Fibromyalgia and Hypotonia

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I've noticed many Aspies posting that they have fibromyalgia. I'm supposing many have hypotonia, as well. Anybody have both fibromyalgia and hypotonia? Just wondering if it's at all common for Aspies that have one to also have the other. Also, I'm wondering how mild hypotonia can be and still be diagnosable. Is there anybody with mild hypotonia who can say what that's like and how it was diagnosed?

I have ME and AS, and I believe I also have hypotonia at some level or other. It hasn't affected me to such an extent that I'd need to get it diagnosed, though.

ME as in what the US wrongly labels "chronic fatigue syndrome?" That is "myalgic encephalomyelitis?" Just checking.

As for the question in the OP, I have no idea how to tell whether I have hypotonia or not. I do have fibromyalgia.

I have hypotonia, a thick tongue (which fills my whole mouth), chronic fatigue, forward head syndrome etc...

I wonder if Asperger is linked to hypothyroidy....

It wouldn't surprise me if I had fibromyalgia, probably used to have CFS, and I have hypothyroidism. I only have hypotonia when I don't work out

Why do you say this?

~K

I was diagnosed with fibromyalgia, but I have no idea what hypotonia is.

Which part of what I said are you asking about?

Just for further info, I ask because I wonder about very mild hypotonia in myself. My mother used to talk about how easy it was to keep my sisters and me out of any room she didn't want us in when we were kids, because we couldn't open doors as young as other kids could. Our hands were too weak to turn the knobs, so she just closed the doors to any rooms she didn't want us in. I think other kids always saw me as weak. I was, in some ways, stronger than other girls in sixth grade, but I was also a year older, having repeated third. I hit a growth spurt in sixth, and the others were behind me. In high school, a friend remarked, with some surprise, on how weak my hands were.

These days, in my middle years, I've had to work very hard for the strength I have by working out as much as I'm able, and I still never seem to build up much, even though I've come such a long way since I started. I'm stronger than at least some people who never work out, but I seem to have topped out and can't build any more. I once beat my brother-in-law in arm wrestling, but I'd been working out much longer than he had. I've been beaten by a high school student (a daughter of a friend of mine a few years ago). And now I'm finding that keeping up the workouts has gradually been getting harder for a few years, probably due to age. So, now I don't know what's going to happen. I'm doing my best, though, varying my program and doing all the things I can find out about to help myself.

I got diagnosed with fibromyalgia when I was 19. I'm now 44.

Verdandi, why do you say the US wrongly misdiagnosis ME with CFS? I've never even heard of ME before. I'd be very interested to learn more.

-K

Oh - I said the label itself is wrong. It's a valid diagnosis, but calling it "chronic fatigue syndrome" is sort of like calling autism "flappy hands syndrome." It's hard enough to get it taken seriously without giving it a label that boils it down to "you're tired all the time."

Very true. I think a lot of times doctors give a CFS dx if they don't really know what's wrong but want to give the patient a name so they don't feel entirely ripped off by the dr. visit. It's like saying something is idiopathic - no you just don't want to admit you have no idea what's going on

~K

I have been diagnosed with Fibromyalgia (diagnosed in 2010, but had symptoms since birth,) and my sister has low muscle tone. She doesn't understand the question when I ask her about it, but I can tell you that she tires easily from walking and gets very sore because of it. Her lack of hand eye coordination might be part of it, too. I'm sure her balance is from it. My therapist thinks being on the spectrum may give us a higher chance of getting FM because stress can cause it, and stress/ anxiety are huge problems for us.

I've been lucky enough to get in with the founder and one of the lead researchers of ME with the the nightingale foundation. My therapist feels I may have "CFS" and since he specializes in it, she referred him to me. He had agreed to see me for a consultation, but then decided my case is so interesting that he'd see me for free which is something that he never does. I'm extremely lucky because he's already diagnosed me with a few major things that have been missed my whole life, or misdiagnosed as something much less important/ dangerous health wise.

ANYWAY, I wanted to comment that he doesn't necessarily "believe" in FM or ME (CFS.) That being said, he believes they are very real things, but that they're actually a SYMPTOM of something else going on that doctors just haven't figured out yet. He also doesn't always feel as if you should disclose them to every doctor simply because if that doctor doesn't believe in them, they will automatically put you in the mental illness category, and will dismiss any pain you may bring up as psychosomatic.

If anyone is interested, here's the site: The Nightingale Foundation

I have ME, my sister has had treatment for breast cancer, my mother has arrhythmia, my aunt has Parkinson's disease, my neighbour has functional hypothyroidism and I've worked with or had friends with chronic lupus, coeliac disease, AIDS and sickle cell anaemia. These are all chronic fatigue syndromes, along with a great many other long-term conditions. To come up with another name for ME that could just as easily be applied to 100 other diseases, disorders and dysfunctions suggests to me that whoever devised it bought their medical degree online for $50. Personally, I choose to ignore them.

Yeah, I've been reading about it since my own fibromyalgia diagnosis. All I can say is at the time it was named in the US, that people really didn't seem to want to take it seriously. I believe it was called "The Yuppie Disease" before people even acknowledged it was actually a real thing.

I was mostly wondering when you said ME if you were saying myalgic encephalomyelitis.

I'm sorry, I was far too busy being shirty about the idiots! And I don't blame the Americans any more than I blame the British – after all, it's the British media who were responsible for "Yuppie 'flu" after the outbreaks of the 1980s.

The original epidemic condition, identified in 1955 at the Royal Free Hospital in London, was named myalgic encephalomyelitis. It's usually called myalgic encephalopathy these days, which is thought a more accurate description.

As regards the name, some of the British charities have accepted the name "ME/CFS'" now, to make it clear that we are talking about the same condition, and with the hope of taking some of the conflict out of the issue. A lot of very poorly people have wasted a lot of precious resources protesting about being labelled as having chronic fatigue when this is no more a percentage of their overall symptoms than dozens of other conditions, and when they could have been better used raising awareness of a much-ignored and poorly-understood disease. Happily it is taken seriously in the UK by the vast majority of the medical establishment, especially after an NHS dictat on the subject a few years ago.

By the way, I do also have fibromyalgia. I had no idea until I had a massage done by a woman with FM last year, and yelped aloud every time she hit one of the tender spots. She was knowledgeable about it, of course, so after a few yelps she tried all the tender spots. I have 16 of them altogether; obviously most/all of the other symptoms were being masked by the ME. People really would think I'm a chronic hypochondriac if I disclosed that I have three sets of initials (ME, FM and AS), though, so I don't. In fact, I've never even told my GP, not because I want to minimise the significance of FM, but because I'm concerned about not being taken seriously. The way these conditions are viewed by the medical establishment has improved, yes, but not quite enough.

No worries, it's completely justified.



Good to know.



I've seen a webpage devoted to this terminology thing. I have noticed that it is taken seriously in the UK as compared to the US.



When I was diagnosed, the doctor who examined me said 15 of 18 tender spots. And I hear you about the hypochondriac thing. I've got FM, AS, ADHD, and MDD. I've also been diagnosed with BPD and PTSD, but both of those were removed after more thorough evaluations.