POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: capemann on October 08, 2007, 04:02:41 pm
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No,one talks about paint in there hands and feet and ankles. I can't be the only one out here.
Hands ache just from driving the car, resting on the steering wheel. Fat seems to be gone so everything
hurts now, cold and hot water. Blankets resting on my ankles, even my heels resting on a table and elbows on a table . HELP
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Capeman,
Do you have tingling and the "pins and needles" feeling on your legs and hands ass well?
It is common for some people to develop Peripheral Neuropathy as a result of medication side effects. I have been dealing with this for the past 5 years and there are treatment options to help this condition.
Check with your doctor and find out if this is the case for you.
take care
Rich
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mostlly pain from loss of fat around the bones and nerves
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Then we must be reading different forums Cape. These queers never shut up about their aching feets.
Try searching the forums using the term "peripheral neuropathy".
MtD
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Hey Cape,
I agree with Matty. PN sounds like a likely culprit. I've got some issues with it much like you describe. They were worse when I was first diagnosed after going through seroconversion. My previous doctor tried to blame it on the meds as a side effect, but I had problems prior to ever taking meds.
I don't have as severe a case as some people describe, but for a while it made it difficult to sleep and drove me up a wall. Now, the only time I have issues is if I've been walking a lot or doing a ton of yardwork etc.
I guess I should go see a neurologist, but I didn't really want to take any more drugs so I just sort of ignore it.
Wesley
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Hi Cape,
I know exactly what you're talking about. And I think you're right -- the loss of fat is the likely culprit. Not to disagree with the other posters, because you may have neuropathy, but what you're describing doesn't necessarily sound like it. For me, my lipoatrophy has progressed to the point that I no longer have a fat pad on the bottom of my feet. Because of that, I can't walk around barefoot. It's basically like walking on bone. I've got pads now in all of my shoes to compensate, but I will likely need to get orthotics, because now even the pads are not enough. And I can't rest my heels on a table, either. It's just too hard on the underlying bones.
I have the same problem in my hands and arms. Every accidental bump is painful, because there's simply no fat to absorb the shock. This is one of the things about lipo that people don't discuss a lot, but it's certainly a legitimate issue. Most people focus on facial lipoatrophy, which is horrible enough, but far less of a practical problem. (Your wasted face still functions; your wasted feet don't.)
My advice for the feet is to see a podiatrist. You may be able to get orthotics that will cushion your feet so that you can walk comfortably. This is important since walking on your wasted feet can cause nerve damage.
Not sure that my story is much comfort, but I just wanted you to know that you're not the only one out there.
John
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I also have had a bit of fat loss in the bottom of my feet. I can now no longer do vigorous runs on the treadmill like I used to. The bottom of my feet ache afterward, like someone was hitting them repeatedly with a paddle. I tried "gellin" pads in my shoes and that helped somewhat. I haven't noticed any other foot affects. Because I was a pretty regular runner, it makes sense I wouldn't need to lose too much fat before I would begin to feel it. I now use the stair climber regularly and can almost get the same aerobic benefit, but running did give me more of a endorphin high.
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capeman,
The problems you are having do not sound like peripheral neuropathy to me. I have PN, and it involves tingling and burning, and occasional electric shooting pains. You did not mention any of these sensations. What you describe sounds more like a simple loss of fatty tissue.
I have the same problem as you with my feet (less so with my hands). I no longer have any fat cushion on my feet, and this makes it painful to walk barefoot on hard surfaces. I put padded insoles in all my shoes, which helps some. I also have the problem that Bobino mentioned about every accidental bump being painful.
For me, the biggest problem with the loss of fat is my skinny butt. I cannot sit on a hard surface for more than a minute or two. I have to avoid restaurants that don't have cushioned chairs, or I sometimes carry around my own cushion. I tried padded underwear, but found them very uncomfortable.
I don't know why kind of blanket you have, but a down or a synthetic down comforter is fairly light and warm and may help with the problem of a blanket resting on your ankles.
