POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: aztecan on January 11, 2008, 04:55:23 pm
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I was at the dentist today and discovered another reason lipohypertrophy is a tad inconvenient.
Its hard to lean back in the dentists chair when you have a hump.
This is yet another lipo issue, along with being unable to find shirts that fit (collars aren't large enough), can't wear ties any longer - ::) hmmm, that may be a plus - and find it actually hurts to rub the hump too much.
Of course, lipoatrophy is a pain in the butt, literally. I don't know who designed park benches and other seats with slats and wide openings, but they deserve a week on the rack. Nothing like having a hip bone slip through one of those slats because you don't have enough butt to prevent it. And then there are those hard chairs that cut off circulation for those of us with little fat in the legs.
OK, that's my lipo rant for the time being.
HUGS,
Mark
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My hump is covering my tailbone, I guess I need it there, huh? My "lower" ass is flat as a board, and yes, I hate those benches, too! However, the "top" of my ass (because there IS a difference!) has a little hump starting.
It had better not cover up my dimples. >:(
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Finding clothes that fit is impossible. Everything we buy has to be taken in and adjusted. They don't make padded undies small enough, either.
About the lypo hump. Does it start out small and then get bigger as time goes on. Or, is it one of those things you don't notice and then one day BOOM there it is? Do they occur on the base of the neck where the neck meets the upper shoulders?
Thanks,
Mum
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You quit trying to hold your stomach in no matter who walks into the room.
Mike M
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I've somehow avoided the humps, but I have all of the other concaved lipo issues. It's such a weird phenomena, isn't it?
And I totally second those park benches. Try riding subway cars every day for your commute with lipo. Yes, the easy solution is to just stand and not sit, but with HIV fatigue issues you really want to sit when possible.
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How about trying to open screw-cap bottles or new jars? I can barely open anything anymore because everything cuts right into the muscles and tendons in my hands. And not to mention how any little shock to my hands or elbows REALLY hurts.
Then there's my personal favorite: no fat pad on the bottoms of my feet. Not only does it hurt to walk or stand for any prolonged period, I've also become really unsteady. I guess the fat pad was a kind of stabilizer.
It's enough to drive you to drink . . .
John
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Oh, the foot padding was the first place I got lipo back in 1997 or so. I now have to regularly attack massive callouses on the bottom of my feet, and if I don't keep it controlled walking for long periods of time can be rather uncomfortable, even in a pair of sneakers.
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Oh, the foot padding was the first place I got lipo back in 1997 or so. I now have to regularly attack massive callouses on the bottom of my feet, and if I don't keep it controlled walking for long periods of time can be rather uncomfortable, even in a pair of sneakers.
Hey Philly,
For the longest time I didn't connect the loss of foot padding and lipoatrophy. I also get the callouses and find walking uncomfortable if I am not diligent in my foot care.
That, coupled with the PN, makes it a joy at times, but at least I'm still walking.
HUGS,
Mark
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Hey Philly,
For the longest time I didn't connect the loss of foot padding and lipoatrophy. I also get the callouses and find walking uncomfortable if I am not diligent in my foot care.
I think I noticed it easily at the time because I lived in a circa-1880 row house with hard wood floors, and I always was barefoot when at home. Suddenly I found myself having to wear socks all the time, which I still do to this day even though I currently have carpeting. The lipo got so bad that I even had to upgrade from socks to flip flops in the house.
I'm also convinced that I have periodic foot swelling, though slight, from neuropathy. Hasn't someone on here mentioned this?
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Here's another thing -- shaving. Now that I have lipo, it takes me much longer to shave. Somehow the hairs just don't stand up like they used to. So I spend lots and lots of time pulling the skin this way and that, trying to make sure I get it all.
It also hurts to brush my hair because my scalp is so thin. Fortunately, since I'm going bald, this isn't that big of a problem.
Sheesh . . . now where's that drink I was talking about . . . ?
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Oh totally... that's why I haven't actually shaved in about six years. I just trim it down to a 5 o'clock stubble. I'm contemplating my first shave in eons to renew my passport.
I actually bought my first 3-blade razor last week. The last time I totally shaved my face we were still on the double blade razors.
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And on this wasted feet topic, just wanted to ask whether does anyone else has balance problems because of lipo? I could swear that I'm less steady on my feet now.
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hmmm... I have balance issues sometimes but I chalk it up to neurontin.
