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

[percyval577]

I watched my gum for about two years, but I didn´t manage to go to a dentist for several years. My gum was absolutly fine.
Then I changed from drinking tea to drinking coffee.
When I finally manganed to go to a dentist I had only one little decay, but "your gum looks very bad".

Interestingly the change to coffee went along with a very good improvement.
So, why receded my gum at some places, coincidently with an improvement?
Now I have read that green tea is good for the gum (which I drank in the morning).

Another issue I think on: tea should contain quite much manganese, wheareas coffee almost doesn´t any. The effect I can detect neurologically now.
Already prior to my improvement I was by accident quite low on manganese. Maybe now too low? (Mn is important for tissue built up). On the other side, when I detoriated from a high manganese diet, my gum didn´t recover but stayed bad coloured and somehow weak.
So, it might have been the good effect of green tea.


I have also weak and a bit furrowed fingertips. My skin on the back of the hands is also somehow sandy and leather-like. Don´t think that this is normal.
I have shrunken. Before my EBV I was 2cm taller than my father, later 2cm smaller. [But this is at least partly due to posture, as it happens now time to time that I am suddenly very upright, which gains 1cm.]

 

[SherDa]

I just wonder if fat and carbohydrate metabolism are impaired, and the amino acids in connective tissue become the preferred fuel? When I see threads about craniocervical instability and atlantoaxial instability, I tend to think those may be caused by weakened connective tissues, in this case, the ligaments in the uppermost spine. I can probably name quite a few nutrients necessary for healthy connective tissue, and some of them would be affected by inflammation. For example, proline and lysine need to be hydroxylated to form collagen, so anemia of inflammation would be a problem. I've had trouble determining whether my connective tissue degradation is related to collagen breakdown or keratin breakdown. Both could be affected by low biotin, so I'm exploring that route now.

 

[Judee]

My fingerprints are also distorted

Yes, my fingers have that crisscross pattern as well.

 

[sb4]

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

Cool idea, I hadn't thought of that.

 

[Sarah94]

Does getting lots of stretch marks on skin relate to this?
That might be just because I've put on weight, though.

 

[Judee]

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

I can't recall which ME/CFS doctor or researcher has said this but I think it may have been Dr Myhill. Anyway, whoever it was did say they believe we are living off of amino acids instead.

 

[SherDa]

Cool idea, I hadn't thought of that.

I don't know if it happens this way or not, but burning the aminos in connective tissue would seem a better survival strategy than burning aminos from muscle. (I'm thinking mostly it would protect cardiac muscle from cannibalization but skeletal muscle can be pretty vital in starvation times too.)

 

[SherDa]

Does getting lots of stretch marks on skin relate to this?
That might be just because I've put on weight, though.

I would say that is likely so. Further, I would wager that stretch marks are a pathological state and are not 'normal' even during weight gain. I think this could affect any connective tissue or other structural proteins - hair, skin, nails, joints, veins, organ stromal tissue, ligaments, tendons and also including mucosa (including the gut mucosa).
EDIT: and possibly teeth since they contain both keratin and collagen and bones since they contain collagen- basically possibly all the collagen and elastin and/or keratin.

 

[SherDa]

I don't know if the fingerprint changes will ever be considered diagnostic of CFS as it occurs in celiac disease. There is atrophy of the ridges as well as the deep lines.

Fingerprint Changes in Coeliac Disease

 

[Remi]

Hairloss and texture change, ridges on nails, acne and dry skin, eczema, sagging eyelids at youngish age, though I wonder if I didn't have low t3 as well. I'm now hypothyroid, but decades later than these symptoms started.

P.s. not sure about gum, but have receding gum on tooth with dental crown.

 

[godlovesatrier]

I have receding gums with 10% bone loss at age 33. But couldn't that be due to a weakened immune response. Why would that be due to a connective tissue problem? If the body can't run it's normal processes properly then it stands to me that would cause a lot of the problems listed as symptoms. Whereas someone with hallmark eds symptoms such as organ displacement, hyper mobility and bad gastric distress would be someone faced with connective tissue problems?

Also apart from biotin and selenium what else can you take to protect collagen and connective tissue? I've also been researching CNS herbs and supplements to protect the myelin sheath but found nothing.

 

[PatJ]

I've also been researching CNS herbs and supplements to protect the myelin sheath but found nothing.

