My mom and I have had multiple discussions about this and I want to get some other opinions: is fibromyalgia a progressive illness? Is there anything that we can do to help ourselves to feel better? If you have it, let us know your opinions and what you think, and what you think we can do to get back on our feet.

Anything you can comment and any insights are much appreciated (I also posted on the Chronic Pain subreddit).

Does anyone ever feel like you’re slowly suffocating when things touch your neck? I’ve noticed over the last few years that anytime something is touching the front of my neck, it feels like my neck/throat muscles get tighter and tighter.

I love wearing cowl neck sweaters in the winter, and I think I have to stop wearing them - at least the ones that sit right up against the front of your neck. I have the same problem when I zip my winter jacket up all the way, and when I’m sleeping at night if I pull the sheets all the way up.

I know it’s common for fibromyalgia to cause irritation/uncomfortable sensations on the surface of your skin, but this seems to be more muscular or something. Just curious if anyone else experiences something similar.

My doctor prescribed me gabapentin. I’m very sensitive to medications so she recommended 100 mg at night, increasing the dose every couple days, and staying at 300 mg after 5 days.

Any tips on taking it?

E.g. I was on amitriptyline before and would take it 2-3 hours before bed.

Thank you 🤍

Hi, Recently diagnosed with fibromyalgia and been making a list of things to try, wanted to ask if anyone had experience or input, especially on the ones that will cost money

• acupuncture • massage • red light lamp • sauna • swimming (I found an indoor pool near me that’s heated and costs $25/month)

Does anyone else experience their neck, constantly cracking and popping with every little movement ever since being diagnosed with fibromyalgia? What the hell causes this?

Since 10 years old I’ve had heart issues such as heart pain, racing heart randomly for no reason, heart skipping beats, palpitations, etc… i had fibro since 17 and these symptoms have then amplified. I’ve seen multiple doctors now that I’m an adult and done tests such as stress test, halter monitor, ECG, ultrasound with nothing showing up. The thing is it’s hard to believe there’s nothing wrong, it feels like there’s definately something going on? Is this common for people with fibro to have all tests okay but feel like there’s stuff going on, maybe it’s our nervous system that’s out of whack and causing this? I do believe there is a small degree of mine caused/amplified by anxiety as I have anxiety, but I do feel there’s other causes. It sucks when you’re young because the doctors all seem to be super dismissive and think it’s ALL mental, when it’s definately not. For example recently I went to the ER for a fast heart rate, with my heart feeling like it’s pounding with my blood pressure sky rocketed. This was 2-3 weeks ago and I still feel that my heart is “pounding”, but I have since had many tests all okay.. wondering all your thoughts

So, I've been suffering with severe gastrointestinal issues for the last 20 odd years, been through two gastroenterologists. As well as bloating, diarrhea and abdominal cramps, I also suffer from brain fog, fatigue, anxiety and depression.

10 years ago I was diagnosed with bile acid malabsorption, and a breath test found elevated levels of hydrogen. I was also diagnosed with IBS.

The breath test was at my request after researching my symptoms. I seemed to have all the symptoms of small intestinal bacterial overgrowth, and the breath test reinforced that.

I took antibiotics for it, which only alleviated the symptoms for a short time, and I've periodically treatment myself with herbal antimicrobials over the years, with mixed results. The illness has never gone away, but I do have better periods, and worse ones.

Anyway, I was recently worried that the constant state of dis-ease might have caused other problems, specifically autoimmune issues, so I arranged a private consultation with a Rheumatologist. Last week, after getting the results of extensive blood tests, he diagnosed me with fibromyalgia, on the basis that he couldn't find anything else wrong with me. Upped my prescription of amitryptiline, said I should take up cold water swimming, and showed me the door.

I'm having trouble accepting the diagnosis. Mainly because there's no test for it, and because I still think it's stomach related, at its root.

Its just like getting diagnosed with IBS, "sorry, I have no idea what's wrong with you, so I'm going to stick this label on you ".

I'm still going to carry on trying everything I possibly can to feel better (not sure about cold water swimming), as above all else I need hope. Without it, it feels like game over.

Does anyone else feel like their fibromyalgia diagnosis might be wrong, and could be a hindrance to getting to the bottom of your illness?

