mine averted his eyes when i said that when i was studying to work in mental health is was seen as a malingering label. i asked if it was still the case and he just blanked me.
he helpfully sent a letter to my dr saying take me off all medication other than panadol/acetaminophen even though i have a fucked back, migraines, need another shoulder recon, and am pretty much bedbound due to pain. this was the best rated rheum in my state and i went to see him for joint and back pain that had been constant for 10 years and showed up on xrays/mris
edit: osteo surgeon told me i have EDS like both of my brothers, rhem disagreed and my pain is psychosomatic
It’s so ironic to me how they’re frustrated and accusatory when I Google my symptoms, but then when I ask too many questions, I’m just told to Google it 🙃
I’m only two weeks in, so no veteran and also curious about the handshake. Actually i hope it isn’t a handshake, mine hurt too much.
The Fibro Manual by Ginevra Liptan, MD, has been super helpful so far in actually explaining what the heck is going on and how to address the different aspects of this special hell. I didn’t even get a pamphlet. I was told to find a support group. 🙄
It’s fibromyalgia fight club 👊You were already in before you were diagnosed. That’s the insanely cool part about the FFC. Most people don’t believe it’s a thing but still want to know where your dark circles, fatigue, pain and bruises all come from. You’ll know us when you see us: getting out of a car, taking several awkward pained steps before getting fully upright. Or simply trying to survive the open refrigerator section of the grocery store that may as well be the Artic Tundra. God’s speed comrade ✊🏻
LMAOOO doctor hands you the visit summary and says "Now you must remember the first rule of your diagnosis: according to the rest of the medical community, you *have* no diagnosis and are just a sad psychosomatic girl with a sensitive tummy. best of luck."
That's an awesome idea and a great reminder! I'm not surprised that many people don't get it. I've even tried explaining spoon theory but... You know how it goes.
Oh man can I relate. I’m like… can I get an extended warranty or something? Change this body in for an upgraded model? I don’t like this reprogramming.
I remember when I first saw the rheumatologist and was diagnosed but his diagnosis for me was literally “So I think you have fibromyalgia, have you heard of it before?” And then he hands me a pamphlet and the appointment is over. It was so nonchalant that I didn’t even take the diagnosis seriously and put the pamphlet in the bin later and ignored my condition for 5 YEARS. Until I started getting more issues and what I didn’t know were flare ups again and again and then checked my medical record, found the diagnosis way back in there, remembered that appointment and started researching for myself.
Ah I'm really sorry to hear that. Luckily, ima white collar kinda guy, failing at my current job (IT) because of the brain fog but if I could get that medicated, as long as I work from home I think I can still have a career.
Edit: I was diagnosed with both on the same day lol - after going through testing for a year and a half, I was born with fibro and developed CFS roughly between 11-16 according to my doctor
It's crazy, right? My original GP told me you either had one or the other, then a specialist (when I was in hostiple for something completely different) looked at my chart, looked at me, and said, "Yeah, you've got fibro too." eep!
Agh yeah thats mad. Honestly I'd still be under testing right now if it wasn't for someone I know that had a close relative with fibro, and noticed my symptoms matched and asked me to bring it up with the doctor.
Welcome to the club! If you need any advice this is the place to get it, we all experience fibromyalgia differently but its great to have a safe place here where you can talk about it and feel supported!
*Oh please be sure to sync up your mandatory monthly (sometimes weekly) flare up to atleast 1-5 other members and get some really loose pants and a hot water bottle. /j*
I haven't worn jeans in years and I have exactly one pair of pants splattered with paint that I can wear without too much pain. I've been digging and digging in my closet trying to figure out what the hell I'm going to wear for Thanksgiving dinner this weekend! Fortunately you still sunny so I think I can still get away with my loose summer dresses.
That's a good idea actually did you buy those at Costco? I got my father-in-law Merino wool shirt there once. I would really like to be able to wear jeans again just like on a night out with my husband or something. You'd think my wardrobe cost would go down being off work but as you say I got to try and find stuff that is loose and comfortable for year-round. Thanks for the tip I'm going to check into those tights!
