I don't wanna be here anymore. Goddddd. It's my second week in a horrible flare up, my hands are sore, I need my hands to do EVERYTHING. I can't just not use them. And I'm so tired. My meds are not working, I took more and more and I just end up high and having panic attacks but the pain doesn't even get better. I'm drinking so that maybe I can have an hour or so of feeling mildly better but I know I'll feel worse tomorrow morning cus of it so yeah. I'm so tired. And I really do not wanna hear some stupid positive "life is worth living" advice, cus it really isn't. And it hasn't been for a good while and this is just the final straw in a long line of straws for the past few months. I really hope some of you guys are having a better time than I am.

Seen so many posts here. I just want you all to know I really feel seen after reading so much here. It’s not misery loves company. It’s just company thats comforting.

Thank you.

I'm okay but OWWWWW...

Really hate it 😒

My energy has come back a little since my doctor bumped up my iron (I have severe iron deficiency anemia & waiting on the referral to hematology to come through) and I thought I was just burnt out and avoiding my mom, but I realized I am doing it with everyone/everything!

The worst is my best friend.

October is a big month for me & I’m getting invited to all these things. Usually I always accept and my friends/family are understanding if I end up canceling because well, I have been “sick” since I was a teenager. But I found my self not even wanting to give them an answer. For example, my bestie is throwing a bday party and usually I am hyped and wouldn’t miss it for the world but this time I just hearted the invite. My mom keeps asking about Halloween with my daughter and I just keep saying IDK depends on the weather. My daughter’s aunts keep inviting us to decorate cookies and I’m like that sounds nice, we will see…

I am even doing it for stupid shit & things I really shouldn’t be! I needed to shower and I just sat in the bathroom and played around on my phone instead and then I skipped out on a follow up appointment for my eyes when I really wanted to try contacts and spent a lot of money on it. I noticed I am doing a lot of this and it reminds me of my friends with ADHD who get paralyzed when they’re overwhelmed. Like they know they need to do it, they’re standing there looking at whatever the task is and they just cannot. I’m not usually like this though!!

To be fair, my body is going through a lot and I just wanna check out and go lay around on a beach somewhere but that’s not realistic. I’m gonna fuck myself over if I don’t keep up on stuff and I don’t want to loose the precious friends I have because I can’t even be bothered to answer. I know they’ll shrug it off the first couple times but if it becomes a pattern I don’t blame them for stopping the invites. I want to get ahead of this before it gets that bad.

Any ideas/suggestions? Anything that helped get you through? I’m pretty sick of this whole wait and see thing because there is no magically get better in my future, you know? Ugh.

Kinda need to just drop this somewhere for the sake of I have no one to talk about this and hopefully can get some advice. I was on nortryptiline for months but I was starting to get concerned at just how often I was getting heart palpitations on it that my doctor has started cross tapering me to duloxetine, I’m currently at 30mg but meant to increase to 60mg next week.

I just feel completely different in many different ways, I am yawning and my eyes are watering all the time? My pain generally is better but certainly still present which is good aside from the fact that I’ve been getting period-like cramps on and off for days (I’m nowhere near my cycle Rn) but emotionally I just feel kinda numb except for the need to feel something- literally anything. On top of that I realised pretty quickly that there’s certainly some sexual side effects going on, I cant climax at all which is just adding to the helplessness in not being able to feel much of anything right now.

Overall I just don’t feel like myself.

I didn’t realise how scary of a medication this was until after I started taking it because I was so desperate to get off nortryptiline I started cross tapering literally the next day after I got perscribed it but now I’m concerned to increase because it could make things better or way worse.

Anyway I just needed to let this out because I’m very much not a person to talk about these things (especially the sexual stuff) irl and i think it’s too early to talk to my doctor at least until I am fully just on one medication. If anyone has any hacks on helping with any of these side effects aside from changing medication (which I will be looking into if this continues) please let me know

EDIT: just gone up to 60mg and already have migraines 🥲

No matter where I sit - my recliner in the living room or my desk chair in my office - my neck hurts like I’m holding it in a funny position. The pain is primarily on my right side.

I can’t figure out what is causing it, so I’m considering that it might be my fibromyalgia. Does anyone else experience this?

