My muscles feel like they are shrink-wrapped super tight. I consistently have pain in my glute and hamstrings and my neck and traps. Other areas come and go. After being on my feet and working in the kitchen for two solid days for Thanksgiving, my entire body feels shrink-wrapped, from my head to my feet, so much tightness and soreness. I have been delaying trying myofascial release or rolfing, due to the crazy cost per session, but I can't take this anymore, I have to try something. Anyone have success story with MFR or rolfing? I just read Dr. Liptan's book and those are the two treatments she suggested, and she wrote that MFR made a huge difference for her pain. I have tried the typical therapeutic massage with 3 or 4 different therapists in the past, none helped.

Hey all. First post here.

I'm a pretty big guy (300lbs/6'4) and I've been on a very on and off weightloss journey. More off because of the pain/fatigue associated with Fibro. I love working out and being active. Before fibro, I'd play football(soccer) and go for unreasonably long walks just for fun, but now my body isn't too happy with me being too active, plus if I'm too sore and burnt out, I literally can't function at work.

So I'm asking for advice or at least some suggestions from folks.

1. For the ones who workout with weights, what do you use on your wrists? Wrt wraps etc,
2. What do you use for recovery from fatigue? e.g rubs/balms.
3. Do any supplements help you?

Willing to listen to any other advice wrt losing weight with Fibro too.

Additional context, I'm on Cymbalta for pain/anxiety/depression which is notorious for causing weight gain. Thankfully I haven't experienced any of that since I started, but I really don't want to wait and see then end up in a place where it's even harder for me to manage my health.

Thanks in advance. ❤️

It’s not necessarily funny but that’s the closest that I could find. Been struggling a lot with my fibro lately but I won the battle (for) now. (Get some fibro 😜)

I’d been unable to take a proper shower for about a week because I was so weak and in pain and had to take bird baths. But today I was able to get the strength together and finally shower. 💃 I feel like a real human again. So now I can attempt to be my chaotic goblin self within the means that my flare up will allow.

Wish me luck on my journey of mischief! 🥳

Before I got covid at the end of 2022 I was completely physically healthy. But one of my most severe covid symptoms was deep aching around my whole body, bad enough that I couldn’t even sit up. After I recovered I didn’t start feeling any aches until a few months later, and now I get pain on a day to day basis. Is this something that other people have experienced? Not just with covid but other viral infections too? My GP told me it was definitely fibromyalgia, but rheumatologists keep turning me away because all my xrays and blood work have been “normal”.

Really just a rant, but I’m on tramadol, and can only get it filled two days before I run out, and so when we have a long holiday weekend, and my meds run out during said weekend, I’m screwed. I’ve tried to call in early, I’ve tried to see if the pharmacy will just hold the meds, but nope. Just screwed. So today, I’m on half a dose, because I rationed them so I wouldn’t be completely out, and the pain is horrible. Anyone got any good tips for how to get through this?

So, for some context, I'm still relatively young. I live with my parents, and they cover most of my doctor visits because insurance doesn't cover all of it, and I can't pay for it due to being in grad school and not working much.

Ever since I was a kid, I've had chronic migraines. My mom would blow them off, telling me it's not that bad and I'd be forced to go to school or wherever. It conditioned me to force myself to function during the day with a migraine, then curl in a ball from the pain at night. It didn't help that when I got my first period, it was horrible. My mom would finally let me miss school from that, but only because I would skip classes to sit in the bathroom in pain. Turns out I have some sort of hormonal imbalance (I haven't pushed to figure out what it actually is, I'm happy with the treatment and want nothing to change) so I'm on only active birth control now, which has helped. My mental state growing up wasn't (isnt?) good from the constant pain.

It didn't help that my parents decided to take my brother out of in person school due to IBS. I begged my parents for years to do online school because of my anxiety and migraines, but was denied. My brother was allowed to do online school though, and then had to because of the pandemic.

