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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Yes the milder version, I got dignosed w
Hypermobility Spectrum Disorder (HSD) ( I think )
Like you have hypermobility but does not qualify for EDS.
Hypermobility syndromes tend to start "bendy" and progress to stiffness with age. Its acknowledged in the diagnostic criteria that you can still meet EDS if you had 'past' hypermobility, which has since been lost to stiffness. This earlier hypermobility often goes unrecognised because you were essentially born that way and never appreciated that normal people can't move a joint in a certain way that you can.I feel like I have a connective tissue problem, but it's the opposite.. ie, way to stiff and sore all the time, so I wonder if the other end of the spectrum is possible within the same illness.
2nd, I wonder if MCAS causes connective tissue problems and that's the real underlying problem for me personally (maybe for all/many CFS'ers, regardless of where they are in the stiffness/hypermobility spectrum)
Yes I get very stiff, is the way of the body to protect you from the hypermobility. Ussually w hyperm you will get a sharp pain in the join that come and go (sublatation) if I use stabiliazers (they are not that expensive in the pharmacy my pain goes away. Also the stiffness and hyperm is worts before my period.I feel like I have a connective tissue problem, but it's the opposite.. ie, way to stiff and sore all the time, so I wonder if the other end of the spectrum is possible within the same illness.
2nd, I wonder if MCAS causes connective tissue problems and that's the real underlying problem for me personally (maybe for all/many CFS'ers, regardless of where they are in the stiffness/hypermobility spectrum)
2nd, I wonder if MCAS causes connective tissue problems and that's the real underlying problem for me personally (maybe for all/many CFS'ers, regardless of where they are in the stiffness/hypermobility spectrum)
are there any other connective tissue illnesses associated w CFS besides EDS?
Hypermobility syndromes tend to start "bendy" and progress to stiffness with age. Its acknowledged in the diagnostic criteria that you can still meet EDS if you had 'past' hypermobility, which has since been lost to stiffness. This earlier hypermobility often goes unrecognised because you were essentially born that way and never appreciated that normal people can't move a joint in a certain way that you can.
I think its also fairly well established that hypermobile patients tend to get a lot of muscle stiffness/soreness in a certain plane, I can't remember which. Likely a result of overuse from continually steadying loose ligaments.
MCAS is a very common comorbidity with EDS, along with POTS, forming the 'trifecta'. But I don't know of any good evidence to say what is causative or not at this stage.
There's some acceptance that HSD and hEDS are likely the same spectrum disorder.
Hi, @ebethc.
It is my understanding that there are two categories of "connective tissue disease."
1. Aquired, as in the full spectrum of autoimmune/rheumatological connective tissue disorders
https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases
2. Genetic/inherited, which is often referred to simply as "EDS," on this forum, yet there are at least a dozen distinct forms of EDS for many of which there are genetic markers.
As I'm sure you know, hypermobile EDS is the only form that still lacks a genetic marker, although a world-wide trial to obtain one is currently underway.
3. BEYOND EDS are hundreds of other genetic/inherited connective tissue disorders.
https://www.niams.nih.gov/health-topics/heritable-disorders-connective-tissue
If this is of interest to you, perhaps you could do some research and let us know about relationships between CFS and other connective tissue disorders, beyond the hypermobile EDS commonly discussed on this forum.
Best,
Z
how do you get dx? what kind of doc do you see?
@ebethc
If you suspect aquired/rheumatological connective tissue disease, then you would go to a board certified rheumatologist.
If you suspect inherited/genetic connective tissue disease, I strongly suggest you see a "medical geneticist," rather than a genetic counselor. A medical geneticist is far better qualified to examine you and order the correct genetic testing.
Chances are you just get fobbed if you don't have hypermobile EDS tendencies. All the other EDS types have known genetic markers I believe though so a Geneticist would be who you would need to see when a Rheumy is dismissive of things.how do you get dx w eds if you're not bendy?
other EDS types have known genetic markers I believe though so a Geneticist would be who you would need to see when a Rheumy is dismissive of things.
For other connective tissue disorders, I've read of instances where all of Sjogren's Syndrome, Scleroderma, Lupus and UCTD/MCTD have all been either misdiagnosed firstly as CFS, or maybe these existed as a comorbidity that only come to light when they eventually developed positive antibodies results, picked up in an ANA and ENA antibody panel, to give them a separate diagnosis.
I don't know that getting a diagnosis changes much as there's no cure for it but it might just let you tie together other symptoms or issues that you have. Better the devil you know as they say.what can the geneticist do? do they recommend treatment plans, or just tell you that you have a bad gene?
interesting... my ana came back "speckled pattern" whatever that means..
I believe a speckled pattern in an ANA test is indicating a possible autoimmune condition. It's pretty common to have another autoimmune condition/s when you have EDS. I would be insisting on an ENA panel blood test if it were me.never had the ENA antibody panel
I don't know that getting a diagnosis changes much as there's no cure for it but it might just let you tie together other symptoms or issues that you have. Better the devil you know as they say.
I believe a speckled pattern in an ANA test is indicating a possible autoimmune condition. It's pretty common to have another autoimmune condition/s when you have EDS. I would be insisting on an ENA panel blood test if it were me.
That's the problem with EDS, not everyone with it has hypermobile joints and your joints can be stiff as a board and still have EDS in one of its forms.I don't have EDS... the opposite - very stiff! I will def request an ENA panel blood test...
My reply the other day should have said that your ANA result "can be" indicating a possible autoimmune condition rather than implying that it does involve an autoimmune element.the site that I looked on said that a positive ANA can mean a lot of different things - which is not very comforting... (including cancer)... I had two bad infections last year, so I'm wondering if it's possible to be residual problems from that which will hopefully clearing up??
That's the problem with EDS, not everyone with it has hypermobile joints and your joints can be stiff as a board and still have EDS in one of its forms.