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Mini has some pretty bad balance issues. Some days she can't walk 5 steps without falling. We chalked it up to her CP, but I'm now wondering if it has to do with her neuropathy. We did find that putting her in really "good" arch-supportive tennis shoes has helped. And, we make sure her church shoes buckle or snap and aren't just slip-ons. We also quit letting her wear sandals because her ankle always seemed to get twisted when she was walking - like her heel would slide to the side - and she would fall. Flip-flops are totally out. She also has problems getting up from the floor from sitting (on a pillow), squatting, kneeling, as well as getting down.
mum
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Mini .. I had the same problem with instability still do but managed to help a huge amount by trying many different pairs of athletic/tennis shoes......found that certain brands and styles were far superior Sketchers with firm insoles and very wide outer sole are the best most of the stores sell them and they are reasonably priced...
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I have the Lipo also it is unhandy. any one had lipo build up in the groin where it starts to cover your penis? I've had the Buffalo Hump removed by liposuction 2X and it is growing back after 1+ years from last suction. The hard areas behind ears and No fat on Ass is difficult.
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Hey Sadman,
The fat in the lower abdomen above the penis has been the topic of some discussion. Here is a link to one of the more recent ones.
http://forums.poz.com/index.php?topic=4031.0
I thought about having the hump removed, but then decided against it. I don't have the money anyway.
Hey Mum,
I was going to answer this earlier and it slipped my mind. The hump usually appears at the top of the spine, between and somewhat above the shoulder blades. Mine also has grown to include lumps behind my ears and at the base of the skull.
I didn't notice it until early 2007, but I have a feeling it may have started a bit earlier.
But it does come on quickly.
HUGS,
Mark
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Thanks for the link. Interesting events with Lipoatrophy. I am glad i'm not the only person with the enlarged pubic areas. Though I'm sorry anyone has to deal with the uncomfortable Lipo deposits. Another thing to deal with as a long term survivor.
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And on this wasted feet topic, just wanted to ask whether does anyone else has balance problems because of lipo? I could swear that I'm less steady on my feet now.
OMG, yes!!!!!!!! I don't know what to blame it on. I am also an insulin-dependent diabetic, have been since '81, so the doc thinks its diabetic neuropathy. They did a nerve conduction test on me last week and it was normal. I also have an injured neck and keep blaming my balance problems on that, but you have shed some light tonight. I tend to shuffle along, its been getting very bad, where I won't wear heels anymore. I always hold a handrail going downstairs. I had blood drawn yesterday to test for nerve problems, but maybe its the dreaded lipo. :(
I feel like I'm standing on a rowboat bobbing on the water sometimes.
And they thought it was the blond hair.
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Hey Moonlight,
Don't know about you, but I get wobbly when I'm barefoot. It helps if I'm wearing good, supportive shoes. Couldn't imagine what heels would be like!
Of course, I also take trazodone, which can cause balance problems, but I've taken that for years and it's never been a problem before. So I prefer to blame lipo.
John
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Oh, here's another one. Lipo is unhandy on my scalp -- anyone else? At times, and depending on which pair, wearing sunglasses can give me headaches because there are areas of my head which have so little left of any layer of fat. You'd not think about this much normally, but I guess there's a thin layer of fat that goes over the ole noggin'.
Also, during my worst lipo periods, and because I've shaved my head for 15 years, when I'd lean over you'd see the nastiest large veins stick out.
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Mark, didn't you make a med switch to combat the lipo? I take it it didn't help?
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I just hate being asked when my baby is due....and I don't hold the stomach in anymore either.
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Mark, didn't you make a med switch to combat the lipo? I take it it didn't help?
Nope, no change. (((sigh)))
Had I known, I would never have switched. What a pain in the ass that was.
HUGS,
Mark
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I start a new job Monday. I wonder what THAT desk chair will be like. My stadium seat and a winter coat layered on my last office chair still didn't help! Ouch. :(
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Moonlight congrats on the new job... just be sure to buy yourself one of those "donut pillows" they sell at WalMart ....if anyone dares to ask just say you have "skinny butt syndrome" that will shut them up
Nick
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Oh, here's another one. Lipo is unhandy on my scalp -- anyone else? At times, and depending on which pair, wearing sunglasses can give me headaches because there are areas of my head which have so little left of any layer of fat. You'd not think about this much normally, but I guess there's a thin layer of fat that goes over the ole noggin'.