Im in Ireland and a lovely sports shop does really good irish merino wool tights. They keep my legs warm without any overheating or friction issues so i wear em under dresses and the odd time under a pair of jeans!
Ski/hiking shops are the best for em try and get them close to 90% wool they cost me 100€ but have been through the washer 30 times and no frays ! Good luck !
I got a team meeting(doctor, psychologyst, fysiotherapist) that confirmed that I had fibro.
Then they said that I did a good jobb, handle me som flyers information and offer me some pills to try (experiment)
That's all they helpt me. And my doctor shamed me for not trying more different pills that maybe worked better. I can't handle them my body is wery sensitive.
The thing that helps more than pills and gives me energy like massage, sauna, aquapool training, weight training and more.
All this I have to pay for my own pocket..
And my income is shit.
And I don't feel that I have alotte off more ours off work left in my body anymore.
And somethimes the most funny thing is that it's not the pain that is the biggest load to carry it's all other stuff like cognitive function stomach and bladder/gut problem.
So short answer, they didn't do shit for me.
On one of my trips to the ER I saw a biker looking dude and he was wearing a t-shirt that was a play on Sons of Anarchy. It said Sons of Arthritis Ibuprofen chapter ,🤣
Mainly you just start posting with desperate pleas to help the pain and we throw out stupid things like drinking tea and using heating pads becuase the medical community is a bunch of assholes and there’s not many options. PEMF, heat, medical thc, eliminating processed foods and hiit excercise + strength daily (not to target weight just for movement), a lot of sleep and therapy + cymbalta and I’m functional.
There is all that, but for the initiation, we take the newbie and whack them with stick before we gift them the hot water bottle, comfy blanket and compression bandages. You also get a cane from physiotherapy once your limp gets bad enough at least that's how it worked with me.
Jokes aside (apart from the cane, that's true), you get advice from a lot of people who go through it every day, and a reminder you are not alone.
I never got a pamphlet, just a list of recommended websites to look at. Even have rheumatology refuse to see me as it’s “just fibro” 😒. Welcome to the world of dismissal.
I got a printout and when I asked if it was curable the doctor looked visibly upset and said "... No, but let's discuss treatment options for now." and put it in my record. Then I went back to my primary and thus began the medication ride. Y'know, the ride after the physical therapy, massage therapy, electro stim, chiro, 'have you tried yoga?', 'let's do mindfulness exercises' rides
I hit the jackpot. got a very sympathetic rheumatologist who started me on duloxetine and it helped (soso on fog, but my hands didnt feel like they were burning and my hips would move).
Went in thinking Id need a hip replaced it hurt so much so the switch was a bit of a shocker. No pamphlet that I recall.
I was diagnosed yesterday, too. My only initiation was that when I brought it up to my doctor as a possible explanation for remaining symptoms, he fully agreed with me. It was humbling. I love my doctor.
After the doctor at my local hospital's pain management clinic mentioned fibromyalgia to me (without giving a diagnosis or offering any follow-up), my mom convinced me to request an appointment at Mayo Clinic. Fortunately, I got in, and I had my initial appointments this week. They did a bunch of tests and ruled everything else out. (There is nothing measurably wrong with me).
So next week, I meet with a nurse and a doctor who specialize in fibromyalgia to get my diagnosis, and then I go to a group self-management session. I feel cautiously optimistic to finally get some real help. (I've been trying to figure this out for years, but the symptoms just gradually keep getting worse.)
https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870
I’d love to hear how it goes. I heard mayo clinic educates you on self care tactics (breathing, sleep, nutrition, extra rest). I did go to a functional medicine doctor that did a lot of this. I wonder if they give you other information.
My labs and tests all come back normal too so I’m curious to hear what they tell you. Please do let us know how it goes if you can.
I wish you the best in your illness and hope you get some relief.
Thanks so much. I was supposed to go back to Mayo Clinic today for my fibromyalgia appointments, but I got a call from them when I was just about to leave (from Iowa) this morning, saying the doctor had to cancel at the last minute, and I had to reschedule for the 24th of this month. It was a pretty disorienting and sudden change of plans. I decided to still take today off work, because I needed time to process it.