As I got older, I learned to brush off my pain. I figured I was weak, despite having numerous tattoos and piercings that didn't even hurt. I wouldn't say I have a high pain tolerance, because my fibro pain cripples me, but some things just don't hurt. I was always told I was a hypochondriac, or my pain was from a different reason. When I made an appointment for a check up, I told my mom I've been tired lately and my legs hurt more, she told me it's because I've gained too much weight (my weight is fine. My vitals are healthy for the first time in 10 years, due to me gaining weight). Well, it wasn't weight gain, it was fibromyalgia! Which she rolled her eyes at because I called her out on invalidating my pain.

I'm scared though. I have it so ingrained in my head that I'm a hypochondriac, that I'm weak and can't handle the pain everyone deals with, that if there was an actual problem, I'd brush it off or be too scared to ask to go to the doctors because I'd be told it's not real. I've had ear pain/liquid coming from my ear/hearing loss for the past few months, and when I finally convinced my parents to let me go to the doctor, the doctor said my ear canal looks fine, so I'd have to see an ENT. It makes me think that I'm making up my ear pain, but my ear constantly feels like it has pressure in it, and if it pops it hurts terribly. The fact that my ear canal looks fine makes me think I'm making it up, but then it hurts and I get so confused.

I've also been having insanely bad migraines lately. Like, worse than usual. They feel so sharp, and I want to drill a hole in my skull to relieve pressure. It makes me think there's something more going on, because these migraines can last for days (which had rarely happened before) and they're happening more often. But I don't think I'd be taken seriously. Even when I complain of fibro pain, I'm not taken seriously by anyone. Occasionally people will understand, but they also don't understand how a certain movement can hurt me. I just feel like I'm faking it all the time, and that everyone deals with pain, so why am I so weak?

I don't know if this makes any sense, I am just ranting. But basically ever since I was a child, my pain was downplayed. Hell, even when I broke my leg and it was dangling from my shin, my mom wouldn't call an ambulance and made me wait what felt like hours (I don't remember actually how long it was) for my dad to get home to take me to the hospital. I was screaming and going in and out of consciousness, it was such a bad break there was a good chance I wouldn't walk on that leg again. And to this day, a decade later, my parents blame me for breaking my leg. They say if I had listened and stayed home to do my homework on a Friday night, I wouldn't have broken my leg. I don't know any 11 year old that stays home on a Friday night to do homework, but its my fault.

I know I get worried about things being wrong, because I am always in pain. But sometimes things seem off, and I'm always told it's not a big deal. And I guess they're right. I'm still here and somewhat kicking. I'm just, sick of always being in pain. The fibro doesn't help because I've had that pain for years, but only recently got diagnosed because my doctor actually listened to me, but I still worry that I'm faking it sometimes. But then I remember that there are days I can't even hold my tooth brush because of the pain.

It just confuses me so much. I apologize if this wasn't about fibro as much. It's more of just a rant of pain I experienced all throughout my life that was validated by fibro, but invalidated by everyone else. I hurt so bad, but I'm still alive and not bedridden, so everyone thinks it's not that bad. I feel like I'm going insane.

Can anyone tell me what supplements or therapies helped you the most? My teen son was recently diagnosed and I'm desperate for ways to help him. He's starting PT (with aquatic therapy) soon. Currently the only things he's taking are a multivitamin, acetyl l cartinine and magnesium glycinate (which helps him get to and stay asleep).

Thank you 💕

Idk if this post has already been made but I haven’t found one yet.

All of the fibromyalgia friendly jobs seem like “oh you had a job before your fibro hit so you have experience/education that allows you to fit in these fields” but I graduated highschool (legally) this year (at 17) and I’ve babysat, waitressed and worked as an art therapy studio assistant. The studio started at the same time as my fibro (literally like 2 weeks after, like a week before my 16th) I’ve gotten so much worse since then and only worked there for 6 months. I was going to do the whole cosmetology school thing and do a little bit of everything but I can’t stand or hold my arms up long enough for hair, my hands are so done w life that I can’t do fine motor activities for long enough to make nails a thing (I do my own and it takes hourssssss after having gotten my time down to 90 minutes for an xxl set before it got this bad)

