Winter is coming... And im sorta nervous, this will be my first one since getting diagnosed. What can i expect? Will it be worse than usual or does it depend from person to person?

My fibro is already pretty unbearable, I don't take any medication for pain and I overexert pretty much everyday because I want to keep functioning as a "normal" person for as long as I can, and I also do it out of spite and a little bit of masochism. Every time I stop to rest anywhere, it's as if God himself is weighing me down - making sure I don't get up. But its fun, I continue out of sheer spite.

Anyway I digress - Considering all of that, can I expect more consequences for my cavalier attitude towards this? I already require a lot of care but I wouldn't want to be a burden on people around me.

Thank you!

does anyone know what times you're supposed to take savella? like how many hours apart? it's one pill twice a day.

it didn't come with instructions for that and my doctor didn't give me any, but both my doctor and the pharmacy i used are impossible to get ahold of. i took one around noon, i'm not sure when i'm supposed to take the next dose. i tried googling it to no avail. i feel like at one point i saw my doctor putting it in the system and it SEEMED like he put once in the morning and once in the evening, but i can't tell if i just imagined that or if it was a dream i had because my brain fog is so bad lol. it took weeks just to sort out getting this medication with my insurance, so that doesn't help matters in regards to my memory of the actual appointment.

I have 4 other autoimmune conditions and I dk hope this isn't #5 For the past year or so I've had new symptoms: my skin always feels like it's on fire, my skeleton feels like it's outside of my body and hanging on by my shoulders and my skin is always hot and sometimes light touches from people hurt. I don't know what to do :-( I've been trying to ignore it hoping it's one of those symptoms that don't stay long but it HAS stayed ._.

Any men in the group who have FM and use testosterone replacement therapy. Have you seen a difference in quality of life or how you feel?

So I started out trying to meditate but my body hurt so much I really struggled with most aspects. So tons of YouTube videos, guided meditations and much frustrating later I really focused in on mindfulness.

I got this book called Full Catastrophe Living by Jon Kabat-Zinn that is specifically for people with pain and illness. (He also has an app that I use when I’m too tired to read). It’s really helped me confront my pain and sit with it calmly, not judging it for hurting me and instead seeing it as a single part of my experience as a human.

I struggle still, flares and bad mind days are still difficult but I’m really hopeful of this method as I’ve already had stark success.

Has anyone else been able to do this kind of practice?

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?!

Which medications or substance does everyone takes to help cope with allodynia? Does anyone uses THC oil /vape cart to distract oneself a from pain ? I tried Indica vape cart however it doesn’t ease nor distract myself form the pain as most people used to say . Thank your opinion

Hi everyone!

Sorry if this is not allowed, it's my first post.

I have the best mother in law. She is kind and loving and just overal a really good person, but we don't get to her her often lately as she is having the worst autumn.

She doesn't tend to do well when the weather changes and has been stuck in the house for a few weeks now, she has been in so much pain and we don't really know what to do. I don't remember it being this bad before...

I would like to ask you if there are any tips or products you could suggest that might help? I am looking for christmas gifts aswell.

She already has a heated blanket, pillow and a big infrared lamp at home. They do help!

Thank you so much in advance!

I’m experiencing one of the worst flares in years, and I contribute it to the election. As a woman, I feel disappointed and also vulnerable.

Anyone else flaring right now?

I don’t know if I can tolerate this pain level. Anyone else feel overwhelmed? I might need to change my medication, but that’s not an easy ask.

I was the passenger in a car accident and am in a lot of pain from it but with no visible injuries like broken bones. I know that the injury will exacerbate the fibromyalgia, scoliosis, and potential eds in the long term and will need more than just a couple chiro visits to recover. I've decided to get a lawyer to make sure my medical needs will be taken care of. My friend who was at fault is freaking out and thinks he's getting sued and says I should just let the insurance company take care of it. I'm questioning if I should but I'm worried the car insurance company won't take my chronic illnesses seriously. Does anyone have experience with anything like this?

Hi guys, my MIL (54), has fibromyalgia. I don't know how long she has had it for, but my fiancè and I have been together seven years, and it's been since before we met.

To my knowledge, she drinks something like 20+ tablets A DAY. (Strong painkillers they would give you after surgery, asthma tablets, allergy tablets, blood pressure, to name a few)

She complains about her muscles being on fire all the time, bruising easily, and bad reflux.

The last year or two, I've noticed that her memory is deteriorating rapidly, and her decision making skills have also become very poor.

Her speech also sounds slurred. English is not her first language, but her spelling/understanding of English was decent, until recently.

