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

[Ellie_Finesse]

Yes! My teeth seemed to have receded very quickly. I’ve noticed my arch in my feet have suddenly flattened when I used to have high arches. I also have neck weakness and overall spine weakness. My knees have always been hyper mobile but really want to pop back when I’m standing which I never noticed before. I’m wondering if some of this is deconditioning from not being active in the last year.

It’s quite common for people to have receding gums, although in EDS more common. There is quite a strict criteria for EDS diagnosis now. You are probably right and it’s more deconditioning/ME why you have weakness.

 

[BadBadBear]

I just wonder if fat and carbohydrate metabolism are impaired, and the amino acids in connective tissue become the preferred fuel? .

Don't we know that in CFS the body tries to run on amino acids? Thought I read that, if so seems healing would be hampered. As well, in my case I always had low protein (albumin). Maybe we are catabolizing collagen and protein for basic energy and have none for repair.

I am in the mild subset, my early symptoms included muscle loss and developing crepe textured skin. It shows the most in my hands and arms. My skin is very thin there as well, with no fat (I am a bit overweight, but my hands look like the crypt keepers).

 

[Rufous McKinney]

Don't we know that in CFS the body tries to run on amino acids?

I suspect that IS what may be occuring: we are digesting our own bodies. Thats a freaky thing to say, yet it seems likely.

I just started BCAA's last week. They seem to be helpful..so I will keep at it.

I now weight what I did in my 20's. Little muscle left. Get compliments from friends on how GREAT I look.

So at some point I got as far as looking up an old paper on the amino acids in muscle and connective tissue...which is largely collagen. So there are differences in the make up of aminos in those two categories.


My intention was to FIGURE OUT if: there is something in the collagen we are burning thru...thats is not in muscle tissue. So thats on my list.

But alas, another Bad Day, here on the farm in ME-land.

 

[Shoshana]

I've been hydrating myself so much before the blood draw!
She said it might be because I've put on weight. But my mum pointed out that she has a cousin who is much much more overweight than me and has no problem with blood draws.
She also said it could be due to inactivity.

It seems like they are grabbing at straws,
just wildly guessing, it discouragingly sounds like, to me.

And it seems uncannily like other symtoms we have. And like many of our medical practitioners from whom we have seeked help. If we are active, they say we are TOO active. If we are not active, they say the inactivity is causing our problems.

If we had water, they say it was perhaps too much; if we had not enough water, it's not enough, and causes whatever the difficulty is.

 

[SherDa]

Don't we know that in CFS the body tries to run on amino acids? Thought I read that, if so seems healing would be hampered. As well, in my case I always had low protein (albumin). Maybe we are catabolizing collagen and protein for basic energy and have none for repair.

I am in the mild subset, my early symptoms included muscle loss and developing crepe textured skin. It shows the most in my hands and arms. My skin is very thin there as well, with no fat (I am a bit overweight, but my hands look like the crypt keepers).

Yes, I'm not questioning whether we burn amino acids in general. I'm questioning whether those with connective tissue degradation are preferentially burning the amino acids found in higher amounts in connective tissue specifically. As @Rufous McKinney alluded to, there are some amino acids that predominate in connective tissues and some amino acids that predominate in muscle. My muscles don't seem to be affected nearly as much as my connective tissue is, hence the speculation that I may catabolize more of the amino acids found in connective tissue.

However, there's also the possibility that connective tissue is being degraded by inflammatory cytokines upregulating matrix metalloproteinases (MMPs). Research seems to indicate that MMPs play a role in gum disease.

Maybe there are those who preferentially burn muscle, those who preferentially burn connective tissue and those who preferentially burn serum amino acids and proteins (such as albumin) with probably some degree of overlap?

@BadBadBear , I'm curious - do you have elevated C-reactive protein (CRP) concurrently with low albumin? I think that, when CRP goes up, albumin goes down (if I'm remembering correctly). I think maybe that would indicate that your albumin is low from decreased production in the liver due to inflammation and not necessarily from being burned for energy?

What I would really love to know is if my connective tissue degradation is caused by catabolism simply because fat/carb metabolism is impaired or if it is caused by inflammation, but maybe these are 2 sides of the same coin? Maybe connective tissue is degraded by MMPs so the amino acids can be burned? Maybe these enzymes are ubiquitous in many disease states? What purpose do MMPs serve? I just don't know enough about this topic yet.

 

[SherDa]

I suspect that IS what may be occuring: we are digesting our own bodies. Thats a freaky thing to say, yet it seems likely.

Tis good to have a backup fuel though, right?

 

[lafarfelue]

There's a bit of info about MMPs in relation to collagen here: https://me-pedia.org/wiki/Collagen

and MMPs generally, here: https://me-pedia.org/wiki/Matrix_metalloproteinase

 

[Sarah94]

So how could we treat connective tissue degradation? I suspect that I have it - and don't want it to get worse and give me CCI or something.

