Fibromyalgia or ME/CFS?

[Kestrel01]

Easiest way to find out if you have fibromyalgia is pressing with your thumb on ALL the extremely tender pressure points

I have em all and then some and I'm a man!

Fibromyalgia is just another symptom of CFS/ME in my eyes........

Hi
I have CFS/ME but it's changed recently, less fatigue and doing more but more pain and aches. Colleagues where I volunteer have said it sounds like Fibromyalgia as they know people who have it. They were quite shocked when I turned up on crutches the other day.

I have pain at some of these points and more that are not, but no more when pressed, but my husband says I'm weird anyway as he does martial arts and had tried pressure points and holds that would leave most people in agony, I don't even react. (We keep forgetting that and almost broken my wrists.) Most of the time when I'm well enough to do it that is.

So do I have CFS/ME Fibro?
Plus it's getting harder and harder to walk safely. (When is the best time to think about a wheelchair when out and about?)

Thanks CD

 

[Valentijn]

It's getting harder and harder to walk safely. (When is the best time to think about a wheelchair when out and about?)

If you're avoiding your usual outings due to it being too difficult and/or painful, or you're wiped out after the necessary amount of walking involved, then I think I wheelchair is a great option.

With regards to mobility aids, the only regret I've ever had is that I didn't get them sooner!

 

[Tired of being sick]

Hi


So do I have CFS/ME Fibro?
Plus it's getting harder and harder to walk safely. (When is the best time to think about a wheelchair when out and about?)

Thanks CD

Not sure
But I can tell you my experiences..

In my specific case Fibro is just another one of my many symptoms,like ADD,CPS and POTS..

As far as your wheelchair question goes,only you can answer that..

And absolutely do not base your decision on what others may think of you..

 

[Kestrel01]

If you're avoiding your usual outings due to it being too difficult and/or painful, or you're wiped out after the necessary amount of walking involved, then I think I wheelchair is a great option.

With regards to mobility aids, the only regret I've ever had is that I didn't get them sooner!

Thanks for the help.

 

[wonderoushope]

Easiest way to find out if you have fibromyalgia is pressing with your thumb on ALL the extremely tender pressure points

I have em all and then some and I'm a man!

Fibromyalgia is just another symptom of CFS/ME in my eyes........

Hmmm I am now wondering if I have Fibromyalgia. I thought it was CFS, but wondering if it's FB. You can pretty much press anywhere on my body and it is tender. I've pretty much been like this for a long time, but didn't think anything of it. I thought most people were tender when touched. I don't usually feel the tenderness unless someone touches the spot though. So my whole body isn't aching the whole day usually. When I do have an ache flare-up only a particular part of the body will be in pain, like back, knees, feet, shoulders, neck etc.

I really noticed these tender points throughout my body since going to an acupuncturist and physio (recently) they were trying to find spots in my body, and the pressed all these points and it was rather tender in most spots, spots I never realised were so tender and painful. I've always known my lower back and neck have been tender to touch, but if I don't actually touch them I don't feel tenderness/aching.

Also I have always had bouts of lower back pain, upper neck, shoulder pain and pain in my feet. Sometimes it last for a month or two and then disappears and then reappeaers. The pain seems to jump from one day to the next, especially if I have done stretching exercises and seen a physio or osteopath. Like I will go to the physio for my knee and he works on that, then my pain jumps to my lower back, he works on that, then it jumps to my upper back. I asked him if that'st the norm and he said "yes, he's quite a few patients were pain moves as my body is trying to comensate". Now I am having issue with my calves (mainly my right calf), it's been playing up for the last few months. Again some days weeks are better and then it just flares up again. I am also very stiff in my body when I have muscle issues. Like when I get out of bed I am stiff and takes me a bit to straighten up. When my feet a flaring up, it's hard to walk first thing out of bed (at the time osteo thought it was plantar fasciitis) but then it mysteriously disappears after a while (which I don't think plantar fasciitis would do) and then it might come back at a later date.

I'm also having flare-ups at night with costochondritis (had this all my life) and I also have joint pain near my ear and jaw (again not really noticeable unless I am chewing something hard or I touch those points).

I had always dealt with atypical migraines and headaches my whole life. About three and a half years ago it was at it worse, nearly every day for 2 months (close to when I had my worst bout of CF symptoms). But I haven't had a migraine in about 3 years and my headaches have reduced significantly. I think it has to do with my diet and reduced stress. I have diet is the biggest thing. But when my neck and back is out I will tend to get a headache. Whenever I go to an osteo I always leave with a headache (just with massage, I tend to not ask them to do manipulations) as I think they aggravate those tender spots in my body (just by massaging points within my body).

