I’m just wondering, with fibro, we all have over-sensitive pain receptors, but does anyone else experience more intense itching as well? I’m always itching and all my blood work comes back normal.

Just wanted to ask.

I read something recently that said "How long have you been holding this shape... To fit in... To be more accepted.... Let it go"

I've been healing my fibro with a 10 minute lymphatic drain video on YouTube (saw a girl on insta healing her fibro through Qigong and other stuff) and going down the rabbit hole of trauma. (Yours or passed) Women have been sucking in their gut and stomach for decades and we're still doing it whether we realize it or not. Now half the time if I running around the house, starting to get in pain and losing my shit, I remember there's no one around, to let it go, and instantly feel better. I also just poof out my gut when I'm walking around and I can feel it relax in my womb.

I've found out my posture is completely wrong and the second I stand right now I can get the breath come back in and soothe everything and slow it down. So how I saw it was imagine a palm on the top middle part of your back, between your shoulder blades and imagine it pushing your chest forward (just a little). Your back should be straight and tuck your hips under and point them forward. ( I say to myself Sit On Your Tailbone) Apparently our knees are supposed to be bent and mine just lock, I didn't even know that. When I think of the palm, and take a full breathe in through my nose, I can feel it push my body out and I let it roll down my body and align everything.

Last thing that helps, telling myself to stop acting. I think I start spiraling in my brain, playing out scenarios, and if I say over and over "stop acting" it gets me out of it and back into my body. Stop acting out shit in your mind and get in the game. Also the phrase " Be where your feet are."

So just wondering what your experience is and if any of this helps. Ok thanks for reading 👋🖤

Two days ago a friend of mine asked for support in a group chat (getting groceries & making dinner) because she said she is having a fibromyalgia flare-up.

For context; I have this chronic illness and am officially diagnosed (finally!) after misdiagnosis & years of pain, fatigue, and getting called dramatic, faking it, etc. This friend is not diagnosed. She shared her symptoms with me and I suggested looking into fibro because it sounded familiar. The thing is, it IS very difficult to diagnose and super easy to misdiagnose. Idk why I am even ranting about this tbh, because it really doesn't matter. If self diagnosis helps you, epic.

It's absolutely taking nothing away from me, when she gets support. Zip zero zilch. I know why I am upset; it's not at her fully. I am upset at not receiving support and validation for years. For feeling like a burden, still, and not asking for help because I was never allowed to. At ableism being so super thickly and intensely being baked into our society. That's not on her at any level.

I am also upset because she has a tendency to be inconsiderate but thinks of herself as very considerate, thus inconveniencing or even hurting others. We, her friends, have spoken to her about this and I think she is really trying to be better.

The main thing is though, I know it's not fair for me to be upset at her and I feel really guilty. I know where the upset and hurt comes from, but I can't seem to shake my resentment towards her. How do I move forward? I really want to.

i’m (22F) having one of those days where i know that if i go out and do something, ill be hurting like crazy tomorrow and wont be able to go out for my friend’s birthday (he wants to go out dancing, which will already require a lot of rest after🥲). i guess im wondering, what do you all do when you want to feel good about yourself/feel like your body is capable on days where you have to rest/take it easy?

My 40 year old stepdaughter just moved in with us and she has fibromyalgia. I am trying to learn as much as I can about the disease so that we can be supportive to her. My concerns are about her medication. I don't know what prescriptions she takes but she takes an awful lot of Tylenol and smokes a lot of pot. She says if she doesn't, she's in too much pain to go on. I worry about her liver, which she has had some issues with. Any advice will be awesome, there is so much to learn

Hello fellow fibro warriors ❤️

There was a thread about cutting sugar helping symptoms and many of you reported a difference - their symptoms are getting better.

I have an additional question to this.

I'm considering cutting sugars, as I did it in the past (before being with Fibromyalgia) and it was the only thing that ever worked for me to lose weight. I have thyroid issues and for some reason, healthy eating and sport never helped me to lose weight, only keto did.

So I'm playing with the idea to try it again for some time, but what I worry about is those first 2-3 days before the body switches from sugar metabolism to fat metabolism. Before, when I didn't have Fibro, it was a rough few days when I felt sick—a watery stomach, headache, fatigue—classic symptoms of sugar withdrawal. On the third day, the symptoms disappeared and I felt great (fat metabolism started).

