Can you FEEL it starting? (besides seeing it?)

[allopathicholistic]

OK, somewhat strange question for those with lipo. .... When it was in the early stages for you, could you also "feel" it? e.g. tigher muscles/tissues/tendons? 

[pozniceguy]

Nope ...It sort of sneaks up on you..no particular feelings except a greater sensitivity in certain areas of your skin where you find that little" bumps" ( when you bump into something )  seem to hurt more than they should, and increased sensitivity to heat/cold...all of which happens very gradually .......then you start to notice how many creases /hollow spots there are when you shave...then comes the realization that Abraham Lincoln is staring you in the face one morning......OW..when did that happen ?
Fo the most part the pain is psychological ...people ask if you are sick???  they give you funny looks or avoid looking at you and now you know there is a problem that needs to be dealt with...of course you could take some action before you get to cat 5 ..several people have done that with various methods...

[GSOgymrat]

When lipo becomes more advanced it becomes uncomfortable to sit on hard surfaces for long periods of time because you have no fat cushion. I think I'm more sensitive to cold because I don't have the fat insulation that other people do. And don't even think about trying to float on your back in a swimming pool!

[newt]

tighter muscles/tissues/tendons is prob lactic acid related.

Lipo can be measured before it's seen, both fat loss and fat gain.  The defining feature of lipodystrophy non-fat loss kind is redistribution of fat around the abdominal organs (generally stolen from limbs) inside the abdomen, plus one or two other features like sometimes shoulder accumulation.  If it's on the outside of your abs it's, well, putting on weight (for whatever reason).  HIV fucks yr fat metabolism.  The most common presentation of lipo is probably changes to blood fats. 

I am posting this link cos it's, to my mind, the best overview of all aspects of lipo I have seen, fat loss, fat gain/redistribution, lipids, risk of diabetes: i-Base pages on lipo

- matt

[Miss Philicia]

The first thing for me was noticing I was uncomfortable walking barefoot.  There's a layer of fat on the bottom of the feet so that's where I lost anything first.  A year later my butt disappeared and my face began to lose fat.  I can second the hard chair issue -- I actually got huge bruise marks on my ass cheeks and had no clue why at the time (8 years ago).  As I'd had a baby face with a bit of fat I welcomed my new face at first as I actually looked better with more prominent cheek bones, but unfortunately I kept losing more and more to where it no longer looked good.  That part all happened over a two year period, as my passport picture in '98 looks really good but pictures in '00 looked decidedly unhealthy.  Then in '00 I had my first major weight loss that you could really register on a scale... probably lost 15 pounds in a few months, not helped by getting a lung infection.  Went on testosterone treatment and gained it back within a year or less but then lost even more in '02, sinking from 170lbs to 140lbs.  Now I've gained it all back again and kept it at the 170 target for a good four years, but in the last 6 months have gone in the reverse direction and gained 15 lbs OVER my normal 170 and it's all buried in my gut.  Can't pinch an inch on the sides either, it's all under my abdomen and I now look 4 months pregnant.

[Gary85741]

in part:
When lipo becomes more advanced it becomes uncomfortable to sit on hard surfaces for long periods of time...I'm more sensitive to cold because I don't have the fat insulation that other people do...

Same here.  The cold would really get to me...sometimes I'd start shaking...couldn't seem to get warm.  Once when I went to the doctor during wintertime...my temperature was down to 95.

I've had the lipoatrophy since '98/'99.  Moreso than having it per se...it's people's reactions (poz gay men to be exact) that gets to me. 

I plan to at least look into Sculptra and have a dermatology consultation...see if they think it will help me and what the cost estimate is.  I really get tired of having this issue...though I try to accept I may have to always live with it.

Gary

[bobino]

I guess I'll be the odd man out here, because I actually think I could feel the fat loss occurring.  Perhaps it was simply the increased sensation of cold in my face due to the loss of fat, but I definitely had sensation in my face during the period in which it seemed to be progressing most rapidly.  I've also had all of the other issues noted in previous posts -- increased sensitivity to cold, discomfort from sitting on hard surfaces, increased pain when I hit my hands against something, etc.  And of course there's the increasing amount of fat stored in my abdomen. 

My lipo seems to have begun very soon after my infection.  I have only been positive for about 2.5 years, and I became conscious of my lipo about a year ago.  Thinking back, I realize that there were signs of it before that, but I'd simply failed to recognize them.  In my case, the lipo is not due either to medication (because I'm not on any) or abnormal lipid issues.  My lipid panel is completely normal.  So I think that in my case the lipo is due to mitochondrial toxicity.

The upshot seems to be that lipo has any number of both causes and effects.  Some people get it from HAART, and it may improve when they switch meds.  Some, like me, get it simply from HIV itself.  And some HIVers don't suffer from it at all.  Very little is known about the whole process.

