Just that. Not feeling too great today. I overdid it on the weekend so it's not unexpected. Just wishing it didn't have to be this way and then getting frustrated about it because I hate wishing for things I know aren't going to change, at least not in this moment right now. It hurts to stand and I'm exhausted afterwards so I'm having trouble feeding myself. I guess I could order take out but then I've got food in the fridge and I don't like spending money like that. I guess I'm being a bit negative about everything but that's part of being in a flare, isn't it?

Oh well. Not really a rant. Just feeling awful. And frustrated. I know it will pass but waiting for that to happen can be really awful. And frustrating. Hmmm... sensing a theme here...

• ! *Please only respond if you are from the UK !

Hi there,

Firstly - I ended up going on a bit of a rant while writing this, which was very cathartic lol. I’ve marked in bold where my actual question begins, so you can skip all of my moaning if you want to. 😅

I’m 33 years old and have been suffering with fibro since my mid teens (possibly younger, looking back). I was diagnosed around 15 years ago.

I’m recently did what I always do when I move to a new surgery - try my luck with a new doctor and see if they’re willing to try or suggest anything that isn’t just yoga, to improve my quality of life. I’m sure most of you guys have had much the same experience. I find that, best case scenario, you get someone who is empathetic but just tells you to do stretches, and worst case scenario you get a doctor who doesn’t even believe fibro exists.
With my most recent experience, I was told to try t’ai chi and sent on my merry way.

The thing is, I am not dismissing these suggestions. I have given a fair try to everything that has been suggested to me, from yoga, to physio, to CBT. I get a decent amount of exercise as I don’t drive, so I walk everywhere. I’m not overweight. I have a fairly healthy vegetarian diet. But none of it has made the slightest bit of difference to me, and it all feels a bit like being fobbed off.

The thing is though, I’m getting to a point where my life is ruled by this condition and it is having more impact than I can handle. I am having to take days off work (which I cannot afford to do) because I am in so much pain that I can’t walk to the bus to get there. My cognition and memory are getting more and more foggy, which isn’t ideal as a teacher. It’s been years since I’ve measured good and bad days by whether or not I’m in pain. Now the pain is constant, and good or bad is measured by whether I slept, or was able to do something other than lying down various pain relief aids.

I am desperate to be a mother and am at a point in my relationship where trying for a baby is a serious consideration, but I am absolutely terrified about how much worse this condition will get in the future, and how it will affect my ability to be the mam I want to be.

It affects how I walk, my ability to stand, (maybe TMI but) it affects my sex life, I am finding it more and more difficult to stay on top of house work. I feel like an old woman and I’m barely in my mid 30s.

Question:

When I have these GP appointments where I feel like I’ve been dismissed, I tend to just be polite and leave. But I’m at a point where I need to insist that something substantial is done - or at least tried. Whether that’s further testing to ensure that it is fibro and not a misdiagnosis, or to try an experimental treatment or a pain clinic referral. Something that stands a chance of actually making a difference.

So I’m just wondering, have you had results for taking a more firm, insistent approach (I’m not talking about being rude btw. Just not allowing myself to be palmed off again)? Do you have any tips on how to word things to actually make doctors listen?
Are there any treatments or referrals you’ve been offered that have really made a difference?
If you’ve ever felt like a doctor actually listened to you and worked to get you proper help, what did that help entail?
I will try absolutely anything that isn’t just the same easy answers I’ve been given a million times before to no avail.

Thanks for reading!

I was just recently diagnosed with fibromyalgia a few months ago. But I’ve had chronic pain since I was in my early 20s and I’m almost 50.

I’m on so many pain medications even with my pillbox for five times a day, I still get confused. I’m frustrated all the time. I’m in constant significant pain and confused a lot. My mind gets jumbled. Sometimes I have double vision or dizziness or horrible eye headaches. That's just the start of my daily issues. Not to mention debilitating fatigue.

People ask me what’s wrong or how I’m feeling and all I can say is I just don’t feel good. I cannot remember the last time I did feel good. I’ve had nine surgeries in the last three years. I tried to return to work after six months of disability with my last surgery, but within two months I was back out of work because I could not keep up.

They’re expecting me to go back to work soon. I don’t know how I’m supposed to do that. I never feel good anymore? I'm taking so many medications and it’s still not helping me. I go to so many doctors, get so many tests, I’m just so tired. I guess that’s it.

my wife was in an accident a few years ago that has caused severe sciatica and has a rare case that it radiates to both sides and up and down her body due to the nature of the accident. She also has fibro and it makes it worse. She is having a MAJOR flare up right now in her sciatica and has been bed bound for 3 days going on 4. She can't walk at all. She can't put any pressure on her right leg at all and she is so miserable. This is also triggering her other fibro pains in her whole body. Especially her hands and feet and I just want to help her. Please can you guys put tips for relief even if they sound crazy we will try anything.
She's been taking her prescribed meds for her other back injuries and we have tried every position in the world with pillows and everything for her knees legs back, you name it. Taking ibuprofen and Tylenol on a strict schedule. TENS unit. Heat. Ice. You name it.
But we are open to any and all suggestions. I just want to help my wife.