I ascribe my loss of fat to years of AZT. Zerit (d4T) also produces lipoatrophy. I don't know of any solution to this problem. For most people, the lost fat does not return, even years after stopping the AZT or Zerit. This is one reason why I think people should avoid AZT or Combivir if they possibly can.
Allan
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Sounds like BOTH irritation from fat loss AND PN, so I agree with the details of both bobino and allanq, in a combined way.
Fat loss can effect one in odds way, in addition to pains in the feet from loss of fat causing me to always wear flip flops in the house, this should be separated from the entirely different feeling of electrical jolts and stick pin sensations from PN. I also have lost the layer of fat in my head's temples, so often when I wear certain pairs of sunglasses I get an instant headache. It's quite annoying. My loss of fat in an area as obscure as my elbows causes pain if I rest them too long on a desk chairs non-padded arms. And I must sleep on my back because sleeping on my sides causes my loss of fat on my knees to be painful. And yes, even the ankles knocking together. If you insist on sleeping on your side maybe one of those body pillows would be helpful. You know, the long in length ones you kind of spoon with. Like allanq, the loss of fat in my ass cheeks has complicated my life in terms of avoiding all hard surfaces, which is not easy in an urban environment at times. I too tried padded underwear for a couple weeks and they are useless IMO.
I do have mild PN, which manifests itself in quick lightening bolts down my entire legs and arms, though it's been somewhat managed with Neurontin. I do not have PN to the same extent of many HIVers however. I've never had the constant stick pins in my feet for example, not to the extent where it interferes with walking.
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No,one talks about paint in there hands and feet and ankles. I can't be the only one out here.
Hands ache just from driving the car, resting on the steering wheel. Fat seems to be gone so everything
hurts now, cold and hot water. Blankets resting on my ankles, even my heels resting on a table and elbows on a table . HELP
Hi,
as far as driving is concerned, perhaps you could try to use cycling gloves. Some include a gel pad that could be just in the right place to help you drive without suffering. Because the fingers are cut you would not be uncomfortable in warm weather either. Maybe worth trying.
With fat loss on the feet, which for me has been progressing this year, I experienced a loss of sensitivity on both feet, from fingers to heels and ankles, that gradually disappears now. I did a lot of woodworking during the summer, standing for up to 12 hours a day. I am not used to this as I usually work with computers. It seems the nerves got slightly damaged because of the lack of cushioning and are now on the mend because I am back at my regular sitting job.
With regards to the gym, elliptical machines offer a zero impact motion that combines the benefits of running and step climbing; some even have "poles" to offer a cross-country skiing type of motion that is a great cardio exercise.
Other than that, I am with you all as far as resting elbows, bumping into things or sleeping on my side.
Pat
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Having read the other posts, I'm really glad that I've made an appointment with a podiatrist. I want to get some kind of padded inserts for my shoes to protect me against the possible nerve damage from walking on my now-boney feet. Not sure if the foot doc will have any insight to offer into this particular problem, but if he does, then I'll post.
John
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If you want to hear something scary, when I first lost fat of my soles in the 90's they must have not heard much, if anything, about lipo. I was sent to a podiatrist and she diagnosed me with some odd middle toe bone, but the lowest of the toe bones where it attaches to the foot. She wanted to operate in both feet. I procrastinated and eventually so many other things went wrong with my health I just never got around to it, and I'm glad I didn't. This was a good 10 years ago.
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Philly
There is a simple remedy to sleeping on your side. Use a pillow between your legs to separate them enough so they dont touch.
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It wouldn't stay there longer than 10 minutes. You don't know my bed habits.
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I have exactly the same problem fat loss in feet, elbows...butt.. just about everywhere.... I have found certain brands of shoes/ athletic wear help a lot... most of the Sketchers brand athletics have great cushioning... can do my every day two mile walk with no problem but cannot walk barefoot on a nice indoor carpet.... some brands of dress shoes...especially the Johnston /Murphy brand and the Nunn-bush brand seem to have better cushioning....I have tried the custom made orthotics...very expensive..only marginally better than the Sketchers.... and you have to be sure they will fit properly in whatever shoes you intend to wear most often.... the skinny butt is still a work in progress...haven't found any real solution and carrying a cushion is a lousy option...