I wanna do college and go into marketing now (particularly communications and team management but also maybe advertising? Idk) but unless I get a full scholarship (I have a 3.9gpa) I can’t afford that and idk what I can do before I get there. I can’t type fast at all or even for longer than 20 minutes before I need heat and immobility (something I know I need to work on for any professional career but I can train my hands through college but if I have to jump in to a typing job, I’ll never get the rest I need for a tolerance to actually build) I have OAS with anaphylaxis reactions so my parents rly don’t want me in the food industry, I can’t lift more than 5lbs on a regular-bad day and no more than 15lbs on a GOOD day so mom says I couldn’t do retail bc the merchandise needs to be moved (I was thinking like clothing store not like Walmart)

I’ve been completely and utterly stripped of the basic ability to survive on my own and I don’t know what to do or how to move forward. Any suggestions?

Hey! Anyone else get this? Is a dull deep ache unless I press the area then holy hell it's like another trigger point. It's not my armpit and there's no swollen nodes, just a tight, pulling feeling above both breasts, on the chest, close to the armpit. It's delightfully joined by some serratus anterior pain too (think, where bra straps hit the sides and slightly higher). My posture sucks and I'm having a Costochondritis flare - definitely know it's more MSK pain and hurts when moving my arm etc. More noticeable on the left side too 😒 I'm so miserable!

So I went to thanksgiving, and my family is at the point where we are young adults so we are coming from all over, but don’t have our own families to celebrate with so we still come together. I must’ve picked up some bug and have only slept 6 hrs in 2 hr bursts in the past 48 hours because I feel so bad. Small rant but I am miserable.

I don’t tend to get viruses easily, but once I get sick it takes me down, it can take months to recover. Now this is me needlessly worrying but I was hoping to return to school next semester and this could be my downfall. Now I’m thinking about other holidays, at what point is it appropriate for me to excuse myself from them. I fear that’s putting pressure on my parents to have to choose children and such.

Hello,

I have had pain in my body for a long while now and though I was diagnosed with fibromyalgia over 10 years ago I feel like something else is the problem. I have a small curve in my spine which I know cause some pain but I have also notice over the years that most of my pain is only on my right side, my allergies are almost always on my right side hearing and vertigo is almost always on my right side. What could it be that it is all happening to my right side of my body?

#fibromyalgia #pain #health

I went to a rheumatologist because my dad was recently diagnosed with lupus and I wanted to see if I had it too. I already have celiac disease and alopecia areata so I’m not new to autoimmune diseases. I was shocked and still a little confused when the doctor diagnosed me with fibromyalgia, mostly because I was only seeing her to rule out lupus. She gave me a brief explanation of it and some treatments but since I was shocked I didn’t ask the right questions. I’m reading more about it now and I can agree that I might have it but I think I have a mild form of it compared to a lot of others. I struggle with brain fog almost everyday. My body is always in pain but I go to physical therapy and I do think there are reasonable explanations for the pain. I am constantly tired and have had periods in my life where daily life is just freakin hard. I struggle with depression and anxiety and have always explained to my therapist that I am exhausted. Even if I wanted to live my life to the fullest, I just can’t. I’m 29 and shouldn’t be feeling this exhausted. Anyway, the diagnosis of bipolar disorder has been thrown around and I’ve never agreed with it. They think days that I have energy are my “hypnomanic days” and periods where I can’t function as depression but they’ve never understood that it’s my energy levels, not so much my mood. After this diagnosis, I’m wondering if those are what would be considered flare ups from fibromyalgia. I’m a little skeptical about the diagnosis because of how it came about but am continuing to find symptoms that match up with what I’ve been experiencing throughout my adult life. I still don’t know how to feel about it. Some moments I am grateful for finally feeling validated that my exhaustion is not something I can control but on the other hand I feel skeptical. I had no idea what fibromyalgia was before the diagnosis. Anyone else experience this feeling?