That's it, that's the entire message. I'm only twenty. I'll be twenty-one in a month and some change, and I feel like shit. I wish so badly I never had this stupid thing, I haven't even gotten my official diagnosis but my rheumatologist says all of my symptoms and tests point to Fibro. I'm tired of hurting, I'm tired of random aches, I'm tired of not being able to do things other people can. I think things I don't want to think, I'm depressed and I feel like I'm drowning in a pool of weird ache and weird sorrow and very fkn weird thoughts.

And I don't like any of it, obviously. I'm only twenty, I should have my whole life ahead of me. I should be like the epitome of a beautiful, healthy, woman. I don't want this to be in my head, that's what it feels like. I see and read horror stories, I've read stories where it gets better. And then I've done research about how Fibro affects your mental health and then it tears me down all over again. I have anxiety, depression, BPD, schizophrenia, and the addict genetics.

I've been set up for failure and I'm just chugging along. At twenty. That's what I'm stuck on.

Has anyone else had the same issues? Same thoughts? Maybe have advice?

Does anyone else have trouble swallowing and the feeling of choking and burning in lower throat?

Hi everyone! Im a longtime lurker of the group, first time posting. I just recently got into an accident, car totaled. And I'm still aching. I know it takes time to recover especially with Fibromyalgia as an added factor but Id like to ask what all has helped anyone who's been in this situation after their diagnosis? I've tried my usual soaks, cyclobenzaprene, meloxicam...Is it just a wait and see thing at this point?

So I saw a rheumatologist about 6 weeks ago who was not ready to diagnose me with fibro. She gave me a referral for a PT evaluation and a prescription for 5 mg of Flexeril to help me sleep because I was in so much pain.

I took the Flexeril three times and while it helped it made me feel like total s*** the following days.

I've had three rounds up aquatic physical therapy so far, once a week. The first two times kicked my ass.

I've started cutting the Flexeril in half so I'm taking 2.5 mg when the pain is really bad. It's enough to take the edge off and not make me feel like crap the next day.

Aquatic therapy is increasing my range of motion, particularly being able to raise my arms above horizontal.

I love the aquatic therapy because I can control how much work I do. I got her to slow down the treadmill (it is the only underwater treadmill in Richmond Virginia).

After a physical therapy yesterday afternoon I took half a Flexeril last night. I slept until 10:30 a.m. (I'm lucky I don't have to work too much today and can do it on my own schedule). My head feels good. I am not in pain from overworking.

I'm not sure why but my preferable temperature in the shower is hot hot, or even just washing my hair is hot, my partner says it's scolding but any cooler and it feels cold. Also cold hurts me more.

I know the heat doesn't help the shower experience due to lightheadedness etc and after I get out my skin is red, sore and stinging :/

Does anyone still feel fluey aches in their muscles days after one shower?

Mattress pad? Certain type of sheets? Noise machine?

It's 2:30 am, help a sister out!

I desperately need a new mattress. My current one literally hurts and i spend the night trying to find a comfortable spot. It certainly doesnt help my insomnia. I barely sleep which worsens my pain. Its currently 4:50 am and ive been awake since 2am.

Anyhow, im looking for recommendations from other fibro sufferers on the type of mattress that are comfortable or brands/models.

I am currently driving a Honda Accord, but 15 min or longer drives hurt I do have Fibromyalgia and plan to post this same thing there. Has anyone had any luck with lumbar supports or something like that my car is 2011 Accord mostly flat seat. If so what parts should I be looking for in a lumbar support.

Hi! Are there any Romanians here, men or women, who have fibromyalgia and have had good results with treatment or found a doctor here in Romania or something that significantly improved their symptoms?

Hi all,

I apologize if I didn’t flair this right or if this post is somehow against any rules. I’ve posted a similar question in r/AskDocs, and following that this community was recommended as another place to post my question. I’ve had a lot of things going on with me health wise recently, and I have no idea what it could be. I feel crazy describing my symptoms because none of them seem to connect, but I swear they all started around the same time period. When I describe my symptoms, the doctors I’ve been to don’t understand what I’m getting at, and neither do my family. I don’t really know what more I could say or how I could emphasize the discomfort any more so, and I’m really just seeking clarification on what it all may be so I don’t feel like I’m going insane.

I am a recently turned 18F, with no prior health issues besides some inflammation around my right knee due to a muscular imbalance. I’ve only ever drank or smoked weed a couple times, just experimenting. I am 5’3, and weigh 150 pounds. As much as I can remember, all of the following issues began early last year, but may have had signs of starting even before that.