Actually, Philly, I wear glasses, but I don't have that particular problem (yet). What I do notice is that it hurts to brush my hair. It feels like the bristles of the brush are just scraping over my skull. Ouch. This is a minor inconvenience, though, largely because I have very, very little hair left anyway.
John
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Mini was prescribed glasses last summer. She complains about the ear pieces hurting her head. At first, I thought that she just needed to get used to wearing them. But, even after wearing them for a couple of months, she was still complaining. We've taken those things to be adjusted so much that the ear pieces are almost straight. Now reading this, it makes a ton of sense. I wonder if putting those padded ear piece covers on her glasses would help. It'll be worth a try.
Mum
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Yep Mum, it could very well be that. I don't have bad eyes so I only wear sunglasses, but if I had to wear prescription glasses there's no way... I'd have to get contacts. Sunglasses never caused me headaches before lipo. I still wear them when I have to, but if they didn't hurt I'd wear them almost year round, because I adore sunglasses.
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Went to the eye center today and got some silicone squishy covers for the ear pieces of Mini's glasses. She was able to wear her glasses for a couple of hours without them hurting. She has lumps behind her ears that would always get super red when she wore them, but after putting on the covers, they aren't red at all. Who knew? We got them for $1.58 for the pair from the Wal-mart eye center.
Mum
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Hi Mum,
Glad to hear that you found a simple solution to Mini's problem.
Believe it or not, I'm always thinking of you and your little girl. Hope HIV isn't preventing her from enjoying being a kid (at least not too much). One thing's for sure -- she's got a mom who loves her, and that makes all the difference in the world.
John
P.S. Here's a little kiss for Mini -- :-*
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I constantly have problems with my feet. I've had neuropathy since the early-middle 90's from mega-dosing of AZT. I'm always trying to scrape off the callouses, and even considered getting one of those 'callous razors' I've seen at the drug store. I hesitate to do that, though, because I have little feeling left. Too afraid I might razor off a layer of skin. I can be very unsteady on my feet also. I didn't know Neurontin could cause that. I take 800 mgs 3 x a day.
My feet and hands are always frigid. It's so much worse during these cold months. When I get up in the morning and am sitting sipping my coffee, I have on thick slippers, a heavy housecoat, and I cover up with a warm afghan.
I never try to pull my tummy in. I gave up on that years ago. Also gave up on the idea that sit-ups would do any good. And who can afford lipo living on SSDI. I don't think I would get that done anyway; I hear it's very inconvenient.
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geebus Miss Betty that's a lot of neurontin -- three times what I take, and take mine all at once at around midnight.
This will probably make folks cringe, but I routinely gather up my four calloused areas on the bottom of my feet and take a pair of scissors to them. Then I use a pumice stone to finish it off. What I really should do, and in fact used to when I was a more attentive person, was apply special creams to my feet and then sleep with socks on so as not to ruin my massive thread count sheets.
I also own a Homedics electronic Foot Spa which I just yanked out of my closet and perhaps this thread will inspire me to actually use.
If you really want to indulge, go to a mani/pedi place and get a paraffin treatment. I used to do it monthly, but then I was one of those fags that routinely sought out manicures before they even become popular for the metrosexual crowd. It's an indulgement I no longer can afford :(
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Yes, I do not know too many people who take quite as much Neurontin as I do. It used to be 900 mgs 3 x a day, but that was in 3 300 mg pills. When my doctor told me they have 1 800 mg pill I could take, of course I jumped at the chance. Lord knows how we are all overburdened pill-wise.
I haven't been to get my nails done in years. I can't afford it either. I would love to get nails with those little designs on them (what's that called). Oh, and I've taken toenail clippers to my callouses, but usually cut off a little too much, so I don't do it often.
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I was just wondering, has anyone else noticed the front of their necks getting larger? I know that hump on the back is lipo-associated, but what about the balooning front?
It is really more embarrassing than the hump because it wiggles when I shake my head. I think I'll change my name to Mr. Turkeyneck.
