My husband asked me to stop talking about my pain or health or mental health and just talk about interests. It hurt. I used to never talk about anything and kept it all in, but he asked me a few years ago to start talking about it. But I guess it was more than he was bargaining for. The thing is, I don’t talk about my health and pain level everyday, and when I do I make vague statements like, “I’m in pain all day or can you rub my shoulder, it’s hurting a lot today.” I don’t talk about the fatigue or brain fog or how much I just needed to sit down for a moment because I’m in so much pain that every movement is hard. He doesn’t know how much pain I’m really in or how much of my day and mental energy is spent on managing everything I have to do for my kids and family while not falling apart or triggering a flare. I don’t even remember what it felt like to not be in constant pain. Anyhoo, my therapist recommended I post in a group because I have no one else to talk to, so here I am trying it. Thanks for reading.

It's bizarre how quickly we can go from feeling good to hell.

Yesterday I was down bad. My fatigue had me having trouble standing. My weakness made me skip washing my face and doing my nightly routines. I was in bed all day. I had the world crushing my shoulders and squeezing me tight. I was so depressed and felt as if life wasn't worth it. I imagined how my family would take it if I took my own life. How could I explain to them that it was the best thing for me. Don't worry I don't want to die, I'm also in therapy and seeing a psychiatrist. But in these flares nothing else matters, I can't find anything but misery. I feel as if I'll never get better, and I fall on my bed in dread and despair. It's cruel and unfair.

Then I wake up in the morning feeling totally okay. The fatigue is there but not overtaking. The pain is there but not bothersome. I can move without feeling a thousand pounds on my shoulders. The weakness is gone and I can do things. I'm washing my blankets, cleaning my bathroom, playing video games with my mom. Changing my Chickens water. I am okay and I feel as if I have a chance at a normal life. Not perfect, still ill, but I am doing and that's all that matters.

These two things are so opposite of one another it's almost unbelievable. How I can be tortured so terribly one day and then the next it's like it never even happened. Fibromyalgia is cruel and unusual. I am glad I have this communities who understands exactly what I'm talking about.

Thank you for reading.

I work a full time job from home but have progressively worsened over the past few months. My motivation is absolutely non existent.

I've actually become adverse to using my brain. Like any amount of thinking hurts. Anyone else experiencing this?

Anyone else experiencing this … impulsivity and an immediate need to do things when I have the energy.

I have a LOT of projects around the house that I’ve let go over the past year or so. 🫣 Lately I’ve gotten tired of them enough that I’m trying to tackle them. Problem is, I have several things started but not complete. Basically, if I see something that needs to be done, I’ll immediately start on it - but for obvious reasons, most of the time can’t finish it in one go. So, I’ve got lots of open projects … but at least it’s obvious what I’m working on. 😂

Am I the only one like this? It’s started recently with a few good energy bursts.

I have Fibromyalgia and i’ve had pain for the better part of 20 years. I’ve been shuffled around from Doctor to Doctor on every pain med you can think of until they criminalized pain meds and cut me off. I started going to a methadone clinic because i was tired of being cut off and going through withdrawals but the methadone clinic was a horrible place to say the least and without going into detail, I had to stop going there too so I had to go cold turkey… Again . I dabbled in illegal drugs and the Feds came after me to put it lightly. The only thing the doctors will put me on now is Subutex and gabapentin neither of which work. I started taking 7oh out of desperation and it works but it’s $40 a pop and the Feds are banning it. The Subutex doesn’t touch the withdrawal I get when i don’t take the 7oh. I’d like to add that when i’m medicated i exercise and that helps. But without medication the physical therapy/ cortisone shots and all the other bs doesn’t work. I know America is supposed to be this great place that everyone wants to move to. But it’s hell for those trying to obtain pain relief.

Im just curious if "grounding" helps with pain? I dont have grass where I live, so I cant test the theory. So I just purchased a grounding mat. Gonna try it for a month to see. Anyone try it before? Or am I just wasting more money?

Hi-
I received a diagnosis of fibromyalgia today. I’m questioning it though because my symptoms are not soreness. My main symptoms are severe stiffness throughout my body that doesn’t go away even with exercise, burning and stinging in my back, periods where my back freezes and I can’t move or walk, leg weakness, brain fog (I’m starting to forget how to spell) and debilitating fatigue.

I suffered a massive heart attack in November and now have 3 stents. The fatigue and pain have gotten worse since my heart attack.

Are your symptoms similar to these?

not like... looking for a diagnosis or anything, just annoyed. I keep getting hit with random moments where even after taking a full breath, my body acts like I haven't inhaled in 12 years.

(imaging and such shows my lungs are fine for the most part, despite some obvious scarring on the lower left lobe. Eh, doc says it's fine.)