After my pain doctor cleared me for everything he said I was good to start getting pain blocks in my back so then insurance can clear me for occipital nerve blocks. I had done this 5 years ago on my neck and it worked amazing. It has just started to Wear off. Now I am special when it comes to that. Usually it lasts 1-2 years, I got lucky. Anyways when my pain Dr told me it was offered with or without sedation I was surprised! First of all I was not sedated when the did it last time. And second of all how can you be sedated when they need you to feel?

ANYWAYS SO I chose NOT to be sedated STUPID choice. I feel like the Dr did not even care. It was all of 5 seconds between the numbing and the so call lidocaine mix they put in my back. He definitely hit a nerve and my back has not been the same since

F (30) experienced bodily painful sensations since I was 20 that really freaked me out. I’ve had terrible period pains since the age of 10, where I had to be bedridden days at a time. Which completely ruined my education, but I was just screamed at for being lazy by my narcissistic mother; who never seemed to care that much about me.

I got involved involuntarily with psychiatry (by my mothers means) who completely disregarded my pains, and said they’re were part of a psychiatric diagnosis. That they’re were delusions. I had explained my pains felt like “radio waves” shooting into my body at the time, because I couldn’t really explain or properly tell them about the tingling, vibrating feeling in my hands and feet; which was getting incredibly worse. They told me I was psychotic for having these experiences. I even got raped while in involuntary hold! Nobody took me seriously. I was psychotic for believing I was raped by another patient too. It was overall a really terrible and traumatic experience, which scared me away from any health care professionals for years to come.

I have so much trauma, I’ve finally reported the incident to the police, and I’ve gone NC with abusive narcissistic family members.

For the past two years I’ve experienced what I believe is flare ups, where the right side of my neck and back will stiffen up, which will result in terrible, hour long pains with migraines.

It’s been coming back recently like never before, I had to go to the hospital where I got morphine, which took the worst of it. Then I got to my doctor this Wednesday who finally diagnosed me with fibromyalgia. I’ve otherwise thought it was endometriosis for years.

I’m both sad, relieved and furious. I wonder what my life would have looked like if I was just taken seriously in my pains when I was 20. The last 10 years has been hell with getting misdiagnosed, the pain worsening, and multiple other problems arising. Which really scared me away from any doctors, what if they disregarded me again. But I finally decided to speak up and got taken seriously, thankfully.

I can’t believe how easily my pains were disregarded as some psychological issue back when I was 20. I feel like calling up the doctors from back then and be like “I told you so”.

So frustrating. Just needed to vent. Hopefully I can finally receive proper support and treatment now.

Hey yall. Im 20 years old and AFAB and while i was out at a theater tonight, i startes experiencing quick, sharp pain in the left side of my chest where my heart is. It's been coming and going for about an hour or two and sometimes it turns into a weird burning sensation. I think it's in my chest and not my heart bc when i sit down, the pain worsens but i want to know if y'all have felt this before. Google is just making my anxiety worse, which is making the pain worse. Thank yall.

Edit: i also was a little short of breath and lightheaded, but mostly bc i was anxious. Its really hard to tell what's anxiety, what is my fibro, and what is an actual medical emergency

Edit #2: thank yall so much for your answers amd advice. Unfortunately, im still in pain (its ab 9 am as im posting this) but its not as bad and its DEFINITELY muscular and not heart related. I plan on calling my rheumatologist and telling her what all is going on tomorrow.

If anyone in here used to work a physically demanding job prior to their diagnosis leading them to be unable to perform that job - how did you start over with your career? How did you go about thinking about your next steps? I worked in landscaping and ran 3 greenhouses, and while I’m technically going back to work on Monday after a medical leave, I know I’m going to have to leave this job.

I’m trying for the plan for the worst, hope for the best route - going back to school to try and get a degree that can lead me to a job where I can both work from home and make a living. This is a new diagnosis for me, but I’ve been in consistent pain since May. It came so suddenly and I’ve had two distinct flares that left me so scared to get up that I’d cry in my bed over the thought of moving bringing me more pain. I know I need to find a way to make a living that can accommodate for flaring and the aids I’ve started using in the last couple of months.