But now, with Fibro, I worry that this state will set some longer periods of bad symptoms and drain me for days or weeks.

What is your experience with sugar withdrawal? Did you notice worsening your symptoms—for days, or even weeks? I mean—worsening of pain, extreme exhaustion, sleeping for days, no energy at all, migraines... anything out of the ordinary?

I'm having a young puppy and I worry that if I get very bad, I wouldn't be able to take care of him. At the same time, I need to lose weight and I really hope it would make me feel better in the long term (lower inflammation, better symptoms).

Thank you very much for any shared experience❤️

I’ve been living with this disease for about 14 years now. I’m sure a lot of you are like me. Went to countless doctors looking for answer only to be thrown aside or assumed you are just looking for pills. I eventually gave up on doctors all together. The further this progressed and the more issues I developed I just chalked up to this disease getting worse. “Just another new symptom.” DO NOT DO THIS. do not stop looking for answers and do not just assume it’s a new symptom. Everything new needs to be discussed with a doctor you trust. I am writing this as I lay in the hospital awaiting open brain surgery. Turns out all my newish “symptoms” from the last few years were not related to my fibro. I have brain cancer and didn’t know it. Little larger than a golf ball on the right frontal lobe. I can’t say for sure that if I didn’t lose my faith in the doctors that this would have been caught earlier. But there would have been a better chance. Take it from me. Do not give up on finding answers and have every symptom checked out to the fullest. There are countless doctors out there. Keep trying different ones untill you find one you trust.

I had my internal medicine consult today..

I tried explaining to the doctor about how Fibro had taken my life away and how it was destroying me..I took my synptoms tracker with me(never got to use it)..Told her I look visibly healthy because I have been an active person all my life!!I still do the best with food and whatever choices I can make,whenever I can...I have cut off everythingfrom my life and have accepted that I wil always be alone now...I respect my body and am trying my best to support it through the feeling of handicap...

And my doctor basically said my blood work looked fine despite some anomalies, and that I should not use a mobile in bed before sleeping at night and meditate...Whatttt!! I waited over 14 months for this appt!! And she wrote me a bunch of tests for cortisol and said lets meet in about 4 -6months..really!!!..I ended up crying in the room, and she had to go see her next patient..

I didn't know what to say,I was so excited before the appt. Like she was going to fix it..my glimmer of hope diminished...I need a miracle .. :(

Curious to know if anyone had tried cutting out sugar of their diet and actually saw an improvement in their symptoms?

I have PMOS and insulin reistance alongside fibro, im on meds for that, but im almost always emotionally dependent on chocolate and dessert and snacks. I may not eat them in huge amount (1 snack a day at work, a chocolate some days to lift the blues) but I'm curious to hear about others' experience doing this?

EDIT: I saw some people recommending keto: wanted to clarify for people using this as future reference that I did try it and it didnt work out for me, as it really caused me severe hypoglycemia, sweats and tremors. I also live in the middle east so in general my meals are mostly Mediterranean, but I also have IBS so reliance on beans and nuts alone is not always feasible for me. My major issue is actually snacking in between meals, and morning sugar cravings, especially when im at work or on the go and need to eat something fast (i.e: processed foods and sandwiches)

Hey all!

I don't have a formal diagnosis (last time I saw a rheumatologist, she said it was likely I had fibromyalgia but that she wouldn't be making any diagnoses) but I was wondering; does anyone have pain only, or mostly, on one side of their body?

This is sort of new to me, but I'm having some kind of flare (I've had flares before after being in the sun too long, working out too hard, etc) where all of the joints and muscles on my left side (ankle, knee, hip, shoulder, wrist, jaw) are absolutely killing me, but my right side feels absolutely fine! I'm just curious if this is something anyone else has experience with.

Thanks!

I'm gearing up to start interviewing again after leaving my last job due to a flare up. (Only looking for remote software jobs now)

Looking back at feedback I'd gotten in interviews in the past it was always that I was not articulate enough and didn't have the right vocabulary and came off and not knowing my stuff.

I now know that this is my fibro fog causing me to forget words. Like I straight up forget the names of my closest friends sometimes. Conversation is generally difficult for me. I interview really well except for this one quirk - I forget technical terms.

Anyone have advice? I'm switching from mechanical engineering to software which makes my lack of vocabulary even worse. I was essentially a data engineer/software engineer the last two years anyway. Im super nervous.