 

[suevu]

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.

How did you address mold and what type of mold?

I noticed my finger prints are similar to the picture, but they have been worse when I was severe, now I moderate-mild.

 

[GypsyGirl]

How did you address mold and what type of mold?

I noticed my finger prints are similar to the picture, but they have been worse when I was severe, now I moderate-mild.

I was treated for biotoxin illness and CIRS (Chronic Inflammatory Response Syndrome, caused by biotoxin exposure - in my case, mold) by a doctor certified in the Shoemaker protocol (by Dr. Shoemaker, a leading mold/biotoxin illness expert), and practiced mold avoidance with some major lifestyle changes (ie, limiting exposure).

There were multiple types of molds to which I was reactive, and in addition, I developed secondary Multiple Chemical Sensitivity to other biotoxins that had high VOCs (Volatile Organic Compounds) - from mold to fragrance to new construction offgassing, old building offgassing, algae, general poor air quality.

 

[suevu]

I was treated for biotoxin illness and CIRS (Chronic Inflammatory Response Syndrome, caused by biotoxin exposure - in my case, mold) by a doctor certified in the Shoemaker protocol (by Dr. Shoemaker, a leading mold/biotoxin illness expert), and practiced mold avoidance with some major lifestyle changes (ie, limiting exposure).

There were multiple types of molds to which I was reactive, and in addition, I developed secondary Multiple Chemical Sensitivity to other biotoxins that had high VOCs (Volatile Organic Compounds) - from mold to fragrance to new construction offgassing, old building offgassing, algae, general poor air quality.

Interesting, I only thought we could react to black mold, there isn't too much of that at my place, but there were/is plenty of yellow one that grows incredibly fast. You can paint that in just a couple months its growing again.

So did you recover fully after avoiding mold? I considering moving to another apartment, but financially I can't afford something too expensive.

 

[vision blue]

Yes, i have tissue degradation including skin. The worst is on my face -e.g. last year i used sea buckthorne oil right over my eyebrows- it's not just that it swelled up, but it left craters that look like "11 lines" if you know what that is. but not from aging- just an overnight change and its permanant. i doc said i have something called derm atrophy or something. he said it was rare. I previously had another event on face years earlier at beginning of disease. either mast cell or allergic reaction to dental work caused swelling at sides of mouth, but instead of going away, it produced permanant swellings and depressions. If i don't injury something, its ok, but if i do, its major.

i've had slower ones as well- the crepe paper skin stuff . Plus I've lost hair all over my body. 80-90 percent, de[endiong on the part. its like the quote above that those little nutrient vessels aren't working- you need those for hair too. Plus am developing Terry's nails, which is when they turn white. not getting enough blood supply or something. So many veins on hands like a real old person.

but i'm also way too thin - like Pat i think here name was, so now there's a confoudn (though all of above except maybe the veins, started way way before the wasted physical state).

also connective tissue breakdown with tendons as first site.

I do not think i have EDS. I have never had any hypermobility in joints. if anything, i'm awfully stuff and have trouple getting full extensions, let alone hyperextensions. I've done exome genetic testing, so unlikley i missed any known EDS mutations.

Also gum recessions. those are odd because i'll get them in a sudden burst, then it will stay level for a while, then they get inflammed again and i'll have another sudden burst with more recession (confound though since teeth are in abysmal shape. because dental "allergies" (mast cell??) started this all for me, i no longer can go to a dentist.

ok, i'm off to take my fingerprints. so i can check that...thanks for the thread.

 

[gregh286]

Yes, I'm not questioning whether we burn amino acids in general. I'm questioning whether those with connective tissue degradation are preferentially burning the amino acids found in higher amounts in connective tissue specifically. As @Rufous McKinney alluded to, there are some amino acids that predominate in connective tissues and some amino acids that predominate in muscle. My muscles don't seem to be affected nearly as much as my connective tissue is, hence the speculation that I may catabolize more of the amino acids found in connective tissue.

However, there's also the possibility that connective tissue is being degraded by inflammatory cytokines upregulating matrix metalloproteinases (MMPs). Research seems to indicate that MMPs play a role in gum disease.

Maybe there are those who preferentially burn muscle, those who preferentially burn connective tissue and those who preferentially burn serum amino acids and proteins (such as albumin) with probably some degree of overlap?

@BadBadBear , I'm curious - do you have elevated C-reactive protein (CRP) concurrently with low albumin? I think that, when CRP goes up, albumin goes down (if I'm remembering correctly). I think maybe that would indicate that your albumin is low from decreased production in the liver due to inflammation and not necessarily from being burned for energy?