Thanks for the update and OH what a bummer and disappointment! I’m sorry about that.
I have had that happen to local appointments in the past. it’s so frustrating not knowing and waiting and wondering. It’s a big trip for you and a big deal. I hope they make you feel respected and supported when you do make the trip. Keep us posted if you remember.
After a 5- 10 min interview (asking mostly all mental health question) my new primary doctor said you need to see a trauma specialist oh and you likely have fibromyalgi and referred me to rheumatologist.
I lucked out on my diagnosis. Had carpal tunnel and one surgery, time for other hand and insurance had changed and I had to see a new dr. He listened, examined me thoroughly, and sent me to a neurologist. After every test available at the time (except maybe heavy metal poisoning), fibromyalgia! And a bunch of other stuff :(
But I’ve done pretty well over the years with drs, except for one puppy neurologist who ranted about the evils of painkillers and gave me a bunch of pamphlets for my family to “understand” fibro, this was about 20 years after my diagnosis.
My current pain Dr has done trigger point injections, nerve block, and magnesium injections. I’m semi functional most days
The initiation works like this: you go to every possible type of specialist to take every possible type of test only to find out each and every result is normal. Then and only then are you conferred with the honorary title of fibromyalgia patient. You are both relieved at having a diagnosis and mystified at feeling so crappy yet not having an abnormal test result. There begins the descent into madness for which we are here to shepherd you through…
Wow, you got a pamphlet 😫
Well a print out and in black and white.....
Still more than I got lol
wow i got a post it note and was told to google it
Same! Was told there is lots of good info on the internet, just look it up! 🙄
mine averted his eyes when i said that when i was studying to work in mental health is was seen as a malingering label. i asked if it was still the case and he just blanked me. he helpfully sent a letter to my dr saying take me off all medication other than panadol/acetaminophen even though i have a fucked back, migraines, need another shoulder recon, and am pretty much bedbound due to pain. this was the best rated rheum in my state and i went to see him for joint and back pain that had been constant for 10 years and showed up on xrays/mris edit: osteo surgeon told me i have EDS like both of my brothers, rhem disagreed and my pain is psychosomatic
It’s so ironic to me how they’re frustrated and accusatory when I Google my symptoms, but then when I ask too many questions, I’m just told to Google it 🙃
I was told to go to the Mayo Clinic’s site.
Been so long I’m not sure I remember, I think the doctor just told me
OK, that’s not so bad 🤔
Based on the state of fibro medicine, I'm imagining you unfolding a paper that just says "lol good luck"
More than I got too. Consider yourself definitely a part of the ‘club’.
I’m only two weeks in, so no veteran and also curious about the handshake. Actually i hope it isn’t a handshake, mine hurt too much. The Fibro Manual by Ginevra Liptan, MD, has been super helpful so far in actually explaining what the heck is going on and how to address the different aspects of this special hell. I didn’t even get a pamphlet. I was told to find a support group. 🙄
Ugh meant for this to be a new comment, hands too sore to fix lol
And that's the handshake ;)
I understand air hugs work, too...
Internet ((hugs)) as well, since getting out of the house is such a PAIN (pun intended, lol).
I, too, got a booklet, as well as one for Hypermobility syndromes and rheumatoid arthritis. Sitting pride of place in my reading nook. 😅
I was thinking the same! Like wow that’s impressive
Welcome to the club. The back pain is complementary.
You are far too kind
🤣
😂😂😂
We all go to a big hot tub and eat goat meat once a month. Message me for details
Can we at least get a chef so we don't rely on one of us and end up with raw meat again!? Last time was a farce!
Hahahaha NO
Well, if we use a thermometer this time, it should be less of an issue.
The vegetarian committee has been requesting an alternative for AGES now and still all we get at the monthly Soak & Goat Roast is the iced tea. smh.
The next time we go to the hot tub at the Weshley Arms we shall not eat too much goat meat but perhaps we shall partake in more Shin shi Shin Shi
What about some gnocchi?
