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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

Senior Member
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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

Senior Member
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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

Senior Member
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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

Senior Member
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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.
 

pattismith

Senior Member
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Fat is under the control of adrenergic receptors, so the fat loss maybe the result of altered signaling by antibodies?