I experienced generalized fat loss very recently. About 9 years ago I was diagnosed with CFS. After a few years it got better, although I never fully recovered. February-March this year everything got worse. A few weeks after a streptococcus infection which was treated with antibiotics for 10 days, I suddenly got joint pains and cracking and severe subcutaneous fat loss throughout my entire body, from face to feet soles. I lost 10 pounds in weight, but put them back on. The fat loss however stayed. There seems to be a fat redistribution as well (more fat in breasts and abdomen which I really notice since I am very slim).
The doctor only found elevated ASO titers at 800, some vitamin D deficiency but not too bad, slightly elevated uric acid and rather high glucose level (this might be connected to the fat loss, I never got that problem before; suddenly I am in a pre-diabetic state). No sign of any auto immune diseases, lyme infection,.... I am very concerned by this, my appearance is changing completely and my joints continue cracking. The only thing we can think of now is Lawrence-Seip syndrome, a rare condition of acquired generalized lipodystrophy.
Hey @undiagnosed, I do have joint problems. If anyone else has any input or personal updates I'd love to hear it. My story...
Maybe not relevant but since weight changes have been talked about, here is a background history--I was a super healthy lean guy at 21yrs old (~2008), 6'0'', 155lbs. I always was an athlete and felt weak compared to peers so at 21 I started working out hard, and eating a ton. I gained ~18lbs and was hovering 173lbs, and felt great about my new stronger body. I then went to study abroad in 2009 to Italy and just couldn't keep the weight on, came back at ~163lbs. I hovered around this weight for the next 4 years, but felt like I was still in great shape. Every summer I'd escape NYC and go upstate to the countryside mountain biking, lake hopping, running, etc. Around age 26 (2013), I started having joint pains which I chalked up to old sporting injuries and super flat feet. I also started experiencing erectile dysfunction and noticed I started going to the bathroom more often. The ED was very weird because I stopped having nocturnal erections all together. So at this point, I felt like a very healthy guy with some urology issues, an upset stomach (but only really in mornings), and some aches and pains.
I continued with my life--traveled a lot--went to Brazil, Argentina, Germany, Egypt, Iceland..all over... but then things started to get a lot worse. The summer of 2015, my penis started to feel 'extra squishy,' I had a few days of air hunger, I started waking up to drenching sweats (and I am a guy who hardly sweats at all). In October 2015 I get a very bad viral infection, thick green mucous. I'm preparing for my next trip abroad, and don't want to be sick, so I take an 8 day course of Amoxicillin. Things seem to resolve for the next 2 weeks, I go on my vacation, but on the last day, something terrible happens....
I wake up, veins are bulging in my extremities (hands/feet) and are on fire. My heart is racing. My weakness is debilitating. I feel faint. I go to the airport medical station and have an EKG because I feel like I'm having a stroke. Somehow I get through the flight, and the nightmare is just beginning. I go through 6 months of burning extremities non stop, terrible fatigue, rapid heartbeat, disturbed sleep every 2 hrs, my hands go freezing cold randomly, I have trouble swallowing, I'm burping uncontrollably. After seeing 10 NYC doctors to no avail, all they can say is low WBC, low platelet, low vit D, "it seems like your autonomic nervous system got derailed, give it time." I do a Lyme test but only have 2 bands (not 5+). I do the 1 month of doxycycline to play it safe. No effect. I continue on. Few months later I go back and try another round, Amoxicillin, for 36 days. I have 4 great days on it, and I think I cracked the code, but then the next 2 weeks things get TERRIBLE. My scalp starts burning, my hair is falling out, peripheral neuropathy and fasciculations. This entire time my bowel movements are terrible, just poorly digested food 3x a day. I stop the antibiotics fearing that all the conventional doctors were right when they warned me not to go the Lyme route.
More time passes, some things actually get better. I start swallowing normally. The random rapid heartbeats stop. My nailfolds are no longer inflamed (although the nails themselves are now ridged). I start sleeping again. But... just as you'd think I might be improving, the bed-ridden fatigue is back. I start overheating and realize I'm not sweating. This is confirmed by a neurologist after performing a Sweat Test and a Nerve Fiber Biopsy showing "damaged glands consistent with small fiber neuropathy.
