Is Fibromyalgia the same as CFS? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Is Fibromyalgia the same as CFS?

Torti68 profile image
29 Replies

HI all,

I spoke to a GP and she said that Fibro is the same as CFS. I thought they were 2 different illnesses. Is she right?

29 Replies
TheOwl89 profile image
TheOwl89

i have heard this but I don't suffer with CFS but my mum suffers with CFS/ME and fibromyalgia and they have told her that it's like fibromyalgia but not the same

Ellie1991 profile image
Ellie1991

Research is sugesting that although CFS and Fibro are 2 different conditionas, their might be a connection between them.

Torti68 profile image
Torti68

Thank you for your message. I was diagnosed with CFS back in 2010 but it appears that I've had it for 42 years. I was recently diagnosed with Fibro back in September from one GP but another GP said CFS and Fibro were the same and diagnosed me with long covid (I had it in June). Subsequent blood tests have proven hat I don't have long covid, and looking at the symptoms of Fibro I would say are a match to my symptoms

Judithdalston profile image
Judithdalston in reply to Torti68

curious to know what blood tests were used to rule out Long Covid?

Torti68 profile image
Torti68 in reply to Judithdalston

The GP didn't tell me. Really frustrating!

Judithdalston profile image
Judithdalston in reply to Torti68

I suspect GP just tested for covid 19 viral load, and decided a negative result showed you did not have LC. I have had fibro for some years, and seem to have LC on top of it…worse fatigue and pain, breathlessness, and now high HR, raised BP ( that 5 BP meds are hardly improving) and continued loss of smell 18. + months later. Fibro was diagnosed by ruling out other ailments re blood tests and by a rheumatologist doing pressure point test. , LC diagnosed due to new symptoms and having negative chest X-ray and echocardiogram. Also tested for Sleep Apnea, as that can cause similar problems, but only had mild untreatable symptoms. Never gone down the route to see if I have CFS too, as fibro enough!

Beakybird58 profile image
Beakybird58

I was told by a( rather rude) rheumatologist that I had both as they were one of the same thing ‘pretty much’ - so professional, not!

Trappedmoth profile image
Trappedmoth in reply to Beakybird58

The fact is, no two specialists agree on any of these terms probably because they describe symptoms rather than specific illnesses.

catherine19611 profile image
catherine19611

chronic fatigue amd fibromyalgia are 2 different things, chronic fatigue and ME are also 2 different things but are sometimes classed as the same

Ilove-Animals profile image
Ilove-Animals in reply to catherine19611

Hi, can you explain what you mean about Chronic Fatigue and ME being 2 different things please?

I ask because as far as I've been aware, for almost 20yrs, is that ME/CFS is Chronic Fatigue Syndrome!!

catherine19611 profile image
catherine19611 in reply to Ilove-Animals

very basic differences are

Chronic fatigue syndrome - total exhaustion to the point where you dont have the energy to move, you can be wide awake and not feel tired at all, or you can sleep all night get up feel fine, then it kicks in and the energy level goes completely, just 2 examples. i have had days when i got up, showered and got dressed, felt absolutely fine as if it was going to be a good day, walked down the stairs, and had to sit on the bottom of the stairs for anything up to an hour before i had the energy to walk to the living room, where i can then only sit or most of the time lie down all day because i dont have the strength or energy to do anything else

ME - extreme tiredness to the point of having to sleep

Ilove-Animals profile image
Ilove-Animals in reply to catherine19611

If you have Chronic Fatigue Syndrome (which I believe you're saying you do as the example was personal) then you do have ME, I'm sorry to say, as they are one in the same illness.

I thought, as you said, "chronic fatigue and ME are also 2 different things but are sometimes classed as the same" you were saying Chronic Fatigue and ME are two different things but to say Chronic Fatigue Syndrome and ME are, is just not true I'm afraid.