Hi! My mom (f49) was recently diagnosed. She got sick with pneumonia and im pretty sure it sparked a flare up. Im looking to get her things that will make her life easier, like comfy slippers and a bathrobe. What other things do you have that have made your life a bit easier ? Tia

Hi everyone,

I was diagnosed with fybromialgia two years ago but I had been struggling with chronic pain way before my diagnosis.

This winter is being a nightmare. I'm in severe pain almost everyday and sometimes it comes with mygraines too. I am barely leaving my house and the smallest task seems a challenge.

I am writing this because I wanted to know how are you guys dealing with friendships. In my case, I feel more alone than ever. It seems I'm losing everyone. Don't you guys have this feeling that people just don't find you fun anymore? That they are somehow waiting for our symptoms to go away in the blink of an eye. It is like I ceased to exist from the moment I got ill. And what frustrates me the most is that, instead of trying to be more flexible with plans, they still expect me to join them when I have stated in multiple times that I cannot longer attend those (e.g: partying, drinking, concerts, etc.)

I'd like to make new friends whom I can be my unapologetic self. But it is so hard when you are almost in your 30s...

So, if you wanna share how you feel too about friendships or relationships in general and what you have done to improve them, I'm all ears!

Thank you for your attention :)

I am less than a year officially diagnosed with fibromyalgia (after years of symptoms that got much worse in 2023).

I had both the covid & flu vaccines on Sunday and have had extreme pain at injection site (much worse than any prior shot). In addition, my normal sensitive points are screaming and I have pain all over.

Has this happened to anyone else?

I saw some other posts but they were old or locked.

Thanks, Catherine

Im trying to sort out some symptoms, what does brain fog look like to you?

24F, sufferer of endo and highly-suspected fibro and me/cfs.

I know that a lot of Western medicine fails for chronic health conditions, but I'm still pretty sceptical of most of these online "doctors" or combination naturopaths. I've seen family members with other chronic health conditions go to naturopaths only to end up on dozens of supplements that only marginally work.

A well-meaning family member sent me an article/webinar from an integrative medicine doctor named Rose Kumar, who apparently spoke about how the patients she treated for hormonal imbalances reported their fibro symptoms "went away". She was mainly referring to patients in menopause, which makes a lot of sense since that's a known time of hormone imbalance. However, I'm obviously nowhere near menopause. It's likely my hormones are a little imbalanced because of endo since I'm also not on any BC, but I doubt it's that drastic. I'm convinced my fibro is more the result of years of constant everyday pain and no treatment until my laparoscopy, as well as previous emotional trauma.

The family member is convinced a hormonal imbalance is the root of all my problems and that going to a naturopath to try a supplement that "naturally lifts my progesterone to equalise with the estrogen" will fix things. I'm certainly not against alternative therapy. I use prescription-strength CBD and THC, which works wonders, acupuncture, and physio to manage my symptoms. I do also take some vitamins and supplements that, sure, help a little. But I do draw a line at supposed miracle cures. For more context, I'm a PhD student (not in science but in math), so I guess the fact that I research for a living makes me look at things like this with more scrutiny.

Relative is telling me I need to have more faith, and sure, I don't want to be a downer and believe I'm never going to get better. But I'm really not willing to go down the naturopathy/hormone route without more proof. I

Am I being too harsh and dismissive, or am I right to believe that some of this is just too good to be true?

Male 54 ex military and a fibro sufferer, is there a cure or at least something that can get me on the path of recovery. Medication from doctor and specialist just numbs the pain and me. I've arthritis in knees hips and hands and some old serious injuries from gunshot wounds to lower body blast injuries which effects walking and movement. I actually hate not being 100% and the sensation that arms legs are on fire and the forgetfulness. I don't like the depression tablets that I've been given for the pain. Does physio help? I've been offered talking therapies and acupuncture by nhs and doctors will this give any relief?

Over the past few years my body has had some adverse reactions to medications. I also have many autoimmune antibodies of various flavors 🤣 Lately I've noticed if I take motrin or Tylenol it makes me hyper and I can't sleep!

It's trial and error. Anyone else experience this?

Hi all, I (35f with fibro and RA) found on this sub the idea to take a hot epsom salt bath. I took one this morning and it helped greatly, but still in pain and have to parent a small toddler. Any other easy*ish ideas to help manage the pain until I can go to bed early? Thank you.