One thing I will say is that the initial signs of lipo can be quite subtle.  You may be the only one to notice the changes for quite a while.  And if you're like me, you may have difficulty convincing your doctor that it's happening.  My doctor continues to refer to my "perceived fat loss," which drives me crazy.  Just remember that the research in this area has shown that patients are more likely to perceive the changes accurately than are doctors.  So if you think you're seeing fat loss, don't let your doctor talk you out of it!

John

[Miss Philicia]

Moreso than having it per se...it's people's reactions (poz gay men to be exact) that gets to me. 

Exactly.  Pretty appalling isn't it?

[Rusty]

I didnt feel it starting, it just seem to happen overnite when I was diagnosed with TB. I have still not recovered from it and basically my body is disgusting with stick thin legs and arms, I am so embarrased about the way I look and there is nothing I can do about it. Having fillers in my face in December but what about the rest.?

It probably is the worst side effect from the meds it is soul destroying.

Rusty

[bobino]

Rusty,

The only thing I do to keep my legs and arms from being stick thin is work out, assuming you are well enough to do so.  The muscle fills out the limbs so they don't look so bad. 

I agree with you about lipo being soul-destroying.  It really is, especially since no one really understands it, so you feel so helpless against it.  Also, since it doesn't appear to be life-threatening, doctors aren't overly concerned about it (at least not the ones I've seen).  People (including doctors) don't realize just how plain uncomfortable it is to have no fat padding.

Best of luck with the facial fillers.  At least they help with that aspect of the problem.

John

[yowsaa]

I can empathize with you all. I would guess my limbs are cat 4 and face cat 3. Even that has bothered the hell out of me. On most places I can stretch the skin out and fold it over, fuckin gross. AZT in combivir was my culprit. Was showing a steady weight loss at checkups and triglicerides and shit were going wonky, so they checked if I was turning diabetic. Nope.

After much complaing of what the hell is going on, doc made a comment about maybe lipo. I came home, did a lot of reading, learned what was going on, called him back and said get me off that AZT now. Three mths later, after my butt cheeks caved, I switched.

My experience if it helps anyone:
~3.5 yrs combovir was no probs
~1.5 yrs of slow lipo progression till I knew
bloodwork stuff when lipo started was going wonky
arms/lower legs were appearing veiny
feel it happening.. no dont think so
see it.. yes, but was very very slow, so did not really think about it (big mistake lol)

The good news I guess is after 10 mths of med switch I have noticed a slight, slight improvement. To the point where I hope to be able to wear shorts next summer and not feel like a freak.

[Rusty]

What can I start to do to build up my muscles again, my arms and legs feel very weak still. Is running any good to build up fitness or just heavy weights. I do love swimming but that is totally out of the question looking like this.

I really do want to sort this out I am not lazy I used to look pretty good until the TB tried to kill me if feels like I am banging my head up a brick wall.

Rusty

[frenchpat]

Rusty,

here's my two cents:

If your legs and arms feel weak you  could start by slowly working up your overall fitness. Running will do that for your legs but your arms will be left out. I think one of the best exercises you could do, besides swimming, is rowing.
Find a gym that has good rowing machines like the Concept 2. Or buy one if you can, they are worth it and cost no more than two year's gym fees. 
The nice thing with rowing is that you set the resistance and you set the pace. There is no minimum and the rowing exercise is one of the most complete you can do, working most muscle groups and building up your stamina, making your lungs and heart work.

You don't want to to too much rowing as, like any endurance exercise, it will tend to use your fatty reserves as fuel when you go past the 20 minutes barrier. So Keep your rowing sessions at 20 minutes max.

Once you feel stronger, go for weight training, and keep doing a little rowing, as warmup before the weights.

That's the way I've managed so far to keep healthy looking arms and legs. The butt is muscular but unfortunatly we don't have muscles right underneath the sitting bones so still uncomfortable and not as bubbly as it once was. Well, I guess age would have had the same effects over time

hope this helps,

Pat

[bobino]

Rusty,

I'd second what Pat has to say, and I'd add that you need to be careful about things like running.  Running will burn a lot of calories, and this will tend to use up whatever stored fat you may have.  Weight training will add muscular mass and will make your arms and legs look larger and fuller.  If you feel weak right now, just start with very light weights and work your way up. 

Anyone can see benefits from weight training.  My parents are in their mid-70s, and they've both gained muscle mass by going to the gym.  My advice is that you start with the resistance machines at the gym.  Once you feel a bit stronger, move on to free weights and gradually work your way up as your strength increases.  You can do exercises for all the muscle groups in your arms and legs, and I think that if you are consistent, you will see results in a few months.

I've been working out for about 20 years, so I have a little experience with it.  PM me if you feel like you need additional pointers.  I'll tell you whatever I know, for what it's worth.

Best of luck to you. 

John