In the last two months, I've noticed that when she blinks, her eyelids open at a different "pace" to each other, and when they do, it kind of takes her eyes a moment to "look normal". She has also started to become slightly child like, and sometimes "plays" my fiancè and I against each other, or she believes everything she sees on social media, including scams/phishing, which ends up becoming an argument. She also bends the truth quite a bit, and has become very forgetful.

I become very irritated, really quickly, even though I know it's not really her fault, and she can't help it.

Basically, I'm trying to understand what's the right course for her now, she refuses to do any kind of exercise because her muscles are sore, but the doctor recommended mild exercise.

The doctor referred her for a scope for the reflux, she refused. Apparently there is a treatment similar to chemotherapy that she can go for, I don't know anything about it at all, and haven't tried to research it. But she has refused that treatment as well.

She hasn't been to a neurologist, or any specialists that I am aware of. It's only been GP's and a psychiatrist (once). And she tried acupuncture once. Says that she can't handle massages.

How do we handle this? And what can we do to help her? What other routes can we take? I know that she is under a lot of stress with my FIL and his "antics", definitely not husband of the year.. would taking her out of that help?

I'm really at a loss, and worried about how much time we might have left with her? Is this even fibromyalgia? I see other people talking about "flares", she doesn't seem to have "flares", she's kind of like this all the time??

I very rarely get out of my house, I use a can due to weakness and imbalance, but I have a really hard time in stores with the sound and bustle. So I don’t like going to them.

I am making an appointment to see my PCP, to ask her about a motorized chair. Has anyone gotten their insurance to cover one? I’d love to know the process…

Thank you.

Wondering if anyone else has this experience? I can't find good research studies.

I live at a bit over 4000 feet elevation and my family has a mountain cabin right at 8000 feet elevation that I frequently go to on the weekends. Pretty much every time I go up there, I get a minor to moderate flare-up within a few hours of arrival. It usually lasts the rest of the day but is usually, but not always, gone the next day (after sleeping up there). The same does not happen when I come back down to ~4000 ft.

My best guess is that it's the elevation increase because it is so consistent. It could possibly be the temperature change (typically 5-10 degrees F cooler up there) or because of the 1.5 hour drive, but I feel like those things don't consistently cause flare-ups for me otherwise.

i know this is not the correct space to look for a diagnosis or treatment advice.

i want to share something i’ve been dealing with and i want to know if anyone else has had any similar experiences. the muscle next to my knee cap towards the inside of my knee has been twitching. it started in my left knee and moved to my right. my right also clicks a lot and pops when i stretch my ankle out.

i don’t have a rheumatologist currently, i had a very bad experience with one two years ago and i’ve been scared to go back since.

So I've been having MAJOR body pains and exhaustion for months. It was so bad in September that I finally mad an appointment. A few of my inflammation markers came back high/positive. I did a follow-up earlier this week. I'm now being referred to a rheumatologist and given a diagnosis of fibromyalgia. I'm happy because something was actually wrong with me and I have an answer BUT sad because I have an answer. If that makes sense.

I've had terrible body pain, joint pain, memory loss, headaches, brain fog, spacing out, and other symptoms but when I try and talk to doctors about it they basically say Oh try this new drugs and I won't diagnos or run test. In addition to this the doctors who can work with me require a referral but the doctos I visit for a referral seem scared to give me one. I honestly feel like I'm being forced to suffer longer because doctors don't want to see if I have Fibromyalgia or try treatment for it. Is this common because of stigma about it?

So I just travelled for a week and my Fibro symptoms were non existent. I just got home and I’m already having symptoms again. My doctor believes I have mold in my home. I got tested I have mold toxicity from my blood test they had me take.

Can mold/fibro symptoms appear within 30 minutes to an hour after being in the affected area? I’m getting my house tested soon.

Has anyone else went into full spasm before during a flare up? My bodies in spasm even affecting my jaw to the point I can't stop my teeth chattering

I didn’t see anything in the pinned posts to learn more, so instead I’ll share my story to get feedback.

I’m a female turning 37 next week. I’ve struggled my entire life with headaches. They’ve always seemed to stem from my neck, foreword head posture, shoulders rolled forward. The last few years my neck has started hurting worse, especially in the mornings. My therapist has said it’s not normal to wake up aching every morning. The last few weeks my entire body hurts now - primarily neck, shoulders, lower back, and butt. It feels sore like I worked out, but I haven’t. I’m not sick with the flu. It won’t go away. I have occasional pins and needles down my arms. Is this the beginning of what I think could be fibromyalgia?