I'm recently diagnosed. Am also bipolar. My rheumatologist chose not to put me on the treatments usually prescribed first line for this citing those meds could trigger manic episodes. So the only thing she prescribed is Baclofen 10mg 2 times a day, and as y'all probably already know it does nothing.

The past 3 days I think I'm in a flare. The Allodynia is really bad. My entire body feels like I have a really bad sunburn. Soaking in a bath with Epsom salt hasn't worked. Lidocaine patches and topicals don't work. Cortisone cream doesn't work. Clothes hurt.

My entire body hurts like I got beat with a metal baseball bat. Even walking hurts.

Today I have a migraine. 650mg acetaminophen and an Advil liquid capsule aren't touching it.

I don't know what to do. I'm afraid to go to the hospital because I'm nearly certain my labs will come back normal, and imaging probably won't show anything either. I'm worried that the Drs will just think I'm drug seeking and not take me seriously.

Is going to the hospital ER worth the trip? What are your experiences? Should I go or do y'all have any suggestions that have worked for you that maybe I haven't thought of yet? I'm not seeking medical advice, just want to know how y'all deal with this.

Thank you in advance for your responses.

My symptoms started my senior year of college. I recall struggling to get up the steps to my dorm. Then brain fog started hitting me. Made it harder to study and focus. My doctor thought I was drug seeking. Took 6 years before I was finally diagnosed and and got treatment

i Also have scoliosis so this is extra double fun!

I got a visible band for my birthday! I have fibro, dysautonomia, of course suspected me/cfs. I’m so excited! People that have one, what are your favorite features? How did it help?

Question/ but the context is longish: (new to posting so sorry)

Might just need someone to hit me with a reality check ...

I'm (23 F) not working right now, but it's rapidly coming time to either return to my job or quit. While not working, my pain has drastically improved, but as soon as I began adding back in activities I'm having pain again.

At this point I've decided that I'm going to be in that level of pain forever if I intend to engage in any exercise, job, activity, etc involving moving. It's livable mostly with extensive pain management techniques. I live at home due to pain, so I don't currently have major expenses, but that obviously is not long term sustainable.

So I recently began dating a girl, and I'm noticing that intimacy is causing increase in pain. Even cuddling there is about 1 position I can constantly be in. So sex, I enjoy sex in a relationship, I know that's obvious but I was raised catholic, so sex for enjoyment is hugely guilt inducing. My gf would probably be okay with little sex because she is not super confident in her body, she really likes cuddling/kissing though (me too obviously). Theorically, I could probably engage in limited cuddling and sex on good days without increasing my pain. however, comprehensive and mutually intimate sex is more painful. Again, I could manage the caused pain with pain management strategies.

Do I just need to accept that as a disabled person I don't get to engage is sex and intimacy like I would like to? It feels frustrating that I could do it if I didn't have other things to do. But realistically, I do need an income. I think I just need some people to remind me that money to take care of myself is more important that sex.....

Or am I just experiencing leftover Catholic guilt?

Tldr: So sex increases pain, and working increasing pain. I know I could manage the added pain of one but not both. Advice, support, idk anything helps ...

edit: assume I'm in pain ... (Duh), assume I am doing EVERYTHING in my power to manage pain. I am in PT ( again fucking duh ?) .

I have been sick for a little over 4 years and finally got diagnosed this week with POT's and Fibromyalgia. I have a two degrees but can-t seem to find any work from home jobs. I currently work part time at a physical job and it is killing me. My degrees are in Human Services and Counseling but recently had to quit that field because of how unethical it was, personal things, etc. So, I would love a work from home job in the medical field or mental health field - human resources, billing, client intake, something, anything like that. And honestly I'm losing hope with being able to find somwthing work from home and just framing with the pain and fatigue is making me pretty depressed.

Does anyone know any good work from home places? I wouldn't even mind to send someone my resume here if they'd be willing to recommend me for a job. I feel guilty and insane even feeling frustrated I guess. Just a rant if anything.

Here in Brazil, there’s a very strong stigma surrounding fibromyalgia within the medical community. Some doctors even call it the “Forbidden ICD” and discriminate against fibromyalgia patients by implying that they’re faking their symptoms or being overly dramatic, treating them with suspicion and as if they were drug addicts, and dismissing their suffering.

