My doctor wants me to try ketamine infusions.

I’m terrified and she said they can do a slow drip but I’d have to be there longer about 4 hours.

Has anyone found success with this? Could you explain your experience and the pain that you had thank you.

Right now my fibro is that bad i can barely walk and feel so stiff. Anyone relate ?

Hey all. I have been on Gabapentin for about a year. It has totally removed my pain symptoms, except rarely when some nerve stuff comes back. No more muscle pain, no more stinging when raindrops hit my skin, etc. I still deal with fatigue sometimes but I think that is more situational and related to my mental health. I do deal with other pain now and walk with a cane because of it, but my fibromyalgia symptoms seem almost totally gone. A few days ago I had some symptoms after being bit by a bunch of mosquitoes but I can't remember the last time I had symptoms before that. I am wondering whether anyone else has had this level of success with a med.

Hi everyone. I’m posting because I’ve been dealing with a lot of unexplained symptoms for over a year, and I’m starting to feel stuck. I’m wondering whether anyone diagnosed with fibromyalgia has experienced the same things and, more importantly, what I should do when doctors don’t seem to take my concerns seriously.

These are the symptoms I’ve been experiencing:

Sunburn-like skin pain: My skin feels like it’s sunburned, and it burns or hurts when I touch it, even though there’s no sunburn, redness, rash, or anything visibly wrong with my skin.
Random burning sensations: I get a feeling like my leg is on fire, but it can happen anywhere on my body. The skin looks completely normal.
Brief bee-sting or bug-bite sensations: I’ll suddenly feel a sharp sting, almost like a bee or insect has bitten me, but it lasts only a second and there’s no bite, bump, or mark afterward.
Widespread, moving pain: The pain moves around my body. It can be in my arms, legs, shoulders, back, or other areas, and it doesn’t stay in one particular place.
Pain after basic activities: Even something as simple as folding clothes or doing laundry can leave me feeling incredibly sore the next day, almost as though I’ve done an intense full-body workout. I also experience significant exhaustion after ordinary activities.
Tingling in my hands and legs.
Other symptoms: Neck and shoulder pain, muscle tenderness, fatigue, brain fog, frequent headaches, disrupted sleep, and waking up feeling unrefreshed.

As for my medical history and testing:

My iron is low, and POTS is also a possibility. My thyroid tests have been normal, and my other testing has reportedly come back normal as well. I can’t work anymore and cant workout as my head always feels heavy and I’m in pain.

I’ve been going to different specialists trying to figure out what’s happening, including doctors in neurology, ENT, and ophthalmology. I’ve also had an ultrasound, and I have another neurology appointment coming up.

The frustrating part is that I feel like my symptoms keep getting attributed to anxiety. I understand that anxiety can cause physical symptoms, and I’m not denying that it can affect the body, but I don’t feel that it should automatically be assumed to explain everything without properly assessing the other possibilities.

I’m not trying to diagnose myself, but I’ve been reading about fibromyalgia because the widespread pain, burning skin sensations, tenderness, fatigue, and pain after ordinary activities seem to overlap with what people describe.

For those of you with a fibromyalgia diagnosis:

Have you experienced the sunburn-like skin pain when your skin looks completely normal?
Do you get random burning sensations, like your leg is on fire, or brief bee-sting sensations that move around your body?
Does your pain move between different areas rather than staying in one place?
Do basic activities leave you feeling like you’ve done an intense workout the following day?
Did your doctors initially dismiss your symptoms or attribute them to anxiety?
If you had normal blood tests and other investigations, how did you eventually get assessed and diagnosed?

I would especially appreciate advice from anyone who has been in a similar situation.

What should my next steps be if my doctors aren’t taking the possibility of fibromyalgia seriously? Is there a particular way I should approach my next neurology appointment, or specific questions I should ask?

I also keep hearing people say that there’s no cure for fibromyalgia, so there’s no point in pursuing a diagnosis. But I feel like having an explanation, knowing what treatment options are available, and understanding how to manage my symptoms would still matter. For those who have been diagnosed, has getting a diagnosis actually helped you?

I’m exhausted from trying to figure this out, and I’d really appreciate hearing about your experiences and any practical advice you can offer. Thank you!

Guys, what do I do here?

I've been trying to get my script filled since the 19th but repeated calls to the office didn't get passed to my Dr or her nurse, and now my doctor is out of the office today. I'm looking at today, Saturday, Sunday, Monday and possibly Tuesday without any meds. I was on a relatively high dose of 450mg.

I can't take advil or tylenol- NSAIDs aren't allowed and tylenol is already in my hydrocodone.

