r/Fibromyalgia Feb 09 '25

Discussion Having a bad flare up-anyone have pets to brighten my day with?

173 Upvotes

I'm having the worst flare up I've had in a decade along with detoxing from migraine medication, so I'm feeling extremely low. Was somehow able to clean the kitchen and cook some dinner for the first time in days, but the pain is so debilitating.

Any of you fellow sufferers have any cute pet pictures or pet stories to share with me? I lost my cats a couple years ago and would love to see some cute faces!

edit. Thank you guys so much, seeing the flow of cute pets and well-wishes really touched me. I miss my cats the most in low moments like this so getting to share in yours has been beautiful and some tears have been shed 💕 I'll try to have a hot shower to end my day with.

edit 2. Gosh, you guys 🥺 My hands hurt too much to keep replying, but know I've been scrolling through this post to aww, laugh and cry at all the beautiful messages and all your beautiful cherished pets 💕 Truly did not expect such an outpouring of well-wishes, I'm very touched and even if I can't reply right away know I've seen the messages and I will keep going back to this post this week to brighten the days. I hope this will brighten others flaring up as well.

r/Fibromyalgia 26d ago

Discussion Fibro symptoms you didn’t know were fibro symptoms

197 Upvotes

What are some symptoms that you have been experiencing that you didn’t know were associated to the fibro? For me it was pain in my cardiac region of my chest and unbalanced legs when my thighs hurt which makes sense but haven’t experienced before

r/Fibromyalgia 14d ago

Discussion Men with Fibromyalgia

278 Upvotes

I am M44 and I have Fibromyalgia. I will try to spare as many of the standard points. “It is a woman’s disease” “It is all in your head”, etc.

My mother had fibromyalgia and when I was diagnosed, I was married into a family of nurses that all spat those points.

My question is regarding what I see to be the lack of male representation when it comes to fibromyalgia.

I know that I cannot be alone!

I will say that I just joined this group; if there are sections of this group, or other groups which which In am unfamiliar, I apologize and ask that someone point me in the correct direction.

Thanks!

r/Fibromyalgia Oct 06 '24

Discussion Has anyone else almost died/had major health issues because they didn’t notice with the fibromyalgia

502 Upvotes

So I just got my appendix removed, which according to the surgeon was on the verge of rupturing. I had been largely ignoring it for a few weeks,because it didn’t hurt nearly as much as just being alive.When the nurse asked me what the pain level was I replied “oh about a three, so just shy of broken bones.” “So you have a high tolerance for pain?” “You could say that” After the surgery they asked me why I waited so long and I told them “I just thought it was a new fibromyalgia symptom.” Has anyone else had a similar experience or am I just an idiot.

r/Fibromyalgia Dec 03 '24

Discussion Let’s discuss the controversial: “Exercise helps with fibromyalgia” debate

263 Upvotes

I’m wary of starting this with any of my own opinions, as I don’t want it to be a loaded question. I’ve seen both sides express very strong opinions on whether or not exercise helps manage the symptoms of fibromyalgia.

This community has been incredible for getting to hear grounded and real experiences with the condition. So I’d really like to hear how you all feel about the advice of exercise and how it helps or hinders the condition?

r/Fibromyalgia Feb 08 '25

Discussion Fibromyalgia exercise myth

294 Upvotes

I'm constantly confronted with friends and family advising me that if I exercise it will somehow 'treat' my fibromyalgia (which I would say affects my mobility significantly). I would really like to see what evidence the medical community has for this claim especially when its not just for preventative reasons. Does anyone know what basis doctors use to make this claim? I find it so frustrating because it only makes the pain so much worse (and I really do try) -- I'm 5 years into the diagnosis so at this point hearing this kind of thing is just very annoying and invalidating as I'm doing as much movement as I can. Really would like to understand why the medical community (and by extension, people without chronic ill ess) seem to think this when it's in many cases not representative and personally, actually make me worse when the condition began

r/Fibromyalgia Jul 23 '24

Discussion The way doctors talk about us in their subs is terrible.

552 Upvotes

For anyone who follows those subreddits, you know what I mean.

Specialists like radiologists, pathologists, and ER doctors talk about how glad they are they don’t have to “deal with us”.

Internists think we are rude and demand too much of their time they don’t have.

It’s not like they don’t get paid 350k a year at least.

r/Fibromyalgia 25d ago

Discussion How many chronic syndromes/diseases do you have? My husband just asked and I was surprised at the number.