I’m seeing a neurologist for the migraines but the medications and Botox isn’t helping. I’m in PT for the neck problems, and I feel like it’s just making things worse.

No doctor has mentioned fibromyalgia. I just happened across it when searching for why my entire body hurts and won’t go away.

Side notes on other medical conditions and tests performed:

I’ve had a chronic sinus infection for 2 years that won’t go away. Probably unrelated, just calling it out in case there’s any potential association.

When I was 20 I started having bladder problems out of no where (frequency). I’m on overactive bladder medications for it.

Brain MRIs are clear.

Cervical MRI showed age related neck deterioration. They want to do a cervical ablation to stop neck pain.

ENGs show no nerve problems.

My hs-CRP is always super high (10x normal).

Recent vertigo episodes bad enough to go to the ER.

EKGs are all good. My mom died of cardiac arrest, and my grandparents also died from heart disease, so it runs in the family.

ANAs always normal.

Thyroid is fine.

Iron is fine.

I’ve had Dexa scans before. Would that show anything related to fibromyalgia?

Moody, anxiety, OCD, noise sensitivity. Being treated for all with a psychiatrist and therapist.

Insomnia. Im on medication for it but it recently stopped working which is weird.

For those in the US: Anyone else feel a bad flare coming on or have one given how everything went this week? In no way do I want this to be a political post where people argue BUT I have a friend with fibro and I myself am struggling hard this week.

It should have just been a flu...

After 6 months of pain, I heard the dreaded word "fibromyalgia"...

At first I though I just had the flu. No big deal. I was exhausted, achy, and sore, like I had just had hard day at the gym. I just started a new semester of college, it's my final year of my engineering degree. Am I just stressed? Why wont this feeling go away? I tried pushing through, taking cold medicine like it was candy, and taking naps to try to prepare myself for the next class. But as the weeks went by, I just was not getting better. I'm thinking to myself "what the hell is happening to me?". I am only 21, this should be the most healthy time of my life but instead I feel like I am 100 years old. The flu symptoms never got better. Instead, they just ... shifted.

The exhaustion became a crushing weight that I could not get rid of. No matter how much I slept, I never felt rested. My body ached constantly. It felt like I was in a car accident. Sitting in the middle of class and having to leave because of the throbbing pain radiating down my legs. I thought maybe I just got mono, ok, I should be about half way through then.

I went to see my GP, hoping for an answer. I told them about everything that was happening and was just pushed off with the diagnosis of "post viral fatigue". He said "Take some Tylenol and get some rest, you should start feeling better soon". I believed him, I pushed through for 2 more weeks until I could not take it anymore. I was not able to sleep anymore. I could not lay down without this overwhelming feeling of pain and discomfort. My sleep was reduced down to only 3 hours a night. I eventually went back and he finally started to take me seriously. He gave me sleep aids and muscle relaxers. He ordered bloodwork and sent me to get a MRI. Nothing came back with any answers.

I had to eventually go to the ER. It was 3 in the morning and the pain got so bad that I thought that I was going to die. They pushed me off as a junkie... No pain medication, no tests, nothing. It seems like all they did was make sure that I my heart is still beating and send me off.

As weeks went by, the symptoms didn't just stick around, they started to get worse. I felt like I was dragging myself through each day. Some mornings I felt like I could not get out of bed because my body was so stiff and painful. I started to get panic attacks because I have not been able to work or perform any of my tasks.

Explaining to my professors that I was dealing with this "mystery illness" was useless. They just thought that I wanted extensions because I was lazy or was not managing my time correctly. I had to eventually show them the doctors notes and they finally started to take me seriously. They referred me to my colleges accommodation office, but they said that they could not do much because of the lack of diagnosis. The only thing that I could do was tough it out.

I kept on going to the doctor, trying specialists and pain management doctors. All they did was send me out to get more tests and scans. Everything came back normal. After 3 months of this hell, my doctor though I was just had anxiety. I started to take antidepressants, but these make me feel like I am just locked inside of my body.

After what seemed like an endless cycle of doctors visits and tests, I finally saw a rheumatologist that brought up the idea of fibromyalgia. I have heard of it, but I could not believe that it would happen to me. Before this I considered myself young and healthy. She said that it is common for this illness to be triggered by viruses or bad stress. After more tests... she diagnosed me.

In one aspect, it is a relief that I finally have an explanation to why I feel so bad, but I can not accept that this is happening to me. I am young. I can not deal with this for the rest of my life. I feel like my life is over at this point. How am I supposed to enjoy hiking, camping, or scuba diving anymore? How am I supposed to live a fulfilling life... all of my goals... destroyed.

