Are these symptoms sounding like connective tissue disease?

[ChookityPop]

-I have mild pectus excavatum which is associated with connective tissue disease.
-Loose skin
-Slack/loose shoulders/shoulder ligaments. Physiotherapist told me but no dislocations.
-I can bend my fingers 90 degrees backwards. But no thumb bending all the way back
-Always told I had very soft hands, slack ligaments in my shoulders.
-Have had pain in connective tissues and muscles since 2019.
-Eye pain and issues.
-Big blood vessels

-You can see the veins through my skin. But not now as I am pretty tan.
-General feeling of being unwell when having PEM or muscles are burnt out for example my coat hanger. If my coat hanger is inflamed I get tired, fatigued and full body inflammation feeling that make me feel unwell.
-Had lots of issues behind my knees when I relapsed in 2019. Was diagnosed with bakers cyste

-"Great" benefit from full bodycompression
- Dysautonomia with blood pooling
-MCAS? I get severe dizziness from drinking kefir.
-Dizziness when I burn out my back muscles.
-Clicking/popping Knees, chest, fingers etc
-I have cracking sounds coming from my chest/bones when I stretch etc. This began when I got sick.
My sister was told that she most likely has CTD as her shoulders goes out of placement very easy and it has happened many times.

There are most likely some symptoms that could be relevant I dont remember atm.

 

[Reenie Beanz]

-I have mild pectus excavatum which is associated with connective tissue disease.
-Loose skin
-Slack/loose shoulders/shoulder ligaments. Physiotherapist told me but no dislocations.
-I can bend my fingers 90 degrees backwards. But no thumb bending all the way back
-Always told I had very soft hands, slack ligaments in my shoulders.
-Have had pain in connective tissues and muscles since 2019.
-Eye pain and issues.
-Big blood vessels

-You can see the veins through my skin. But not now as I am pretty tan.
-General feeling of being unwell when having PEM or muscles are burnt out for example my coat hanger. If my coat hanger is inflamed I get tired, fatigued and full body inflammation feeling that make me feel unwell.
-Had lots of issues behind my knees when I relapsed in 2019. Was diagnosed with bakers cyste

-"Great" benefit from full bodycompression
- Dysautonomia with blood pooling
-MCAS? I get severe dizziness from drinking kefir.
-Dizziness when I burn out my back muscles.
-Clicking/popping Knees, chest, fingers etc
-I have cracking sounds coming from my chest/bones when I stretch etc. This began when I got sick.
My sister was told that she most likely has CTD as her shoulders goes out of placement very easy and it has happened many times.

There are most likely some symptoms that could be relevant I dont remember atm.

It is possible that you have some degree of connective tissue disorder. For my daughter too has very mild symptoms, not enough to get a diagnosis, but I believe enough for her to have been at risk of developing CFS/ME when she encountered a stressor.

From what I have read about CFS/ME, connective tissue disorders are a risk factor for developing CFS/ME. The physiological reason is that the cells of the endothelial layer of capillaries are not well stuck together and the capillaries are at risk of being very leaky.

When the body undergoes extraordinary trauma or stress, be it physical, emotional or psychological, the sympathetic nervous system gets activated and this leads to vasodilation. And in people with connective tissue disorders it leads to leaky capillaries in the brain and a leaky gut.

The leaky capillaries in the brain leads to lymph accumulation which results in brain inflammation, setting of mast cell activation syndrome and HPA axis dysregulation.

This perhaps why the drugs which are able to pass through the blood brain barrier are among the most effective to treat symptoms of CFS/ME, such as hydroxyzine, propranolol, etc...

Connective tissue disorders are hereditary. People with Autism and ADHD are also more likely to have connective tissue disorders. My daughter has ADHD.

 

[ChookityPop]

It is possible that you have some degree of connective tissue disorder. For my daughter too has very mild symptoms, not enough to get a diagnosis, but I believe enough for her to have been at risk of developing CFS/ME when she encountered a stressor.

From what I have read about CFS/ME, connective tissue disorders are a risk factor for developing CFS/ME. The physiological reason is that the cells of the endothelial layer of capillaries are not well stuck together and the capillaries are at risk of being very leaky.

When the body undergoes extraordinary trauma or stress, be it physical, emotional or psychological, the sympathetic nervous system gets activated and this leads to vasodilation. And in people with connective tissue disorders it leads to leaky capillaries in the brain and a leaky gut.

The leaky capillaries in the brain leads to lymph accumulation which results in brain inflammation, setting of mast cell activation syndrome and HPA axis dysregulation.

This perhaps why the drugs which are able to pass through the blood brain barrier are among the most effective to treat symptoms of CFS/ME, such as hydroxyzine, propranolol, etc...

Connective tissue disorders are hereditary. People with Autism and ADHD are also more likely to have connective tissue disorders. My daughter has ADHD.

Interesting and thanks for sharing!

I just learned that I most likely have a Von Willebrand bleeding disorder as well as APS which is pretty weird though I have seen others with those two. Von Willebrand is apparently often seen in people with connective tissue disaese.