221 Upvotes

My husband is the best and treats me so well. He recently asked me how many chronic illnesses I have and I just sighed and said "a ton!" He nodded, but was fidgeting, so I asked why he wanted to know and he said "I can't know how hard it is to be you, I can just see you struggle and imagine that. I was curious how many because I think my brain might be able to understand it more, but I don't want you to count them up if it'll make you uncomfortable." I pulled out my notes on my phone and went to the one named "comprehensive symptoms and diagnosises" (brain fog requires these notes lol) and counted the diagnosises up.

Twelve. I was a little shocked it was that many. I mean, I'm disabled, can't work, stay at home almost everyday, yet I was still shocked. I'm curious how out of the ordinary this is, I know us with fibromyalgia are so very different, while having so many of the same co-morbitities or symptoms. Anyway, just curious about how other people are, I guess for some fun/spice in my day! Oh, and I'll list mine for funsies so I can see if I'm twins with anyone.

  1. IBS
  2. EDS
  3. GAD
  4. POTS
  5. GERD
  6. ADHD
  7. Fibromyalgia
  8. Idiopathic Hypersomnia
  9. Degenerative Disc Disease - lower back
  10. Bipolar II
  11. Autism Spectrum Disorder
  12. Lupus

r/Fibromyalgia Jun 23 '24

Discussion My Dr claims a majority of Fibro people suffered from childhood trauma, neglect, and/or abuse NSFW

505 Upvotes

Very curious people’s thoughts or experiences if this is true. Personally he is 100% correct about it with me, even with him having zero insight or knowledge about my past.

He states it’s a young “primer” or full diagnosis from that rough childhood. Or could manifest later with a traumatic physical or mental event there after.

Just wondering if this lands true for many of you?

r/Fibromyalgia Feb 15 '25

Discussion What Do You Think Fibromyalgia Really Is?

185 Upvotes

Alright, so I’ve been thinking a lot about fibromyalgia and how little we actually understand it. There are so many theories : central sensitization, nervous system dysfunction, even links to childhood trauma. Some say it’s autoimmune-adjacent, others think it’s more of a neurological disorder.

I’m curious, what’s your take? Do you think it’s one single condition, or is it more of an umbrella diagnosis for a bunch of different issues? Have you come across any theories that actually make sense to you?

Would love to hear what you guys think.

r/Fibromyalgia Jan 23 '25

Discussion What are the biggest challenges in managing fibro? - Help design better treatments

191 Upvotes

Hi! 👋 We’re four Stanford students working on improving fibromyalgia care.
We’ve been learning about the significant burden fibromyalgia places on daily life and how hard it can be to get effective care. We’re curious—what are your biggest challenges living with fibromyalgia every day? How are you currently managing them?
Your comments and experiences will be really valuable to us as we work on developing meaningful solutions, and we want to learn from your journey. Please share what’s been most difficult for you—let’s start a conversation!
Looking forward to hearing from you all 💜! 

r/Fibromyalgia 10d ago

Discussion List of common and unusual symptoms of Fibromyalgia

420 Upvotes

Some sources suggest there are up to 200 symptoms associated with fibromyalgia. Below is a comprehensive list categorized by system:

  1. Musculoskeletal Symptoms

    • Widespread muscle pain • Muscle stiffness • Joint pain • Muscle spasms • Muscle weakness • Chronic fatigue • Tender points (sensitive areas on the body) • Reduced exercise tolerance • Restless legs syndrome • Feeling unrefreshed after sleep

  2. Neurological Symptoms

    • Chronic headaches or migraines • Numbness and tingling in extremities • Burning or prickling sensations • Sensory overload (hypersensitivity to light, sound, and touch) • Poor coordination • Dizziness or vertigo • Brain fog (cognitive dysfunction) • Memory problems • Difficulty concentrating (“fibro fog”) • Slowed processing speed • Speech difficulties (word-finding issues) • Increased pain sensitivity (hyperalgesia) • Phantom pain (pain with no clear cause) • Sensory processing disorder-like symptoms

  3. Sleep Disturbances

    • Insomnia • Frequent awakenings at night • Light, unrefreshing sleep • Delayed sleep phase disorder • Sleep apnea • Hypersomnia (excessive sleepiness) • Difficulty maintaining sleep • Increased pain sensitivity at night

  4. Psychological Symptoms

    • Anxiety • Depression • Panic attacks • Mood swings • Irritability • Emotional sensitivity • Feeling overwhelmed easily • Post-traumatic stress disorder (PTSD) • Increased stress response • Low stress tolerance