Thankfully, my fiancée hasn’t had to go through that yet, but the possibility makes her sad and afraid. To cheer her up, I usually tell her that, fortunately, those doctors with no ethics or integrity haven’t crossed paths with her yet. And when they do try to mistreat her and make her feel like a victim, I’ll tear the whole hospital down! That usually reassures her and makes her laugh, despite everything.

One day I woke up fine and suddenly I started feeling heaviness in my chest and got anxious. Took WFH that day and went to a GP, he called ECG, lungs scan etc. All came out normal, and my doctor was clueless.

Suddenly I get panic attacks even when I am not stressed. Do you guys also get?

Wanted to give an update on my journey. About maybe 3 months ago I decided to see a rheumatologist who was familiar with fibromyalgia. It was a good visit and she gave me a referral for a physical therapy and it's a blood work. Also told me I have osteo arthritis.

I did aquatic therapy for about a month and now I need to join a gym that has a pool so I don't have to pay for the physical therapist.

Turns out my vitamin D was critically low at 18 and I am on a 50,000 unit dose of D2 weekly for 12 weeks. Been on it for about a month and I feel amazingly better. Like stupidly better. In my entire mental state is just lighter. Basically back to my normal self.

Went back to see the rheumatologist yesterday. Still have pain in my right shoulder and she just said well you have osteoarthritis. Not exactly encouraging.

She checked my joints and then we started talking about my shoulder. I told her the pain is not in the joint. She said the joint was really shallow, and all the muscles and such around there are part of the joint. My traps are super tight.

We talked about massage which is going to be my next step.

Hello

I am 30 and was diagnosed with fibro over a year ago now with a year prior of symptoms.

I used to have some piercings, lip nose ears; tongue belly. Took them all out at 23.

In the last year I’ve decided to go and get things re pierced and add a few more. Also waiting on tattoo appointment. I always wanted to

The issue is every single piercing I’m having a problem with. Not healing right, piercing bumps, lumps under the skin. So slow in healing. The only thing different between years ago and now is literally fibromyalgia

But when I had my bloods done (admittedly a while ago) no inflammation markers came back.

Could this just be a weird situation? Is it fibro? Should I get another blood test?

I’m just confused and a bit annoyed

I’ve been suffering with the feeling like I have needles in my scalp for the past month and I’m already being treated with Lyrica, Klonopin and Trazadone. Just restarted LDN 4.5. Just wondering if anyone has found anything to help. I can’t sleep more than 4-5 hours at a time and it’s miserable.

I am military. I’m going through a required class this week. It is 8 hour days of sitting in a classroom setting in a chair, with very little breaks.

Yesterday, around 1 pm, my skin started vibrating/tingling from the overwhelm to my system and it wouldn’t stop until around 5pm when I was home and resting. I woke up feeling horrible this morning (to be expected). This class is an absolute requirement for me to get a medical separation/retirement in the future. They also said that if I miss anything more than a few minutes this week that I will have to retake the entire course. I’ve decided that I need to push through it and get it done, but I honestly have no clue how.

Any good recommendations to get through the week? Obviously I can’t use weed/CBD being military, and I’m on gabapentin 100mg, but it isn’t helping at that dose and if I increase then it makes me feel super sick from side effects.

Thank you guys for being such a great support system!

Hi,

This is an EXTREMELY long post, so please bear with me. I've been on this rollercoaster for decades. Over the years, I've experienced severe flares (8-10 on the pain scale) following minor surgeries for things unrelated to fibro. These intense flares usually take a full two to three months to "unravel" and subside. Up until now, it's never happened that way for pushing through what was just the onset of a flare.

While it was still warm in August, I decided to steam cleaning my carpeting (without moving any furniture) using my lightweight upright. I paced myself, stretching out cleaning of the three bedrooms and hallway upstairs, one at a time resting for days in between.

By the time I was finishing the last room, the tender/trigger points in my right shoulder and neck started throbbing, and I pushed to finish the hallway thinking I'll deal with the usual flare-up. Rest a lot, and then start tackling the stairs and livingroom.

The flare in my shoulder was still manageable, but kept escalating no matter how much I rested, took my meds, and alternated doing all the remedies in my bag of fibro tricks.

It's been around 7 weeks now, and just as it did post surgeries, it seems to be in a hyper-flare up state. Since I'm right-handed, it's even harder to manage and is throbbing as I type.

