Fibromyalgia pain: Let's connect

When I was at Mayo, the doctor said even though I showed the signs and symptoms of fibro, he diagnosed me with myofascial pain syndrome. Since then my doctor locally is treating me for fibro. (I also have RA) Since all this is new to me, I have lots of questions...Do you have a lot of fatigue? Do you have more pain in one or two areas most of the time besides generalized pain? What do you take for your fibro? Thanks

With FM I have had constant pain for 49 years, getting worse each years. It is all over my body, right now seems to concentrate on my legs from feet to waist. I also have a torn rotator cuff that cannot be fixed and osteo arthritis, My spine discs 3 to6 also are deteriorating. I have constant fatigue and was told that never to expend energy longer than you can rest after each chore. Even taking a shower counts as having to rest for that length of time. I am allergic to fibro medications and can only take 4 T3's a day so the pain level is always there. Best of luck to you.

Have had fibromyalgia for what seems forever, and I am presently 75 yrs old (although there are days that I feel decades older). I have lots of other health issues which also bring pain along with the factors, so there are days that it's a bit like blurred lines making it impossible to distinguish if it's he fibromyalgia or a cocktail combo of the other health factors. Nonetheless, pain is pain and I am very grateful for the days that I don't wake up hurting a lot. Generally, once I'm up, have had my hot café con leche, and have been moving for a while, the pain(s) ameliorate. As the day wears on, I may have to lie down for a short time b/c I literally feel like I'm a balloon with the air escaping, and I HAVE to get off my feet, lie down and feel waves of pain from toes to cranium, with not-quite-deep and non-restorative "nap". Hard to get up, but do so since I don't have anyone to make meals, etc. When pain is nasty, I do take an Aleve or two (the only med that I can take since ALL prescription meds and OTC items are a no-go). A hot shower helps tremendously! I don't give in and just do nothing all day, unless I am really ill and pain level is 8 to 9 out of 10. Rheumatologist who diagnosed the fibromyalgia over 30 yrs ago prescribed cyclobenzeprine 10 mgs and I continue taking it at night. Even with this muscle relaxant, I can and do still experience fibromyalgia pain separate from other pain issues. You learn to "know" your body and what it's telling you. As I said, I have several serious issues such as polymyalgic rheumatica as well as osteoarthritis and neuralgic pain issues. It is what it is, and I try to make the best of each day that is a "good day." I had been on amitryptline also but had to drop it (via a "weaning schedule" though, not cold turkey). Ami has been mentioned by some members on this site for fibromyalgia pain, as it seems to help them without adverse effects. Talk to your doctor about the possibility of at least the cyclobenzeprine. I absolutely refused Lyrica and Cymbalta since they do have side effects and I am highly sensitive to drugs such as those (any and ALL antidepressants).
The brain fog and confusion are sometimes tough to deal with. I truly do forget just what day of the week it is, no matter what I do to jog the memory. My iPhone and iWatch help with that! Appetite is oftentimes affected, and so are tastebuds. So many issues to learn to cope with! Just don't beat yourself down. Be kind to yourself. Find joy in each day. And best of luck in dealing with your difficult journey.

Have you tried Lyrica? I have to take 150 mg am and bed but many times have to have one in the afternoon. I've been on it for years, only side effect is weight

As explained in my post, I absolutely refused both Lyrica and Cymbalta. Being so highly sensitive to antidepressants and meds such as these two, as well as pain meds, I am not placing myself in what for me would be harm's way. It's great that it does work out for you.🌺

Except for the meds, i am same at 76+; my 50 years instinct that drugs, i including OTCs - (astronauts took Actifed no-drowsy into space, "spaced" me out of consciousness) are not my friends, 2 ER visits, past & this summer for severe ADRs, gene test proved me right. can only tolerate the acetaminophen/ibuprofen, so that at night to help sleep. Also several "rares" that have no cure or effective treatment, so DIYing myself. The BP issue many actually be a cervical situation, not systemic (although have 2 likely suspects) so feeling need to go from NP to Osteopathic MD - like the integrated approach instead of just targeting. Have lost days - had to check TV guide to paper calendar (no-tech flip phone) on one occasion as same name shows both days; have city trash collection - more than once had to bring back due to Monday holiday for workers, but not me; spine issues can be helped by just laying down relieving physical stress - often take unintended, but refreshing naps. Seems the child of an anesthesiologist and public health nurse does not get any free passes! (but did get the familial dry wit and offbeat sense of coping humor - almost better than drugs. almost). Sorry we are in these messes, but grateful for the company.