Hi everyone,

I’m posting here to share our family’s long, exhausting journey over the last few months and hopefully connect with anyone who has gone through something similar, or who has experience with a Somatic Pain / Somatic Symptom Disorder diagnosis.

The Context & Timeline:

• Mid-January: It started with weakness and mild pain at bedtime after doing daily household chores. Initial blood tests (CBC, LFT, KFT, urine) were mostly normal aside from a mild UTI. Vitamin D, B12, and uric acid treatments didn't bring any relief.
• Early February: She suffered a severe, widespread pain episode from head to toe (screaming in pain) and was admitted to the hospital for 5 days. Full workup (CRP, ESR, Thyroid, Lipid, Vits, LFT/KFT) all came back completely normal. Discharged on basic pain and digestive meds, but the restlessness, constant pain, and inability to rest at home continued.
• Late February: Switched to a general physician as the pain became dominant in her legs. She had severe discomfort daily where even Ultracet and leg massages gave no relief. Blood tests remained normal.
• March (The Hospital Emergency Phase & NCV Scare): We were visiting the ER on alternate days just for symptomatic pain relief. An LS Spine MRI was done (which was extremely hard for her to endure due to the discomfort of lying still). MRI showed no clear signs of sciatica explaining the bilateral leg/thigh/calf pain. She was admitted to a hospital in another city for 10–12 days where an NCV test suggested "probable demyelinating polyneuropathy with painful quadriparesis." This caused immense trauma and panic for our family, thinking her nerves were permanently damaged.
• April (Second Opinions in Delhi): Hopeless, we took her to a neurologist in Delhi who did a thorough 2-hour examination. He consulted a neurosurgeon to review the LS Spine MRI (confirmed normal/not causing the pain) and concluded her nerves were actually fine, ruling out CIDP. He referred us to a rheumatologist.
• Meerut Consultation & Diagnosis: While waiting on autoimmune panels (ANA, Anti-CCP, HLA-B27—all eventually came back negative/normal), her pain was so severe that a rheumatologist temporarily put her on a short course of steroids (Methylprednisolone 16mg, which has since been tapered off). Recognizing that all physical/radiological tests were normal despite severe physical symptoms, the rheumatologist directed us to a Neuropsychiatrist.

Current Situation & Prescription:

The neuropsychiatrist evaluated her and explained that having completely clean reports is actually a good foundation for treatment. They diagnosed her with Depression / Anxiety / Insomnia / Somatic Symptoms (? Somatic Pain Syndrome) and started her on a targeted medication regimen (including medications for nerve-pain/somatic signaling like Gabapentin/Nortriptyline, SNRIs/SSRIs, Aripiprazole, and sleep/digestive support).

From the rheumatologist, she is currently only keeping HCQS 200 and Telmikind, while her primary treatment is now under the neuropsychiatrist.

Questions for the Community:

1. For those who recovered from somatic pain via neuropsychiatric treatment, how long did you remain on full medication after your symptoms normalized?
2. At what point do doctors typically start tapering off these medications, and how gradual is the process?
3. Did anyone experience a return of physical symptoms while tapering down, and how did you manage it?

I’m sick of having fibromyalgia. I am sick of my legs always feeling numb, or on fire. I’m sick of not getting a full nights sleep. I’m sick of nobody understanding, and doctors not helping me 😭 the amount of breakdowns I have had has been a lot. And now I go back to work tomorrow and I k ow it’s going to be bad! Ugh 😭

I’ve had this pain before, but it generally feels like a band around my midriff. Now it feels like the membrane surrounding the lower front and lower back of my ribs are on fire. And it extends up into my mid-back. Is this just a symptom of fibromyalgia I haven’t realized?

Hello! I (28F) am wondering what kind of over the counter med to take for the shooting leg pains? It's the kind of pain that feels like your bones are being hacked at by tiny goblins with fire pokers. I'm slowly going up on duloxetine but in the mean time I need some relief.

Advil? Tylenol? Naproxen? Muscle relaxer? Heat? Ice? Please let me know what has helped you.

has anyone else found they’re losing or lost their sleep routine? any routine at all? time is just blending together, days of the week means nothing, now i can’t even sleep from so much pain and it’s like that doesn’t even matter too. and fuck is my spine killing me

VERY long story short. I started Cymbalta/duloxetine at my absolute sickest with both fibro and MECFS. Around the same time I started Pain Reprocessing Therapy/ nervous system regulation/brain retraining and since then I've been steadily improving.

All my symptoms have been reducing and I've gone from being bedbound to being able to work from home, walk a mile, and go to concerts.