HUGS and WIGGLES,
Mark
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According to lipo expert Dr. Donald Kotler,
"about a third of HIV-infected patients on highly active antiretroviral therapy developed fat accumulation in the belly, and maybe 10% or 15 % develop a buffalo hump or a lot of fat around the back of the neck or even the front of the neck."
full text:
http://www.aidsmeds.com/articles/lipodystrophy_serostim_th9507_2021_12811.shtml (http://www.aidsmeds.com/articles/lipodystrophy_serostim_th9507_2021_12811.shtml)
Jacques
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my double chin has doubled in the last year - as well as by the ears - chipmunk look
but the hump on the back of my neck has remained steady since my liposuction 2 years ago
i guess it moved around to the front
the belly seems to get larger each day
the fat above the groin seems steady
and i don't think there is any fat left to loose on my butt
we should all take photos of this progression - doctors don't seem to think it is a problem - but it is to us :-\
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we should all take photos of this progression - doctors don't seem to think it is a problem - but it is to us :-\
Yeah, doctors seem to view lipo as an entirely cosmetic issue. They've obviously never tried to sit on a plastic chair with a wasted butt or had to walk around on feet that have no fat pad on the bottom.
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Hi everyone I have been on meds about a year and My doctors says not to worry about lipo it does not happen on the newer meds. i am trying to keep my muscles up so i may not gey it.
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Uh, going to the gym doesn't prevent anyone from getting lipo from your medications. If that were the case I'd not have any, because I was a total gym bunny before I got it.
But, of course, otherwise working out is good for your health.
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I just hate being asked when my baby is due....and I don't hold the stomach in anymore either.
Uggh isn't that the worst? Somewhere on this forum I posted a picture of my belly. LOL Not my best feature.
I could pass for 4 months pregnant for sure.
I'm sure its partially from being pregnant twice but I'm certain Crixivan had something to do with it.
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Hi-
i've been on meds about a year and a half now, and I've really noticed the fat loss in my face, especially around my eyes and at the temples. Yet I've actually gained weight overall. My waist is just as big - or bigger- than ever, but my thighs have lost some circumference. Which isn't necessarily a bad thing- they're still plenty hefty.
This is all minor compared to what many here are experiencing, but I don't think RWR's doctor is correct about lipo not being a problem for the newer meds.
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Well, chm02, it was mostly older drugs like d4t, 3tc etc that started causing all the nasty problems with lipo. However, the PIs of today have a tendency to do that as well. So, the doctor saying that none of today's meds cause lipo is, as you say, incorrect.
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Before i started meds had bumps all over my chest,arms and legs about the size of 50 cent piece 5 doctor did not know what is was. Found it on myhivlife.com under lipohypertrophy. Hope this helps someone as i have wonder for a long time what they were
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Ever one tells me how young i look cause of the loss in my face. I have had to buy 33 pants and need 34 as i get bigger in the belly. :o
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I guess when we talk about Lipo there is lipoatrophy which is weight loss and lipohypertrophy which is weight gain. one half of me is one and the other is the other
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Oh yea and the belly thing has happened in 2 months
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RWR. Sorry, but I'm confused. Just yesterday you claimed that you didn't have lipo
http://forums.poz.com/index.php?topic=18314.msg253986#msg253986
Other than that, NO, lipo (either atrophy or hypertrophy) need not mean a net gain or loss of baseline weight. Yes, it CAN do so, but it's not by any means an absolute. In another thread you made yesterday I explained in more depth why this is not always the case. You can lose weight in your face, butt cheeks and legs... but then if it all goes buried in your gut the weight scale can still register around the same number.
Basically lipo can manifest itself in quite a few different ways based on each patient, so it's not always useful to word things as an absolute.
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I am confused to doctor said no buffalo hump but am going up in pant size and my bumps all over my body are getting more and more noticeable oh well no swim suit this summer. i found the info myself about the bumps on myhivlife.com they are on my arms back chest legs and had them before meds
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I've never heard of this bumps issue, something you had pre-meds, having anything to do with lipo. Never a great idea to self-diagnose medical issues with one sole source from the internet, especially in regards to something as new as lipo issues from HIV meds.
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For the life of me I can not remember all the meds I have been on. I know at one point I was on (not necessarily together) Started in 93/94. epivir, videx, azt during birthing. Last regiman was Truvada, Norvir and Reyataz. I am now on Atripla.
For the last week the bottom of my feet have been really killing me half way through the day, but they don't tingle. I thought I read somewhere that someone had lost padding on thier feet, is this from lipo too? I am not seeing my doc until the end of next month to ask.
Thanks for any info.
Snow
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Hi Snowangel,
The post about the loss of padding in the feet might have been mine. Lipo has caused me to lose the fat pad on the soles of my feet, so now I have orthopedic inserts that I have to wear in my shoes. Walking barefoot is unpleasant. My feet don't tingle, either, they just hurt, and it's because I'm basically walking on bone and nerve endings.