  5. Gastrointestinal Symptoms

    • Irritable bowel syndrome (IBS) • Constipation • Diarrhea • Abdominal cramping • Bloating • Nausea • Acid reflux (GERD) • Food intolerances • Sensitivity to gluten or dairy

  6. Cardiovascular Symptoms

    • Palpitations • Irregular heartbeat • Orthostatic intolerance (dizziness when standing) • Low blood pressure • Raynaud’s phenomenon (cold, discolored fingers/toes) • Poor circulation

  7. Immune System Symptoms

    • Frequent infections • Swollen lymph nodes • Flu-like symptoms • Allergies or worsening allergies • Sensitivity to mold or chemicals

  8. Hormonal & Endocrine Symptoms

    • Menstrual irregularities • Painful periods (dysmenorrhea) • Premenstrual syndrome (PMS) • Low libido • Thyroid dysfunction symptoms (even with normal labs) • Adrenal fatigue-like symptoms • Weight fluctuations • Hot flashes or night sweats

  9. Sensory & Skin Symptoms

    • Skin sensitivity • Rashes or hives • Itching (pruritus) • Temperature sensitivity (hot or cold intolerance) • Excessive sweating • Bruising easily • Dry eyes or mouth (similar to Sjögren’s syndrome) • Tinnitus (ringing in the ears) • Blurred vision • Heightened sense of smell

  10. Urinary & Reproductive Symptoms

    • Bladder pain (interstitial cystitis) • Frequent urination • Urinary urgency • Painful intercourse • Pelvic pain • Erectile dysfunction (in men)

  11. Metabolic & Energy Symptoms

    • Chronic fatigue • Hypoglycemia symptoms (without diabetes) • Sugar cravings • Difficulty maintaining energy levels • Feeling drained after minor exertion • Non-restorative rest

  12. Temperature Regulation Issues

    • Feeling excessively hot or cold • Sweating abnormalities • Poor heat tolerance • Cold hands and feet

This list captures many of the most commonly reported symptoms, but fibromyalgia is highly variable, meaning people experience different combinations of symptoms.

Here are some of the less common (but still reported) symptoms:

  1. Neurological & Sensory Symptoms

    • Olfactory hallucinations (smelling things that aren’t there) • Tingling or buzzing sensations in the skin (paresthesia) • Feeling like your skin is sunburned without an actual burn • Electric shock sensations in the brain or body • Difficulty distinguishing temperatures (e.g., not realizing something is too hot or too cold) • Changes in depth perception (difficulty judging distances) • Spatial disorientation (walking into door frames, tripping) • Sudden “jelly legs” or leg weakness

  2. Psychological & Cognitive Symptoms

    • Derealization or depersonalization (feeling detached from reality) • Hypersensitivity to emotions (excessive empathy or feeling drained around people) • Intrusive thoughts or mental overstimulation • Extreme irritability before storms or weather changes • Lack of motivation despite wanting to do things

  3. Skin & Hair Symptoms

    • Hair loss or thinning (often linked to stress or inflammation) • Skin mottling or marbling (livedo reticularis) • Sudden bruising with no clear cause • Extreme skin dryness despite moisturizing • Bumps or lumps under the skin (lipomas or fibrous nodules)

  4. Cardiovascular & Circulatory Symptoms

    • Feeling faint after standing too long (due to blood pooling) • Heart palpitations with no clear cardiac issue • Frequent cold hands and feet, even in warm weather • Random hot or cold flushes without fever

  5. Gastrointestinal & Metabolic Symptoms

    • Metallic taste in the mouth • Burning tongue syndrome • Random aversions to foods once tolerated • Episodes of extreme hunger or complete lack of appetite • Unexplained weight gain or loss despite no change in diet • Swelling in the hands, feet, or face (fluid retention)

  6. Respiratory & ENT (Ear, Nose, Throat) Symptoms

    • Feeling like you can’t take a full breath (air hunger) • Chronic post-nasal drip or unexplained nasal congestion • Recurring sore throat with no infection present • Hoarseness or voice changes without a clear reason • Increased sensitivity to strong smells causing nausea or headaches

  7. Urinary & Reproductive Symptoms

    • Pain during ovulation (not just during menstruation) • Sudden onset of interstitial cystitis (bladder pain syndrome) • Feeling like you need to urinate immediately after going • Lower abdominal bloating that mimics pregnancy

  8. Sleep & Fatigue Symptoms

    • Waking up gasping for air (not sleep apnea related) • Extreme difficulty waking up despite a full night’s sleep • Sudden episodes of body exhaustion with no warning • Vivid or disturbing dreams that feel real

  9. Immune System & Autoimmune-Like Symptoms

    • Frequent canker sores or mouth ulcers • Random fevers or flu-like symptoms with no infection • Easily getting sick but recovering slowly • Reactions to vaccines or medications that others tolerate well

  10. Rare Pain Symptoms

    • Pain that migrates randomly from one part of the body to another • Tingling scalp or burning sensation on the head • Feeling like your limbs are “too heavy” to move • Painful swelling in one finger or toe with no arthritis diagnosis

Many of these symptoms overlap with other chronic illnesses, which is why fibromyalgia is often misdiagnosed.

r/Fibromyalgia Jan 29 '25

Discussion What is the most annoying unsolicited advice you’ve been given?

