Chronic Fatigue Syndrome patients suffer from pain as well as Fibromyalgia patients. Sometimes it can be hard for patients with both to know whether their pain is coming from the Fibromyalgia or the ME/CFS. For me, I can usually tell the difference because I had ME/CFS first. I know that my headaches are coming from ME/CFS, as well as the back pain. The majority of the rest of my pain comes from the Fibromyalgia.
In most cases, if someone has both ME/CFS and Fibromyalgia, you can usually tell which illness takes precedence over the other by just asking one question: Which is worse for you? Fatigue or pain? If they answer fatigue, then their ME/CFS is worse. If they answer pain, then their Fibromyalgia is worse. In my case, the ME/CFS is definitely the worst and I was diagnosed with that illness first. I wasn’t diagnosed with Fibromyalgia until 2003 I believe.
For me, I experience most of my Fibromyalgia pain in the lower half of my body. My hips and legs will hurt tremendously and they hurt most of the time. Some days the pain is mild, other days the pain is so bad in my legs I can barely walk without tears coming to my eyes. I can tell the difference between Fibro pain and ME/CFS pain because each illness has it’s own pain intensity.
For example, when I first became ill with CFS, I had terrible back pain that would not go away after I had a back injury at work. But the pain in my back was like a constant exhausting pain – a dull but very deep and severe pain that was always there. It was more of an exhausting type of pain. I would still describe ME/CFS pain as an “exhausting” type of pain – pain that causes weakness. The Fibromyalgia pain is more intense, more sharp, more nagging but it doesn’t make my body feel as weak. The headaches are constant – sometimes they are worse than others but they are always there and not going away. I developed these around the time I was diagnosed with ME/CFS.
I have also found that the really deep, dull pain that comes from ME/CFS doesn’t respond well to painkillers. The Fibromyalgia pain will respond but the pain doesn’t completely go away.
How would you describe your CFS and/or Fibromyalgia pain? Which is worse for you? Can you tell the difference? Let me know!
By way of asking how people fare when their first illness with pain is NOT fibro or ME/CFS…& if they can differentiate…here’s my contribution on pain:
I can’t tell the difference in pain from FMS v. ME/CFS.
I can tell the difference between those types of pain & that from the arthritis.
I can sort-of differentiate migraines from headaches that might come from ME/CFS & FMS. I think that ME/CFS extends the lifespan of my headaches, sometimes into a couple months of hovering around 3 & spiking to 10 (scale 0-10 pain levels).
I also have something else adding to pain: uterine fibroids & ovarian cysts that come & go. I’m eligible for a hysterectomy, & when they flare up, they cause both pain & headaches & they eventually trigger flare ups of both ME/CFS & fibro, which makes those items worse in a vicious cycle. I can’t have the surgery because no one could care for my husband while I recuperated, & it might make the fibro pain worse anyway (I know I could control the fibro w/ OTC meds until they did an arthroscopic knee surgery in 2003, after that, I had to have Rx meds available for when it got really bad). Any surgery carries that risk for ME/CFS & fibro.
It also used to be that the arthritis was just in the joints I’d repeatedly sprained, but now, it’s all over, every joint, even my back, which apparently has a C shape, meaning scoliosis that has never before been diagnosed or even suspected. And, they’re revisiting lupus as discoid v. systemic (which would explain why my ANA wasn’t always abnormal) & the RA (esp. since the pain in my feet is so bad sometimes & the joints swell up so much my shoes don’t fit right). The discoid lupus suspicion is due to lesions they thought were eczema, then psoriasis, & they now believe could be associated with discoid lupus. Still waiting on that; who knows…I do know most of the lesions are on my scalp, & when that itching gets insanely bad, it triggers both migraines & fibro/ME/CFS flares.
I can’t recall when I didn’t have migraines, irritable bowel, & irritable bladder. I both started dealing with “the curse” & was diagnosed with Hashimoto’s at age 11 & they said I’d always had hypothyroidism. Untreated, it does tend to make pain of whatever sort worse, esp. period & migraine pain.
Since I’ve always been very heavy, everything pretty much got blamed on that even though thin people get the same illnesses. Fat people get one treatment for every illness: a 1000 cal diet & a list of exercises. That included the Hashimoto’s, believe it or not, which went untreated for 20 yr starting from when my pediatrician died & going on until, as part of an infertility workup in Scotland, labs showed it was there. It felt a lot better having thyroid replacement… I once told a research endocrinologist about that when I worked on a research unit (I’m a nurse) & we had a 23 yr. old guy who had end stage CHF from untreated Hashimoto’s & it reversed almost completely after a week of thyroid replacement. He told me it was a miracle I hadn’t had heart problems. I attributed at least part of that to having exercised fanatically with VHS tapes (fat people get thrown out of exercise programs & gyms on a regular basis, on the flimsiest of excuses, most of which boil down to their opinion that you’re ugly & they don’t want to look at you), dancing, hillwalking, walking instead of driving, & in Scotland, I could jog on the roadside & NOT have people try to run me over there, unlike the US, so I did. I also danced-square dancing, Scottish country dancing, ballroom dancing…all vigorous exercise by themselves. As the illnesses got worse & ME/CFS got added, the amount & intensity of exercise I could tolerate slowly decreased. I’d give anything to be able to skate inlines, bike, hillwalk, dance again…& most of all, to be a hospital nurse again.
I have pretty much lived most of my life with some sort of at least intermittent pain, so I do believe that yes, I do have fibro, but not instead of something else. I believe it’s BECAUSE of all those other things. It’s pretty common for people with chronic pain syndromes of other sorts to end up with fibro. I get tired from pain, & I hurt worse when I’m tired. Since I’m both most of the time, I can’t tell them apart.
I did have some help from ADHD, while it lasted, but the ME/CFS finally triumphed over it. I did get 22 yr of working with fibro, 11 of those w/ ME/CFS as well, before I had to give in to disability, & I know most of it is due to the ADHD.
I know we each have our own stories, all unique, all probably generating the same types of questions as to why we ended up with this. I hope that as they do research, they’ll answer some of them.
I have ME/CFS and I was wondering how you knew when you had developed fibromyalgia as well? I know they say the main difference is that fibro is primarily pain and ME is primarily fatigue but ME involves pain too so I’m not really sure whether this is just really bad ME or whether I might also be developing fibro.