The only thing that made me think I might have CFS is that I did have clear PEM about 6 months ago (for the first time but had lots of other CFS type issues before that). I also have terrible food sensitivity flare-ups and other things that also match-up to CFS.

 

[Paintmyturquoise]

The ear jaw pain is likely TMJ

 

[charles shepherd]

Basic information from the MEA on FIBROMYALGIA (FM) and ME/CFS (as it is a very common query)

My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

So some UK specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

And some people have what I think is best described as a fibromyalgic component to their ME/CFS, whereas in other cases a diagnosis of pure FM would be more appropriate.

One important difference is that you have to have pain (often symmetrical/the same on both sides of the body that is in localised areas or 'tender points') to have FM whereas musculoskeletal pain (localized or widespread) is not always present in ME/CFS.

The situation is clearly unsatisfactory and can be very confusing for patients.

I cover the similarities and differences between ME/CFS and FM in some detail on pages 106 - 108 of Living with ME (Vermilion paperback available free from any public library)

If anyone in the UK wants to pursue the possible FM component they could ask their GP for a referral to a specialist referral service for ME/CFS, or to a rheumatologist.

Contact details for all the UK ME/CFS services can be found on the MEA website: www.meassociation.org.uk

If someone requires more help with pain (regardless of diagnosis), and if a GP cannot help, another option would be to ask to be referred to a hospital pain clinic

We have an MEA information leaflet covering the general management of pain in ME/CFS and leaflets covering specific drugs - amitripyline, duloxetine, gabapentin, pregabalin - that may be prescribed for pain relief in ME/CFS.

MEA literature list:

http://www.meassociation.org.uk/shop/

Recent paper on the use of acupuncture, which may be worth a try, in fibromyalgia:

http://aim.bmj.com/content/early/2016/01/27/acupmed-2015-010950.abstract

FM tender point map:

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Sasha]

My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

So some UK specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

I have ME/CFS and never even considered that I might have any kind of overlap with FM (I'm not in pain, apart from muscle pain sometimes) until I was referred to a rheumatologist and he decided to test me for FM by ramming his thumbs into a series of particular spots and some of them - massive surprise to me - were very tender. Not enough for an FM diagnosis but I wonder whether these only seem to be different conditions because we're not all getting tested.

 

[daisybell]

I have ME/CFS and never even considered that I might have any kind of overlap with FM (I'm not in pain, apart from muscle pain sometimes) until I was referred to a rheumatologist and he decided to test me for FM by ramming his thumbs into a series of particular spots and some of them - massive surprise to me - were very tender. Not enough for an FM diagnosis but I wonder whether these only seem to be different conditions because we're not all getting tested.

I've had one rheumatologist suggest I had FM too... but I would defy most people not to wince when the thumb jab is applied! I certainly don't feel I have particular tender points, but can be very tender over all my body if I'm in a crash...

 

[Shakota]

Yes PEM is the main difference between FM and ME/CFS.


FM is diagnosed by 11 out of 18 tender painful points.
Fibromyalgia comes secondary to Hepatitis, Lupus, Interstitial Cycitis not just CFS.

Fibromyalgia is pain.
They list a lot of other symptoms as part of fibromyalgia, but you MUST have pain on 11 points to get diagnosed with fibromyalgia, the rest of the symptoms are just extra, and would not get you diagnosed if you had them without the tender points.

I can't supply a reference at the moment, but there is no longer a tender point criterion for diagnosis of fibro. It's more a list of symptoms from several categories.

 

[Sasha]

I've had one rheumatologist suggest I had FM too... but I would defy most people not to wince when the thumb jab is applied! I certainly don't feel I have particular tender points, but can be very tender over all my body if I'm in a crash...

What was interesting is that some points didn't hurt at all and some really did - so there was more to it than just the amount of force being applied, I think.

 

[taniaaust1]

At a talk by a ME specialist .. he said that about 25% of people who start off with only FM end up developing ME/CFS.

I guess a high percentage of us have FM as a symptom of our ME (50%??). When I had a remission of ME, my FM went too .. but fortunately didnt really come back when I got ME again. It would be interesting to know what causes the FM symptom.

I dont know how specialists could confuse these illnesses as they are distinct so it should be clear if someone has just one of these or both. My grandmother only gets FM and not the ME/CFS, she doesnt get post exertional problems and exercise used to help her a bit.. she's able to push herself without causing harm hence found it harder to understand why I cant push myself. She gets a lot of the coexisting issues which commonly appear in FM eg migraines, painful and overactive bladder, IBS, insomnia.