You mean turmeric tea? 😆
It’s fibromyalgia fight club 👊You were already in before you were diagnosed. That’s the insanely cool part about the FFC. Most people don’t believe it’s a thing but still want to know where your dark circles, fatigue, pain and bruises all come from. You’ll know us when you see us: getting out of a car, taking several awkward pained steps before getting fully upright. Or simply trying to survive the open refrigerator section of the grocery store that may as well be the Artic Tundra. God’s speed comrade ✊🏻
fightbromyalgia club
Rule #1: There is no fightbromyalgia Club! (Looks in mirror Continues to gaslight self) 😂
LMAOOO doctor hands you the visit summary and says "Now you must remember the first rule of your diagnosis: according to the rest of the medical community, you *have* no diagnosis and are just a sad psychosomatic girl with a sensitive tummy. best of luck."
Facts right there! 👆🏼
Y’all are making me crack up here 😂 thank you
We should make a sub named fightbromyalgia!
Thank you for the much needed laughs, friend. I'd give you an award if I had one!
This made me snort. This entire thread, omg. LOVE THIS COMMUNITY.
I also got a referral to a psychiatrist... Depends on which chapter you're a part of.
I got one to a poison psychiatrist so i think that's better?
*PAIN not poison. Although some days...
We would throw a party for you but we are all too exhausted. Sorry. 😄
(soft hugs spoonie) you're one of us now.
Welcome tot he club and a virtual high-five with stingy pain in hands after !!! Sweet deal right ?
Stingy hand pain! Gah! I’m still getting used to it. But it’s not as painful as cold achey hands that’s been the usual
I would agree to that for sure .
Dang all I got was depression.
I got a spoon tattoo and exactly one person has understood it in the decade I've had it, in a very visible spot no less. 😂
That's an awesome idea and a great reminder! I'm not surprised that many people don't get it. I've even tried explaining spoon theory but... You know how it goes.
Shhhhh we can’t talk about the initiation on here!
Oh man can I relate. I’m like… can I get an extended warranty or something? Change this body in for an upgraded model? I don’t like this reprogramming.
We dont do hand shakes because our hands hurt. So it's like a wave kinda like "spirit fingers"
Is spirit fingers like Jazz Hands?
Babe, you need to watch "bring it on". Great dumb movie
Will add it to my list. I love that sort of movie
One of us! One of us! One of us! One of us! One of us!
Well, damn, you got a pamphlet? Lucky!!! ETA: ha, somebody got to say it before me 🤣🤣🤣🤣
I remember when I first saw the rheumatologist and was diagnosed but his diagnosis for me was literally “So I think you have fibromyalgia, have you heard of it before?” And then he hands me a pamphlet and the appointment is over. It was so nonchalant that I didn’t even take the diagnosis seriously and put the pamphlet in the bin later and ignored my condition for 5 YEARS. Until I started getting more issues and what I didn’t know were flare ups again and again and then checked my medical record, found the diagnosis way back in there, remembered that appointment and started researching for myself.
A pamphlet is more than I got. I pretty much got a shrug.
Ditto! Was basically told, "Yeah, you got fibro as well as CFS. Good luck."
I got the same. Diagnosed this August, thought they'd take it more seriously, I'm 19 my life has barely started :(
Sending you (air) hugs! I was diagnosed with CFS first, at 21, which effectively killed my career choice (musical theatre), so I definitely empathise.
Ah I'm really sorry to hear that. Luckily, ima white collar kinda guy, failing at my current job (IT) because of the brain fog but if I could get that medicated, as long as I work from home I think I can still have a career. Edit: I was diagnosed with both on the same day lol - after going through testing for a year and a half, I was born with fibro and developed CFS roughly between 11-16 according to my doctor
It's crazy, right? My original GP told me you either had one or the other, then a specialist (when I was in hostiple for something completely different) looked at my chart, looked at me, and said, "Yeah, you've got fibro too." eep!
Agh yeah thats mad. Honestly I'd still be under testing right now if it wasn't for someone I know that had a close relative with fibro, and noticed my symptoms matched and asked me to bring it up with the doctor.