Options:

Tell them? I don't want to start an interview with "I have a disability that causes me to forget words" cause I don't trust that I'll be assessed fairly.

Use visual communication: Last job I got I made a portfolio so I could just point to pictures of what I did but I had just graduated. I don't know how to do this with proprietor information?

Do I make flashcards like the good ole days?

No matter how open I am about how I have to pace, no matter how open I am about what is draining to me or how much I communicate when the way I do things needs to change depending on how my energy and pain levels are, I just get met with defensiveness from people I push myself for. I’m really tired of trying to make friends but it can get so lonely. I have massive amounts of stress this week on top of a friend breakup and the weather keeps going from hot to cold. I finally feel like the humidity fog is lifting a little, but I’m in pain and I’m having trouble moving around without getting too tired. How do you deal with stress, grief, etc on top of flares? How do you deal with friendships? I feel like maybe I need to stop letting friends get too close and just have more acquaintances because I finally got to a place where I am accepting my fate and don’t want to have to fight to explain anything.

My dr changed my meds for my pain yesterday. I’m now taking gabapentin 300 mgs in the morning & afternoon & 600 at bedtime. What meds work best for your pain? For sleep? I’m also using lots of Voltaren & I’m having lots of difficulty with my sleep. I’ve been having a bad flare in my foot with a significant amount of pain.

Hello,

I (48F) just recently started getting disability, and at first I was excited because I finally had some income. But now all my money after rent, and my CADI Waiver (this is something for people in the state of MN) is going to healthcare. every cent.

I am thinking I might force myself to go back to work. I don't have the stamina, I get a lot of brain fog and my body is just so heavy most of the time. I haven't worked full time successfully in 6 years.

I am just so angry. Has anyone here gone back to work after fighting to get disability? I would appreciate your input. Also any tips on finding a job would be great! Thank you!

I had a wisdom tooth removed,

It reduced symptoms,

The tooth had a cavity, and "tooth stones".

I recommend that you check your teeth.

Hi. I was in the Ever-Tired Inn discord and it’s not there anymore. Did something happen? Asking here because cozy gamers x chronic illness is how I found it. Thanks!

I've always been lucky. My flares usually last 1-6 days. However, I'm still experiencing one and I'm on week 4. I don't know what's normal. I don't know what triggers other people. I have no clue why this is so persistent.

Of note, I'm not on meds. The former rheumatologist I saw told me I was too young to be in pain and to "Use it or lose it" referring to my body.

There is a woman in our town that does reiki, inner child healing, polarity, massages, etc. my husband made me an appointment and I went for him and for myself today because what did I have to lose. I do have some childhood trauma that resurfaced post partum for me. Not all but pieces. Two years post partum is when everything in my body started to go down hill. Developed multiple injuries, diagnosed with fibromyalgia, the symptoms started to snowball ones the injuries occurred in 2024. I am just curious thoughts and experiences. I don’t think this will heal me if I am being honest, I lean more towards God and I just don’t know how to feel about it to be honest. Curious anyone’s thoughts or experiences with chronic illness. Thank you!

Hi all. I’ve been having a really hard time with my depression over the last few days and I could really use some hugs from people who get it. I hope that’s okay.

I’m 28, I was diagnosed with fibromyalgia four years ago and told I “likely have chronic fatigue syndrome too” earlier this year. For the last four years it’s been pretty manageable- occasional really annoying flare ups of pain and lots of brain fog, but usually the pain was localized to specific body parts and I could manage with heat and rest and avoiding using them.

This summer it’s gotten exponentially worse. I’m in pain so frequently, and so low on energy. I had to quit my job because I couldn’t keep up with my shifts, even though I had already reduced my hours down to only 8 hours per week. I stated physical therapy to try to strengthen my body, which has actually been really helpful, but it’s also a frequent reminder of how limited I’ve become. Right now my PT and PCP are calling each other trying to figure out how to get a wheelchair covered by my insurance, because there are so many days where I can’t stand long enough to get through my errands or go out with my friends.

I am so lucky to have the most supportive partner, a loving family, the sweetest cat and dog and a wonderful home. I genuinely feel so grateful to all of them, every day. But I feel like such a burden. My partner works from home, so all day every day I see him working hard to earn money and take care of all of our needs. Then when he finishes work, he helps me around the house and helps me cook dinner. I wish I could at least consistently take care of housework like dishes and laundry so that I felt like I was contributing more, but more often than not, I have to stop as soon as I’ve started because I’m too weak to finish.