Against my doctors initial advice, I went to a local pharmacy (where they're extremely helpful finding and fitting aids) to get a sling. I just needed to take the weight of my forearm off of my shoulder when I'm not laying down or sitting with it supported by pillows, but she was concerned about me getting frozen shoulder.

This isn't a standard sling, because we found that it's too painful to keep my arm at a 45° angle. What we came up with is comprised of a narrow strap with padding around the neck and a simple cuff to hang my wrist in. I do gentle pendulum exercises to keep my shoulder from stiffening up.

I'm writing this long-winded message to you today, because I'm struggling. Something as simple as raising my right arm to throw my hair in a scrunchie as I usually do, suddenly makes my fibro scream akin to what I imagine it'd feel like stabbing that tender point with a knife. So many weeks in and it's still tripping me up. It's traveling into my traps, my neck, and giving me headaches. I still can't lift anything, raise my arm, it's hard to dress, etc. I know there's gotta be a light at the end of this tunnel. I'm at a loss about how to get there.

Has anybody else experienced an unrelenting change in their fibro's behavior like this after so many years? Are there any things that you do to calm severe arm flare-up s?

The pharmacy had an issue with my pregablin 225 mg. They were two days late. I already was in a pretty bad flareup, but once I didn't have my meds, it got sharply worse and now that I've gotten them and have taken them I'm starting to improve. It's frustrating but at least I know it's doing something.

for the past two months my left leg has been getting weaker. I did a nerve and muscle condition study which came out fine, so my neurologist suspects fibro (he requested an mri regardless). he said it’s not common for fibro to be one sided, but it’s possible.

other random symptoms that I’m hoping I’m not the only one with: sometimes my left leg gets intense pain, so I need to take two advil to make it shut up. sometimes my left shoulder aches. occasionally I'll have issues peeing where it's hard to start (and I had an episode of urinary retention I had to go to the ER for). my exhaustion isn’t that bad, I have POTS and I just feel extremely tired after walking around all day. I use a cane, helps with the POTS and recently has also been helping with my annoying leg. occasionally I’ll get annoying headaches.

I’ve been trying to increase my activity by walking more often, but nothing is changing except for the fact that my leg feels a bit weaker every week. and this week it’s randomly getting cold like it’s losing blood flow for a minute or something

Hi all. I’ve just joined this community as my doctor seems to think I have fibromyalgia. I’ve been convinced for years I have EDS but that’s a whole other story. Yesterday he prescribed me duloxetine, and he wasn’t pushy or anything. Just seems to think it’s the best way to tackle many of my issues, and he even says that if it does it’s job and works well for me, I may even have an easier time doing some of the other things I’ve neglected as a result of fatigue, low energy, low mood, etc. I also have some depression and wicked anxiety so duloxetine does sound like a great place to start.
I gotta admit tho, I am scared. My husband is picking up my prescription today, so today will be day 1 for me. I was on an antidepressant/anti anxiety over a decade ago, and I think it put me into a mini psychosis of sorts? Idk, I lost my mind, felt like something else was controlling me and felt that I had no choice but to die. So I tried. Just like that. No thoughts like this before, and none since. Just about an hour of the most insane I’ve ever felt and it almost ended my life. I was hospitalized for 8 days after that, and have not been on any meds since. Now, I was heavily drinking at the time, and now I have been sober over 6 years. So I’m sure things will be different this time. I’m also older and have my life in order and have great support. But I’m still scared, nervous, unsure… I
also gaslight myself often and now I’m even wondering if I even have fibro. I ask myself if my pain is even ‘that bad’. I know my anxiety is nuts but even that feels more like OCD rumination, and my depression is mild. I still work a physical job, I see family and friends sometimes, I have a busy life. So I guess I feel like I’m not sick enough to be starting meds. But at the same time, I just want relief! I want to not be in pain every day of my life. I want to not be so irritable and miserable simply because I’m sick and tired and I don’t have space or energy for anyone else. This isn’t the true me, I just don’t even know who that is anymore because I think I’ve been going on fumes for so long.
Idk why I’m even posting this. I’m sorry it’s so all over the place. I have more to say but I will stop here. I’m just grateful communities like this one exist where I can rant and hopefully feel seen and understood. Honestly I’ve been feeling pretty isolated as of late, just knowing that for my whole life, no one has truly understood what I experience on a day to day basis. I do have support, but it also can feel lonely at times.