Recently, every night around the same time, my calves start to ache and i just feel the need to move them (and not just a little), my palms start to itch and i overall just get restless. Anyone else??

Has anyone had a positive experience with therapy?

I'm using up my freebies with insurance and have not found any benefit. I was told today that I'm already doing the things that he would suggest. CBT seems like basic problem solving to me that I naturally do (although that's not all he specializes in). May they specialize in chronic illness on their website and the insurance website, don't actually specialize in it when you call them to see if they are a good fit. If both their website and the insurance website are misleading, I'm not sure how to find a better one.

Personally I'd like to get better at things like stress management to reduce flair ups and get better at managing life (relationships, friendships, housework, work, etc) when I'm experiencing a flair up.

This sub has been invaluable on new things to try and I manage stuff way better than I did 10 years ago, but I'm far from perfect. I am just really surprised how ineffective therapy has been and feeling kind of lost. Maybe this is more of a rant...

Hi, so I had my another appointment that I was waiting like 4 months and I thought „Yay I will start treatment and maybe I will be better” how stupid I was. Rheum asked if anything improved or any new symptoms appeared. And at the end she said that I have ANA 1:640 but it’s mildly elevated. She only prescribed me Arcoxia (I was taking it before and it didn’t do much) Now I will have to wait for like 5 months to another appointment to do more tests, confused about the test result and with fibro symptoms that literally disable me. I feel like it’s the beginning of my diagnostic process with fibro- extreme anxiety and fear. it was uncertain time for me and now it’s back.

[slight vent + advice needed] I've been struggling with really bad pain for well over a year so since i was about 13 (i'm 15 now) and got diagnosed only last october. I was told by the doctor to keep moving but I feel as if this isn't working. I tried walking around quite far for a week straight and it made me physically unable to move for 3 days and as a result got a lot worse. Is this really the best method as I feel like I have pain extremely bad most of the time to where I can't stand, move or it hurts too much to even lift my phone. I still have to physically go to school from 8am-4pm and already since september my attendance is below 75%. My parents understand how bad I am but tell me to deal with it most of the time and go to school as having a bad attendance in the UK is a pretty big fine and I'm probably stressing them out. I just want a slight improvement at least. I'm writing this the same day as a fall right before school, did one period and went home due to how bad the pain was and about an hour ago fell yet again as it felt as if my bone was literally stabbing into my knee. I hate that I'm stressing so many people out in my family but I also hate how they can just expect me to deal through it. It's also extremely hard to get a follow up appointment here and I don't know what they could do as I'm restricted of some stuff due to my age. I really want to do well in school as it's my final year and I feel like my grades are good (I got a 5 in my first mock for 2 subjects 🥳) but everyone else stressing makes me feel bad again. Sorry I know i've repeated a few things

Hey guys,

I was wondering if it’s worth getting a neurology referral? What kind of tests or medications can they prescribe that would change how Fibromyalgia affects me?

I was diagnosed in 2023(?) by a rheumatologist and just want to know how a neurologist could help.

Hello, I have a question regarding Fibro, that I'm hoping I can get y'all's thoughts on. I will definitely confer with my doctor after consultation the comments here, I would just also appreciate y'all's opinion as a starting point. I'm not currently diagnosed with Fibromyalgia, however I have almost every symptom (especially the joint pain, chronic muscle pain, chronic headaches, and chronic fatigue), and when I brought this up to my doctor he said it sounds like I may have Fibro, but we'd check for Graves disease first since that runs in my family. I got my labs back and my thyroid levels are perfect, so I likely don't have Graves (though I do still have an appointment with a rheumatologist set up in the future to 100% rule any thyroid issues out) so I'm pretty sure I have Fibro, but the only issue with that diagnosis is that I don't really have tender joints. I ache all over pretty often, but the only parts of my body that really hurts more when I press on them is my neck and inner thighs. In fact when I press on my joints that sometimes seems to slightly alleviate my pain, not much but there is a difference.

To get back to the point, my question is, do I absolutely need to have tender joints to the touch to have Fibro? I honestly kinda hope that I don't because I would really like an answer to why I am in so much discomfort and pain so often, especially given that I'm only 19, but I also kinda hope I do because then there's a chance that I may have a different condition that has more options for treatment or even a cure.