The adage goes that "Misery loves company" but while it helps to know we are not alone in our various states of "misery," it is indeed disheartening to have to live with daily pain, albeit at various levels/intensities.... unfortunately for me, the overall diagnosis is "chronic pain syndrome," which is umbrella term for the way too many sources of daily, non-stop pain.
I, too, have spine issues. Learned just how extensive and serious they are when a pain management doctor ordered an MRI of the spine back in Jan/Feb of this year. While the results did shed lots of light on the "why" of my back/spinal pain and the shooting electrical jolts leading to my appendages, it all made me feel that much more determined to continue being ever-vigilant and protective of whatever procedures, drugs, injectables, etc. any professional says is an avenue for relief. I analyze and trouble-shoot, and have no qualms about saying "While I acknowledge your expertise and medical training, I respectfully do not accept that proposed plan." He had proposed a "nerve block" into the lumbar area. Uh-uh! Have had pain in that area for years, diagnosed as sciatica, which affects buttocks down to the feet. Learning that I have bulging discs, degeneration, and arthritis in that area explained a great deal to me. I had no idea that spinal stenosis also existed in my body, in addition to cervical arthritis. Really explained a great deal about the various problems and pains that other doctors had pretty much shrugged their shoulders and chalked it up to "you ARE getting older, and the body will tell you that with what you're feeling." Balderdash! Yes, I'm aging and accept that but do not use a blanket term for what my body tells me.
I recall when our kids were younger (three under the age of 10 at the time) and one male doctor told me to "...just get into bed and allow your body to rest and sleep." Seriously? I became pretty peeved and retorted "So you're volunteering to come home with me and take over the care of my three kids AND the cooking and housework also?!" His whole composure disintegrated, and I never returned to his office again. No, mothers don't get reprieves at all...
As women, we have it in our DNA to be caregivers, and not care-recipients...we just keep on going.
You are correct that a bit of humor can help, and smiles are visual hugs. Finding a ray of joy in each day is also helpful, because a positive disposition, smiles, and laughter rush endorphins to our brains. Something else that I've adopted for my self-care: I just LOVE to slip on those foot-mask socks, elevate my feet, and watch whatever I choose on TV. A hot pad around whatever body part needs it is the icing on the cake!
May you find many moments of humor and joy, give and receive visual hugs, and pamper yourself when you can.💖

We are so much alike - my lumbar MRI revealed Bastrop's (kissing disease of spine - horses crumble to ground when their spine is touched) and a rare Tarloc cyst, so PC right away says injection - NOPE. have so many trust issues with the "specialists" and their ghastly incorrect visit notes = which the medical corp will not force them to correct (have lawyers on speed dial in case reason does not prevail). Have systemic sclerosis (rare), Zoster sine herpete (internal shingles, can be life threatening if it so desires), PHN, TN, and treating my sweet old dog for an activation of their ordinary staph - MRSP - methicillen resistant staphylococcus pseudintermedius - confirmed by 2 cultures a month apart by 2 vets. can do to them what MRSA does to us. Problem is - is rarely zoonotic to humans but is taking hold in Europe since 2006. am at end of nice rope trying to get locals to test me per the vets' strong recommendations, was treating dog bare-handed before results back. Like the saying - the chances of being killed by a bunny are low, but not zero. and what is does to humans can be serious, especially to the senior and/or immunocompromised. One good thing in all of this - like yourself, i have been thru so much at this age, all i want is answers so i can take care of myself, decide for myself, and be responsible for myself - as long as we can. My radar is on constant blip - but a hoard of Justin's dark chocolate dairy-free mini peanut butter cups - 2 a day medicinally, cable tv, amazon prime, netflix, paramount+ (maybe others in time) few good friends locally, a 1st cousin downstate with as much genetic garbage as i have, my rescue dog, cats and cockatiels keep me busy enough. Am finally at age where don't have to, don't want to, can't make me, but i'm here if needed. My bucket list had only one thing - and i got that 18 years ago - a 2001 Jeep Cherokee (last of the real Jeeps) - and an amazing car guy/human being literally around the corner from me, just now replacing 23 yr old parts. he's saved me $64, 800 in car payments on recycled soda cans on wheels. After 31 years as a volunteer state and federally licensed wildlife rehabber, had to retire, but after being only one in 4th largest county in state, can rest easy as 7 others, including a vet, have stepped in. So in my "moments" i know i am in a better place than most. Can sit for 2 days (between chores) knitting a hat from a cherished skein of yarn - for myself while bingewatching (a show i never thought i would watch). Totes of fabric, no mortgage or car payments, senior tax breaks, HEAP - almost feels selfish (not permitted in our generation, especially girls) to not do anything i do not want to do, but i will yield to it. I do not envy the "youngers" - what survival skills are they gathering for their futures - i thought it a big deal to turn 25 - 1/4 of a century. I go back to when i told our friend group to remember what it is like being 34 as it will soon pass; wonder if they do. or if they have. Am off to dermatologist - had many spots removed over years, one on bridge of nose looking like Rudolph's, so will get checked. I told her if i ever need anything else removed or amputated, she is it - no one walks off with any part of me but her (and they actually called on the telephone after a portal message) After possible ghosting and gaslighting elsewhere, is some-one to trust. She earned it - deserves it, and am grateful for it, Keep in touch - was dragged kicking & screaming onto the information superhighway, but have found good in it.

I also cannot take Lyrica and Cymbalta because of side effects which end up giving me blurred vision.

God bless you! Certainly have a host of things to deal with, and an overflowing plate for sure.
But your sense of humor comes through clearly....as I said, God bless you!🤗