufferers experience it. Like WTF!
Been experiencing parasthesia (the spontaneous pins and needles thing) since last night and OH MY GOD this is sensory hell
Cant turn my head without my tongue going tingly. Can't stand up without feeling like there’s BEES IN MY HANDS. I hate this. I hate everything. I'm evil now (sarcasm)
My memory was never good due to ADHD but it started noticeably declining since 2012, when I was diagnosed with fibro and started taking medication, but this year it has started rapidly deteriorating.
I always thought the poor memory was due to the medications I’m on, burnout, or fibro fog but I don’t think it should be this bad…
For example, my word recall is frustratingly unreliable, in both languages I speak. I would be speaking and suddenly forget which word I need; and I’d just give up on continuing to talk.
I’m using more and more filler words nowadays.
I used to be able to memorise an advanced piano piece in a week’s worth of practice but eventually I couldn’t even memorise a children’s piece.
I have seemingly forgotten basic reading skills. When I’m reading, I can’t remember the previous sentence I read, so I’m always going back to reread. My working memory is completely destroyed. Sometimes I can’t comprehend what I am reading. I will know how each word sounds in my head but the string of words together makes no sense to me. I am still fluent in reading, I have a vocabulary, but I have no comprehension.
I’m easily confused too. I have these rare episodes where I forget the people in my life or where I am (I’m home). It extremely frightening. My support person will help me get reoriented.
None of my doctors know what is causing the memory issues and blame it on fibromyalgia. Almost every new problem I have is being blamed on fibro. I keep feeling like it’s a lazy diagnosis…
Would appreciate everyone’s input and also your tips on how to keep your mind sharp （╹◡╹）♡
TLDR: Longtime AuDHD-related memory issues, worse since 2012 fibro diagnosis, but rapid deterioration this year — word-finding failures, lost ability to memorise musical pieces, impaired reading comprehension despite still being able to decode words, and disorienting episodes of forgetting where I am/who people are. Doctors keep blaming fibro but it feels like a lazy catch-all. Looking for input + tips to stay sharp.
my new doctor seems to think that I have fibromyalgia. i was diagnosed with seronegative RA 3 years ago. last week I went to a new rheumatologist who seems to think I have fibro. he said it's either RA or fibro (but he emphasized more on fibro). he gave me hcqs and gabapentin. i thought Gabapentin is like a pain killer.
my joint pain has seemingly gotten worse on it. i also got headaches now. I've only taken it for a week. is it safe to stop taking it? what do I do? is this supposed to happen? I've never had a pain killer that has increased my pain but also the only factor that has changed since last week is these meds.
what do y'all think?
My mom has Fibromyalgia and from what I’ve gathered about it, it can be genetic. I’ve thought about bringing it up to my dr, but I’m also type 1 diabetic and have neuropathy in my feet and have scoliosis and arthritis in my spine so everything always gets passed off as pain from those. But my pain is ALL over. My legs, Arms, shoulders etc. I think sex is a trigger because after that it’s worse and then I don’t wanna do anything for weeks at a time (a month or little over) because my body is in a lot of pain and I know people advise against “Dr Google” but Fibromyalgia is what popped up when I put all my symptoms. It’s just something I do because I’m tired of all things being passed off as pain from neuropathy in my feet or pain from my spine when this pain is nothing of the sort and I’d know because I live with it. I know the difference. Sometimes it feels like the body aches you get from a severe cold except times 10. I don’t know how to bring up the suggestion to my dr because I just know they’ll say it’s from one of the two other things. It’s hard to be heard. I also have sensory issues cause’ things like humming, tapping, teeth grinding feels like I’m hearing nails scratch on a board. I’ve seen where that’s part of this too.
My legs and hip are kiiiilllllliiiinnnng me. Ever since I was very young, I had back and knee pain. The knees were the worst by far. I would lay in bed and just cry and cry.
And here I am, 35, laying in bed, woken up from the pain. I can't get comfortable. I'm exhausted. I have a knee pillow and my Warmiez cat. My anxiety is def up.
I'm so, so incredibly exhausted.
I've been fighting this battle for over 10 years. A few months ago we added LDN. Lowest dosage. I had 5 or six weeks of almost no pain. It was beyond amazing. Then more and more pain came back. We hoped the dosage. I'm now tight back with the pain waking me first thing and I'm so fucking tired of this fight. It is worse cause I had some respite.
