Have you noticed symptoms of Connective Tissue degradation since onset of disease?

[sb4]

I am curious at how many people have noticed this so am making a poll.

This would include gums receding, skin getting wrinkly, joints feeling significantly more floppy, or any other similar symptoms.

For me, I noticed massive receding gums rapidly post onset. I am not sure if this is related to the NSAIDs I took so will set up a seperate poll for that.

EDIT:
Rapid Onset = a few months.
Slow Onset = over a year..

 

[Thinktank]

My skin and collagen/elastin have rapidly degraded within a few years. It has become wrinkly, saggy and very stretchy.
My gums receded for a while at the onset of my disease.

 

[ChrisD]

Yes definitely. Right after initial infection all my joints became weak and painful with crepitus, and over time receding gums, stretchy wrinkly skin, all sorts of clicking and popping all over. It’s rapid but then I can slow it down with pacing and keeping a good diet etc. Then it slowly repairs but any small amount of inflammation kicks it all off again, so it’s generally a downtrend

 

[PatJ]

I said yes with slow onset but it's a bit of a mix. My gums receded fairly quickly but I think the skin changes you've mentioned took longer.

I'm also in the subset of people who have lost significant weight (muscle and fat). The weight loss was fairly rapid at first but then slowed over a period of years until it stabilized in a state of emaciation.

My fingerprints are also distorted as mentioned by Dr. Cheney in this presentation which includes comparison photos. Here's an extract from the presentation that relates to tissue degradation (I've bolded one section):

We took 16 of these fingers and we biopsied them with punch biopsies and sent them to UNC Chapel Hill pathology division and then got the results back. They were very telling.

One defect was a perilymphacitic vasculitis, which is a signature of immune activation in which the cytokines are produced against lymphocytes migrate into the tissues and cut off the small nutrient vessels. That could affect the skin surfaces, because of this.

It is seen in lupus. It is seen in other vasculitities (?). It is seen in chronic fatigue syndrome.

The other thing he saw was even more interesting. He saw punched-out lesions in the fibroblasts, which will impair collagen formation, and that will impair the ability to make a fingerprint, because the ridges will tend to collapse and smooth out.

I asked the pathologist to tell me what diseases cause punched-out lesions in the fibroblasts. He said the only thing that seems to do that is scurvy. And I said, “Scurvy?” Then I thought for a minute, and I thought – scurvy is Vitamin C deficiency, but what if you simply had severe oxidative stress? Would this display the same phenomenon?

So these people are not Vitamin C deficient. They are under severe oxidative stress, and it’s taking their fingerprints.

 

[Wishful]

No, haven't noticed any such changes. However, I'm in the subgroup that don't have the common physical effects; mostly (totally?) neurological ones.

 

[Saraswati]

Yes, gums receded and got my first cavities, maybe from dry mouth. My skin seems like it lacks collagen. And I found out that I have four mildly leaky valves, before just mild mitral valve prolapse, and now aortic valve sclerosis. I asked the doctor if the sclerosis was common and he said no, not at my age. It is in older people! I don't know if some is from lack of exercise but I wonder if it's from nutrient deficiencies and lack of qi. In Chinese medicine they treat prolapse with herbs and acupuncture.

 

[Moof]

I've had hypermobility with subluxations since early childhood, which didn't get worse at ME onset. (It's actually much better now, as ageing has reduced the laxity of my joints quite a bit.)

 

[Rufous McKinney]

My fingerprints are also distorted as mentioned by Dr. Cheney in this presentation which includes comparison photos.

OMGosh: in shock. Looked at my fingerprints. EGAD! Is this true?

Have I not recently looked at my own fingers? They are all: covered in like deflated, large wrinkles and folds and look completely: SICK. The original fingerprints a vaguely visible, beneath the deflated collapsed and wrinkled messes.

Do we need a diagnostic? IS THIS NOT A DIAGONISTIC? Sorry: I am in a kinda shock.

 

[toyfoof]

My fingerprints look like that too! Crikey! My gums are also super receding. Are these all symptoms of connective tissue degradation? Does that indicate EDS?

 

[Ellie_Finesse]

Yes but then I have EDS as well, along with chronic migraines. I don’t think connective tissue issues have anything to do with ME. There are many people that have EDS and ME. What I will say though, is that for me, ME EDS and migraines feed into each other, making my ME symptoms worse and my gut issues worse.

In EDS it’s not just the joints and skin that are affected, it effects all the connective tissue in your body too. For example, bladder, womb and bowel causing prolapse. Also the mitral valve in your heart. With your stomach it can also cause gastroparesis.

EDIT: just to add to the above, with EDS the collagen is faulty. EDS is an inherited condition. Think of an elastic band and chewing gum. The connective tissue when stretched is supposed to go back the same way an elastic band does. In EDS our connective tissue is more like chewing gum, once stretched it stays stretched.