I appreciate that your experience is what it is but as with most (if not all) illnesses peoples experiences can differ. In my family, I am the third person to be diagnosed with it and all three of us have differing symptoms. Yes we all get very bad fatigue but that is where our same symptoms end and we all experience our fatigue in different ways. My sister in law fell asleep at the drop of a hat and could sleep all day, get up, get in the car and fall asleep again!! My sister manages to stay awake all day and only occasionally needs to nap in the daytime. I lay awake at night (like now) desperate to fall asleep as I am so tired/exhausted but sleep evades me. I then sleep early morning until the afternoon. I also fall asleep on a car journey and just can't fight it cos it overwhelms me. Sometimes when I feel awake enough to go on device, within minutes of doing so, I struggle to keep my eyes open. When that happens, at times, I go with it and fall asleep for 2-3hrs. Other times, if I put the device down, I'm awake again!! The point I (hope I'm) making (sorry I couldn't make it shorter) is that CFS/ME symptoms aren't as cut and dry to be able to be categorised as you have.

Thebonecollector profile image
Thebonecollector

thankyou thanks makes a lot of sense, are you a Doctor.? Irradiated only the other day that spinal surgery can cause Fybro etc where the nerves have been disturbed . I had spinal surgery in 2010 was diagnosed with Fybro,cos and osteoporosis in 2013. Makes more sense now. I manage well little drugs exercise (even when I don’t really want to) changed my diet and lost weight. Thankyou again for you info.

The bone collector

niretro profile image
niretro

People with major illnesses do not automatically have CFS. Of course CFS can occur *alongside* other medical conditions, but not automatically *because of*. A lot of people (as you have done) confuse ‘fatigue’ or ‘chronic fatigue’ (an illness symptom) with the actual illness of Chronic Fatigue Syndrome (a separate medical condition).

There has even been suggestion to rename CFS so as to prevent this confusion of ‘chronic fatigue’ (the symptom) with the illness of CFS. The hallmark symptom of Chronic Fatigue Syndrome, which makes it different to chronic fatigue (symptom) is something called PEM: Post Exertional Malaise - this means that any cognitive or physical activity will create a reaction of deterioration in a CFS patient’s baseline functioning. CFS patients always operate within parameters of not exceeding their baseline.

In Fibromyalgia, exercise can be beneficial, but with CFS it *will* create PEM - and CFS patients have to be careful they do not used graded exercise programmes to exert themselves beyond an energy baseline. This becomes problematic if someone has both FM and CFS - as exercise programmes help FM, but do *not* help CFS.

I’ve seen too many people misdiagnose themselves as having CFS when in fact what they are experiencing is *chronic fatigue* - an inevitable *symptom* of any major illness. It’s really important not to get these two (chronic fatigue the symptom and CFS) mixed up.

Ilove-Animals profile image
Ilove-Animals in reply to niretro

Hi, I have to jump in here to comment on a couple of things you have said. I'm not sure if they're your assumptions or information you have gained from somewhere.

"CFS patients always operate within parameters of not exceeding their baseline"... If I have understood you correctly, it is not true in mine nor my sisters case. We push ourselves beyond our limits, every day. If I didn't and I gave in to my baseline, I'd get very little done.

"exercise programmes help FM, but do *not* help CFS."... Since having Fibro exercise is one of my enemies, I just can't do it due to the pain and exhaustion it causes me. When I got diagnosed with CFS I was referred to an OT and she said to do some exercise!! It was weird to hear as my sister had been told at her diagnosis of CFS not to exercise!! I concluded that in the approx 14yrs that had passed between hers and mine diagnosis that their ideas of what helps and what doesn't had changed. It was only when I explained the limitations having Fibro causes me, that she realised everything she wanted me to do was not possible.

Freespirit65 profile image
Freespirit65

check for sleep apnea

Purplemeyer profile image
Purplemeyer

Please tell someone who has suffered from CFS/ME for 20 years that it is not an illness!