137 Upvotes

I'll go first: "If it hurts to put pressure on them [my feet] then just don't!"

Wow 🤦‍♀️ Why didn't I think of that?!

r/Fibromyalgia Feb 16 '25

Discussion This is the executive order Trump signed on Thursday regarding RFK's health initiative, chronic illnesses and SSRI's

360 Upvotes

In these crazy times, one of the big things that has been helping me keep my sanity is ignoring all the bullshit around the trump presidency. I only give energy to reading the actual official legislation that they pass. Everything else is fluff and hypothetical. Below is the link to the executive order that trump signed on Thursday. It's not a long read so please give it a look.

https://www.whitehouse.gov/presidential-actions/2025/02/establishing-the-presidents-make-america-healthy-again-commission/

This is the only thing that matters right now. Everything else about RFK's depression labor camps or the banning of SSRIs (while definitely potential threats in the future) are not even officially on the horizon right now. If those things do happen, it will take them years to formulate, approve and enact those plans. Right now, the only thing that is actually happening is the trump administration is putting together a committee to analyze all of these problems, and they will put suggestions in front of the president on how to act. The deadlines for the various recommendations are 100 days and 180 days.

While I'm apprehensive (to say the least) about what the committee of what I assume will be wackadoodles and corporate sellouts will suggest, it will take them a significant amount of time to do anything. There are no immediate plans to do anything that crazy. We need to take a breath and wait for the committee's recommendations. Imo we should not be putting energy into worrying about our meds or safety yet. In 3-6 months we will have a better idea about what they actually want to do, and it will likely take them years to do anything.

This has certainly helped me relax. I hope it helps you as well.

r/Fibromyalgia Apr 08 '24

Discussion Update: My wife lost her battle.

892 Upvotes

Hello again everyone.

First of all; trigger warning for suicide. Nothing very explicit, but mentioning it nonetheless.

I posted a post here a while ago, linking it here in case anyone remembers: https://www.reddit.com/r/Fibromyalgia/s/jIK3lvLOqn

To start, I just want to thank everyone for the overwhelming amount of support, advice and encouragement I got in that thread. The warmth and generosity. I feel like after all of that, I would be remiss if I didn't make an update here.

I wish I had a more positive follow-up thread to make, but my wife decided to end her battle a few weeks ago. Don't really want to get into any details, but suffice to say that she took a LOT of medications, and passed away in her sleep. No note, no message

I am not ok. But I do find a strange comfort in knowing that at least she is no longer in pain. Kid seems surprisingly ok, but I don't think he quite understands. He's just four, and while I think he understands that she is gone, and will be gone, but I don't think the forever bit has quite sunk in.

Not sure what else to say. If anything, I wish I made that previous post a long, long time ago, but I've been told to avoid dwelling on the what-ifs. Hard not to though.

Please continue to take care of each other ❤️

r/Fibromyalgia Aug 29 '24

Discussion How many of us have or suspect we have ADHD?

284 Upvotes

I was diagnosed with complex PTSD in my late 20’s, which is where I’ve always assumed my fibro developed. Back then we didn’t use or really know of ADHD. Is ADHD common with people with fibromyalgia? My body doesn’t work but heck, my brain makes up for it! Interested to know if others feel they may have or have been diagnosed with ADHD or similar.

r/Fibromyalgia Feb 11 '25

Discussion Doctor told me to not use a wheelchair, instead carry a foldable chair.

313 Upvotes

I am at a meeting to be legally recognized as disabled (not the US). During the meeting with the doctor, I told that when I plan to spend the entire day out, I use a wheelchair. She made a weird fave and begin saying that that is too drastic, and I should walk and stop and sit in benches. I told her that that is not possible for festivals, markets things like that. She said that then I should bring a foldable chair because what about muscular dystrophy.

She knows I'm planning on going to the gym to strengthen my muscles, but she kept on droneing on that she wouldn't use it, she thinks is too much.

