Just came from the rheumatologist where I was told the medications I'm on seem to be covering all the bases and I need to just get some more excercise.

Dude, I have been suffering for TWENTY YEARS. I guess I thought by 2026 there would be some breakthroughs or some shit. But I guess not. My whole life was upended, I hate it and I grieve for the life I never got to have. I guess you have to have a pain level of 10 for them to do anything.

I hate the future.

Thank you, that is all.

I learned of Fatigue Sense here a couple weeks ago, but have no idea what thread it was. If you have wondered about the fatigue tracking device (an arm band) and app that is out now, but didn't love adding a new wearable, look at Fatigue Sense. It is completely free, though I am donating to support the development because it is really blowing my mind. It uses the activity tracking device you already have, and then learns how your body is working over a period of 15-30 days.

Having a device track when I am pushing myself is incredibly fascinating. I am still in the callibration period, and the app is learning about my body signals and triggers, maybe faster than I ever will.

Today I have worked hard to move a bit more slowly, and not push myself like I did yesterday. I am just trying to get a feel for where the app thinks the sweet spot is. I was sitting at my desk in a pretty good office chair, and I was really ignoring how much I was huring because I was trying to finish something. I kept readjusting and trying to make my body stop hurting, but my back was just screaming.

I looked at my fatigue sense app, and all of my bodies signs that it was stressed were really easy to see, in bright orange, as the app told me to take a break and go lay down for 10 minutes. My mind is blown, and I feel really validated. My body shows clear measurable signs of stress when my pain is increased.

Yesterday running to the grocery store took half of my points for the day, and that also felt really validating.

How do I explain to my mom that my chronic illness and pain that overtook me at 24, will last forever, I will be disabled forever, even though I wasn’t born with it.

I can do things to slowly improve but only to an extent. Yes I do have to stay on medication my whole life unless some new medical intervention in the far future.

Video suggests or something! No books.

I literally told her, “Mom, I was not born with pink hair but I have it now. Thats how my illnesses worked too.

Why is there such lack of care around our battle?? I've seen so much community support and love for other diagnosises but fibro?? Nothing!

It makes me feel as if im in a bubble that no one can see or understand. Just full of confused sympathetic glances as I try and try to make people understand.

It makes me angry but god I'm too tired to do anything about it.

Hi everyone!

I was recently diagnosed with fibromyalgia, so I'm still learning about everything that comes with it.

I had one question for those who have been living with it for a while: do your symptoms get worse when the weather is cold? I've noticed that colder temperatures seem to make my pain and other symptoms flare up, and I'm wondering if that's a common experience.

I'd really appreciate hearing about your experiences. Thanks!

Hi everyone,
I (39F) have been living with some form of chronic pain for as long as I can remember, and I’m wondering if anyone else can relate.
In elementary school, it was debilitating migraines that kept me home from school. Once I hit puberty, it became migraines plus severe menstrual pain. At 16, I started experiencing unexplained abdominal pain that eventually led to having both my appendix and gallbladder removed.
In 2015, I was diagnosed with endometriosis. Since then, I’ve had multiple excision surgeries and eventually a total hysterectomy due to endometriosis and PCOS.
In 2017, I was officially diagnosed with fibromyalgia. Unfortunately, I’ve failed every medication I’ve tried for it. The one treatment that has helped the most has been lidocaine infusions, and after finally getting cardiac clearance, I’m scheduled to restart them tomorrow. I’m really hoping they provide some relief.
Lately, though, I’ve been struggling with something beyond just the physical pain. Living with pain day after day is exhausting, especially when a flare lasts well beyond a week.
I’d really love to hear from others who understand.
● How have you found purpose or meaning while living with chronic pain?
● What helps you cope mentally and emotionally during bad flare days?
● What do you do when a flare just won’t let up?
● How do you keep yourself from feeling discouraged or hopeless during long stretches of pain?
● Have you found any non-medication strategies that genuinely make a difference?
● If you’ve been dealing with chronic pain for years, what do you wish someone had told you early on?
Any advice, encouragement, or personal experiences would mean so much to me. Thank you for taking the time to read this. ❤️

Reminded of this today. Shortly after I was diagnosed in the mid-1990s, before we figured out effective pain management, I was in enough pain for my eyes to glaze over.

