Symptoms correlate strongly with unknown connective tissue disorder

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I could use your thoughts here...

My symptoms are:
- Joint/connective tissue "weakness" i.e. not too stable/firm, liable to injure.
- GERD (from possible weak esophageal sphincter, confirmed by gastroenterologist)
- Stretchy /easily bruised skin, but only in certain areas, like my biceps. In areas where skin is wrinkly/stretchy, wounds/scratches heal very slowly. Weird how this skin manifestation is localized, and took awhile to spread to certain regions.
- Skin is also pale/translucent in color, "pallor" is probably the right word to describe it. It's almost like there's a lack of blood flow to my skin now.
- Heart palpitations, probably from vagus nerve irritation due to the GERD
- Pretty bad brain fog
- Agitation / physical anxiety
- Hemorrhoids
- Muscles are "soft" and "floppy"
- Loss of muscle, muscular strength and fat around extremities, especially calves, forearms, and neck. I get neck pain, knee pain, lower back pain now.
- This may be TMI but the wrinkly skin has spread to my male, um, reproductive organ, and the problems with wound healing have showed up there as well - I'm now getting the beginning of pain and malformation in the area (not sure I have full blown Peyronie's, which FYI is a connective tissue disorder, but it's the start of it - confirmed by a urologist).

Other factors:
- I'm in my early thirties, and this all started abruptly 4-5 years ago - completely healthy with 0 issues before then.
- Things get better when I take a combo of antibiotics (including doxycycline), only to slowly return to how they were
- I don't get fatigue really as a symptom, but the other symptoms overlap a lot with some of the symptoms ME/CFS patients deal with.
- No inflammatory markers or positive lab tests though I've been tested for everything

Possible explanations:
- EDS: But wtf, I was fine before, I didn't even know you could get 'acquired' EDS. I barely fit the beighton criteria, so I'm not a slam dunk EDS case.
- Gut dysbiosis - maybe multiple rounds of antibiotics caused a dysbiosis that is causing low-grade inflammation which leads to tissue destruction and malabsorption, leading to multi-system symptom manifestation
- A bacterial infection like bartonella which in a few case studies is known to cause EDS-like syndromes that resolve with treatment
- My body's immune system is malfunctioning leading to perhaps reactions to normal viruses like CMV and EBV.

Any ideas of what the heck to do next?? I'm thinking of trying a fecal transplant or getting back on antibiotics. I could get tested for EDS but not sure how much that Invita panel costs. I have some really far out there possibilities like mold, jaw cavitations, and things like that that I'm looking into.
 
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gbells

Improved ME from 2 to 6
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I'd watch out for cervicocranial instability with the lax ligaments. Curcumin can manage the inflammed blood vessels to improve blood supply (also light exercise). Check minerals as they are needed for strong ligaments. Our food supply is low due to factory farming so you may be low.
 

lenora

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How about your Internist to find out basics such as do you or do you not have kyphoscoliosis? L. sided scoliosis is more common with neurological diseases.

There are many types of EDS, please don't assume that you have the worst type. You may have it as a result of faulty genetics...I know I have a very mild form of it, but then I also have two other genetic diseases (well, 3 or 4 if you include the kyphosis and scoliosis).

Have you been to a neurologist yet? That may be your best bet, b/c a lot of other conditions may also be ruled out at the same time.

As with most of us, it seems that we did fairly well one day and then sometime in our 30's-early 40's our world shifted. A neurologist should be able to send you for the proper type of MRI or any other test your may need. This won't be an overnight answer type of thing, but rather taking one item off the list at a time.

In the meantime, try to get as much of your family history as possible. If it's genetic, there may be others in the family affected in varying degrees. A lot of time and patience is needed in making a proper diagnosis. May I wish you good luck in your venture. Yours, Lenora.
 

nerd

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What do these show? @nerd
These are different types of inflammation markers. But it's better to test based on a proper anamnesis.

All of the symptoms you described could be attributed to CFS/ME or its typical comorbidities. But CFS/ME is always the last explanation because there isn't an approved diagnostic marker yet.

If your ANA is below 1:100/1:80, it's not a primary autoimmune disease against connective tissue. A pathogen background or immunological dysfunction is more likely then.

By the way, common blood oximeters can show the blood perfusion index (in case the phenomenon also affects your fingers).