Winter rolls around and my fingertips are going white, but not like raynauds....like very cold and white at the very tips. They continue to change and start wrinkling. I realize I'm losing tissue in my fingerpads. They begin to hurt. Another couple months go by, I wake up one night and different muscle groups are cold (ie, my left buttocks, my right calf muscle, etc) and I'm having crawling sensations all over my body. I get out of bed the next day, blood flow to my feet is poor (they are freezing) and I feel like I'm walking on bones. Then I sit down at the kitchen table--it feels like the padding in my butt is gone. I go to grab the door handle to leave my apartment and my hand hurts. I immediately start emailing doctors--I started losing tissue (what seems mostly like a layer of subcutaneous fat, but also possibly muscle/connective tissue). Of course this sounds impossible, but it is true. Every doctor I see has no idea. This last month my palms have been killing me and there are lines forming between my thumb and pointer finger. From what I've read some people have thenar atrophy while experiencing this tissue loss.
I am an analyst by nature and this disease has me stumped. I am falling back on the possibility of lyme (partly out of desperation and symptoms at onset, and partly by location and lifestyle), but for sure have tons of anxiety as there is no real proof and everyone knows what antibiotics can do to an already impaired gut. I paid up for the IGENEX test which shows just 3 Intermediate Bands (31,34,39). I've sought out a different lyme doctor than I originally saw, and now I'm rotating multiple antibiotics and supplements. I'm only 30 days in, but haven't experienced the dreaded "herx" yet. Figure I'll give it 3 months to see if any improvement. Will definitely let people know if I find any success.
Still, I can't help but read everyone's comments and wonder--is this triggered by a virus? Is it triggered by antibiotics? Could antibiotics have awoken a dormant virus? Is it a metabolic problem? There is definitely something catabolic occurring. Could the root be hormonal?--ED was my first major symptom, even before falling ill. I've also talked to a woman who started getting the wrinkled fingertips and fat loss after pregnancy. I've already exhausted 3 different rheumatologists, who basically fell on a very not confident--undifferentiated connective tissue disorder.
I will just stop there. Any insight or similarities you hear with my story would be helpful. I feel if we can focus on symptoms everyone has, we would be able to narrow things down--ie, do others have peripheral neuropathy, gut problems, erectile issues, lack of sweating, etc etc. I eat very healthy and have tried all the gluten/dairy free diets, as well as all the holistic options--acupuncture, herbs, etc and have yet to find an answer.
@znieh87 Hi there, just thought I would quickly mention my story here; I had something like an adrenal burnout after 2 years of intense work and a few weeks away in Spain, then two years of insomnia and unexplained anxiety, when I was at my lowest I then caught what I thought was a common cold from a friend. I started experiencing what I can only describe as reactive arthritis, this joint pain and cracking migrated to my muscles but my joints still crack and now my muscles do too. I have managed to curtail the fibromyalgia that I was experiencing but now I am fatigued and have conventional ME/CFS.
I have been to a few NHS UK ME CFS groups and talking to the other patients I have realised my symptoms are quite different and have experienced different things like hair loss and peripheral Neuropathy.
I too had Amoxycillin about two years ago whilst stressed, it was for a dental operation and a rotting tooth....
I know this is an old thread but wanted to say that I have experienced all of these symptoms, right down to the wrinkled finger tips. In February of 2017 I suddenly developed severe burning pain, severe cognitive issues that continue to get worse, and the same fat loss as others have described. But it’s more than fat loss. My muscles have atrophied and it also feels like some other connective tissue that holds my body together has gone. Some areas of fat loss seem to be replaced by some weird tissue, almost like a spongy material.
I have similar symptoms as @bart32 including subcutaneous fat loss, joint cracking, and muscle atrophy. I haven't had my glucose level checked recently so I can't say if there is a similarity there. My suspicion for myself is catabolic wasting being driven by an underlying disease.