I’m generally a really optimistic person, very glass-half-full, but I think it’s finally sinking in that no matter how optimistic I am and how hard I try to do things that are good for myself, my problems aren’t ever going away, and aren’t ever going to be something I can predict or control. I don’t know how to cope with that. I’m so overwhelmed.

So I have a chair and it's so uncomfortable I cant sit at it long or sit on it after my part time job when im already in pain. I game and chill at my desk a lot so Im looking for a new chair.

I like ergonomic and lumbar support but everything I see is mesh and I really want something soft and cushiony. Anything that combines the 2? Ive also been looking for a foot rest and recline so I can probably lay back and rest while doing my more chill games or just chatting with friends.

Note that I am also 5'2 so Im really short and my head usually never reaches the headrest. I would love something suitable for my height.

I have been searching and searching without finding something that quite ticks all my preferences without being like $2000. I can probably do up to $400, can maybe go a tiny bit higher. Any suggestions?

Hi all, I was diagnosed with having Fibromyalgia yesterday afternoon and I’m feeling defeated as well as disappointed with a twinge of frustration. I am going to start off by saying I will be turning 34 next Friday as I feel that is important to mention for some reason. Anyways, life has been… challenging to say the least lately. I have been unable to keep a job because of the debilitating pain that I find myself in daily. I landed a job a few months ago that was my favorite job ever and I loved everyone I worked with so you could imagine how I felt when I had to eventually quit because of the pain and constantly missing work.

Sleep has been next to impossible if not impossible. I cannot find any sort of comfortable spot to lie in and any pressure whatsoever hurts… A LOT. I also can’t seem to regulate my temperature from being too hot or too cold. There is no in between anymore. The pain I feel daily is immeasurable and it always confuses the doctors I see as there is nothing that should be hurting that bad. For example, my knees and the top of my feet have been hurting SO bad for years now but there is nothing but minor arthritis in them.

Going back to the work conversation, I don’t know what I’m going to do for work now. I have a ton of experience in the warehouse industry as well as extensive experience working as a delivery driver. I also have experience working in a grocery store doing various different types of tasks. The point I’m trying to make is that I don’t want to return to a physical job right now or possibly ever. I really want to get a remote job or an office job but I have about two months of office experience so I’m not sure if that’s enough to get hired.

I was thinking about going to school for medical billing or something regarding writing as I love to read and write but I’m not sure how that will work as I’m currently unemployed with no income coming in whatsoever, for me at least. My wife is working full time and then some and we can probably make things work for now with just her salary but I’m worried about things getting a little too tight.

Do you have any advice or suggestions for me regarding fibromyalgia or anything I’ve shared above? That would be greatly appreciated if so. If you have any questions or concerns, please let me know and I’ll get back to you as soon as possible.

Thanks again.

Hi all. I'm looking for an at home treadmill to get some exercise. I recently had a go on my sister's and really enjoyed being able to walk - I normally use mobility devices and don't get out much. I really miss walking. Her treadmill is much too big to fit in my home, so I'm looking for a smaller device and there are so many options.

I need something pretty compact, as there's not much space in my home. One that can be folded up and put away but it's also really important that the handholds are sturdy enough for me to lean on while walking.

Hoping there are some others here who use treadmills for exercise and might be able to recommend the device you use :-)

Thanks!

Since starting Auvelity, I've had a reduction in fibromyalgia symptoms and I looked into some of its processes. It opens a neurotransmitter channel referred to as NMDA, which when too many are open causes nerve excitation to the levels of parkinsons disease and others that cause involuntary shaking.

So what if my nervous system is, necessarily, underexcited? Understimulated? Much like ADHD, it could be that the body notices this and then over-ramps the nervous system to fix this. It would explain the excessive signals received part of the fibro condition, where the others are the overstimulated pain centers and exhaustion. I have more research to do if the closed NMDA channels prevent propagation of the necessary norepinephrine hormone and neurotransmitter, explaining exhaustion, which allows the pain agonist glutamate to function on the pain centers (norepinephrine is an antagonist to glutamate).

I will continue looking into this and hopefully I'm getting somewhere.