Yassytina profile image
YassytinaFMA UK Volunteer

I was diagnosed separately for both and although they have similar symptoms they are different conditions xx

fmlife profile image
fmlife

it is 2

from my experience

cfs is tiredness and fatigue, feeling like limbs made of lead, sapping energy when trying to do stuff.

fibro is faulty sensors, hence pain, stabbing feelings, snapping feeling, burning feeling, cold, brain fog,

sometimes fibro happens with a number of other Ailments

like cfs, ibs, impaction, migraines, carpel tunnel, costocondritis, cramp, pain causes lack of right level sleep.

all are separate, yet they seem to spark one another.

would print out the fibro pack from fmauk.org

CM1EDSUK profile image
CM1EDSUK

It's not often I'd disagree with a learned member, but a 'syndrome' in this case does indicate a definite medical identity, & tho it might not be classed as an 'illness,' such disorders are real. Yes, this is an umbrella term indicating those with a 'syndrome' share similar symptoms, but it is a medical diagnosis. There are many, many syndromes: en.wikipedia.org/wiki/List_... all medical disorders, & I don't think our Drs are minimising such disorders, as 'syndromes' are recognised.

Similarly, long Covid is not a form of dysautonomia, tho dysautonomia can occur in many long Covid sufferers.

As niretro has said, I think at least here in the UK, the term 'myalgic encephalopathy' may be more preferred as this more accurately describes this disorder rather than CFS.

Our Drs understanding is changing all the time with mainly evidence based medicine. For example, in a recent study done about long Covid, some were found to have fibromyalgia which wasn't widespread (& also had symptomatic joint hypermobility). Unfortunately I can't access the medical database I normally use this evening, but this illustrates that fibro isn't always widespread as usually thought with regard to the current criteria; with time this may change.

Of course any such studies need to be peer reviewed to see if they're replicated.

Blearyeyed profile image
Blearyeyed in reply to CM1EDSUK

I agree with whole heartedly , as I did with the others , I think my wording on this occasion didn't help. I completely agree with you all that it would be better to re-evaluate the naming of certain things . I've was basically saying the same as you all but I wrote my replies in a poor order ,and way ,which seemed to undermine my own point , let alone the condition being discussed, which , you know , would never be my intention, especially as I know how awful CFS is as I suffer with it myself!

I have sat read through the replies and considered editing but I'm not sure how to do it without swapping a lot of points around , or just rewording it and I'm not upto doing that at the moment , so I've removed them instead to be more helpful.

Other people's comments to mine have a lot of extra information in them that are helpful to all so the removal won't make any difference

Take care,

Ilove-Animals profile image
Ilove-Animals in reply to CM1EDSUK

I'm not sure if this helps but I have Long Covid and have Fibro with very widespread pain. I don't have symptomatic joint hypermobility.

Purplebluebell profile image
Purplebluebell

Hi,

I first had CFS then went onto develope fibromyalgia. When the fibro started I just knew it was not the CFS although I had the terrible fatigue again, I also had dreadful pain everywhere.

Eventually diagnosed with fibro. Almost like an extension of CFS. Sort of linked in a way.

Ilove-Animals profile image
Ilove-Animals

Wow...that is very concerning to me that a GP doesn't know the difference!! Maybe you can print off some articles and take them to her!!

They are two different illnesses. Yes, they have some similar symptoms but they are not the same.

ME/CFS = Chronic Fatigue Syndrome

FMS = Fibromyalgia

Some people have one without the other and others have both. I had Fibromyalgia for approx 6yrs before I started getting symptoms that didn't match up to my Fibro ones but were listed as ME ones. I spoke to the Dr, got a referral and was diagnosed with ME.

My sister has had ME for approx 19yrs, yet no Fibro.

Hope this helps 🙂

Hurtingmom profile image
Hurtingmom

not the same. My rheumatologist says I don’t have fibromyalgia but believes I have ME

Gaye1963 profile image
Gaye1963

I don't think they are the same and it's really unhelpful to dimiss you in that way. There is really good evidence that fibro is helped by exercise. On the otherhand, my understanding is that neither CFS nor ME are.

That suggests a very different type of condition.

Lupusrelative profile image
Lupusrelative

Hi Torti

You may find this helpful

cdc.gov/me-cfs/about/index....

Torti68 profile image
Torti68 in reply to Lupusrelative

Thank you!

catcalling profile image
catcalling

Hiya.

I was told by an ME specialist that ME/CFS was one of the same condition and that Fybro was a different condition although the similarity between the two was difficult to diagnose.

She also said that ME and or CFS was brought on by a virus.

And that ME/CFS was recognised in the "medical bible" where as Fybro wasn't. x

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