I am sorry for the rant. I just needed to get some emotions out.

I now have four chronic illnesses (that I know of so far, possible POTS), Fibro, Interstitial Cystitis, Hashimoto's (with high cortisol), Visual Snow. At least three cause memory issues. I have a brain MRI next week and a neuro appt the week after. I cannot remember anything. I went to the eye dr today without my wallet and had to drive all the way back home to get it, ordered the wrong options for glasses so I had to have them cancel order and redo, forgot half of what I needed at the store. That was before 2pm today. I have lists, calendars, and sticky notes, I am still not getting done what I need. I'm always tired, in pain and stressed out. :(

Has anyone tried this to see if they can find root of the problem that actually causes the pain?

Last night I got jabbed in the belly right above the belly button by the end of a gift wrap tube. First, don't think a cardboard tube can do much damage. Secondly, yeah it was a good jab but it wasn't that bad. I had to sit down for a few seconds because it hurt but it subsided quickly. Now today that spot is sore like a bruise but there's no visible bruise. It's tender to touch.

I notice this with my stomach my neck and my thighs. If they are pinched, poked or touched in any aggressive way it's painful. That's why I HATE being tickled. It hurts. Then, my body holds onto the pain sometimes for days. What is this? Do you have this?​

Finally went and saw my doctor about my knee. He’s sending me for an mri and I’m hopeful to actually get answers. The cracking popping has gotten worse and no matter what I do stand, lay down, sit it’s all the same level. Trouble walking, curbs, steps or even going from sitting to standing. Constantly while standing I’m trying to crack it to get some relief. I left it for so long thinking it’s just normal for me? But it just doesn’t stop. ✋ I’m not sure anymore what can help but god I hope something can. Anyone else deal with this and have an mri? Did something show up?

I'm a 42m who has been experiencing fibromyalgia symptoms for the last 4-5years. I developed that condition due to contracting COVID whilst working in a hospital social work team in the first wave. After fighting with my GP and resorting to a private rheumatology appointment due to an 8 months waiting list, I received my diagnosis (turns out my mother has the condition too).

I have undergone long COVID workshops (mindfulness, not helpful), OT and physio (same), been referred and refused by pain management team 4 times, undergone various medications etc. basically wondering whether resorting to nonconventional mean. Namely, acupuncture etc?

I have heard good things regarding acupuncture. Various pressure clips etc have helped sooth me at times, and quite a bit of clinical evidence with animal subjects etc. Might be something that is useful in soothing or making pain management more easy? If so how long do the affects last? What kind of price? (In UK). Is it a waste of time?

Hi everyone, I am (34F) and in so much pain ALL THE TIME for the past couple of months. It all started in August with some weird shoulder pain (that would go down to my elbows). It kinda coincided with me getting a treadmill. I have been running for 10 years now in the road but decided to finally buying a treadmill so I would have the option to run indoors due to horrible winters and rain here in the UK. The shoulders wouldn’t hurt all the time, just when I would move it in certain ways. After that everything started going downhill. I now have pain on both shoulder blades, neck, shoulders, elbows and occasionally feel like it runs all the way to my hands (it’s more like an electrical shock or burning feeling). Also I have pain in my lumbar, hips and occasionally on the side of my legs. Last week my left thigh was hurting so bad that would hurt to even touch the skin, it was a level of sensibility I never felt before. I was prescribed codeine + paracetamol and had some blood tests that came back normal (vit D was a tiny bit low). I then couldn’t stand the pain/weird burning sensations all the time and was prescribed Amitripyline. I have now done a x-ray and been prescribed an anti inflammatory. My brain fog is crazy and I am getting this huge fear of having a serious disease and not being able of seeing my two toddlers grow up. I am getting nauseous everyday at the same time around 4-5pm as well. I am just completely lost as I never heard about fibromyalgia before and don’t know how it is possible to live a life like this. If anybody has anything to share about their experiences with this disease I would love to read to understand more and feel less alone. Tia 🥰

I have not been yet diagnosed with Fibromyalgia....However, does anyone experience migrating pains with this illness? I just wonder because my pain migrates from my temples, to my back, to my throat, and to my legs even at times. Any thoughts about this? IT doesnt look like im getting better but i get bouts of dizziness and migraines.

Sorry for the somewhat gross question, but has anyone experienced abdominal discomfort with Lyrica (this is the end of week 1 on it). Mainly bad (terrible, awful) stomach gas. Any recommendations on how to combat? Right now I’m chewing gas-x pills, but it’s not really a solution. Thank you!

I find that my episodes increase during this time, wondering if it’s the same for anyone else?