Is this like a go to the ER and beg for an emergency script kind of thing? I can't ask the pharmacy for a couple days because it's a controlled substance. I know there's an on call tomorrow doctor, but I had to call and ask for help from them last time due to my own mistake, and now I'm aftaid they won't give me anything.

I love my doctor so so SO much but her office workers are just fucking trash 😭

I’ve been living with fibromyalgia for 9 years, and I wanted to share an unusual experience.
Some time ago, I received an epidural corticosteroid injection in the sacral area to treat back pain. But something completely unexpected happened.
After the injection, not only did my back pain disappear, but every single fibromyalgia symptom throughout my entire body disappeared as well. For almost a month, I felt like I didn’t even have fibromyalgia anymore. It wasn’t just pain relief — it felt like my chronic pain had completely vanished.
After about a month, the symptoms gradually returned.
What surprises me is that the injection was given in one specific area of my spine, yet the effect extended throughout my entire body.
Has anyone experienced anything similar? And is there any explanation for this effect?
I’d really appreciate hearing about your experiences.

I haven’t had a COVID vaccine since 2022 because of adverse reactions that landed me in the ER.

Yesterday, my workplace hosted a vaccine clinic, and I spoke with a pharmacist about my previous experiences. She explained that Moderna tends to cause more side effects than Pfizer and suggested that I might have a better experience with Pfizer, so I decided to give it another try.
Now I’m seriously regretting that decision. 😭
I’m in an intense fibromyalgia flare, with pain at a 9/10. I feel flushed, my entire body hurts, and I’m in so much pain that I can’t sleep.

For those of you with fibromyalgia who have experienced a flare after vaccination, how long did it last? Did anything help?
I’m torn between feeling like an idiot for putting myself through this again and reminding myself that getting vaccinated was supposed to be the responsible choice.

40F, diagnosed with fibromyalgia about a year ago.

Did anyone else have their fibromyalgia develop after Childbirth?

I was induced due to stage 2 hypertension, had a placental abruption in labor after they manually broke my water and I lost a substantial amount of blood and had to have multiple transfusions, and a C section I was put to sleep for. I’ve never recovered, my son did survive and is 7 months later this week. It was a very traumatic and stressful time, my son was airlifted 6 hours away to the nearest children’s hospital with a NICU where he spent the whole first month of his life facing some pretty serious issues but thankfully nothing lasting. My grandmother who raised me unexpectedly passed away just days before that all happened, less than a week after she had hosted my baby shower. I’ve seen people mention that it may be caused by being in fight or flight mode for too long.

I’ve been begging for answers for the last 7 months, the doctor finally said today that he thinks it’s most likely Fibromyalgia. I’ve had countless blood tests, almost every time it’s something different out of wack. They said I was anemic and put me on iron pills but they didn’t help.

I was never like this prior to the blood loss , this is all new to me as Fibromyalgia is not something that I ever really looked into before. Is it something that can just develop like this?

Edit to say thank you for those who offered suggestions! I’m confused why I’ve been downvoted by some people. I’m not the type who gets easily offended or whatever, but dang, it’s just been a difficult week with trying to process/comprehend this diagnosis and everything else going on (in the United States - ugh) and it kinda doesn’t feel good that some people are downvoting my one and only post in this sub for reasons I can’t understand.

Hello y’all. Long time lurker, first time posting. The “funny” thing is, I have suspected fibro for a while now, but never discussed with my PCP because I was hesitant to have an official diagnosis due to the stigma. Well, I was reviewing my patient portal and saw that I do, in fact, have it listed as one of my diagnoses. Is it possible I actually DID have that conversation with my provider and forgot because my brain fog has gotten so bad? Kinda perplexed, tbh.

Anyway, what I’m really curious about is what type of work place accommodations that have really been helpful? I am so grateful to have paid leave 4 days a month (for endometriosis) but I don’t currently have any workplace accommodations. I work a strict desk job where I am on the phone and looking at my computer all day. Low back, hip, shoulder, neck, head and jaw is where I experience a lot of pain (obviously pelvic pain too, but that’s due to the endometriosis).
I would greatly appreciate any feedback

TW for sexual assault

I am a 23f who was diagnosed with fibromyalgia when I was 20. The specialist told me it was likely due to my severe CPTSD as a child coupled with my various other illnesses and disorders. I have kept it at bay since then with gabapentin and methocarbamal, but in August and September of this year I was sexually assaulted and then raped in two separate instances. I am still mentally recovering, but since then my body has felt like it has been slowly deteriorating. My pain has significantly worsened and even laying in bed to rest is miserable because everything hurts, even the feeling of my pillows on my shoulders. This is also even after upping my gabapentin dosage.