You may have read this phrase. In real life, it's like, "Dude! Your eyes are glazed! You look totally baked!"

I didn't realize I looked high when I ordered pizza. It took a disdainful stare from the delivery guy for me to glance into a mirror. Yup, eyes glazed with pain equals looks totally baked. No weed. No other drugs. Just pain.

So I saw a rheumatologist a few weeks ago to see if I could get a diagnosis. She was not ready yet to diagnose with fibro but she gave me a referral for a physical therapy evaluation. She also gave me a prescription for 5 mg of generic Flexeril to help me sleep.

I only took the muscle relaxer three times because each time I was f***** up the entire next day. Felt like total s***. Not worth the expense.

Yesterday went to the physical therapy evaluation. The guy was nice and listened. Then he had me do some stretches to sort of see what the limits of my mobility were. Nothing seemed to overexert me at the time. However last night my entire body was on fire. Finally was able to get to sleep and feel sort of back to my normal this morning which is pain in my upper arms and inability to lift my arms beyond horizontal without pain.

I start aquatic therapy on Monday. I'm more skeptical today than I was yesterday because of how bad the pain was last night. I just need to hold my ground and not let them push me beyond what I'm comfortable with. The whole thing might be a fool's errand.

Does your ribcage often hurt at night, preventing sleep and can't be comfortable at all?

For the last couple of months I’ve been experiencing a new type of pain. In the early morning hours, before I’ve really woken up, in those moments before full consciousness hits and the regular pain for the day sets in, the few moments of half asleep bliss where there’s no or very little pain - out of no where a full body deep ache muscular pain, that’s sharp in experience sets in, as if it’s just consumed my whole body and the aches are so severe it makes me want to cry. The urge to move through the pain and writhe sets in, but then as it wakes me fully and I continue to move for awhile, the pain will disappear after 15-30 minutes. Then I go back to my regularly scheduled programming. I can only assume that this has a psychological origin. Anyone else experienced anything like this?

Hi all,

I am currently trying to recover from being sick for 3 weeks (sinus infection) and then having a very busy week and a half afterwards. Let me know what your best rest and restorative “activities” are! I’m currently just watching some series on the couch and falling asleep for hours on end. I was thinking of trying to do some yin yoga today but I also want some other tips. Maybe magnesium foot bath? Some type of (easily accessible) massage?

Thanks in advance! 🫶🏼

It's definitely not as big of a deal as the rest of the bullshit we deal with, but today I finally got rid of (donated) all my beautiful, amazing high heels. I haven't been able to wear them in years. I walk with a cane. My hips spasm and knees buckle. But damn if I won't miss those pretty things.

How does METAXALONE 800mg, 3x daily, work for you for fibromyalgia?

I was taking Robaxin and Flexeril. Doctor told me to try this for a week.

took a weed pill and it did wonders for relaxing my muscles but now my whole body feels like cooked pasta and im so sore. seems like the constant muscle tension (aka the reason i toon the weed pill) relieves pain in the short term but also is the cause of a lot of the pain??

anyone else experience this?

Not officially diagnosed as no doctor in 10 years has thought to look into why I’m always in pain but my new pcp said my issues sound like fibromyalgia so hopefully I can get somewhere with him. For context I have NDPH (24/7 headache and migraines 15 days a month, they do not respond to any medication or treatment nothing touches my pain). They’re unmedicated bc my specialist is out of options and her suggestion was to see a pain specialist who could only do nerve blocks which caused me such severe bone on bone pain that took 6 weeks to go away and he couldn’t do anything else. Pain meds (OTC, toradol, Tylenol 2, muscle relaxers, roll ons, etc) do nothing for me. I do my PT exercises and stretches every night. I sleep on my stomach it’s the only way I can fall asleep and I don’t sleep with a pillow bc any put my neck at an awkward angle. I can’t sleep on my slide it’s uncomfortable on my shoulder. I cannot sleep comfortably I wake up constantly bc my body aches. I’m having to nap during the day bc I sleep like shit. I so badly just wanna sleep without pain. I’m hoping to ask my doctor on Monday for either meds to help the pain or sleep meds

hi everyone :-)

sorry for asking so many questions.. i was curious about what mobility aids are used to help deal with fibro. i previously used an adjustable aluminum cane for a bit, but stopped after becoming insecure about judgement. i wanted to ask what you guys might be using to help, just for me to keep in mind some aids for the future.