I'm not sure why it quit working
I've had chronic pain for about 20 years stemming from a car accident as a teen. I understand that that itself can lead to fibromyalgia but I also have a bunch of mechanical issues. I've had two cervical surgeries for herniated discs. I have three more bulging discs in my lumbar. Arthritis in my facet joints, and shoulder issues.
The thing is my pain management doctor says my level of pain doesn't match the severity of what he sees on imaging. I have sharp pain consistent in location with my structural issues, and then also a background ache everywhere.
I've seen a rheumatologist, and I have all the sore spots, but I don't know that I really fit the rest of the symptoms. I don't have fatigue that keeps me in bed, just the pain. I have some fog/forgetting words but that's easily explained by my ADHD. I'm not stiff in the morning, and I'm not sensitive to normal touch or other stimulus. My body doesn't respond at all to steroid injections.
I know not everyone presents the same, but I can't help but wonder if I should push for a better explanation or diagnosis that fits better. Does anyone else have the pain and not much else?
My brain feels like it is burning again. This time I am wearing a Visible Health wristband. It has been so validating. It tells me when I am overdoing it so I can pace myself. It also shows when I’m in a flare while doing absolutely nothing all day, too, apparently. I’ve just been sick in bed all day, weak with a burning head. My budget is 7, and I am way over budget from exertion at 23.9 “pace points”. I don’t see how to attach a screenshot from the Visibe app to here; guess it’s not allowed.
Anyway, I am just lying here and it says I am exerting even now, and I haven’t moved for an hour. It doesn’t show this kind of exertion when I’m not in a flare (but it still tells me when I overdo it). This is really interesting, and like I said, very validating. I am not affiliated with the company; I’m just a customer/subscriber. I’m not saying you need this wrist band. I’m just saying we all have validation, looking at this.
Hey everyone, so I don’t know if I’m just paranoid and having an anxiety spike because of the meds or if this is actual cause for concern. If you don’t want the extra details and background skip to the bottom for the TLDR.
Exactly as the title says, I know Reddit is not a replacement for medical advice etc etc. (mods don’t worry I know)
I am going to contact my dermatologist via the patient portal message feature to let her know what’s going on regardless of this post. But I also knew I wasn’t going to get a response at 11pm on 4th of July lol.
So I have fibromyalgia, and my migraines get to be at an incapacitating level at points. I’ll feel like my head could explode, nauseous, dizzy, and yes at times vision changes (like blurring). Which are all overlaps with ICP from everything I’ve been reading.
I’ll preface this by saying I have waited 20 years to get on this medication, so I am trying to be very sure of my symptoms and side effects here.
Greatest fear my whole life has been going blind (career and hobbies all surround physical art- painting, drawing etc.) so I would be devastated. And as I said I’ve waited two decades to get on these meds (insurance barriers, money, other health issues etc) and I have horrible acne that actually triggers my migraines (shows up over lymph nodes and pressure points) plus this has been a struggle for me for a long time.
Nothing has ever worked topically, or orally with otc or prescription. So accutane really is the final line of defense here and I really want it to work and for me to be okay. I finally have my chance at good skin and now I’m getting paranoid about ICP from Accutane.
I started my first dose of Accutane Tuesday evening, and I ended up having an episode last night. And I say episode because it could be one of my shitty FM migraines or the ICP that everyone warns about.
I genuinely cannot tell the difference because automatically the anxiety set in because of the horror stories of ICP and going blind etc. even if it’s only a 1% I could be that 1% of people. And on the other hand, I desperately want this to work because I’ve barely just started and I would be devastated if it just had to permanently be discontinued and my chance was over before it ever started.
So I guess I’m looking for any insight on CLEAR DISTINCTION BETWEEN THE TWO THINGS. I know that is hard because there is quite some overlap but ya girl is struggling between the anxiety/fear of “fuck around and find out” and the grief of “this is what I’ve wanted for my entire adolescent and adult life don’t take this from me”.
So I’m very back and forth because normally I can trust my gut even when I’ve been on deaths door I have known my body very well even when it was issues I had never experienced before (I know it’s weird) but I also know accutane can affect mood as well, hence the anxiety portion (I’m not really an anxious person by default but I’ve experienced anxiety like everyone else in life)
I am trying to stay calm and not jump the gun but also not ignore something that can potentially be permanently damaging to my health.