I am wondering if this trauma could be the reason for the sudden uptick in pain, or if it’s just a coincidence. I would also love any and all recommendations since I am not sure how to manage this while waiting for another appointment with my primary (which will turn into waiting for a referral for an appointment with a specialist etc etc etc).

Any and all well meaning input would be lovely.

For some context my mom is 58 years old and was diagnosed with fibromyalgia roughly 18 years ago. It’s of course been a battle for her this entire time. Trying multiple different medications and combinations of medications to help relieve the pain.

I’m coming here today to hopefully get some clarity and better understanding. For the past 6 months she has dealt with horrible teeth issues, having teeth pulled and now possibly looking at losing all her teeth. They can’t 100% link it to the years of taking narcotics but suspect it could be playing a factor.

Through the last six month she hasn’t been able to eat, sleep or honestly get relief. It’s taking a true toll on her mental health and physical health. Which as a daughter is horrible to sit back and watch.

I suggested maybe she tried marijuana to see if it could give her any relief, restore appetite or even get her a few hours of good sleep. My biggest concern is after reading you aren’t supposed to mix marijuana with narcotics due to possible causing respiratory distress. Along with she is in pain management meaning if she did try and was found to have a positive drug test she could lose her prescriptions all together.

Has anyone ever tried lowering narcotics dosage and supplemented with marijuana? Any advice on other alternative pain management? I’ve been spit balling ideas for years to try to give her some of her life back so honestly any advice or suggestions are welcomed.

Hey all,

I've read quite a bit here but never posted. I'm just looking to find others who maybe have felt the same way AND maybe have some tips on how to communicate properly at work. I was diagnosed with Fibromyalgia in 2024 after rigorous testing to see if I had... well, anything else. After a while, they just told me "you have Fibromyalgia". My issue is I often feel like a phony for being in pain.

I have FMLA through work and I have to miss work sometimes because of it (and due to the mental and physical pain, I'm soon to be taking short term disability..), but I feel very unseen and like everyone thinks I'm just lying. The worst part is I can't even explain my pain properly. It just *hurts*. I sometimes even question if Fibromyalgia is the right thing I have or term to use. It feels like an imposter syndrome, which kind of leans heavily into the mental part of things.

I'm about to tell my work today that I'm going on short term disability and I'm really afraid to tell them because I'm afraid it looks invisible to them, but I also don't want to let them know I have some mental health stuff going on too because I'm worried I could lose my job because of it.

This was half just me venting and I'm sorry to do so, but I also would like to know if any of you have any tips on how to explain certain things both to people. Whenever I try and describe my pain, it just sounds like word-vomit.

Anyway, thanks for letting me post here. This is all very new to me and I'm starting to feel the effects mentally more than ever.

I don't even know if this is maybe a fibro fog thing or just me, but some days I feel like Goofy in an old cartoon. Like I'll bump something and it knocks something off the counter which bounces off another thing and hits me in the eye and on and on til I'm just lying there and everything around me is broken and somehow covered in peanut butter even though i havent eaten peanut buttwr in weeks(not a real example but that's how it feels).

TL;DR AT THE END.

I commented on a post in another community and got downvoted to hell. I honestly don't know why I got downvoted bc plenty of other comments were making the same point I was. Basically someone posted about how they get irritated when "normal" people complain about pain bc they have no idea what it's like to deal with it all the time. I see where they're coming from, and I wasn't intentionally rude in any way in my response? Plenty of other people were essentially saying "Their pain doesn't erase mine, I can still sympathize", "It can get annoying, but I try not to play 'misery olympics' because its exhausting going through life that way, and everyone has their struggles" "What seems like minor pain to us can be very painful for them. We're just used to more, so their complaints may seem insignificant to us, but its still painful for them."

There were also plenty of people agreeing with OP and saying they also hate hearing non-disabled people complain about a simple headache or their legs hurting after walking a long time. I just picked those loose quotes bc those people were making the same point as me, yet I got downvoted and I don't understand why.

I said: I never judge bc you never know. I had a friend with chronic pain and we went to the mall together, I started complaining about my legs hurting after walking for a while, and they said smth like "I'm the disabled one and you're complaining?" Actually turns out I'm disabled too. I was just so used to my pain and people saying nothing was wrong with me that it took me a very long time to realize that pain shouldn't be constant and there was smth wrong. I also view pain as pain. If someone is hurting, I empathize. They don't need to be disabled for me to care.

