I was diagnosed about 8 years ago but the symptoms of my condition has been getting much worse lately, so I researched what it could be and the symptoms seem more likely to be fibromyalgia, I just wondered if any one else had had the same problem?
Diagnosed with CFS/ME but I have more symptoms of Fibromyalgia
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Hi Mandiavfc,
The two conditions overlap, and are often co-diagnosed. As far as I can gather, it's really a sliding scale, with cfs sufferers experiencing more of the fatigue with some of the pain, and fibro sufferers having more of the pain, and some of the fatigue. Of course, a lot of people have both in equal measure
I'm only a fibromite, although I do get quite a bit of fatigue. There are several people here who have a diagnosis for both, so I'm sure you'll get some good advice!
@Auriel you're double-diagnosed, aren't you?
The two conditions overlap, and are often co-diagnosed. As far as I can gather, it's really a sliding scale, with cfs sufferers experiencing more of the fatigue with some of the pain, and fibro sufferers having more of the pain, and some of the fatigue. Of course, a lot of people have both in equal measure
I'm only a fibromite, although I do get quite a bit of fatigue. There are several people here who have a diagnosis for both, so I'm sure you'll get some good advice!
@Auriel you're double-diagnosed, aren't you?
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I am like Jemima....more pain, but with a fair bit of fatigue as well. It's hard to say, though, how much of the fatigue is actually caused by the pain because it takes so much energy to maintain through the pain.
If your symptoms have been getting worse lately I highly recommend going back to your doctor(s) to let them know, because it could be the development of something different that you may need to know about. It's always unwise to jump to a conclusion or make a diagnosis yourself based on what you think is going on. New or worsening symptoms could be a sign of something serious, or on the other hand, of something treatable, so you owe it to yourself to have it checked out.
If your symptoms have been getting worse lately I highly recommend going back to your doctor(s) to let them know, because it could be the development of something different that you may need to know about. It's always unwise to jump to a conclusion or make a diagnosis yourself based on what you think is going on. New or worsening symptoms could be a sign of something serious, or on the other hand, of something treatable, so you owe it to yourself to have it checked out.
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Hmm, this is an interesting proposal & reasoning that M.E. is distinct from CFS. And that "M.E. is a result of an acute and chronic Enteroviral (E.V.) post-encephalitic injury". Which means that everything he writes is biased towards his hypothesis and the seeming "clarity" is not acknowledged. E.g. brains scans can be interpreted in quite a number of ways. I'd suggest being careful with taking this as 'truth', but if it helps you understand your condition, that's great.
The pain described here is only partly like FM-pain. No differences/overlap between the two described in this.
But I like Hyde's sentence "I believe CFS is not a disease or a syndrome, but is a mixed group of undiagnosed significant illnesses." Same might go for FM. (But, as I've said, I don't believe anything, hunches aren't beliefs.)
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Hmm, I occasionally wonder whether in my case it might be the other way round, after having been able to get all pains pretty much down and working even 10h/w is still a daily struggle. But I've always had quite a bit of energy, even more stable now, my quick exhaustibility (3' energy bursts) has stopped. It's not lack of energy, it's the big general Ache, looking and feeling bad, after overdoing things, not resting enough in between or at least task-switching, depending on how tough it is that may be half an hour or 1 or 2h. And the tiredness a lot of the time even now I'm getting my sleep more and more restorative. But what we call my 'baby' doesn't matter to me, as long as it helps my 'trigger hunt'.
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Inspired by JayCS, I had another thought! My fibromyalgia took many years to fully manifest - from the first symptoms to the first full-blown flare. So, that could be a factor for you to weigh up in figuring out what's going on. Other people here on the forum have also described slow onsets. While that might make things seem a bit doom and gloom, it isn't. A good fibro management approach can make a big difference. So, if you do land on fibromyalgia, don't feel as if you're stuck where you are now - what gets worse can always improve!