Tbh, I've never credited duloxetine with any of my recovery. I've believed it was all the nervous system work.

This is because progress has been really slow and I've continued to improve well after the time period when I'd expect to see duloxetine continue to make improvements. I've also seen improvements in all my various crazy symptoms across the board, not just pain.

The thing that's stressing me out just now is I've decided to taper off. I came from 90mg to 60mg just fine. I then went to 30mg and I've been there for 6 weeks.

I am STRUGGLING.

My pain is up. My fatigue is WAY up. I feel sick and exhausted in a way I haven't for many months. And it's been going on weeks now.

Can I expect these symptoms to settle once I've finished going through withdrawals? Or is this my life now? Is all this pain just an effect of the taper, or was duloxetine masking the "real" pain all along?

I really want to be med free and I want to fully commit to nervous system work and my healing, but this flare is really knocking my confidence.

TL;DR Can Cymbalta taper cause rebound pain that will eventually go away once I stabilise?

Does anyone have any tips on what works good to alleviate pain? I’ve been using voltaren & lidocaine but sometimes I can’t even touch the site or even have a bed sheet touching my skin.

Hello! We are preparing to move to the Newport area in a month and I'm hoping someone here has a referral of a primary care doctor that is familiar with fibromyalgia. I'm willing to drive up to 1.5 hours because I know the coast has some limitations. I'm nervous because I've had doctors disregard my diagnosis that I pushed on getting for 20 years. I have other conditions such as diabetes, anxiety/depression and CPTSD. I'm needing someone to help me keep my current medications up and A1C checks as well.

Because it was a Double Sixes day! I had low pain AND executive function! I ran five loads of laundry, put two away, and four sets of dishes (two scrubs of pans and two dishwasher loads)!

It's so damned rare that I feel like doing tasks and also am able to do them. Spend those spoons when you got 'em. I feel bad about playing hooky from work but ya gotta triage this shit.

I’m a 32 YO female who has recently been diagnosed with fibromyalgia but has been suffering for years. I’m glad I finally know what it is (also diagnosed with early beginnings of psoriatic arthritis) because I have been suffering with much more frequent flares & worsened symptoms.

I work full time for NYC dept. of education, have an approx 2 hour commute to and from my job, and I work with students with diverse special needs. I can’t quit my job & no longer have sick days so if I take a health leave it will be unpaid. I desperately need help and was hoping cymbalta may be an answer.

If you’ve had success with it or other medications/treatments please share. I will try anything in order to keep my job. 😔

Also- if anyone recommends any over the counter meds/anything that helps them during a flare, please let me know.

Thank you!

I have a C5-C6 disc protrusion and had a cervical epidural steroid injection on Aug 12. Before the shot, I mainly had neck pain/stiffness with some intermittent arm tingling. Since the injection, my nervous system feels extremely reactive.
I’m now getting burning/tingling/vibrating through my neck, shoulders, upper back and arms, plus occasional jaw/face/lip/tongue sensations, throat tightness, shakiness, and pressure sensitivity. The worst part lately is deep neck pain when lying down.. Ican fall asleep, then wake 1–2 hours later in severe pain. Almost like pain waves in my body.
Repeat MRI reportedly showed no major structural change or cord signal abnormality. I’ve seen spine, PCP and pain management. I’m on pregabalin and amitriptyline and doing gentle PT, but even a light workday can trigger a big flare. I can no longer work
Has anyone had a prolonged nerve/sensitization flare after a cervical epidural like this? Did it eventually calm down, and how long did it take?

Yesterday, I (33F) finally got diagnosed with fibromyalgia after lots of tests to rule out mainly Psoriatic Arthritis.

I'm relieved, I've done some reading and there's a lot of things that I do recognize from other symptoms. However, I'm also currently being tested for FND and I have autism, and have noticed a lot of overlap between the three. Does anyone else deal with either one of those as well?

How do I handle this with taking next steps in things like therapy? As in, how important is it to find a physiotherapist or therapist or coach or whatever, who understands all three of these things?

Any other tips on how to go from here? Rheumatologist just said to find a physiotherapist but didn't really have any other advice.

My doctor recommended me to take it months ago but i was too scared to do it. Today i felt really bad and decided it was time, im still very scared of it. Would to hear how it affected any of you guys who are taking it

Hello 🌼
Does physiotherapy or massage help you? Which kind of massage? Also,how often?
Thank you 🧡

Any one benefitted from CGRP inhibitors? I do have migraine.

Anyone saw improveds beyond migraine relief? Example for (Fatigue, neck pain/TMJ, brainfog, body pain, PEM)

Has anyone tried a TENS unit? They say it can disrupt nerve pain signals but before I invest just wanted to see if anyone had any relief from this option.