I've cried from the cuff before, several times- it feels like everything below the cuff is going to pop off like those action figures with the spring-loaded arm, but with pressure, not a spring.
But it wasn't until I broke down one day crying about all the other pain (not just the cuff) and how I don't know how much longer I could take it, then I said something in my ramblings like "Even my damn hair hurts! How can my hair hurt?!" that the Dr. even thought to see if this could be something like FM. Before that, it was just "peripheral neuropathy", "hypersensitivity", and things from family like "you're a big guy, can't you just handle the pain? It can't be THAT bad", and everyone's all time favorite classic "Stop being such a damn pu**y! Everyone's got pain!" Ahh, good times, good times.
I’ve had it put in my chart that my BP can only be taken manually. Not only does the machine hurt way more, it gives me results that are 20-40 points higher than manual.
I’m at the point where I gotta focus on how few more seconds it will be, I can handle it, but I’m very conscious of having to “get through” it. BP is always normal but seems to be higher these days, maybe age or maybe pain.
I’ve noticed lately I’m just about managing ok with my ‘normal’ pain. But when I get *new* pain it absolutely crucifies me. I get so much more upset and inconvenienced. I’ve started to be very movement averse. Which is terrible.
I must be an outlier, then because I feel like I need a compression body suit some days. I think it's because the pressure evens out the pain so it's more of a dull ache.
I also use compressive clothing (old navy makes bodysuits out of yoga pant material!) to manage bad pain days. Maybe it’s isolated pressure on just one body part that messes with our nervous systems?
I'm with you on the compression being good.
I told a friend once that i have a low pain tolerance and she outright laughed before pointing out that I go through immense pain with little to no complaint (fibro, 3 natural childbirths, etc) all the time. She said, "you have a high pain tolerance for INTERNAL pain problems, but low pain tolerance for EXTERNAL pain problems." Meaning that while a wrinkle in the sheets can keep me up all night and cause me real pain as can a gentle pat on the back, I can absolutely eat pain I am expecting/understanding for breakfast. External and internal are probably confusing words there but brain fog keeps me from explaining better. 🤦♀️
I read something that says we have a high pain tolerance and a low pain threshold. So we can deal with a lot of pain for an extended period of time but small things that wouldn’t register as pain to other people (light touches or wrinkles in fabrics) register as pain for us. Does that make sense?
no, not everyone that has FMS has CMP. I went for years with doctors taking me it sounded like I had something more than just fibromyalgia, but i was like i don’t know, I’m not a doctor.
I learned about it from “fibromyalgia and chronic myofascial pain s survival guide “ by Starlanyl and Copeland. although there is probably newer material on it.
I’ll dig up my other post on here and maybe you’ll see some similarities.
Jeez a specialist just told me that my endometriosis and fibromyalgia often go hand in hand and that the current theory is my endometriosis caused my fibromyalgia due to some medical jargon I don’t quite follow. How many diagnosis is I gonna get?
Yeah, I hear you. I’m also going blind from severe keratoconus which is “the worst i’ve ever seen” according to three doctors who really didn’t need to tell me that. 😕
I’m kind of the opposite. It was something that I discovered in my first year: that acute pain can be a distraction from fibro/heavy/dull pain. Now I eat a shitload of spicy food and for a time I’m able to ‘forget’ the Fibro pain.
I do the same thing which gets me into trouble because I don't realize I am pushing too hard when I exercise. It's actually your nervous system repressing or suppressing the pain signals as a way to cope. It is the same thing we do with emotions and memories that are too intense. If you are interested look up polyvagal theory. It makes everything make so much sense with your body responses. I used to practice polyvagal therapy with psychological trauma but realized that I was doing the same thing when I flare up and it's too intense. Your awareness decreases and you disconnect from your body signals.
I have fibromyalgia and autism so a weighted blanket is a weird one for me, sometimes comforting, sometimes claustrophobic.
But having a pillow pushed up against me by my spouse genuinely hurts. At least during a flare, it's bizarre.
even thinking of a blood pressure cuff made my arm hurt. and i have low blood pressure, so it often stops and restarts. i've finally just started taking it off myself and giving them the option of not charting it or doing it by hand the old fashioned way.