For some background, Figure 1 shows my weight and BMI over roughly the last 5 years. In late 2011, early 2012 I started working out and eating a lot and put on 15-20 lbs. I slowed down with the working out mid 2012 and eventually stopped altogether. Over the summer of 2015 I got a few comments about being skinny from people who know me. In September 2015 I started noticing my joints cracking a lot. This corresponds with the low dip in weight in 2015 in Figure 1. My knees have been the worst. I've noticed weakness in my legs in general. They get shaky after standing for extended periods of time. I also notice if I get to that point, my legs hurt more in the following days or weeks. It's not muscle pain though, it's like the tendons behind the knees constantly ache. A rheumatologist said my knee caps were very loose which indicates thigh muscle weakness and contributes to the cracking. She recommended physical therapy exercises. It's just odd that they would be getting so bad when my routine hasn't really changed over the last few years. It's also hard to say how much of the weight I lost was just due to no longer working out and a lower appetite versus a malignant catabolic process.
Figure 1. Weight
Regarding fat loss, I seem to be losing it from basically everywhere. The most troublesome is the bottom of my feet. The rheumatologist examined my feet and said the fat pads were very thin. I started noticing this in October 2015. I can no longer walk around on hard floors without some kind of footwear as it's too painful. So now I wear flip flops all the time when I'm inside but the problem remains. My face has also lost fat which is noticeable around my eye sockets and cheeks. The pressure from a pillow can be a bit uncomfortable when I'm laying down on my side due to the reduced padding on my cheek bones. Similarly, my butt and the underside of my thighs get sore from sitting in a chair. I have to avoid hard chairs as they are now very uncomfortable. I also have some pain grabbing things with my hands like door knobs and have to be careful. Since December 2015 I've noticed deep wrinkles in my fingertips on and off as shown in Figure 2.
Figure 2. Fingertips
They seem to be most prominent after holding something like a phone or steering wheel. They are distinct from the wrinkles caused from being submerged in water. I'm wondering if they're also a sign of fat loss in the finger tips. Anyone else have similar issues?
I know this is an old post but this is exactly what I have experienced since 2017 right down to the wrinkled finger tips and loose knee caps. It feels like my body is definitely in a catabolic state. I have seen Dr. Garg in Texas who is a world leader in lipodystrophy who said I didn’t have it. The lipids doctor at UCSF says I definitely do have it but I am a very complex presentation. Were you ever able to figure out what is going on?
Dear Lou, Adreno and Sherlock, Thanks very much for your reply and appreciated insights. I can use all support in this extremely upsetting condition. We sure get some very strange things indeed Lou, but I have to say I never heard of this before.
I will definitely ask to check copper and hormonal values. Don't really feel like high testosterone, on the contrary even, but will let it check too.
Cushings seems unlikely. Like Sherlock says the symptoms don't really match (no gain in face etc).
Tomorrow I know the test result of the boil. Although strep is usually cleared, I thought it might stay if the immune system is already weak. I do not feel very enthousiastic to start antibiotic treatment now but will see what my doc says tom.
Most info on lipodystrophy is HIV related, which is excluded since I am HIV negative. Also genetic reasons seem unlikely. Acquired generalized lipodystrophy can be due to previous auto immune causes like Sjogren, which were not found (but maybe my cvs condition creates a similar vulnerability). The majority is idiopathic, ie for unknown reasons. For those of you interested: see also http://www.lipodystrophyunited.org/about-lipodystrophy.html and https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/460/viewAbstract
There might be some influence of the thyroid as well. My TSH was rather high.
I thought the cracking joints might be related to the loss of fat.
Don't really know if I am also losing muscle tissue, they will have to do some tests and scans to check the fat changes, muscles etc
All of this seems very strange and rare indeed... I started reading about diabetes diet since I am suddenly in prediabetic state
I have had many of the symptoms that have been mentioned here. Subcutaneous fat loss. It's like there is no "filling" or substance between my skin and bones. (like a deflated balloon). Feels as though every muscle, tendon, ligament and so on lost it's plumpness and fluids. Connective tissue problems. Myelin sheath loss (as evidenced by lab tests as well as symptoms). Crete paper skin, wrinkled finger tips, etc. etc. Cracking joints. I was diagnosed with CFS from the EBV back in 97................so I do believe for myself that this virus caused these symptoms. I would love to know the how behind it. Although I feel better after being on an anti-viral program, most of these particular symptoms remain (except for cracking joints).