But I don’t want to. I love my job. I worked hard earning a managerial position, I was a year away from taking over the greenhouses (my boss is retiring and has been training me up for two years just for that). I’ve gotten specific licenses, taken courses, gone to conferences, toured other production greenhouses. I worked 6 days a week and genuinely loved it. It had decent pay and benefits.

How do you accept that you have to step away from the livelihood that you loved and expected would sustain you for years to come? How do you get over that grief to move forwards? How do you even want to move forwards?

How many men here have Fibromyalgia?

Fibro makes me sleepy during the day, which is unfortunate because i used to sub and watch kids for a living. While my medication takes care of the pain aspect, it does nothing for my fatigue. I unfortunately, i was fired for falling asleep on the job. My psychiatrist made a note explaining the link between fibromyalgia and the daytime sleepiness, and after a conversation with HR, I still lost my job but now they understand. I am fucked because I just moved to a new spot and am no longer homeless, but if I dont get a new job by January, I may be homeless again. Wondering if anyone else has dealt with this issue.

Airports fine because I got assistance but absolutely everything else has been torture.

As much as I adore my family and friends I just want to get back home, hug my cat and cry for a few hours.

Everyone goes out of their way to see us and plan find these events I can’t miss and everything is a surprise.

Don’t get me wrong I’m incredibly grateful for having these friends and family, but no matter how hard I try to explain I can’t keep up on vacation anymore, everything is exhausting I dealing really bad with the cold and on a very painful period to add to it all.

I tried explaining I can’t make plans late at night or do long drives or walks, but everyone plans surprises and I’m not up for them. I need to be prepared, to know how many hours I’ll spend outside, to make sure I have comfortable and warm garments.

I feel very alone and like I’m ruining this for everyone else involved. Specially my partner who works very hard to keep up with all my needs and he only gets to come home twice a year.

Edit:

I came here to rant crying and desperate and reading all your kind words of support and tips have made me remember to be a little more grateful for what I do have, and adapt better to what I can’t change.

I hope the cool side of the pillow always finds you 💖

for those who are taking LDN, what was your starting dose?

Currently on 150mg 2x a day. Anyone notice benefits of taking is 3x a day instead of 2x?

I just spent the week with a 4yo in my family that I don’t get to see in person very often, and it was challenging sometimes to explain why some days I’m doing ok and can do all the activities we want, but sometimes I’m not feeling well and can’t play, even though I look the same and nothing happened. The best I could come up with is “my body needs a little extra help sometimes” and saying it’s kind of like being allergic to things which they somewhat understand. I’d like to be able to communicate the situation more clearly because (a) I want them to grow up with this idea as normal and not something to hide, and (b) they’re keen to know the why of everything and guaranteed to keep asking questions lol. But they’re also quite sensitive so I don’t want to scare them by introducing concepts like “being sick forever” or “a sick you can’t get better from” the wrong way, because obviously that could go very poorly.

They tend to absorb information the best from illustrated kids books, and I’m sure many people in this group have been in similar situations, so I was hoping someone might have a recommendation for a book to get them? Most of the ones I’ve found searching on my own seem to be about a sick mom, and I’d reallyyy like to avoid that if possible, because they’re also in a phase of taking things very literally so I don’t think they’d be able to get past the mom aspect and comprehend the broader concept. TIA!

I understand that Tinnitus can be a common comorbidity of Fibromyalgia.

However there is some inspiring stuff happening with Tinnitus Research.

This summer a new organisation that had been in the works for a year, came to fruition!

Meet Tinnitus Quest: https://youtu.be/Mm68m08O_Wc?si=qYRgCTehljwpqD2y

https://tinnitusquest.com/

A new, research focused charity, where the best researchers work in collaboration with patients, and young investigators pitch new ideas, hoping to be funded. It's been heartening to see the donations coming in, big and small. All the board give their time for free, and the diversity of skillsets are huge!

Sometimes different fields of expertise working together, can improve lives.