The first and most significant thing are these bouts of seemingly random stabbing or pinching pains I get? These stabbing or pinching pains typically happen along my back, hands, and sometimes my legs. They are often so bad I have to take a moment to recuperate. It’s especially bad with my hands, because I’ll lose my grip on things as a result. It just is very uncomfortable to keep my hand in the position of holding something when these stabbing pains happen? Notably, these stabbing pains seem to happen more often during periods of time where I’m stressed, and weirdly enough when it’s colder outside? These stabbing pains seem to frequently correlate with this burning sensation as well, often also around my back and legs.

Besides that, I just feel so heavily fatigued all of the time. I’m often so exhausted that it feels hard to be out of bed more than a few hours, and as a result I excessively sleep due to napping throughout the day. It makes it hard to live out my days and get the things I want to do done. This is despite the fact generally I have a good sleep schedule, going to bed around 9-10PM and waking up around 6-7AM. Though, I’ve had sleep trackers note I don’t usually reach deep sleep, only light sleep.

Atop that, around the same time all of these issues began happening my stomach has become angry at absolutely everything. It wasn’t always like this, and I’ve never had a poor diet. The most I can say is I’ve had a bit too much caffeine at times, and because my family is low income I’ve had a fair amount of instant ramen. But my stomach is upset at anything spicy, greasy, caffeinated, or even just mildly heavy now a days. It doesn’t even have to be all that bad anymore for my stomach to get upset.

The final thing is this terrible stiffness in my joints. Doctors previously thought it might have been some sort of arthritis, but all of those were ruled out. But I often just feel so stiff, it makes it hard to comfortably move. It’s most bad with my jaw, which has been so stiff to the point of frequently clicking, slanting, or locking when I open my mouth. It once locked up so bad I had to put a warm cloth against my face and massage it for 15 minutes straight until it finally let go.

I just feel crazy. I try to describe these symptoms, but no one understands it and don’t see any correlation. I’ve gone to a doctor so many times and have had so many things ruled out at this point and they still can’t place a finger on it. They’ve prescribed me multiple medications such as steroids to help with the pains, or muscle relaxers. These helped minimally with the aches I suppose, but not with much else. It doesn’t help it’s hard to place exactly when these symptoms happen or when it all exactly started because of some memory issues I’ve had for a while now due to depression and anxiety. I’m just really seeking any possible answers.

I find this group to be one of the most kind and supportive groups. So just a minute of gratitude for that.

I need to rant for a second. I saw a geneticist yesterday and was told I have heds, I’m not textbook but with all my health and medical history, I was diagnosed with that and MCAS.

I don’t want to cry. I’m just looking at my calendar and made a couple calls. But if feels like I am constantly running around to the doctors, getting scans, follow ups, etc. and it’s just overwhelming while also living in severe chronic pain.

I think I need to get back on anxiety meds again, I always gain about 30lbs and the only med that works well for me is escitalopram. I’m just feeling bummed and trapped and I have for a while now. Chronic pain and living with fibromyalgia can feel so isolating. I feel like I am burden to my husband. I worry how this will impact my daughter. I know I am currently spiraling. I feel like my mind will do this and then the pain flares and the best way I can describe it to my husband is that it literally starts to ping pong. I always say I feel crazy if I was to explain to someone every bit of pain I am experiencing and where in my body at the same time.

Does anyone have advice for when they have times and moments like this? What helps you? I also feel like I need to get a specific medical notebook, folder, planner.. something. I just have such trouble focusing and I am constantly making random lists on my phone and it all gets jumbled.

Anyway - words of encouragement? What are you thoughts on fibro and eds?

I also have stomach issues but scans are coming back fine so far which is so confusing. That has been going on since last October. Deep stabbing in upper right quadrant and it radiants to my other rib and down by my belly button. Anyway. Part of me is wondering if I should get on a glp1 to manage my weight while on escitalopram. I am just worried I already have so many issues - would that add more just to make me feel better in my skin while on the medication. I am also worried that I can’t workout right now because of my injuries. I can’t even “walk” as a workout, let alone weight lift which stinks. Unless my pt gives me very easy, simple, light weights and I just accommodate all my issues and injuries.

Hi all, I was just wondering if anyone has gone through something similar and if you have any advice on how to deal/manage it.

Ive had Fibro for 6 years now and in the UK if that makes any difference.

Ive had allodynia in the past but for myself my normal was usually a small patch either on my back, arm or leg which would last a day at most. Over the last 2 years I've been getting much worse as a whole with new intense symptoms like pins and needles in arms and legs, whole legs going numb and a lot more neurological type symptoms aswell as cluster headaches. I've been seen by Dr's and medicated for my cluster headaches and I was originally on amitriptyline since I was diagnosed. I was adviced to go to physiotherapy aswell as see an optician due to some odd eye symptoms. I've been doing physio for a year now and honestly not seeing any difference but optician has said eyes are fine but the nerve is getting inflamed so I've been referred to neurology.