 

[Paintmyturquoise]

At a talk by a ME specialist .. he said that about 25% of people who start off with only FM end up developing ME/CFS.

I guess a high percentage of us have FM as a symptom of our ME (50%??). When I had a remission of ME, my FM went too ...

I'd love details of this specialist to take to my rheumatologist. This is what happened with me

 

[Lissyleigh]

A relative of mine has a diagnosis of both m.e and fibro but I've always felt her issues are more fibro. Obviously I'm no doctor, but she can't relate to the PEM cardiac or immunological issues. She mainly seems to experience exhaustion and muscle pain, but she has been to physiotherapy (gulp) and this has helped her improve. She can walk a lot on better days and doesn't really take any time to get over it. This is very different from my experience of m.e where any slight exertion, even typing on here, sets off muscle fatigue and can make me feel horribly unwell if I push it.

It;s a difficult one as there's a lot of overlap and some people may have mild m.e and be able to do more. But I'm inclined to think as someone said above- fibro is a symptom of m.e, so like pots it could either be a secondary issue in some cases, or experienced by itself.

 

[Techs]

I guess a high percentage of us have FM as a symptom of our ME

Seems to me some of us also have CFS as a symptom of FM -- but that assumes a chronic fatigue syndrome that is possibly distinct from ME.

Also, I believe the tender-points test is no longer a necessary component of an FM diagnosis, as it can be expressed in other ways (including "burning" and other flu-like symptoms that align with CFS) -- especially in men.

 

[tthompsoniv]

I now do seem to have both cfs and fm. All of the classic CFS symptoms have been going on for 25 years, with flare-ups of increased intensity at least once a year. In the last year, I thought that I was experiencing another flare-up, but the pain and cognitive symptoms have increased to the point that it's practically unbearable. My joints and muscles are in extreme pain. It's partially controled by meds, but once they wear off, it's excruciating. It is also completely different than similar symptoms of cfs. I don't know if one led to the other or not, but the combination is difficult to bear.

 

[Cath]

Hi @tthompsoniv, sorry to read you are finding the combination of CFS and FM difficult to bear.

Take care,
Cath

 

[movilsubleo]

Having fibromyalgia and sfc is very hard, the muscle pain becomes unbearable. I also have the two diseases and fibromyalgia I started after a year and a half of the sfc ..
I think it's worse to have fibromyalgia than sfc because since then all the symptoms have increased especially the cognitive and fatigue ... with the sfc I thought I could maintain a normal life .. but with fibromyalgia I realize that this is not is going to be possible .. and that scares me because I depend a lot on my work and therefore with cognitive problems I am very worried .. the last medical tests went normal ... that leaves me more sad ... because the doctors they do not pay attention to me with the subject ... and I still do not have a diagnosis of fibromyalgia and sfc to be able to fight some pension in the future.
At the moment I'm just focusing on finding the causal pathogen of this disease.
never in my life I imagine that a virus causes so much damage to a person and the worst thing is that I do not know which virus it was and the doctors do not help, they only say that it is stress and anxiety, as if the pain in the body were imaginary.

 

[Shakota]

... and I still do not have a diagnosis of fibromyalgia and sfc to be able to fight some pension in the future.
At the moment I'm just focusing on finding the causal pathogen of this disease.
never in my life I imagine that a virus causes so much damage to a person and the worst thing is that I do not know which virus it was and the doctors do not help, they only say that it is stress and anxiety, as if the pain in the body were imaginary.[/QUOTE]

Well, I completely understand your dilemma, especially if in Britain, you can't get a disability pension based on symptoms & functional deficits only, but have to have some firm diagnoses. That said, since there aren't firm diagnostic tests for either condition (no lab or easily available scan), please, just cope the best you can. Try to get symptom relief. (For instance, I use methadone plus a muscle relaxant and achieve a significant reduction in my daily fibro pain [usually].) I like this website: www.myopain.com It's from the University of Oregon where they did significant early research. Not that much in the treatment areas have changed.

I have a hard time coping with this illness (fibro). When the pain is high, the fatigue limits me to the house. I won't go into all the distressing details. Somehow one has to adjust one's lifestyle, ways of getting the shopping done. I like Bruce Campbell's website on pacing yourself (google: bruce campbell self-help).

It's been since 1996 that I've had the diagnosis of fibro. In the US, it wasn't hard for me to get disability benefit, paltry though it is. Not to be able to work is the most depressing part of it all, so if you can somehow keep working, well I hope you can. My best to you.