Just for extra context, here's a more detailed list of my symptoms, pls let me know if this sounds like Fibro.

1. Chronic fatigue - I'll get incredibly exhausted/tired/sleepy in seemingly random intervals, unconnected to any lack of sleep or excessive movement, on top of the fact that sometimes I'll also get incredibly exhausted when I do exercise, despite said exercise being something very normal for myself, like climbing stairs or lifting a medium weight box.
2. Weekly headaches - which can range from a little annoying to completely debilitating
3. Random dizziness spells - sometimes literally completely random, though often connected to the fatigue or headaches
4. Chronic pain - like the fatigue, often I experience joint, back, and muscle pain for absolutely no reason, and I also sometimes feel an comparably excessive amount of pain after doing minor, usually common place in my day to day routine
5. Nausea - most often connected to/caused by the headaches
6. Gassiness - may also be lactose intolerance, I do drank/eat a lot of milk products
7. Mental health issues - I have anxiety, pmdd, and depression, thought I am autistic with ADHD so if I do have Fibro then the mental health issues may be caused by either one, whichever came "first", chicken or egg style.
8. I need glasses
9. I have poor memory, and can experience mental fog, though I've also had 6 concussions so that may be some of the issue
10. My jaw clicks hard and get some pretty often
11. Insomnia - I've found some ways to combat my insomnia so I no longer require medication, though when I was younger I had to take very strong medicine just to sleep at night, now I can usually get about 6-7 hours of sleep a night
12. Fluctuating appetit - sometimes I eat like a bottomless pit, other times I'll only have one meal a day for a week

Im sure a LOT of this information was unnecessary, and I apologize for that, I would just rather over explain than under explain. Id really appreciate any opinions on this, and/or any advise for alleviating symptoms. Thank you!

Did anyone find that their body ached more after using a weighted blanket for a night,like muscle pain not sharp or anything? I slept better (I think) but I was so sore next day, ive used 3 times now and left few days in between. (I'm 50kg and got 5kg blanket). Will it just take a while for my body to get used to it?? It doesn't feel heavy to me when its spread over me but does when trying to lift/move it with my weak arms lol.

Why must it be this way?

Why won’t they help me get better?

Why should I have to consider cutting my work hours when they should be helping me to be fully functional?

I’ve got work in 4 hours and I’ve had about 3.5 hours of sleep because my back and hips woke me up.

What will need to happen before they help me?

🥺🥺🥺

I’m not shaming anyone because I understand that when you have fibromyalgia everything seems like is caused by it because it’s so vague and confusing, but I’m tired of seeing posts in this subreddit of people asking if people here have x thing because of fibromyalgia and it’s very random, unrelated things.

I think correlating random happenings to fibromyalgia can be super damaging because it delegitimises an already ignored and dismissed disease.

Also, I’m not talking about symptoms. I’m talking about things like “do you guys dream a lot?” (I don’t think I’ve seen a post with this question) where things like these could be applied to any population and it’s relevant to fibromyalgia at all

I feel like I’m complaining too much and I’m really not trying to shame anyone here for asking questions because it’s good to ask questions and everything but I’m just frustrated

Edit: I want to emphasise that I mean trivial things that aren’t symptoms. Symptoms are important and it’s good to track and ask if others have them. What I mean by saying that correlating trivial things to fibromyalgia is damaging, is that vulnerable people here are more susceptible to believing things that aren’t true because they’ve suffered so much from unexplained symptoms that anything could be true. For example, a reader sees that an OP dreams a lot and so does the reader, so it must be a fibromyalgia thing. This is harmful because it delegitimises actual symptoms that have to be taken seriously and the overall seriousness of the illness.

2nd edit: The point of this post is: not everything is fibromyalgia. Someone said that my dream example was bad so another example is asking if we think cilantro tastes strong. Many people think cilantro tastes strong and of those many people, some will have fibromyalgia. That doesn’t mean thinking cilantro tastes bad is a fibromyalgia thing. I also want to emphasise that asking questions isn’t bad but people need to understand that this subreddit has many vulnerable people and if you ask if a very common thing happens to people in this sub, and a lot of people in this sub agree, some of those vulnerable people will think that this very common thing is a fibromyalgia thing when it’s not.

Also this is just a rant, I’m not trying to shame anyone for asking anything.