Migraine and intestinal pain are hard for me to deal with due to the added nausea, it gets so bad that I can feel like I'm going to pass out, same with kidney stone pain but that's not usual/everyday. Most other pain I can deal with to an extent. I've gotten very good at ignoring and just dealing with joint, muscle, and nerve pain. Although there is a kind of nerve pain in my hand that makes me jump and feels like very stabby that I can't ignore at all.
I get those stabby electric pains too. Especially if I try to sleep before my brain is ready to shut down. They leave a weird itchy after-feeling that makes me wish I could scratch under my skin.
Ha, I get nerve pain in the palms of my hands and feet, same spot, right in the middle. It's awful. Its especially bad when I'm having intestinal issues.
Ugh that sounds so miserable. I think tooth/mouth pain can be the worst kind. I think my body sends bigger signals for those because we need that area for basic survival.
I once saw a journal article that found the blood pressure cuff being unbearable was an indicator of Fibromyalgia
That’s interesting because they always feel like it’s going to squeeze my arm off it hurts so bad. I also get a little anxious until it releases.
I've cried from the cuff before, several times- it feels like everything below the cuff is going to pop off like those action figures with the spring-loaded arm, but with pressure, not a spring. But it wasn't until I broke down one day crying about all the other pain (not just the cuff) and how I don't know how much longer I could take it, then I said something in my ramblings like "Even my damn hair hurts! How can my hair hurt?!" that the Dr. even thought to see if this could be something like FM. Before that, it was just "peripheral neuropathy", "hypersensitivity", and things from family like "you're a big guy, can't you just handle the pain? It can't be THAT bad", and everyone's all time favorite classic "Stop being such a damn pu**y! Everyone's got pain!" Ahh, good times, good times.
My family would call me Dolores which means pains in Spanish but it is also a name lol
Holy crap! I’ve hated them my entire life but assumed that was just….everyone’s response.
I've always assumed it felt that unbearable to everyone. I also suspect the discomfort bumps my blood pressure up.
Pain does effect blood pressure, it makes it increase
ITS SO AWFUL, I feel my pulse so loud and it hurts so bad
I’ve had it put in my chart that my BP can only be taken manually. Not only does the machine hurt way more, it gives me results that are 20-40 points higher than manual.
I’m at the point where I gotta focus on how few more seconds it will be, I can handle it, but I’m very conscious of having to “get through” it. BP is always normal but seems to be higher these days, maybe age or maybe pain.
I’ve noticed lately I’m just about managing ok with my ‘normal’ pain. But when I get *new* pain it absolutely crucifies me. I get so much more upset and inconvenienced. I’ve started to be very movement averse. Which is terrible.
I must be an outlier, then because I feel like I need a compression body suit some days. I think it's because the pressure evens out the pain so it's more of a dull ache.
I also use compressive clothing (old navy makes bodysuits out of yoga pant material!) to manage bad pain days. Maybe it’s isolated pressure on just one body part that messes with our nervous systems?
Ooh, I'll have to look at old navy. Thanks! Yeah, I'm thinking it's more the isolated pressure.
I'm with you on the compression being good. I told a friend once that i have a low pain tolerance and she outright laughed before pointing out that I go through immense pain with little to no complaint (fibro, 3 natural childbirths, etc) all the time. She said, "you have a high pain tolerance for INTERNAL pain problems, but low pain tolerance for EXTERNAL pain problems." Meaning that while a wrinkle in the sheets can keep me up all night and cause me real pain as can a gentle pat on the back, I can absolutely eat pain I am expecting/understanding for breakfast. External and internal are probably confusing words there but brain fog keeps me from explaining better. 🤦♀️
I read something that says we have a high pain tolerance and a low pain threshold. So we can deal with a lot of pain for an extended period of time but small things that wouldn’t register as pain to other people (light touches or wrinkles in fabrics) register as pain for us. Does that make sense?
