Attempting to identify members of my subgroup - Subcutaneous Fat Loss

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I'm trying to identify members of this community with the following symptoms following a flu-like "viral" onset:

Loss of subcutaneous fat in face, hands, feet, arms and legs.
Wrinkling skin, and increased prominence of veins/muscles.

If we can clearly identify 20-30 of us, I am going to raise money to do a thorough study to search for a pathogen.

If you have these symptoms, please respond here. If you know of someone with these symptoms, please refer them to this thread.

Please also indicate whether your illness is contagious.

Thank you.
 

Moof

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I haven't come across this in ME, only in someone who had autoimmune lipodystrophy. I'll be interested to hear whether others have it too.
 
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I do! And muscle wasting beyond what would be expected through lack of use. Catabolism is a mechanism of many of the known issues within our illness bracket. Muscle, collagen, fat etc etc breakdown was quite common I thought. It certainly is reasonably well documented within the realms of infectious, inflammatory and immune conditions.

I look like a blood rake! Not nice for someone who used to have an athletic body to be proud of :-(.
 

tyson oberle

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I was measured at 6% body fat. I was told that 10%-15% is normal for a male. I have been on a paleo diet for a few years and I think that is the reason for my weight loss and increased prominence of veins and muscles and loss of subcutaneous fat everywhere on my body ( but I'm not sure if my face also has lost fat). A few weeks ago I started adding in a few extra carbs to my diet to see if it will help, but I have problems with bloating (even with a strict paleo diet) so I am being very cautious.
 
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Yes here....continued weight loss....slow rate but still continues .

My face has lost lots of fat. Look rather awful and can do nothing about it. Fingertips all collapsed and wrinkled...skin loose, crepe paper etc. Few muscles left.

Eating more food for several months while in the care of my daughter, didn't result in me gaining any weight.

But yes I am paleo rather, low carb for 15 or more years. Sugar currently minimal.
 
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I'm trying to identify members of this community with the following symptoms following a flu-like "viral" onset:

Loss of subcutaneous fat in face, hands, feet, arms and legs.
Wrinkling skin, and increased prominence of veins/muscles.

If we can clearly identify 20-30 of us, I am going to raise money to do a thorough study to search for a pathogen.

If you have these symptoms, please respond here. If you know of someone with these symptoms, please refer them to this thread.

Please also indicate whether your illness is contagious.

Thank you.
I'm trying to identify members of this community with the following symptoms following a flu-like "viral" onset:

Loss of subcutaneous fat in face, hands, feet, arms and legs.
Wrinkling skin, and increased prominence of veins/muscles.

If we can clearly identify 20-30 of us, I am going to raise money to do a thorough study to search for a pathogen.

If you have these symptoms, please respond here. If you know of someone with these symptoms, please refer them to this thread.

Please also indicate whether your illness is contagious.

Thank you.
Yes! I have this going on.

It happened in my hands and feet only whilst I was already unwell with ME/CFS, post pregnancy and got flu back in 1999. No one got to the bottom of it back then. My health kind of returned with relapses if I got an infection but with no atrophy.

5 years ago I went through the hormonal change/menopause, was already unwell and I caught flu again. It happened again symmetrically again to the sides of my neck to my jaw. I had shooting burning pains in this area and the change occurred after this. Focal muscle atrophy was diagnosed with an unknown cause.

I became unwell again in February, relapsed got another infection, was put on Cephalexin antibiotic and it happened again, symmetrically to my forearms. Another infection a few months ago caused it to happen again to my upper back. I saw a neurologist who confirmed it was lipoatrophy.

I have been referred to an endocrinology team in December who see patients with Lipodystrophy. I will keep you all posted.
 
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Yes! I have this going on.

It happened in my hands and feet only whilst I was already unwell with ME/CFS, post pregnancy and got flu back in 1999. No one got to the bottom of it back then. My health kind of returned with relapses if I got an infection but with no atrophy.

5 years ago I went through the hormonal change/menopause, was already unwell and I caught flu again. It happened again symmetrically again to the sides of my neck to my jaw. I had shooting burning pains in this area and the change occurred after this. Focal muscle atrophy was diagnosed with an unknown cause.

I became unwell again in February, relapsed got another infection, was put on Cephalexin antibiotic and it happened again, symmetrically to my forearms. Another infection a few months ago caused it to happen again to my upper back. I saw a neurologist who confirmed it was lipoatrophy.

I have been referred to an endocrinology team in December who see patients with Lipodystrophy. I will keep you all posted.
Are you saying that your face and hands wasted and then the fat came back?

So far no one in this thread has what I have.
 