 

[Crux]

@ChookityPop ,

Some of these symptoms may be from a low copper intake.
This paper is about copper deficiency and heart disease, but it brings up many other important facts.
Not all will apply, though.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6196933/

"In humans, copper supplementation of adult men at 2 mg/day for 4 weeks increases levels of SOD and plasma diamine oxidase "

"Lysyl oxidases are extracellular enzymes with copper cofactors and are used in the crosslinking of collagen and elastin; they provide tensile strength and elasticity to blood vessels. Absence of lysyl oxidases as seen in lysyl oxidase knockout mice leads to aortic aneurysms, cardiovascular dysfunction and death.61 "

"Platelet aggregation is increased in copper deficiency, and in copper-deficient rats the amount of fibrinogen in platelets is about fourfold higher than in controls while plasma fibrinogen is lower. The increased platelet aggregation in copper deficiency may be due to increased fibrinogen content of platelets.67 "

"Postcapillary venules show significantly greater leakage of proteins in response to histamine in copper-deficient rats.63 The response may be due to increased numbers of circulating mast cells."

Copper and clotting factors ,

https://www.nature.com/articles/s41598-020-62560-4

"The remaining 5% of copper is functioning as a cofactor in Cu,ZnSOD-3, clotting factors V and VIII, amine and diamine oxidases, ferroxidase II and some other enzymes5."

 

[Violeta]

@ChookityPop ,

Some of these symptoms may be from a low copper intake.
This paper is about copper deficiency and heart disease, but it brings up many other important facts.
Not all will apply, though.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6196933/

"In humans, copper supplementation of adult men at 2 mg/day for 4 weeks increases levels of SOD and plasma diamine oxidase "

"Lysyl oxidases are extracellular enzymes with copper cofactors and are used in the crosslinking of collagen and elastin; they provide tensile strength and elasticity to blood vessels. Absence of lysyl oxidases as seen in lysyl oxidase knockout mice leads to aortic aneurysms, cardiovascular dysfunction and death.61 "

"Platelet aggregation is increased in copper deficiency, and in copper-deficient rats the amount of fibrinogen in platelets is about fourfold higher than in controls while plasma fibrinogen is lower. The increased platelet aggregation in copper deficiency may be due to increased fibrinogen content of platelets.67 "

"Postcapillary venules show significantly greater leakage of proteins in response to histamine in copper-deficient rats.63 The response may be due to increased numbers of circulating mast cells."

Copper and clotting factors ,

https://www.nature.com/articles/s41598-020-62560-4

"The remaining 5% of copper is functioning as a cofactor in Cu,ZnSOD-3, clotting factors V and VIII, amine and diamine oxidases, ferroxidase II and some other enzymes5."

Have you had ceruloplasmin, cellular level of copper and zinc measured?

 

[Crux]

Have you had ceruloplasmin, cellular level of copper and zinc measured?

I've had ceruloplasmin, serum copper, but not zinc measured. They look good.

 

[ChookityPop]

@ChookityPop ,

Some of these symptoms may be from a low copper intake.
This paper is about copper deficiency and heart disease, but it brings up many other important facts.
Not all will apply, though.

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6196933/

"In humans, copper supplementation of adult men at 2 mg/day for 4 weeks increases levels of SOD and plasma diamine oxidase "

"Lysyl oxidases are extracellular enzymes with copper cofactors and are used in the crosslinking of collagen and elastin; they provide tensile strength and elasticity to blood vessels. Absence of lysyl oxidases as seen in lysyl oxidase knockout mice leads to aortic aneurysms, cardiovascular dysfunction and death.61 "

"Platelet aggregation is increased in copper deficiency, and in copper-deficient rats the amount of fibrinogen in platelets is about fourfold higher than in controls while plasma fibrinogen is lower. The increased platelet aggregation in copper deficiency may be due to increased fibrinogen content of platelets.67 "

"Postcapillary venules show significantly greater leakage of proteins in response to histamine in copper-deficient rats.63 The response may be due to increased numbers of circulating mast cells."

Copper and clotting factors ,

https://www.nature.com/articles/s41598-020-62560-4

"The remaining 5% of copper is functioning as a cofactor in Cu,ZnSOD-3, clotting factors V and VIII, amine and diamine oxidases, ferroxidase II and some other enzymes5."

Very interesting, thanks for sharing.
I have not tested ceruloplasmin but my serum copper and zinc is good. Do you think its worth getting a ceruloplasmin test?

 

[Crux]

Do you think its worth getting a ceruloplasmin test?

Yes, Thanks to @Violeta ,

Then you will see if the copper is bound to ceruloplasmin, where it can be actively antioxidant, antimicrobial, and regulate iron metabolism.

There's not much about active vitamin A's role in producing ceruloplasmin, but taking low dose cod liver oil increased my ceruloplasmin to a better level. ( there are gel caps. standard process makes them )

 

[ChookityPop]

Yes, Thanks to @Violeta ,

Then you will see if the copper is bound to ceruloplasmin, where it can be actively antioxidant, antimicrobial, and regulate iron metabolism.

There's not much about active vitamin A's role in producing ceruloplasmin, but taking low dose cod liver oil increased my ceruloplasmin to a better level. ( there are gel caps. standard process makes them )

Great, I will have this tested. I eat beef liver weekly so I should have good levels of vit A.

 

[Crux]

Great, I will have this tested. I eat beef liver weekly so I should have good levels of vit A.

Did the results of your blood tests for zinc and copper fall well into normal range ? Some researchers debate whether they're accurate.

My serum copper seems accurate enough. I haven't had zinc tested, I take a lower amount and because I get low copper symptoms if I take more. ( histamine reactions, sore joints )