If you're OK with naturopathy: http://www.herballegacy.com/Nerves.html

 

[godlovesatrier]

@PatJ - Thanks

 

[SherDa]

I have receding gums with 10% bone loss at age 33. But couldn't that be due to a weakened immune response. Why would that be due to a connective tissue problem? If the body can't run it's normal processes properly then it stands to me that would cause a lot of the problems listed as symptoms. Whereas someone with hallmark eds symptoms such as organ displacement, hyper mobility and bad gastric distress would be someone faced with connective tissue problems?

Also apart from biotin and selenium what else can you take to protect collagen and connective tissue? I've also been researching CNS herbs and supplements to protect the myelin sheath but found nothing.

I'm not an EDS expert at all, but Wikipedia lists 13 distinct types. Some cause bone loss, and some do not. Some cause periodontal problems, and some do not. Osteogenesis imperfecta is another collagen disorder that affects bones. Scurvy is a collagen disorder that affects the gums. There are different types of collagen, so the symptoms seem to depend on which type(s) of collagen is/are affected. Deficiency of vitamin C or other nutrients that affect collagen production could presumably affect collagen structure and thus function.

I'm sure this is not an exhaustive list, but off the top of my head, the following nutrients may affect collagen (and/or elastin). (Collagen has a triple helix structure with cross-linked proteins that provide strength and flexibility.): Copper, iron, vitamin C, lysine/hydroxylysine, proline/hydroxyproline, glycine, silica, zinc, manganese, sulfur, B6, B1 and vitamin A (and, indirectly, all of the nutrients needed to make these minerals bioavailable).

To learn more, I would suggest doing an internet search of these nutrients individually - for example, search for "vitamin A collagen synthesis." You can create a more complete picture of the process of collagen synthesis by learning what each nutrient does. For example, vitamin A can down-regulate matrix metalloproteinases that break down collagen as well as stimulate new collagen production.

I just threw away a list of nutrients needed for myelin, but I remember that it contained biotin, copper, phospholipids and cholesterol, and I read somewhere that myelin can be cannibalized for a source of phospholipids.

And (though no one asked, but may as well discuss while we're at it), the following nutrients may affect keratin production. Biotin, B5, cysteine, zinc and vitamin A.

I've always had some signs of collagen problems, but I grew up very malnourished and feel as though I was deficient in many of these nutrients for most of my life, so I've spent some time learning about collagen. The connective tissue issues that came on more suddenly in 2015 were different, and thus, I think the problem may be keratin. For example, I have the opposite of keratosis pilaris; I can see each hair follicle, but that is because they are caved in and not because they are sticking out. Also, my hair has become very fine and lost some of its curl, and curls are caused by disulfide bonds that hold the keratin in a curled position. I could go on with the keratin deficiency symptoms, but I'll stop since we all have internet access.

 

[Sarah94]

Is this a sign of connective tissue degradation?

Up until a few months ago, there was never any problem getting blood from me for tests. But now apparently it's really difficult to get my veins.

 

[andyguitar]

It does not seem very likely. You might be a bit dehydrated when the blood is being drawn. Or the person taking the sample might be a bit less than competent!

 

[Heartl]

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.

 

[Sarah94]

It does not seem very likely. You might be a bit dehydrated when the blood is being drawn. Or the person taking the sample might be a bit less than competent!

The person taking the sample is the same one who used to be able to take it easily.
And 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.

 

[Learner1]

the following nutrients may affect collagen (and/or elastin). (Collagen has a triple helix structure with cross-linked proteins that provide strength and flexibility.): Copper, iron, vitamin C, lysine/hydroxylysine, proline/hydroxyproline, glycine, silica, zinc, manganese, sulfur, B6, B1 and vitamin A (and, indirectly, all of the nutrients needed to make these minerals bioavailable).

the following nutrients may affect keratin production. Biotin, B5, cysteine, zinc and vitamin A.

Good lists! I am on most of these prescribed by my naturopathic doctor due to what my lab tests have said. People who know I'm ill always look at me and say how good my skin, hair, nails, and gums look. I do not believe I have collagen problems due to the nutrition that I have been getting. I did have problems keeping vitamin C levels up as I think it goes to recycling glutathione due to oxidative stress, but going up to 3g 3 times a day helped.

 

[Ellie_Finesse]

Is this a sign of connective tissue degradation?

Up until a few months ago, there was never any problem getting blood from me for tests. But now apparently it's really difficult to get my veins.

No it’s not an EDS problem. I have EDS and have no problems giving blood. My husband never used to have problems giving blood, but now he does and he doesn’t have EDS. With EDS you bruise easily though, I’m always covered in bruises and usually have no idea how it happened lol.