And just to weigh in again on some of the earlier posts, I'd be very suspicious of any doctor who makes any guarantees about lipo. The truth is that doctors know next to nothing about this condition, and very little research is being done into it. It may be true that the newer meds generally cause less lipo than some of the older ones, but that's no guarantee in any individual case. And don't forget that you can get lipo even if you're not on meds. I've got it, and I have yet to swallow my first antiretroviral. The only thing certain about lipo is that your doctor (1) can't predict whether you'll get it, (2) doesn't know what causes it, and (3) can't treat you if you do get it. Any doctor who tells you differently is full of crap.
Sorry for the rant, but I really think doctors need to shut up about this condition until they have some grasp of what it is.
Just my $0.02.
John
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Thanks, Bobino. I guess I will be "gellin" soon :-\
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Agree with Bobino about those inserts. They saved my feet. I have had to give up my favorite way of relaxing --- no shoes--- in favor of carpeted rooms or wearing shoes on any hard floors. Ain't an easy thing to do for an Ozark boy, keeping them shoes on!
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Oh yes, the lipoatrophy of the feet. I know this very well, along with having PN. It's not very comfortable (at all). However, Neurontin is controlling the PN pretty well (900 mgs 3 x a day) and I haven't yet checked into the sole inserts for the shoes. I imagine that will be next.
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Gotta put in a plug for the inserts. They've made a huge difference for me. If you have insurance and your insurance will cover it, go to a podiatrist and get them professionally made. I was using gel inserts that I bought at a shoe store, and they certainly helped, but the orthotic inserts that I got from my podiatrist are ten times better. Can't recommend them enough.
John
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You quit trying to hold your stomach in no matter who walks into the room.
Mike M
LOL............Yeah, I found out that dosen't work (holding-in-your-stomach)..........I don't know how I manage to do 100 situps every-other-day
that dosen't seem to work either.............OH WELL...........like they used to say back in the 60"s "let it all hang out Baby"
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LOL............Yeah, I found out that dosen't work (holding-in-your-stomach).........."
I don't even try anymore. People who ask me all the time "when are you due," well, I just say "oh, is that what this is?" That ends that dialogue.
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I don't even try anymore. People who ask me all the time "when are you due," well, I just say "oh, is that what this is?" That ends that dialogue.
Oh thats a good one. I'm stealing it.
Now all I have to do is remember it.
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Well, I have had yet another person walk up and ask, "What's wrong with you neck?"
This was a member of my bowling team.
It isn't just the hump anymore, its the front of the neck It has ballooned to gargantuan proportions.
I told them I was trying to improve my chances of winning the "Mr. Turkeyneck" award.
Then, of course he mentioned the back of my head. My hump, which is pretty stable at the moment, wasn't the only area to grow.
I now have the "chipmunk effect." Big lumps behind my ears.
I thought about letting my hair grow out to cover them, but there isn't that much hair left on my head. I'd end up looking like Dilbert when he grew the ponytail.
Oh well, I may let the hair grow out anyway. It couldn't look any worse.
HUGS,
Mark
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That's what Mini has - the lumps behind her ears. She was fitted for her new glasses today and the lady was like, "What is that behind her ears?" Mini said, "It's just the lumps I got from my meds...it happens." Do your glasses irritate them? We have to buy silicone covers for her earpieces. They seem to help.
Mini has lipoatrophy. Her face is so thin that you can see her cheek bones, especially when she smiles. We always get comments about how "thin" her face is, what "long, lean" legs she has, and how "dainty" her arms are. I just thank them and move on. She's also starting to hurt more. *sigh*
Mum
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That's what Mini has - the lumps behind her ears. She was fitted for her new glasses today and the lady was like, "What is that behind her ears?" Mini said, "It's just the lumps I got from my meds...it happens." Do your glasses irritate them? We have to buy silicone covers for her earpieces. They seem to help.
Mini has lipoatrophy. Her face is so thin that you can see her cheek bones, especially when she smiles. We always get comments about how "thin" her face is, what "long, lean" legs she has, and how "dainty" her arms are. I just thank them and move on. She's also starting to hurt more. *sigh*
Mum
Just tell her to say, that they are............. "Beauty marks and only very special people like me get to have them" ;)