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True, same here: Maybe swine flu 2011, vague pained flares & fatigue esp. in windy environment, esp. 2016, gathering momentum 2019 and exploding in December, not letting up since, except centering on it all day every day to keep it at bay, almost non-stop self-care.
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I agree with this. the hypothesis that CFS and ME are distinct seems like a poor starting place to me, since ME is actually the correct medical term for CFS, and is only called CFS because many people don't want to try to pronounce the full name. At least, that is my understanding. I would take much of this with a grain of salt.
KrisWark
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I know this is from August, but I had to comment because this is the exact question that I came here with. I was diagnosed with "Central Sensitization Syndrome" several years ago. But then it...went away? I attributed that to going gluten free because the improvement was extreme within 1.5 weeks (after several years of nothing working). I was basically well for 2 years and then when the pandemic hit I slowly went downhill (I think a combo of mental health issues and the fatiguing properties of the anti-anxiety meds I was taking).
The thing is last time it was almost entirely fatigue. Like pure exhaustion, sleeping 12 hours a day with an afternoon nap, plus IBS and TMJ and frequent headaches (also, PCOS, which I'm not sure is in the symptom cluster or not).
This time, the fatigue isn't quite as bad, but I have flu-like ache that comes and goes (for a day to weeks at a time) and for the past several months, my face, hands and feet have been burning like I just came inside after being barefoot in a blizzard (but my skin looks normal).
I was in a year-log program for me/cfs and fibromyalgia but I focused exclusively on the fatigue because at the time, pain wasn't an issue, and I have no idea how to manage this effectively, or even if it is the same problem or something different.
ANYWAY, no answers, just solidarity!
The thing is last time it was almost entirely fatigue. Like pure exhaustion, sleeping 12 hours a day with an afternoon nap, plus IBS and TMJ and frequent headaches (also, PCOS, which I'm not sure is in the symptom cluster or not).
This time, the fatigue isn't quite as bad, but I have flu-like ache that comes and goes (for a day to weeks at a time) and for the past several months, my face, hands and feet have been burning like I just came inside after being barefoot in a blizzard (but my skin looks normal).
I was in a year-log program for me/cfs and fibromyalgia but I focused exclusively on the fatigue because at the time, pain wasn't an issue, and I have no idea how to manage this effectively, or even if it is the same problem or something different.
ANYWAY, no answers, just solidarity!
LolaMerle
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It’s interesting to read so many posts and realize that there are many people experiencing “the big mystery” of what is wrong with them for literally years, and who have had the same symptoms I have had. I wish I had discovered this forum a few years ago. I also was co-diagnosed with ME/CFS and fibro. I have more of the extreme fatigue, like an ongoing hangover. The pain I have had for years, from neuropathy, arthritis, and various “things” pressing against my spine cord, is enhanced, plus just phantom pains in various parts of my body, but the fatigue is still the worst.
KrisWark: I also get a “flu-like” feeling, and it’s interesting that I also experience weird skin issues, mainly that my hands look like I have a rash, red and itchy in places, but that goes away when a flare-up ends (which isn’t that often unfortunately) so it’s hard for me to conclude that it isn’t related. All of these symptoms started to really get worse when the pandemic started, and continued on and off until I got Covid in August, after having been vaccinated and getting the booster. I’m sure it was the Delta variant and I got very sick. Since then all of my symptoms have been REALLY bad. So I think that having (diagnosed) Covid jump-started the fibro. I believe I have what they call long covid too. Also, there is a possibility that I had Covid back at the end of 2019 when my husband and I both had a terrible flu, but there is no way to prove that. But through all of this, the absolute fatigue and feeling like I am coming down with something, like the worst of the worst flu or whatever, that never quite arrives to do me in, is constant. Before learning about fibromyalgia, each time I felt like this I really thought I had a horrible disease and it was the beginning of the end!
Same as you, KrisWark, no “answers, just solidarity”! BUT, I am trying something suggested in another thread that I have to find and I‘ll come back and post here. My memory is too bad, even for something I read yesterday, to try to tell you about it without going back and looking.