The air quality is really bad where I am right now and I think it’s triggering a flare up for me. It’s the first really bad one I’ve had in months because I’m worse in the winter and obviously I hurt and I can barely move etc. But the worst thing right now is the mental effects. I have the worst brain fog and I’m so depressed and anxious and unmotivated and I literally feel like I can’t do anything. Idk I’m just tired of it and don’t know what to do.

Heyyo! this morning I was just diagnosed with fibro. I'm not sure how I feel about it, but I wanted to reach out and see if anybody shared my symptoms:

- ADHD (diagnosed in 2021)

- brain fog (so bad that I forget what I'm saying mid-sentence)

- insomnia (caused by pain most of the time. Sometimes it's because my brain wont shut up)

- fatigue (been dealing with this for years)

- light sensitivity

- heat/cold sensitivity

- early Reynaud's phenomenon (not as extreme as photos online, but still have extreme reaction to temp changes from going inside to outside)

- joint paint (some places tender to the touch. all joints hurt. knees hurt worse at times and roomie says they look hypermobile)

- more susceptible to upper respiratory infections

- feeling like I have the cold / flu, feeling like I'm running a fever, but am not.

- muscle aches/pains

- muscle weakness

- easy bruising

- dry eye/ dry mouth (eye doc months before fibro diagnosis said it was weird my oil layer was the only one that was dry. dry mouth could be side effect from trazodone i take for my insomnia)

-ive been describing my pain for the last 2 years as "as if my nervous system is absolutely fried"

-sensitive to touch/touch can be painful

-generally feels like all of my senses are on dial 10+ plus

- swollen lymph node in neck (been swollen for over a year; still has a fatty hilum. after doctors have ran test they are not concerned for lymphoma)

Blood work came back normal. my mchc was in the red, but she said it still is in normal range. She did a really extensive blood panel; even my other autoimmune friends said their rheumatologist didn't even go that far with my panels). I have no physical signs of swelling, except in the mornings / if i get over heated my fingers are swollen / hard to put on or take off my rings. I'm probably forgetting symptoms right now as I am typing this, but generally, I have really bad flareups where honestly death feels like it would be better. But I try to keep going. I like my rheumatologist bc she seems to specialize specifically in AFAB patients that have autoimmune disorders go undetected, so she seems to really know what to look out for.

My next steps: move forward with fibromyalgia treatment (cyclobenzaprine 5mg and meloxicam 15 mg) for 2 months and follow up. I see my new primary doc end of this month, I will be pushing for an allergy panel to see if I'm simply exposing myself to something I'm allergic to on a daily basis, and I see an OBGYN soon to follow up on seeing if I have endometriosis, and I will push for a hormone test. I saw both an ENT and endocrinologist about my hyperthryoidism / possible hashimotos/ swollen lymph node issue and both said all of my symptoms seem systematic after they tested me for lots of things on their end. (edit: i forgot to mention that even though i have hyperthyroidism, it's not even bad enough for me to be on meds. i just take 5000 IU vit D everyday; thats it. Plus, they tested for hashimotos; nothing.)

I feel like my doctors have been listening to me really well, and have even ran extensive tests to try to help me, but I am having some mixed feelings about fibromyalgia diagnosis. I feel like if I have it, it has got to be comorbid with something else. but other than my pain, everything has always come back absolutely normal and healthy. I have had a feeling this was a central nervous system issues the past couple of years it has been really bad. I just want to see and hear others perspectives; I tested negative for everything; my ANA panel negative, I didnt carry any genes, rheumatoid factors all negative, she ran like 3-4 different panels for RA alone, tested negative for LUPUS.

Hi everyone!! I’m an ambulatory wheelchair user and i have Degenrative Disc Disease, fibromyalgia, POTS, IBS, (suspected) ME/CFS, and a 3 level spinal fusion. I’m 20. I just got my chair in May(yay!) I’m wondering what accommodations to ask for in college? I really want to not forget anything going into this semester since i’m already nervous to take my chair on campus. I do live at home so I’m not super stressed about housing accommodations. If anyone has any accommodations to recommend or even products to recommend to help me succeed in college I would be so so grateful!! Have a great day!