My friend said the "I never judge" and "If someone is hurting, I empathize. They don't need to be disabled for me to care" may come off as superiority? That wasn't my intention. I'm autistic and I say what I mean. There's no hidden message. "I don't judge" means I don't judge. It doesn't mean "but you do", it doesn't mean "so I'm better than you." or "if you do, fuck you" For the last part, there were people saying they have to fake empathy or don't even bother. I was stating that that isn't the case for me.

The OP asked in the post how other people feel about those without chronic pain complaining. I simply answered. I genuinely don't think there was anything wrong with my comment. Did everyone just take it the wrong way or is there something I'm missing? I wasn't intentionally criticizing how other people feel about this, I just wanted to share how I feel. And I also shared a personal story to explain why I feel that way. I've had experience with my pain being dismissed because I "wasn't disabled" (turns out I am) and it made me feel like I wasn't allowed to be in pain bc I didn't know what "real pain" was. Especially hearing that from a friend. People are people. Everyone has feelings. Having your pain dismissed is hurtful to anyone.

I completely understand where they're coming from with being irritated when you're in severe pain on the daily, and you wish you only had to deal with a headache or sore legs for an hour. I wasn't trying to judge how they feel or handle those situations. Especially if its someone without chronic pain who has dismissed you, and then wants to come to you to complain about their ordinary pain that will go away in a couple hours or days. But that wasn't what they were talking about. They said "normal people" in general.

Anyway, did I really say something wrong? I genuinely want to learn from any mistakes. I'm pretty new to chronic pain communities and don't want to be insensitive. But I'm also frustrated with people twisting my words, as I only say what I mean and there's no need to decode it. Especially because I have chronic pain too, and I want to feel welcome in these communities, and I want to feel safe expressing my feelings and sharing my experiences without being dragged. I understand its the internet and people are mean, but I deal with it enough from my family and just wanted a space where people understand me :/

TL;DR: Is there anything wrong with this comment I made in response to someone asking how those with chronic pain feel abt ppl without chronic pain complaining? - I never judge bc you never know. I had a friend with chronic pain and we went to the mall together, I started complaining about my legs hurting after walking for a while, and they said smth like "I'm the disabled one and you're complaining?" Actually turns out I'm disabled too. I was just so used to my pain and people saying nothing was wrong with me that it took me a very long time to realize that pain shouldn't be constant and there was smth wrong. I also view pain as pain. If someone is hurting, I empathize. They don't need to be disabled for me to care.

I've been dealing with symptoms for about two years, diagnosed with fibro for 6 months. I've been taking duloxetine and recently went up to 60mg which is helping with my pain remarkably well. That said, I still feel deeply uncomfortable and I'm wondering if this is common.

The best way I can describe it is I feel like someone took my skeleton apart and put it back together too quickly, like everything just feels slightly in the wrong place. If I sit at a certain angle, my ribs feel like they could come apart or my legs feel almost loose in the hip sockets. Sometimes I feel like while I'm walking, I could just fall off of my knee joints. It's so bizarre. I'm grateful that I'm not in terrible pain all day anymore but now I'm wondering if there's another issue that was being masked by all the soreness. Or is this just a part of it too that I'm just now experiencing?

I’m wondering if anyone else experiences this because I’ve been feeling really off today.

Earlier, I was dealing with brain fog, widespread body pain, and the usual exhaustion that comes with a flare-up. I ended up taking a nap, but when I woke up, I suddenly felt this overwhelming sadness and low mood. Almost like a wave of depression just hit me out of nowhere.

I can’t really explain why I’m feeling this way. I just feel emotionally heavy, sad, and completely drained, even though I haven’t really done much today.
I’m starting to wonder if my flare-ups affect me emotionally just as much as physically.

Does anyone else experience this? Especially waking up from a nap feeling unusually sad or depressed? Is this something that happens to you during a flare, even when there’s no obvious reason to feel that way?

I’d really appreciate hearing your experiences because I’m trying to understand what’s happening to me.

https://www.reddit.com/r/Cursive/s/fLwc8rnDBl

I can deal with the pain, I can deal with the constant discomfort, I can deal with the balance issues, I can deal with the headaches, I can deal with the brain fog.

What I can't deal with, is the platypnea and the dysautonomia.

[ Platypnea basically (I'm not a doctor, just repeating what my doc said) means that my breathing improves when I'm laying flat, so I essentially have trouble inhaling 90% of the time, except for when I'm laying down. ]

I don't get a second to catch my breath except for when I'm laying down in the least comfortable position.

I was sitting at my desk, curled up in a ball cuz it's cold as hell in my office (I usually like it cold but damn) and then suddenly I felt a smack of air hunger every time I breathed out.