 

[AnkeC]

oh bugger! I so wish I hadn't read this now. How have I missed my horrid fingertips? How long has this been going on? I noticed that the back of my hands started looking like the hands of an old woman some time back, but figured it was lack of moisturising on my part. Got no explanation for my finger tips though. *sigh*

I am not hypermobile, quite the opposite actually. Used to be when I was little. Loved entertaining the family by putting my feet behind my head. But I do have "thin, wide scarring".... piezogenic papules... migraines, gut issues galore. Not sure i want to add another acronym to my list.

 

[Ellie_Finesse]

Do your eyes have trouble focusing with your chronic fatigue ?

oh bugger! I so wish I hadn't read this now. How have I missed my horrid fingertips? How long has this been going on? I noticed that the back of my hands started looking like the hands of an old woman some time back, but figured it was lack of moisturising on my part. Got no explanation for my finger tips though. *sigh*

I am not hypermobile, quite the opposite actually. Used to be when I was little. Loved entertaining the family by putting my feet behind my head. But I do have "thin, wide scarring".... piezogenic papules... migraines, gut issues galore. Not sure i want to add another acronym to my list.

Gut issues don’t mean you have EDS neither does having migraines. As for the scarring finger tips hands and papule’s, I’m sure lots of people have those without having ME or EDS. our hands are usually the first to age quickly. Hypermobile EDS (HEDS) has no genetic testing as of yet but all other types there is. To get diagnosed with EDS there is a strict criteria one of which is beighton score of hypermobility, which is the first that is checked. I wouldn’t worry about it.

 

[Rufous McKinney]

but figured it was lack of moisturising on my part. Got no explanation for my finger tips though. *sigh*

I am fully experiencing at this moment: I am in tears and laughing hysterically at the same time. This is actually possible.

Sigh.

And I too, thought, it was a lack of moisturizing!

 

[Rufous McKinney]

As for the scarring finger tips hands and papule’s, I’m sure lots of people have those without having ME or EDS.

FYI: I am heterozygous for: EDS 7A. Per recent discoveries, assuming the data analysis is correct.

But I don't really know what this means, yet.

I do not believe I have EDS. I have: weakened collagen processes probably due to MECFS.

 

[Mel9]

I put no, but my finger tips have become very smooth.

 

[Ellie_Finesse]

FYI: I am heterozygous for: EDS 7A. Per recent discoveries, assuming the data analysis is correct.

But I don't really know what this means, yet.

I do not believe I have EDS. I have: weakened collagen processes probably due to MECFS.

@toyfoof mentioned does it mean she has EDS, I answering that and giving an opinion of what I think about weakened connective tissue being due to ME. Connective tissue is something that goes right throughout your body which is also attached to organs, veins etc. The only information I have ever found on weakened/faulty collagen is with connective tissue disorders. Have not found any other evidence suggesting it can happen with ME.

 

[Ellie_Finesse]

@Rufous McKinney I am just trying to working out what you meant by:

FYI: I am heterozygous for: EDS 7A. Per recent discoveries, assuming the data analysis is correct.

Do you mean you have had genetic testing done to determine you have EDS or that you did something like a 23Me? My understanding is that with 23Me, it doesn’t mean you have what is found. I don’t really understand how 23Me type data works to be honest.

 

[Hip]

@sb4, very good poll to conduct.

You might like to define what you mean by "slow onset" or "rapid onset". I am guessing by rapid you mean within a few months of getting ME/CFS, and slow within a few years.



In my case, I developed receding gums within a few months of catching my virus, and crêpe paper-like fine wrinkling of the skin after around 12 to 18 months. My virus is coxsackievirus B, which is know to induce the immune system to secrete connective-tissue degrading enzymes called MMPs (matrix metalloproteinases).

Interestingly, these symptoms occurred after I caught my virus, but before I developed ME/CFS. I only developed ME/CFS when this virus breached into my central nervous system and caused a brain infection (an episode of encephalitis) around 20 months after I first caught it.

 

[GypsyGirl]

Yep, slowly. I have hEDS.

Saw big improvement after addressing mold (a huge trigger of ME/CFS for me in addition to viral aspects) - several symptoms like saggy skin, discoloration & poor healing, the more severe subluxations and dislocations, receding gums - improved after I treated biotoxin/mold illness and practiced mold avoidance. Haven't had a full dislocation since, and avoiding mold decreases overall connective tissue laxity.

But - the initial issues appear to have had a destabilizing effect with residual joint issues & instability that I haven't been able to to fully recover from and has created new problems.

 

[Rufous McKinney]

Do you mean you have had genetic testing done to determine you have EDS or that you did something like a 23Me? My understanding is that with 23Me, it doesn’t mean you have what is found. I don’t really understand how 23Me type data works to be honest.

I had Ancestry.com DNA done. Those data were run thru a soft ware program that is being tested, and it reports on rare alleles, and it identified I am heterozygous for EDS7A. I'm not sure if its: actually a concern, or accurate, or benign. need to look into it further. Just a pretty odd coincidence?