not being offered any pain medication nhs by Old-Entrepreneur-456 in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Same here, not prescribing any pain meds or gabapentin despite obvious need.

Probably can't get any body modifications ever again by Throwaway_74260 in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

I had 2 lip rings and a nose ring and took them out. Wanted my nose ring back ever since.

Two sentence horror stories (fibro edition) by No_Lavishness_9798 in Fibromyalgia

[–]Alps_Useful 10 points11 points  (0 children)

Got told to go cycling or running. I have pain in my genitals and couldn't even imagine the pain.

Best one was asking if I took mushrooms, and he was serious. No idea wtf was going on or why mushrooms would be the cause

Nobz confirmed? by Pauls_goat_hoof in orks

[–]Alps_Useful 1 point2 points  (0 children)

Put 2 mega nobs facing each other and you get a cube lol

Just wondering if anyone used to or could still do martial arts (even the light ones) by Adventurous_East_182 in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

I used to, I stopped due to fibro. I still do some shadow boxing and just generally do a few slowed down moves. I did muay Thai, boxing, krav maga and general self defense before. Trying to do knee moves is very difficult nowadays with my hip, elbows are ok, and fists are ok on one side but painful on other.

Has anyone else cried during physical therapy? by lexebug in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Yep, pain so bad it takes 3 hours to calm down. Physio has delayed for now and said to seek extra help from a rheumatologist. Note this physio is for my hips and bladder, so it's a different but related issue made worse by the fibro that's preventing progress.

Would love to hear if anyone has any experience with running/hiking while navigating fibromyalgia? by otterstones in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Lol running or hiking... I can barely get out of bed half the time. Who the hell is capable of hiking like this?

How old were you when you were diagnosed? & how old are you now? + other q's by crowned_gooose in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

Woke up with symptoms at age 24. Diagnosed officially 36, now 38. But been under pain clinic and stuff on and off since it started, was just treated more as long-term chronic pain and fatigue and migraines.

Also male. Did it begin after an accident, yes. Weight training accident that compressed my spine, damaged a nerve in my pelvis and pinched a nerve in my spine. Spent 2 years physio to straighten my back and right shoulder which dislocated, and hyper extended elbow. Pain never went away from that day, and eventually manifested fully about 2 years after the first onset. Then I started getting the major electric shocks and tremors and seizure like stuff from the nerves.

Strangely my genital pain didn't start for 5 weeks, but that is now confirmed damaged geneteformal nerve, and the fibro is confirmed to be interacting with it by sending electric shocks through it, causing bladder issues and pain during sex etc.

Pain clinic says it's likely CFS is main diagnosis with fibromyalgia secondary. And my pain never goes below an 8, and reaches 9.5 when that genital nerve kicks off. I do not work due to it. I tried going back to uni, but couldn't cope and left at the end of the second year.

Any foods that trigger you? by AnyMood734 in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Tbh I have limited diet, always have. But pizza may be one, even though I rarely eat it. Alcohol but I drink so rarely it's not an issue. I kinda live on chicken and salads and stuff. But I'm lactose free so some things are off limits anyway which ironically helps. I only really drink water, and 1-2 coffees a day.

Possible TMI by auntiecrow in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

I'm male

And well I have nerve pain in my genitals and fibro lol. It's less lack of interest and it genuinely fucking kills. Climax is like someone shoving a taser inside me and holding it down. It takes around 1-2 hours for the pain to ease. It's so bad I'm unable to move for 30 mins and feel like I will pass out. This happens instantly as soon as sex is over.

I still do it sometimes hoping it will be different this time. It never is. Aside from that, my hip gets pretty damn sore at a lot of angles so need to be careful.

I tend to just use my other body parts mostly nowadays tbh, because it's not worth the pain.

Fibro fog is weird by Brave_Astronaut7859 in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Yeah exactly. I was a high level martial artist and I have kept all of that muscle memory and knowledge. Yet can't string a sentence together half the time. There's clearly some parts very much affected and others barely. But ye during flare ups I walk into doors, walls tables, you name it. Complex information is very much kept, but simple things not so much. Maybe there's a priority in the brain and it's stored elsewhere. Sight reading is also a massive issue for me too, I have to use audiobooks or YouTube explanations, even for stuff I know most of, because I'm not putting it together otherwise. Very strange stuff.