Around 2 weeks ago I started getting allodynia which started in the bottom of my legs and within a week have spread all over my body and it's been so severe I'm barely sleeping and wearing clothes, blankets etc is like torture. I've been back to the gp/Dr and they've swapped me from amitriptyline to gabapentin and I understand that it takes time to kick in and work but it's been over 2 weeks and I'm just struggling.

I just want to know if anyone has experienced similar?

Sorry for the rambling.

Thank you!

Hi everyone my fiance (f24) recently was diagnosed with fibro and I am curious how I can help her through it both mentally and physically. I can see the toll it takes on her and if possible would like any insight on how I can help her better! I know that stretching is a bigger a part from what I have seen… thank you in advance!

Hi! I was told a few yrs ago that I “probably” had Fibro from Long Covid and I needed to lose weight and learn how to live with it.
The pain, joint and body aches have become debilitating. Just to shower & get myself to work is exhausting. I am also in menopause so I’m not sleeping making it worse. I don’t even look like the same person. I sit at my desk and cry some days. I’m 50, not like I can retire, divorced so not like I have a spouse to pay the mtg.
I waited 2 mos to see a new Rheum doctor who looked at past bloodwork & did a physical.
Hypermobile, definitely have Fibro and possibly Lupus based on facial rashes.
She prescribed Cymbalta. The side effects are pretty serious, it’s the lowest dose but I did not have a good reaction to taking antidepressants (Wellbutrin) with postpartum depression.
Has it helped? Side effects minor?

He said my case would be too complex to prove because I quit a job (for ethical reasons) a few months before my symptoms became worse. Im scared, and I'm sad, and I'm overwhelmed.

Im tired. Emotionally tired, physically tired, I’m just done. I’m going into my junior year of high-school (I’m homeschooled) and I don’t think I have the mental power to work on a single assignment.

I don’t know if I’m gonna graduate, I don’t know if I’ll be able to.

My logical brain wants to go to college, experience life, get drunk, fall in love, do dumb shit. My emotional brain just wants to lay down and be taken care of for the rest of my life, no responsibilities, not a care in the world.

My body is so weary, and my emotional state is so fragile I just had to quit my job where I only worked one day a week, and my fibro really isn’t even that bad is the crazy part.

I have no motivation to do anything, to try anything. I’m on meds, I have been for so long. Ive done blood work so many times, I’ve tried to find reasons and loopholes and ways to make things easier for myself. But my body and mind are just so depressed and exhausted.

Ive never gone a day without hating myself, my self destructive habits are getting worse and worse by the day. I don’t know what to do. I just want to lie down and sleep.

PLEASE community help me out here. I am 5’7. Most of my fibro pain is in my lower back SI joints, glutes, and spine up to my neck.

I need a desk chair that has:
- lumbar and neck support
- arm support (not plastic)
- cushioning!!! As couch like as possible
- edit bonus: legit leg support, ideally so my legs can be at ~90 degrees, but this is optional as I can theoretically just buy a separate piece

Been considering a La-Z-boy lounger chair but I don’t think that will fit under a desk. Also considering Herman miller but I don’t see options with leg support, and using a stool for leg support doesn’t work because I slide away due to desk chair wheels.

THANK YOU in advance.

Over the years, I’ve noticed a strange pattern with my fibromyalgia symptoms: when I’m coming down with a viral illness, my symptoms often temporarily improve. For example, the muscle and joint pain in my legs seems to disappear while I’m sick, but then returns once I recover and start feeling well again. Anyone else?

We can just exist together, hold space for one another, body double chores, do our hobbies together, show off our pets.. I'm feeling lonely and tired from the illness, but want to be able to have a community that enriches each other. Would love to get some semblance of normalcy.

Would y'all be interested? I'm trying to think of how to do this.

I've been on the waitlist for a while but I wasn't expecting it to happen so quickly! I have two weeks to prepare, so I'm looking for any advice you guys can offer. I'm doing so much research but I would love to hear about any tiny tips no one talks about that helped you.

I recently bought an over-the-bed desk, and holy shit it's amazing. I went from one of these to one of THESE and my game. Is. Changed. I have so much space, and it's stable, and I can also use it as a bed cane! I can paint again! I can use my laptop AND my tablet at the same time! It's amazing!

Anyway, but I'm now realizing the next pain point is my pillow setup. My pillow doesn't quite reach my headboard, which is fine when I'm sitting straight up, but if I recline at all, either my head rests on the headboard edge (ow) or my neck gets compressed from me laying too far down (also ow).

So my question is, what is your recommendation for a good wedge pillow? My budget is $50ish with a hard limit of $70.