I know it's not a fibro drug but wondering if anyone tried it for something else and how it affected their fibro? Was just prescribed it but scared to try

I had my first acupuncture appointment yesterday. The appointment itself went mostly fine other than two needle spots on my hands which had small red marks after and hurt. I felt fine for a few hours but around bed time I started feeling very intense cold intolerance, chills and bilateral arm pain which recently have all been how my flare ups manifest. This flare up just felt extremely intense and I'm still struggling which sucks because I had been having a good week pain wise. Has anyone experienced an intense flare up post acupuncture, is it normal to have increased symptoms?

I'm so upset I had high hopes for this treatment option and now I don't know if I should give it another chance.

My doctor diagnosed me with fibromyalgia after about 2 years of going to her and complaining about my pain and taking a lot of tests with no findings other than “well it’s not ____.”
I always had body pain issues, but it really escalated in the last 2 years. I guess I’m pretty new to it all. My doc has put me on duloxetine currently, which I just started today.

I used to work about 2-3 jobs as a videographer and graphic designer. But I’ve quit the in person jobs and now I’m remote only at 1 job as a junior Instructional designer. Works going well, but the hours are excruciating, I have to lie down so many times. I also start my masters in September, which I’m nervous about, but thankfully I choose an online only program that my supervisor recommended.

I never had the best table at home or chair, my table is an art desk from when I was in highschool. 😅 That I can’t adjust the height on. And my chair was the cheapest I could find from IKEA. Would love any recommendations on good home office furniture.

Hey guys, I’m new here (M25). My story is pretty long but to summarize I’ve been having weird symptoms for about 5-6 years now. I never saw a doctor about them until this year. For some background I have a long history of anxiety, and in 2020 I had a 3-4 month span of super high stress, anxiety, panic attacks, the whole lot. I feel like I haven’t felt the same since. It’s impossible to list all my symptoms but the main ones are the following:

Intense daily fatigue and brain fog
Non-restorative sleep no matter how many hours I get
Hypersensitivity to light
After-images and visua snow/eye floaters
Dry eyes
Facial flushing/redness especially after eating or drinking
Full body itching
Heart palpitations
Acid reflux
Off and on full body aches and pains
- stiff neck and lower back
- achy legs
Random jolts of pain everywhere
Tinnitus
ED
Tenderness under armpits
Testicle/abdominal pain
Bump on neck that has been tested and believed to be an enlarged lymph node

I will say while my symptoms are widespread, they are relatively mild compared to a lot of the posts I’ve read on here. I’m still able to live a pretty normal life, but it still does affect me daily and I feel like my quality of life could be improved.

So far I’ve had a a CT scan of my neck to check on the swollen lymph node, a scrotal ultrasound that came back negative, and physical exams done by an oncologist, ENT, and rheumatologist with nothing alarming. I just had my rheumatology appointment after months of waiting. She said nothing was too concerning to her based on my symptoms, and she tested for like 6 different autoimmune conditions. All the results came back negative and she basically said “I don’t think you have an autoimmune disease. Some of your symptoms are likely due to fibromyalgia. No follow up needed please refer to your PCP.” That was it. Now I’m confused where to go from here. Do I need to push for a formal diagnosis? Is the PCP qualified to treat fibro? Do you think I need any further testing? Any help someone could give me would be greatly appreciated. This condition confuses me…

I will wake up, and all of a sudden I will feel a horrifying sensation of my nervous system going down and it’s really scary, as if it’s about to turn off and this initially brings about anxiety, panic and I can work myself up into a state, but it’s happened quite a bit now over the years, maybe once every 9 months where I kind sort of sit in it now.

It’s like I can finally feel again, because my fibromyalgia is always constantly on and I feel pain, tension and discomfort when this occurs it’s almost foreign and alarming.

As if I’m so used to my flight or fight response being ON that when it down regulates it’s not normal so I panic and it’s a rather big jump down.

What’s happened in the past when it occurs is I panic and get into a situation where I struggle to breath feel light headed and I’ve even been to the ER over it once or twice thinking I’m going to die.

but it occurred this morning and I just kept telling myself, I’m okay, it hasn’t killed me before, if it does, it does relax and I just let it play out.