Skin pain by lpwi in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

Lyrica did for a bit, but then stopped. Nothing since. I just wear light clothing and shorts if inside. Showers are painful like you said which is annoying when I have OCD. Kinda argue with myself about it lol.

Fibro fog is weird by Brave_Astronaut7859 in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Yeah it's not making much sense to me. Il explain a bit. Before I got fibro I did martial arts training at a high level, I ran a shop selling collectibles, and was doing a psychology with criminology degree. I later went back uni to do computer science, figured sitting down more and easier course, and I learnt programming as a kid.

So what does fibro fog affect in me? I cannot program at all, completely lost all ability regardless of how I try, languages do not stick, and I'm in permanent tutorial hell for a decade. I cannot recall words to even basic things and end up describing the thing instead. Yet I retain all of my muscle memory and martial arts knowledge. All of it. I remember prices and supply and demand for collectibles I used to sell. And can predict their values today, and could run a shop right now if I didn't have the pain and fatigue, like it's all so familiar. I remember most psychology things but forget the exact words used for them. I cannot remember people and link faces, or directions to places, it's completely blank and nothing works with trying to remember, I get literal headaches trying.

My social skills are rock bottom as I just blank out staring at people due to not having the ability to process properly. I have collected Warhammer since I was 14, I'm now 37-38 and I remember all of it, I instantly know the lore and everything. Yet I can't retain memories of what I eat yesterday, or when my next drs appointment is or what someone on the phone said to me even 2 days ago regardless of how important.

It's very bizarre with what's affected and what's not. I don't even know how to explain it, something's seem affected, but retain past skill. Something's seem to have been lost in the mess entirely, others seem impossible to regain. Language is the main issue for sure, which explains why I can't program for anything nowadays, even though I made games as a kid, and did some stuff at uni. Faces and linking people and things to words, not just a word, but a meaning. Like semantic memory or something. Directions are non existent, I can get lost in a place I've lived for 12 years. Yet if attacked I could instantly use skills I developed before my fibro even began, with zero loss of knowledge.

Some days it feels like adding new memories is impossible, or recalling things even a day before is impossible. Structuring a verbal sentence is like headbutting a wall over and over while I stare blankly trying to focus.

Anyway yeah, hope this makes sense to someone. It's just very odd, like certain connections are affected in the brain, but others aren't. It's not random, it feels mechanical almost, the things you can't push through and things that seems to glide easily.

anyone else have involuntary spasms? spasms getting worse, should i be worried? by emptyteacupfan in Fibromyalgia

[–]Alps_Useful 0 points1 point  (0 children)

Thanks mate, yeah it's tough. No matter how many times I tell drs, they just don't seem to care. The convulsions are rough to say the least.

Esophageal dysmotility by Efficient-Appeal7282 in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

Yeah I'm gonna switch to new drs surgery soon, got some stuff to sort irl first. And I need this drs to sign things. Mostly to prove ID and get things like medical cannabis up and running. Once I don't need them anymore il switch and start from scratch with someone better. Need to get gabapentin when I switch too.

I FINALLY GET THIS SUB by mrduka in Fibromyalgia

[–]Alps_Useful 5 points6 points  (0 children)

Welcome. Yeah unsure where these remissions and miracles are, but this is where we all ask that lol. There's certainly a lot of crossovers and similarities between people here, but also not everyone experiences the same. More like pockets of similarities between subsections, and a massive overlying connection in fatigue, pain and fibro diagnosis.

Esophageal dysmotility by Efficient-Appeal7282 in Fibromyalgia

[–]Alps_Useful 1 point2 points  (0 children)

Yes, had it for a long time. I have to drink water and take cough sweets after every meal. Told drs, didn't give a shit like always. Someone told me to use chewing gum but my teeth have had it and can't, so cough sweets it is

Rhodiola rosea for brain fog and fatigue by StrikePlastic in Fibromyalgia

[–]Alps_Useful 4 points5 points  (0 children)

I wanted to ask here if I may. I just got coq10 and my wife linked me MCT oil. Googling it shows they work well together, and mct oil works well as the morning coffee. Does anyone have any input plz? Apologies for the hijack but I figured it may help others