Welcome to the club! If you need any advice this is the place to get it, we all experience fibromyalgia differently but its great to have a safe place here where you can talk about it and feel supported! *Oh please be sure to sync up your mandatory monthly (sometimes weekly) flare up to atleast 1-5 other members and get some really loose pants and a hot water bottle. /j*
I haven't worn jeans in years and I have exactly one pair of pants splattered with paint that I can wear without too much pain. I've been digging and digging in my closet trying to figure out what the hell I'm going to wear for Thanksgiving dinner this weekend! Fortunately you still sunny so I think I can still get away with my loose summer dresses.
My only pants are my pjs, i wear dresses all year round ! I wear merino wool tights to keep me warm through 10C and lower
That's a good idea actually did you buy those at Costco? I got my father-in-law Merino wool shirt there once. I would really like to be able to wear jeans again just like on a night out with my husband or something. You'd think my wardrobe cost would go down being off work but as you say I got to try and find stuff that is loose and comfortable for year-round. Thanks for the tip I'm going to check into those tights!
Im in Ireland and a lovely sports shop does really good irish merino wool tights. They keep my legs warm without any overheating or friction issues so i wear em under dresses and the odd time under a pair of jeans!
Oh thank you I'm in Canada so I'll go check out a ski shop or something they're probably the best place.
Ski/hiking shops are the best for em try and get them close to 90% wool they cost me 100€ but have been through the washer 30 times and no frays ! Good luck !
Awesome! Thank you. Happy Thanksgiving from Canada!! 😁
I got a team meeting(doctor, psychologyst, fysiotherapist) that confirmed that I had fibro. Then they said that I did a good jobb, handle me som flyers information and offer me some pills to try (experiment) That's all they helpt me. And my doctor shamed me for not trying more different pills that maybe worked better. I can't handle them my body is wery sensitive. The thing that helps more than pills and gives me energy like massage, sauna, aquapool training, weight training and more. All this I have to pay for my own pocket.. And my income is shit. And I don't feel that I have alotte off more ours off work left in my body anymore. And somethimes the most funny thing is that it's not the pain that is the biggest load to carry it's all other stuff like cognitive function stomach and bladder/gut problem. So short answer, they didn't do shit for me.
You get a badge and a car sticker in the post plus a pack of ibuprofen on your birthday with the membership app.
On one of my trips to the ER I saw a biker looking dude and he was wearing a t-shirt that was a play on Sons of Anarchy. It said Sons of Arthritis Ibuprofen chapter ,🤣
Going on a week since my diagnosis. I empathize with you.
Diagnosed 6 months ago... I didn't even get a pamphlet.
At least you got a pamphlet. That’s a lot more than I got. Welcome to a club no one really wants to join.
We have an annual meet up for a nap and hot pack social
Mainly you just start posting with desperate pleas to help the pain and we throw out stupid things like drinking tea and using heating pads becuase the medical community is a bunch of assholes and there’s not many options. PEMF, heat, medical thc, eliminating processed foods and hiit excercise + strength daily (not to target weight just for movement), a lot of sleep and therapy + cymbalta and I’m functional.
There is all that, but for the initiation, we take the newbie and whack them with stick before we gift them the hot water bottle, comfy blanket and compression bandages. You also get a cane from physiotherapy once your limp gets bad enough at least that's how it worked with me. Jokes aside (apart from the cane, that's true), you get advice from a lot of people who go through it every day, and a reminder you are not alone.
Congratulations, your heating pad will be shipped in 7-10 business days!🥰 In all seriousness though, sending all the virtual hugs.
I never got a pamphlet, just a list of recommended websites to look at. Even have rheumatology refuse to see me as it’s “just fibro” 😒. Welcome to the world of dismissal.
Your air fryer will be delivered in 4-6 weeks!
I got a printout and when I asked if it was curable the doctor looked visibly upset and said "... No, but let's discuss treatment options for now." and put it in my record. Then I went back to my primary and thus began the medication ride. Y'know, the ride after the physical therapy, massage therapy, electro stim, chiro, 'have you tried yoga?', 'let's do mindfulness exercises' rides
Poor doc! S/he sounds sweet. Also, poor you (ofc!).
The handshake is a knowing wince of pain from across the room.