What I would really love to know is if my connective tissue degradation is caused by catabolism simply because fat/carb metabolism is impaired or if it is caused by inflammation, but maybe these are 2 sides of the same coin? Maybe connective tissue is degraded by MMPs so the amino acids can be burned? Maybe these enzymes are ubiquitous in many disease states? What purpose do MMPs serve? I just don't know enough about this topic yet.

Burning proline I think. My amino proline profile barely registered.
We are burning cartridge.....connective tissue....sinew...whatever else soft. It really comes after my elbow joints and knees.

 

[SherDa]

So is this connective tissue degradation from vitamin K2 deficiency?

I'm having a hard time finding studies that demonstrate that K2 deficiency can cause wrinkles/crepe paper skin, but that seems to be the popular opinion. It is easier to find studies indicating that aortic/arterial elastin is vulnerable to calcification during K2 deficiency. Is it a stretch to assume skin elastin is also adversely affected?

Vitamin K–Dependent Matrix Gla Protein as Multifaceted Protector of Vascular and Tissue Integrity

K2-dependent proteins are expressed by chondrocytes, and when these are undercarboxylated, they may contribute to osteoarthritis, not sure if this would potentially cause other joint problems like laxity. My hypermobile shoulder and hip pain was noticeably better within a few days of starting to eat powdered natto.

Vitamin K Deficiency Is Associated with Incident Knee Osteoarthritis

K2 might inhibit matrix metalloproteinases and possibly stimulates collagen production (collagen genes were upregulated).

Inhibition of matrix metalloproteinase expression by menatetrenone, a vitamin K2 analogue.

Vitamin K2: A Vitamin that Works like a Hormone, Impinging on Gene Expression

K2 may be a contributor to varicose veins.

Identification of differentially expressed genes in human varicose veins: involvement of matrix gla protein in extracellular matrix remodeling.

K2 can improve mitochondrial function.

Oral Consumption of Vitamin K2 for 8 Weeks Associated With Increased Maximal Cardiac Output During Exercise.

More vitamin K2 fun (not related to connective tissue):

The Impact of Vitamin K2 on Energy Metabolism

 

[Insajad]

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.

HI Thinktank,
I have same problems in the skin. Do you have any lesion in your internal organs?

 

[Pyrrhus]

Since the issue of wrinkled fingertips has arisen in this conversation, some may be interested in these possibly related discussions:

Why wrinkled fingers and toes?
https://forums.phoenixrising.me/threads/why-wrinkled-fingers-and-toes.6832/

Finger wrinkling is controlled by the autonomic nervous system
https://forums.phoenixrising.me/thr...reening-test-before-tilt-table-testing.77607/

And a related discussion:

Collagen depletion
https://forums.phoenixrising.me/threads/collagen-depletion.38808/

 

[Reading_Steiner]

I thought about this a lot after hearing the CCI stories, but I came to the conclusion that I had no hypermobile EDS and probably not much degradation of the bones and stuff, my skin seems near normal but it does get dry and rough on the back of my hands, it does have all these wrinkle lines if i squeeze my arm but just looking at it it never struck me as looking particularly unusual, fingerprints are visible although I do have lots of straight lines going across my palms and fingers which does look a bit odd, it might be worth comparing to my brother who is 2 years younger and has no CFS.

The reason I would say I don't have trouble with collagen in terms of causing CCI and other structural problems is I used to mobility scooter around a lot which then turned into bikes powered by electricity, i've done at least 5000 miles on those bikes in the past 3 years including a fair amount off road, my neck has always felt strong and never really had trouble with it, but in the past month thats changed and I don't really know why. I went across some rougher grass at high speed and it really shook me about a lot, felt like my skull was rattling about from the intense vibration, but the first time this happened it just ached a little temporarily, I felt fine later that day or the next day. A couple of weeks later it happened a second time on a really rough field that would have been used by horses in the winter and made it really bumpy, since dried out hard, this time it made my neck feel sore and stiff for a week or more, and im now really sensitive to any small bumps, i'm really worried about this situation as I really don't want to have CCI ontop of everything else, and I like to go outdoors a lot and it helps with my MCS / mold / voc issues.

I know my tyre pressure was higher than ideal on this occasion but its so strange because in the autumn on the same bike I went down trails where it was so rough that it felt like trying to hold onto a pneumatic drill at the front, and that never caused any issues with my neck that time. Possible factors I can think of is I had a covid like illness in December ( probably flu as I got negative tests ), had a lot of stress in the past 2 months and also a lot of exposure to a known very bad air room ( trying to identify and solve the origin of what I react to out there ). I'm going to take Glycine supplement, keep taking Vitamin C when I can, and completely avoid that bad air building.

 

[linusbert]

i got so far only smooth fingers and loosing of hairs on the body.

i have copper deficiency though and my food lacks vitamin C a alot and folate.

 

[cheeseater]

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.)

Same here.