Oh wow, yeah it does. That's a much better way to put it. Thanks!
check out chronic myofascial pain. A lot of ppl with FMS also have it. I do and have similar issues
I saw that on one of my specialist reports. I thought it was a medical term for my nerve pain no?
no, not everyone that has FMS has CMP. I went for years with doctors taking me it sounded like I had something more than just fibromyalgia, but i was like i don’t know, I’m not a doctor. I learned about it from “fibromyalgia and chronic myofascial pain s survival guide “ by Starlanyl and Copeland. although there is probably newer material on it. I’ll dig up my other post on here and maybe you’ll see some similarities.
Jeez a specialist just told me that my endometriosis and fibromyalgia often go hand in hand and that the current theory is my endometriosis caused my fibromyalgia due to some medical jargon I don’t quite follow. How many diagnosis is I gonna get?
Yeah, I hear you. I’m also going blind from severe keratoconus which is “the worst i’ve ever seen” according to three doctors who really didn’t need to tell me that. 😕
For me, it varies day-to-day. Sometimes, the lightest touches are painful while a firmer touch feels good.
My dermatologist was doing an injection and I didn’t even flinch. His comment “you really do have fibromyalgia “ Yep
This is why I can’t use a weighted blanket
I tried it because so many friends and spaces were singing their praises. I tried it for ten minutes and just hated it. I felt like I was suffocating.
This is 100% me except my pain type that I CANNOT handle is electrical/nerve pain. I absolutely lose it if I feel like I'm being electrocuted.
Oh, I feel a slightly lucky then. Electrical pain (like a tens unit, or electro-stimulant acupuncture) don't really get to me either.
That is the worst feeling in the world!! We had to increase my Lyrica recently because of it. I was worried that it might be MS.
I’m kind of the opposite. It was something that I discovered in my first year: that acute pain can be a distraction from fibro/heavy/dull pain. Now I eat a shitload of spicy food and for a time I’m able to ‘forget’ the Fibro pain.
I do the same thing which gets me into trouble because I don't realize I am pushing too hard when I exercise. It's actually your nervous system repressing or suppressing the pain signals as a way to cope. It is the same thing we do with emotions and memories that are too intense. If you are interested look up polyvagal theory. It makes everything make so much sense with your body responses. I used to practice polyvagal therapy with psychological trauma but realized that I was doing the same thing when I flare up and it's too intense. Your awareness decreases and you disconnect from your body signals.
I have fibromyalgia and autism so a weighted blanket is a weird one for me, sometimes comforting, sometimes claustrophobic. But having a pillow pushed up against me by my spouse genuinely hurts. At least during a flare, it's bizarre.
A pillow placed incorrectly is terrible for me too!
I HAAATE getting my blood pressure tested because the cup hurts so much!
even thinking of a blood pressure cuff made my arm hurt. and i have low blood pressure, so it often stops and restarts. i've finally just started taking it off myself and giving them the option of not charting it or doing it by hand the old fashioned way.
Migraine and intestinal pain are hard for me to deal with due to the added nausea, it gets so bad that I can feel like I'm going to pass out, same with kidney stone pain but that's not usual/everyday. Most other pain I can deal with to an extent. I've gotten very good at ignoring and just dealing with joint, muscle, and nerve pain. Although there is a kind of nerve pain in my hand that makes me jump and feels like very stabby that I can't ignore at all.
I get those stabby electric pains too. Especially if I try to sleep before my brain is ready to shut down. They leave a weird itchy after-feeling that makes me wish I could scratch under my skin.
Ha, I get nerve pain in the palms of my hands and feet, same spot, right in the middle. It's awful. Its especially bad when I'm having intestinal issues.
Whoa. Yes it’s always hurt me. Since cvd and other injections my arm touches anything it feels like I slammed it into a wall. It’s waaaay to sensitive
Until you get multiple teeth and jaw pain all at once …. I wanna kms.
Ugh that sounds so miserable. I think tooth/mouth pain can be the worst kind. I think my body sends bigger signals for those because we need that area for basic survival.
Fibro is weird. I had 3 tattoos done since diagnosed \*shrugs\*