KrisWark: I also get a “flu-like” feeling, and it’s interesting that I also experience weird skin issues, mainly that my hands look like I have a rash, red and itchy in places, but that goes away when a flare-up ends (which isn’t that often unfortunately) so it’s hard for me to conclude that it isn’t related. All of these symptoms started to really get worse when the pandemic started, and continued on and off until I got Covid in August, after having been vaccinated and getting the booster. I’m sure it was the Delta variant and I got very sick. Since then all of my symptoms have been REALLY bad. So I think that having (diagnosed) Covid jump-started the fibro. I believe I have what they call long covid too. Also, there is a possibility that I had Covid back at the end of 2019 when my husband and I both had a terrible flu, but there is no way to prove that. But through all of this, the absolute fatigue and feeling like I am coming down with something, like the worst of the worst flu or whatever, that never quite arrives to do me in, is constant. Before learning about fibromyalgia, each time I felt like this I really thought I had a horrible disease and it was the beginning of the end!
Same as you, KrisWark, no “answers, just solidarity”! BUT, I am trying something suggested in another thread that I have to find and I‘ll come back and post here. My memory is too bad, even for something I read yesterday, to try to tell you about it without going back and looking.
LolaMerle
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KrisWark: Check out the thread called “Brain Fog”. There’s a post by Jemima about Alpha Lipoic Acid, Acetyl (L?)- Carnatine, and CoQ10, regarding the fatigue and brain fog that I found really interesting and I decided they are worth a try.
KrisWark
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LolaMerle, I'm so sorry to hear how badly you've been feeling 
I've been reading (mostly on me/cfs instagram...) about how similar long covid and me/cfs are, and it nust be awful to have both, along with fibro. That feeling you describe of "coming down with something" is how I felt for a long time before being diagnosed (albeit much more mildly than what you describe). I thought I was just very good at fighting off the flu...
The problem arises when I actually have come down with something and don't realize it! I have on more than one occasion ended up in the hospital because I didn't realize I had a serious infection (I just feel feverish and achy all the time), so now as tiring as it is, I try to treat each new symptom as unrelated to my diagnosis at first. I also take my temperature regularly now just to be sure I don't have a fever
Thank you for this advice from the other post!! I do struggle with memory issues, etc. so will have to look into that!
I hope you are able to find things that help you feel a bit better!
I've been reading (mostly on me/cfs instagram...) about how similar long covid and me/cfs are, and it nust be awful to have both, along with fibro. That feeling you describe of "coming down with something" is how I felt for a long time before being diagnosed (albeit much more mildly than what you describe). I thought I was just very good at fighting off the flu...The problem arises when I actually have come down with something and don't realize it! I have on more than one occasion ended up in the hospital because I didn't realize I had a serious infection (I just feel feverish and achy all the time), so now as tiring as it is, I try to treat each new symptom as unrelated to my diagnosis at first. I also take my temperature regularly now just to be sure I don't have a fever
Thank you for this advice from the other post!! I do struggle with memory issues, etc. so will have to look into that!
I hope you are able to find things that help you feel a bit better!
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ALC = Acetyl-L-carnitine and L-carnitine are both good for fatigue, but ALC has more evidence for brain, LC more for body. Can't take them together. LC is cheaper, if you use the powder (in my case self-encapsulating). Effects on heart/CVD are complicated though.
ALA hasn't got quite as much evidence as the other two and should be taken with ALC or LC.
Best in the mornings (ALC) on empty stomach (ALA/both), i.e. 30 mins before meal.
The usual form of CoQ10 is ubiquinone, most evidence for this, take with meals, but the more bioavailable & more expensive form is ubiquinol (Kaneka), take without. Best take with selenium (selenium maybe only up to 6 months though).
Other well known ones than selenium for brain fog / alertness / cognition are ginkgo, magnesium malate, magnesium glycinate and L-theanine, lesser known but also with enough evidence GABA, NAC, NADH, PQQ, D-ribose and pine bark, all either antioxidant, anti-inflammatory or both.
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