Stay Strong

Hey guys, I just need a little advice or positivity if no advice is available.

The ups and downs of Fibro and POTS is a cycle that is hurting my mental health more than anything. Sleeping, being awake, walking, drinking water; everything triggers my symptoms.

I can’t even eat without it triggering my POTS. I’ve been to the ER multiple times when I lose vision or can’t stop the muscle tremors and can’t handle someone asking if it’s a panic attack anymore.

I just want to have some sort of semblance of control of my body and it’s breaking me down that I don’t.

I don’t want to cry after every meal. I don’t want to be scared to eat in public. I don’t want to hide my disorders from my friends. I don’t want these disorders. I don’t want to resent my body anymore.

I often have ulcers on my tongue, like mostly around the edges, but all around the edges. And it hurts like crazy. Don’t understand how fibromyalgia is in play here. Has this happened to anyone else? If yes, did you recognize any triggers? What do you do to cure them? TIA!

I was diagnosed with fibro a few days ago by a Rheumatologist. I suspected I had it so it wasn't a surprise at all. Since I got diagnosed I am really feeling every symptom I have had. It feels like my brain has said "Oh so it has all been real" and is now letting me intensely feel everything all at once. Has anyone experienced this? Is it a known phenomenon? Is it coincidence? Thanks in advance.

I’m looking for a great pain management doctor/provider in the Phoenix area that accepts Mercy Care AHCCCS plan. I need someone with a helpful and non-judgmental attitude to treat my chronic pain associated with fibromyalgia. I appreciate any suggestions. Thank you!

I am going on 4+ weeks of body aches, on and off sharp pains, sometimes a burning sensation. It’s in my arms, lower back, butt, legs, knees, and sometimes I get a vagina pain. My hands sometimes feel numbness or weak. I get these waves of nausea. Sometimes I feel so sick I have to crawl into bed - I feel like I have the flu (which I read was a common feeling).

A couple of things to note, I had COVID for the first time back in July. It took me weeks to shake. The past couple of months have been super stressful, and about 30 days ago I stopped breast feeding. I’m 37 years old.

I went to the doctors 2 weeks ago and they did bloodwork and urinalysis. Everything came back pretty much normal except I had some abnormalities in my urine that indicated I had some type of infection. I’ve been on antibiotics now for almost 5 days and I still feel awful.

I’m going back to the doctors next week, but what’s the next step. Just say hey, I think I have Fibromyalgia, let’s rule some other things out?

I’m very scared. Health stuff scares the shit out of me. So I know my anxiety isn’t making my pain any better. Everyone I’ve talked to has said my body is on overdrive right now due to the last couple of months being super stressful. So I’m trying not get into my head too much.

Any help or guidance is appreciated. Thank you so much for reading.

years ago i read somewhere that people who experience F share common personality traits. I remember how the article talked about how women for instance who suffer from it, are closed off and self sufficient and that the constant one-against the world-battle leads to the symptoms we all so patiently endure.

I think I fall into the category and I feel like I am like a soldier who is on duty for a decade without leave. I have always been stoic without realizing it, I do dad jokes while being a lady in my mid-twenties, i am basically a 80 year old veteran in my mind and I feel like a mind shift away from that could be the key to recovery.

I used to want to know everything about F and the way the nerves don't work right or are damaged, but I have doubts about it all, maybe I just experience it, but maybe it is psychosomatic.

And I think to myself, maybe I hold tension in my mind and my body mimics it. I have tried to accept the things that have happened to me when i was a child that made me so alert, that gave me a feeling of a permament and unresolvable guilt (to exist?) and in battle mode and let it all wash over me and then just let it flow away. And then to learn to trust and to reach out and to feel connected, to be part of something that works and that is peaceful and friendly, especially the physical world, the wind is ok, the water is ok, the sun is ok, and I am a part of the universe, wanted and living.

Also I wear an amber stone and it does help, and i am not even ashamed anymore, I believe in stones, at least in that one, because i can feel it (i can feel EVERYTHING TOO MUCH)

ok ramble over