TLDR & Relevant Facts:
•I have fibromyalgia, migraines, tinnitus and vestibular issues. My migraine etc. symptoms overlap with intracranial pressure symptoms (head pressure, vision changes, eye pain, nausea, dizziness, ringing in ears)
•I started taking 20mg Accutane BID 5 days ago (Tuesday, PM) (5’1” and 167lbs shh working on it lol)
•Yesterday I did kind of poorly with hydration and nutrition until a little later the afternoon
•I was indoors and out of the sun/heat because both fibromyalgia and accutane
•Episode in question lasted less than an hour, felt longer because I panicking
•Episode accompanied by: head pressure (right side and top of head mostly which I’ve had before) mild burring vision (also regular FM symptom for me)
•My pupils reacted normally to light when I checked them
•After checking them I felt almost instantly better (the reason I’m questioning if this was anxiety making a FM migraine escalating to a psychosomatic problem)
•No worsening with positional changes, and my tinnitus didn’t “pulse” with the head pressure
•I skipped my dose last night because I was too afraid to risk making it worse in case it is ICP
•I woke up feeling absolutely fine aside from mild nausea (normal for me even before accutane)
•Husband was a trauma specialist for 8 years, reassured me that the pupil thing is a good sign (did also see that it doesn’t necessarily mean you don’t have it, just means it’s less likely)
So I’m sure you all see why I’m worried. This could be very serious but I’m seeing so much conflicting information and it’s hard to calm down about it (I think also anxiety may be from the meds!) so any input on distinguishing would be helpful.
Again regardless of this post I’m going to make my doctors aware. I just wanted to know if I was overreacting before jumping in the car to go to the ER or urgent care (would be so embarrassing if I was fine)
Hiya! I know this is not a sub for diagnosis (obviously!) but thought I should ask here to see if what I'm experiencing could be fibromyalgia or something else. . .
The symptoms I experience are
These aren't constant, I am often pretty much fine (apart from some pain but I forget about it most of the time), but at other times (such as the last few days) it gets worse
There are probably others that I haven't remembered at the moment. I had a blood test a while back that showed I had no rheumatoid factor or anything else obvious, but slightly heightened levels of some inflammatory marker (can't remember the name), which my doctor said may be nothing
I also suspect I have hEDS, due to all the things my joints do, and my circulation is quite bad
Any opinions appreciated!
I’ve tried cyclobenzaprine (flexeril) and it does absolutely nothing for my pain so I’m going to ask my dr for something else, just wanted to look into what works best for everyone and read about the side effects etc before I choose what I might ask for (my PCP is wonderful and prescribes things I research if she doesn’t know the best treatment. She put me on LDN after I asked)
I am 19 and have recently been diagnosed with fibro after 9 months of fighting to get any answers for my symptoms and i feel helpless. i cannot hold a job (if i make a light trip to the grocery store in my car i have to sleep for like 4 hours) i cant do anything and im relying on money i had from before (not alot) and i dog sit once per sometimes. i am desperate for money but i cant do anything to get it. im in hell and i cant leave. the only thing i can do is wait for my next appointment. im lucky my mom is so nice to let me live with her rent free if she wasnt things would be infinitly worse. sorry for the rant i just need to get some feelings out
I have been having a lot of fun with a hobby I recently got into. I find myself wearing down and down, and even thought I might have norovirus today. It’s like that flu-ish feeling we get, but worse, with the addition of some IBS-like symptoms, a hot face/head, and weakness. I am pretty sure it’s just the excitement of what I have been doing. Like any intense mood can make me sick, even positive ones. Anyone else? I know stress is stress and can include positive emotions as well as negative ones. Do you give up things that make you happy, or how do you deal?
I know it's silly but I feel a bit invalidated after my appointment with a different rheumatologist. I told him the medication I was on and how difficult it is for me to do normal daily things (the fatigue affects me the most) and he ended up telling me that I'm not sick and I shouldn't act like I am. I know he probably meant to motivate me and tell me that I can push myself but all I felt in that moment was that if I'm not sick then what excuse do I have? Why can't I just get up and live my life— what's stopping me?
“I’m feeling good today, maybe I’ll go out with some friends”, I thought.
“F*ck you”, said the dropping barometric pressure, whose was actually the F*ck You guy.
“I’m sorry,” said the pharmacist. “ There is a national shortage of that medication.”
“All your labs are normal. Have you tried losing weight?” asked the 5th doctor I’ve been to in 2 years.
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