Tammy

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I'm trying to identify members of this community with the following symptoms following a flu-like "viral" onset:

Loss of subcutaneous fat in face, hands, feet, arms and legs.
Wrinkling skin, and increased prominence of veins/muscles.
Yes.................I have those symptoms. These symptoms came on after I got the EBV.
 

Tammy

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How long have you had these symptoms? Did you end up losing all of your fat? And did you develop Type 2 diabetes?
I have had those symptoms for 20 plus years. When I was severe, I had the most wasting..........loss of fat. While I still have loss of what I'm assuming to be subcutaneous fat..........it is not as bad as when I was severe where the sunken in look was most pronounced. It feels like there isn't any protection/padding between my skin and bones. Out of the symptoms you mentioned.........the one that has improved is protruding veins.

No I did not develope Type 2 diabetes. Curious why you asked this?
 
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I have had those symptoms for 20 plus years. When I was severe, I had the most wasting..........loss of fat. While I still have loss of what I'm assuming to be subcutaneous fat..........it is not as bad as when I was severe where the sunken in look was most pronounced. It feels like there isn't any protection/padding between my skin and bones. Out of the symptoms you mentioned.........the one that has improved is protruding veins.

No I did not develope Type 2 diabetes. Curious why you asked this?
So you gained fat back? Have you done any treatment that you think might have caused this improvement?

I asked about diabetes because I think this might be Acquired Generalized Lipodystrophy. AGL results in total loss of fat, which causes Type 2 diabetes due to a lack of Leptin.
 
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Good thread @@Uknmy

I developed all the skin/muscle/fat/neuro symptoms about three years, 2 months after I developed gastro-intestinal issues, e.g., intense postprandial pain, feeling full after a few bites, nausea, etc. Very likely caused by a stomach bug or viral infection targeting my GI tract I believe.

Some of the symptoms dissolved and were only active during early onset, other dissolved completely or are intermittent, and some other are progressing (slowly) or have remained the same.

Here's some of the symptoms I have/had:

Muscle wasting, pheriphal neuropathy, loss of subcutaneous fat, stretchy skin, fissured and white tongue, flaky skin, thinning hair, wrinkling hands/feet, increased prominence of veins in hands and feet, fragile skin, slow wound healing, gum recession, ridged nails, mouth blisters, etc.

I did manage to gain back some weight but mostly around my abdomen. Work-out is counterproductive for muscle wasting.

Curious to find out if someone has been able to treat/control symptoms, using supplements and/or diet/lifestyle changes?
 
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Those are all the same symptoms I've had.

Weird question - did you have any anal itching? I'm starting to think more and more that this is caused by an intestinal parasite.
 
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Those are all the same symptoms I've had.
Have you been able to treat (some of) the symptoms?

Weird question - did you have any anal itching? I'm starting to think more and more that this is caused by an intestinal parasite.
I have this horrendous itch all over my body every now and then, including in that area, so yes. What makes you believe it could be an intestinal parasite?

A few days ago I read this story from a patient with similar symptoms, infected with Blastocystis hominis and D.fragilis. Took her ages to get some help and treatment, since these particular parasites don't cause symptoms in a majority of people.

You can check out her story here: https://www.badbugs.org/MyStory.htm
 
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Have you been able to treat (some of) the symptoms?



I have this horrendous itch all over my body every now and then, including in that area, so yes. What makes you believe it could be an intestinal parasite?

A few days ago I read this story from a patient with similar symptoms, infected with Blastocystis hominis and D.fragilis. Took her ages to get some help and treatment, since these particular parasites don't cause symptoms in a majority of people.

You can check out her story here: https://www.badbugs.org/MyStory.htm
That site is part of the reason why I think it could be a gut parasite. Also, I took metronidazole a couple of years ago and the symptoms went away for a few hours, then got worse - this same thing is reported on badbugs.

I also had an extreme rumbling stomach early on for weeks, which can be an indication of a parasite.
 
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That site is part of the reason why I think it could be a gut parasite. Also, I took metronidazole a couple of years ago and the symptoms went away for a few hours, then got worse - this same thing is reported on badbugs.

I also had an extreme rumbling stomach early on for weeks, which can be an indication of a parasite.
Yes, could be, but to find out I suggest you do a test or 2. I've already been tested in the past on parasites, so I guess in my case another pathogen is causing my symptoms.
 
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Yes, could be, but to find out I suggest you do a test or 2. I've already been tested in the past on parasites, so I guess in my case another pathogen is causing my symptoms.
Have you been tested by PCR? This page: https://www.badbugs.org/Blasto_diagnosing.htm explains that the standard testing where they look for ova via microscopy is inaccurate and usually requires testing three separate times to get a positive result.

PCR testing sounds like it is much more accurate. I am going to have this done and I recommend you try this as well.