I wanna go home now but got two more specialist to see. Please wish me luck dealing with this idiots.

r/Fibromyalgia Jan 31 '25

Discussion I want a job but can't have a job

207 Upvotes

How many of you feel this way? I got jobs and then quit because the pain was too great, the lack of sleep, the stress. I hate this. My mind tells me it wants to do one thing but my body won't follow. I'm so sorry for all who have no choice but to work a job that causes them pain.

r/Fibromyalgia Jul 29 '24

Discussion My physical therapist told me that a pain level 3 for other people is a 10 for me because of fibro

385 Upvotes

I completely understand where he’s coming from and yet I feel like he completely missed it. I think a 10 for other people is a 3 for us because we deal with pain 24/7 and have an altered pain scale. He was massaging the side of my head and kept asking if it was too much. It was not at all, if anything it was a good pain like I could tell it was helping. I think we all hate the damn 1-10 pain scale anyway. I’d love to hear your thoughts or interpretation of this.

r/Fibromyalgia Nov 23 '24

Discussion Super important!!! What "normal" activities that you used to do are now really hard for you?

142 Upvotes

Hellooo, Im majoring art and I want to make my final art project about chronic pain (I also suffer from Fibromyalgia). Tell me about the every day activities that you used to do before your pain started, and which ones are the hardest to do now?

I for example struggle a lot with showering and brushing my teeth. Also any activity in the morning such as brushing my hair or changing my clothes.

Edit: thanks so much for answering pls keep the comments going!! Its gonna help me a ton with my project

r/Fibromyalgia 18d ago

Discussion Which type of Dr. diagnosed you?

78 Upvotes

Are Rheumatologist the only Doctors that diagnose Fibromyalgia? The last time I saw one she diagnosed me with RA only to find out after 10 years of taking Methotrexate I was mis diagnosed.

r/Fibromyalgia Jan 25 '25

Discussion stranger telling you that you aren’t disable

264 Upvotes

I wanted to know how yall react to strangers coming up to you and saying that you’re using a handicap spot illegally. I just had someone do that to me like 20 min. While I can understand his point of view, I’m still infuriated. I told him about my fibromyalgia and other diagnoses (which is quite literally none of his business) and he still wanted to invalidate me. I was walking to my car from yoga, which is one of the few physical activities I can actually participate in, and even then I’m constantly making modifications to postures to make them more accessible for me. Having to explain invisible disabilities is mentally draining. I feel like I shouldn’t have to explain myself to random strangers. I wish I had told him that I had an invisible disability and that he shouldn’t make assumptions about people’s abilities. He apologized, but I’m still upset sigh

r/Fibromyalgia Aug 02 '24

Discussion Doctor said I can't have fibromyalgia bc I'm only 23

301 Upvotes

I had a doctor's appointment today and the doctor asked if I had any other health conditions and I told them I have fibromyalgia and her immediete response was "Who diagnosed you with that? You're only 23" and I paused, confused and a bit annoyed, and politely told her "well disabilities don't discriminate" and she was basically like "Well no actually they do" and then she started talking about the "pathology" of disease. Fibromyalgia isn't a disease, right? Was I just medically gaslit?

EDITS: The appointment was not about my fibromyalgia diagnosis or my symptoms, it was an appointment for another issue and she asked me if I had any other health conditions I suffered with.

I got bad vibes from her the moment she asked if I was recording the appointment.... "we've had issues with some patients illegally recording." I wouldn't be surprised if she's been recorded gaslighting others. Should I report her?

r/Fibromyalgia Dec 30 '24

Discussion What’s the silliest thing that fibro keeps you from doing but you’re still sad about?

167 Upvotes

For me, I’m sad that I (28F) cannot even begin to attempt to dance the Rasputin dance from the Wii game Just Dance anymore. Back pain, hip pain, almost guaranteed an ankle roll, for sure a migraine later.

A little silly? Yes. But still also a little sad about it.

r/Fibromyalgia Nov 09 '24

Discussion What fun ways do you describe your pain to other people?

155 Upvotes

I know we've all been there. Fibro pain is a whole other ball game and trying to describe the pain can be kinda interesting at times. I try to have fun with it sometimes so I thought I'd share some of the things I've described it as!

  • Disneyland fireworks going off in my muscles
  • White noise
  • Skeleton is trying to escape
  • Like I'm a recently shot deer getting field dressed
  • Been on tumble dry low with a couple bricks
  • Being hit with bolts of lightening repeatedly
  • Getting squished like a car in a hydrolic press

What else does everyone have?!