Other connective tissue illnesses (beside EDS) w CFS?

[ebethc]

are there any other connective tissue illnesses associated w CFS besides EDS?

cc: @JenB

 

[Seven7]

Yes the milder version, I got dignosed w
Hypermobility Spectrum Disorder (HSD) ( I think )
Like you have hypermobility but does not qualify for EDS.

 

[ebethc]

Yes the milder version, I got dignosed w
Hypermobility Spectrum Disorder (HSD) ( I think )
Like you have hypermobility but does not qualify for EDS.

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)

 

[ryan31337]

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)

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.

 

[Seven7]

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.

 

[marlunette]

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)

Mast Cells are in connective tissue throughout the body. I have found that my hypermobility issues get worse when something is triggering my MCAS and it gets better as I treat my MCAS.

 

[Zebra]

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

 

[Rufous McKinney]

are there any other connective tissue illnesses associated w CFS besides EDS?

In a general way...it appears that collagen is a key component of connective tissue and I believe that breakdown of collagen may be playing a role..in our symptoms, progression etc. ....in my view, this may account for lower brain stem inflammation if that area is weakening...and then all the CCI stuff we are seeing for some folks...with ME.

this may not be what you meant by "other illnesses"...

eppstein barr virus, for instance, is known to some how affect collagen ....don't have a reference at the moment.

 

[Rufous McKinney]

Here is some mention of collagen breakdown...in another thread here in PR....

https://forums.phoenixrising.me/threads/the-ido-metabolic-trap-guy.62727/page-32#post-2250884

 

[ebethc]

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.

Interesting.... I don't remember ever being especially bendy.. .however, even when I was a little kid, all my joints popped and cracked and I could never sneak up on anyone b/c they could always hear me coming.. .it was kind of a family joke

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.

how do you get dx w eds if you're not bendy?

 

[ebethc]

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?

 

[ryan31337]

Hi @ebethc,

Criteria here to give you a rough idea, note the drop in required Beighton score as you age and the "could you ever" questions:
https://www.ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf

Some elements of the Beighton score can be tricky to interpret as a layperson, but a physio or Rheumatologist will be more confident. I personally didn't think my knees were hypermobile, but every time a physio/doc has looked at them they've told me they are clearly hypermobile.

Even if you fall short of hEDS criteria (which has become stricter recently), you may still be caught by HSD. In this case it still pays to be looked over by someone with an understanding of hypermobility syndromes because much of the co-morbidity in hEDS/HSD is the same and will likely go undetected/chalked up to CFS/ME otherwise.

As for the cracking, I remember shaking the hand of an extended scope physio practitioner a couple of years back and wondered why this strange look suddenly came over his face. Apparently many of the joints in my hand cracked, he felt them and was horrified, but also immediately convinced of hypermobility haha! I notice a very clear increase in cracking through my entire spine when I flare, though I think this perhaps goes further than hypermobility as it seems more closely related to my inflammatory axial spondyloarthritis symptoms.

Cheers,
Ryan

 

[Zebra]

@ebethc

how do you get dx? what kind of doc do you see?

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.

Good luck to you! Hope you will keep us posted on this area.

Z

 

[ebethc]

@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.

what are some of the screening tests that you can get to justify a referral?

 

[kangaSue]

how do you get dx w eds if you're not bendy?

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.
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.

 

[ebethc]

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.

what can the geneticist do? do they recommend treatment plans, or just tell you that you have a bad gene?

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.

interesting... my ana came back "speckled pattern" whatever that means... my doc didn't seem very concerned but my insurance sucks so who knows what a good doc would say

never had the ENA antibody panel

 

[kangaSue]

what can the geneticist do? do they recommend treatment plans, or just tell you that you have a bad gene?

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.

interesting... my ana came back "speckled pattern" whatever that means..

never had the ENA antibody panel

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.

 

[ebethc]

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.

Exactly!

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.

I don't have EDS... the opposite - very stiff! I will def request an ENA panel blood test...

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??

 

[kangaSue]

I don't have EDS... the opposite - very stiff! I will def request an ENA panel blood test...

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.

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??

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.
I believe a positive ANA result can be due to residual issues from an inflammatory condition too.

 

[ebethc]

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.

do how do you get properly dx w EDS if you have "contrary" results? ie, most ppl are hypermobile... is there a definitive blood test or other type of test (genetic)? what genes are associated w EDS? can i look them up in 23andme?

also, does a rheumatologist treat EDS?

thanks