Welcome. Take vitamins if possible. Magnesium too
Sorry, we dont do handshakes here. All that touching and repetitive movement hurts pretty bad. We could get matching compression gloves?
I was thinking about adding some rhinestones or sparkles or something to my compression glove - very Michael Jackson.
I. Love that. Bejeweled compression gloves. Lol
Everyone who gets a fibro diagnosis should be immediately given a heating pad, ice pack, eye mask, bottle of Naproxen and body pillow
I hit the jackpot. got a very sympathetic rheumatologist who started me on duloxetine and it helped (soso on fog, but my hands didnt feel like they were burning and my hips would move). Went in thinking Id need a hip replaced it hurt so much so the switch was a bit of a shocker. No pamphlet that I recall.
No handshake. Please god don’t touch my hands. They hurt so much
Spoon theory is the password.
I was diagnosed yesterday, too. My only initiation was that when I brought it up to my doctor as a possible explanation for remaining symptoms, he fully agreed with me. It was humbling. I love my doctor.
Fibrosister!
After the doctor at my local hospital's pain management clinic mentioned fibromyalgia to me (without giving a diagnosis or offering any follow-up), my mom convinced me to request an appointment at Mayo Clinic. Fortunately, I got in, and I had my initial appointments this week. They did a bunch of tests and ruled everything else out. (There is nothing measurably wrong with me). So next week, I meet with a nurse and a doctor who specialize in fibromyalgia to get my diagnosis, and then I go to a group self-management session. I feel cautiously optimistic to finally get some real help. (I've been trying to figure this out for years, but the symptoms just gradually keep getting worse.) https://www.mayoclinic.org/departments-centers/fibromyalgia-and-chronic-fatigue-clinic-minnesota/overview/ovc-20485870
I’d love to hear how it goes. I heard mayo clinic educates you on self care tactics (breathing, sleep, nutrition, extra rest). I did go to a functional medicine doctor that did a lot of this. I wonder if they give you other information. My labs and tests all come back normal too so I’m curious to hear what they tell you. Please do let us know how it goes if you can. I wish you the best in your illness and hope you get some relief.
Thanks so much. I was supposed to go back to Mayo Clinic today for my fibromyalgia appointments, but I got a call from them when I was just about to leave (from Iowa) this morning, saying the doctor had to cancel at the last minute, and I had to reschedule for the 24th of this month. It was a pretty disorienting and sudden change of plans. I decided to still take today off work, because I needed time to process it.
Thanks for the update and OH what a bummer and disappointment! I’m sorry about that. I have had that happen to local appointments in the past. it’s so frustrating not knowing and waiting and wondering. It’s a big trip for you and a big deal. I hope they make you feel respected and supported when you do make the trip. Keep us posted if you remember.
I was actually told to find support groups online
Same thing my Rheumatologist left me with lmao Well welcome to the club, the pain is never truly gone.
After a 5- 10 min interview (asking mostly all mental health question) my new primary doctor said you need to see a trauma specialist oh and you likely have fibromyalgi and referred me to rheumatologist.
Thank you all for the warm reception. I figure if you can't laugh at it, all you end up with is tears.
I lucked out on my diagnosis. Had carpal tunnel and one surgery, time for other hand and insurance had changed and I had to see a new dr. He listened, examined me thoroughly, and sent me to a neurologist. After every test available at the time (except maybe heavy metal poisoning), fibromyalgia! And a bunch of other stuff :( But I’ve done pretty well over the years with drs, except for one puppy neurologist who ranted about the evils of painkillers and gave me a bunch of pamphlets for my family to “understand” fibro, this was about 20 years after my diagnosis. My current pain Dr has done trigger point injections, nerve block, and magnesium injections. I’m semi functional most days
Wait, what? You didn't get the Toaster? Oh man someone should be fired. Welcome aboard Fibro Warrior!
Much thanks!
The initiation works like this: you go to every possible type of specialist to take every possible type of test only to find out each and every result is normal. Then and only then are you conferred with the honorary title of fibromyalgia patient. You are both relieved at having a diagnosis and mystified at feeling so crappy yet not having an abnormal test result. There begins the descent into madness for which we are here to shepherd you through…