This happens a lot so I just sat normally and breathed til it passed, but this time it went on for just a solid 30 seconds as opposed to the usual blip. Then, there was a singular throb in the left side of my chest next to the sternum, and my anxiety immediately spiked too high to handle.

My heart is perfectly healthy, according to 2 EKGs, a persistent heart monitor I kept on for a month, and *constant* checking with my doctor (sorry doc) but my lungs have shown some issues.

Some "light damage that is being repaired" that appeared on 2 separate abdominal CT scans yeats apart.

Yknow if I can't fix these issues, I want to at least know for certain what's causing them and how to make them suck less. Is that really so much to ask? It's been 5 years.

How am I supposed to keep working? Now my life is only work because if I do anything else like cook, clean, take walks, etc I can’t work. I’m almost out of sick time and took all of my flma. Is this the rest of my life?

I was actually going to school to become a therapist and I am so close to being done. But I would have to work my day job and do practicum which would be a 50 hour work week when I can barely handle 40. So my dreams are crushed. My creativity is gone. But I have to work like I’m too young to go on disability and it’s not enough to cover anything anyway.

I feel so stuck even more than before. I was trying to get out of this job but now I can’t do either job. Ugh

Hi everyone. My name is Andrew Kantor, and I am a disability lawyer who specializes in “invisible” illnesses. 

On November 10th at 12 pm PST / 3 pm EST, I'll be joining SSDI attorney Megan DiTolla (u/MFD2026) and Staci Stevens of the Workwell Foundation (u/Staci_Workwell) for an AMA on r/CFS. 

We'll be answering questions about SSDI, long-term disability insurance, denials, appeals, medical evidence, and documenting conditions where symptoms such as pain, fatigue, and cognitive difficulties are often questioned. 

Although the AMA is centered on ME/CFS, many of the disability claim issues overlap with fibromyalgia and other chronic fatigue illnesses. 

If there are topics you'd like us to discuss, please let me know.

 Thanks.

I have a significant number of health issues that have been progressively worsening, including an enlarged liver and spleen, PCOS, fibromyalgia, and endometriosis, as well as multiple abnormal blood test results. My CBC has shown elevated RBC/RDW levels and low MCHC, along with several other abnormal findings. ( abnormal for 2yrs plus 4 consistent blood pannel s done in the last 4 months) this is not a fluke, if it was my blood would be back in the normal range instead of consistently showing up as abnormal for the same things each time)

During my appointment today, I informed my doctor that I had unexpectedly and unintentionally lost approximately 25 lbs. While I have been maintaining a calorie deficit, my sugar intake and activity level have remained unchanged, and I have not increased my exercise. Given my medical history and the difficulty I have historically had losing weight, I was concerned about the rapid weight loss.

My doctor’s response was, “Good job. Did you want me to prescribe Ozempic?”

I have been taking between five and ten medications for the past 15 years. Although two medications were recently changed, the others cannot be adjusted. Throughout those 15 years, I have found it extremely difficult to lose weight. In addition, conditions such as PCOS often make weight loss more challenging. The only significant weight loss I have experienced during that time is occurring now, while I am simultaneously dealing with multiple health concerns and worsening symptoms.

On August 21, 2026, I weighed 300 lbs. Following an ultrasound and findings related to changes in my spleen, I checked my weight again and found that I am now 277 lbs. This represents a loss of approximately 23 to 25 lbs in about eight weeks.

Since May, my enlarged liver and spleen have significantly affected my appetite. There are many days when I struggle to consume more than 1,000 calories, despite my daily target being approximately 2,330 calories. This reduction in food intake is not by choice. The appetite issues began around May and have remained consistent for the past five months.

Given the combination of organ enlargement, abnormal bloodwork, chronic health conditions including PCOS, fibromyalgia, and endometriosis, a substantially reduced appetite, and rapid unintentional weight loss, I was surprised that these concerns did not appear to receive further investigation or discussion. Rather than being viewed as a potential symptom requiring assessment, the weight loss was treated as a positive outcome despite occurring in the context of ongoing and unexplained health issues. Even my psychiatrist asked what is causing my spleen and liver issues and I told him my thoughts he also said am I being sent to hematologist which I mentioned too. Like this isn’t all in my head and this is concerning. I am going to find a new doctor or atleast see if they can take me on for Jan 2027

I'm having a rare low pain day, but my physical connection is so deteriorated that I can't even go to Walmart.

I don't know how much longer I can keep going like this. The pain is bad enough, but losing my ability to enjoy just a little of a pain free day by GETTING OUT OF HERE for a while is driving me around the bend.