But what is weird is, all of a sudden has this occurs, I can feel sensations like I used to feel prior to fibromyalgia, I can all of a sudden smell better, I can also stretch again, does anyone else notice that with fibromyalgia? that you can never stretch any part of your body. When the constant pain is there, try stretching, and you don’t get that fufillment anymore, I think it’s because we’re so unconsciously tense and braced for pain, and our brains are sending so many constant signals of pain that our brains just don’t have room for it when we are like we are.

But as this frightening discomfort passes, it’s also freeing, I can stretch my hands, my finger joints, my legs, every part of my body can feel like it can stretch and it’s so nice, of course as I’m doing it I still feel this long forgotten relaxation as discomfort and my nervous system and my brain are scanning for threats but I just tell myself “I am safe.” and this time I managed to not work myself up into thinking I’m about to die.

I’m in bed right now just relaxing, and trying to stay calm, but I’m just documenting this so I remember but also asking if anyone else experiences this?

It’s so rare, so so rare but I often think it’s my fibromyalgia almost wanting to go into remission and I’ve had fibromyalgia for 6 years now.

I’m 34 but when I was younger at 20 my first major break up which broke my young innocent soul lol send me into like pain for 3 months and then something like this occurred and I was back to normal after it.

It seems stressful events kick me into this, as the last one was when I was 28 and I’ve been this way since in chronic pain everyday.

But every so often, I get a weird dripping sensation which I can only assume is my nervous system coming out of its heightened more sensitive fight or flight and it tries to go back to baseline and fails.

Well, I decided to not freak out and whilst it’s extremely uncomfortable emotionally and sensation wise, at the same time, I feel relaxed on the surface of my skin where usually pain is, I can stretch everything literally everything and it’s close to orgasmic because I never feel that, you can image years apart of feeling this all of a sudden is quite nice.

But I can also feel my nervous system being aware of the unusual discomfort and sensations and I usually work myself up to a state, it’s like my nervous system has a mind of its own and I just observe it.

Anyone else relate or ever get that? I feel like it’s a catch 22, I almost am entering remission, no pain, ability to feel like I used to with tactile touch and feel, but at the same time, it’s so foreign and unusual and I’m so used to pain, I almost feel like being in pain is my baseline and that’s more familiar to my bodily sensation homeostasis that my nervous system wants to get back to that rather than be pain free and feel sensations without pain.

What also occurs though is almost like too much feeling, for me when I’m in pain just feel large clumps of pain in my hands, my arms, my face and back, not really my legs.

But when this returns, I feel almost like too much sensation all at once it’s not gradual I feel like the tiniest sensations around my lungs, like costocondritus which usually freaks me out, but today I remained calm and I’m in a weird middle ground.

It almost feels good because I’m pain free, but at the same time I’m like too aware all of a sudden of new pain free sensations.

I really hope I’m not alone here.

needless to say this is gonna be depressing.

I just like. I've been in chronic pain since i was at least 10 and fibro probably started around then too. but. These days especially recently. I just i have been trying my best to keep afloat but. ive never worked a day in my life, i wanted to do a course this year im 22 and the first thing id be doing since i was 17, I've been having horrible knee pains. Rhem was late, had to push it back to next year, i was really looking forward to it. then rhem fucking feels my knees looks at the pretty old xray s then says its the fibro. no additional checks. and she tells me to go off the codine. go to my gp. thinking Shed understand the i need that codine nope! she takes me off it. now here i am with no family, a couple friends, my fibromyalgia worsening to the worst its ever been while my pregabalin has stopped working. i am so fucking lost in life i dont have shit. i dont know what my future is gonna be. im on my wits end. i cant be doing this fot the rest of my life. im in an endless cycle of tourture. dreams always crushed. doomed to disability payments where i barely Meet my cost of living. is this life worth living? imo no. i am still here entirely for my friends at this point. im not enjoying life haven't been for year's, no matter how much i self advercate for myself at every turn. im still ignored. still in horrible pain. i always end up at square -5 next year. i just want to do my passions. and not stress about money.

does anyone else feel this? also will say i wont kill myself i have a counsller and help around me. i have supports. but definitely hate this condition and being a minority of a minority of a minority (fibro, trans/agender, aroace). also i will say im in nz.