Nick
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Seems like the start of neuopathy....Numbness at first, then it proceeds to burning and sensitive to the touch...
I was put on neurontin...didn't take it for long though....didn't like what it did to me
and I am on enough meds as it is..
But if you need to go on for awhile then do so..
When you feel better, than you can always wean yourself off neurontin..
Honey..Your not alone..
That's why we are all here..
To get support and answers from others who have been though stuff that we may
be going though as well..
Hope everyone here has helped you on this issue ;)
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Capemann,
You are not the only one and I'm suprised not to hear about it more. I have seen a podiatrist but still put a little padding
in on top of the orthotics that I got. I'm careful with my boney elbows when I'm on the computer. It is a reall pain in the ass, no pun
intended. Pain pills help a little. If Phizer (sp?) can come up with a pill to "put the fat back on" I think I'd pay whatever they asked, I think a lot of folds would. Hang in there!
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Clearwater,
Is Pfizer actually working on such a drug, or did you just make that up?
John
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Clearwater,
Is Pfizer actually working on such a drug, or did you just make that up?
John
[/q If Phizeruote]
John
Don't know, I'm just saying there is a market out there for it and I hope they are putting research into it. For us and for them. Thank you by the way, now I can spell Pfizer ;)
Karl
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Ok, here goes. Mini often complains about her legs, knees, and hips hurting. I asked her if her fingers or feet go numb, but she doesn't understand what that means. I asked about the tingles, too, and tried to describe them, but she doesn't understand that either. I told her that it's like getting electricuted..she looked at me and said, "do I LOOK like i've been eletricuted before?" But, she does fall a lot when she's walking / running, standing there looking cute, ect. We always assumed it was due to her CP. Do you think it could be from her feet or legs going numb? Her face is very skinny and skeletal looking when it used to be nice and fat and round. She is on zerit (18ml / 2x day), susteva (300ml / 1x day) and kaletra (2ml / 2x day). Are there any tests for the distal sensory neuropathy? How is lipodystrophy adn lipoatrophy diagnosed? What is the test for metabolic stuff and are the meds she's on usual culprits for metabolic issues? She's been on this regiment since 2/02.
Thanks for any help you can offer.
Mini's mom
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Hi Minismom,
Lipoatrophy and lipodystrophy are usually diagnosed by simple visual examination. As far as I am aware, there is no metabolic test for lipodystrophy per se, although those suffering from lipodystrophy often have other metabolic abnormalities, such as high cholesterol, elevated triglyceride levels, and high blood glucose. (Note that this isn't always the case. I have pretty bad lipo, but none of the aforementioned abnormalities.) One of the big problems in dealing with the condition is that doctors have yet to settle on an actual definition of lipodystrophy. Another difficulty is that the condition manifests itself differently in different people.
That said, your daughter is on Zerit, one of the medications most commonly associated with lipoatrophy. So it's a possible culprit. The "skinny and skeletal" face that you describe is entirely consistent with lipoatrophy. Check to see whether she has lost fat in her arms, legs, feet, and buttocks. Those areas are also commonly affected by lipoatrophy. It's possible that her condition might improve if she were taken off the Zerit and put on something else. Talk to her HIV specialist and ask about a change in regimen. It's unclear whether she'll regain the fat she's lost, but at least the condition might not get any worse.
One final caveat: The fat loss could be caused by HIV alone. I'm not on any meds, and I've got lipo. There's no way to know unless you talk to her doctor and explore the possibility of a more lipid-friendly drug regimen.
Best of luck to you and your daughter.
John
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:-*Gosh I love you guys! she has all of the metabolic issues that you listed. Her triglycerides as of last Tuesday were 289. In the past they have been 260 and 173. She's on a diabetic diet, takes 1000mg of fishoil / day, increased fiber. Her HDL keeps going down and her LDL keeps going up. I forget the ratio, but it's not too good. Her liver enzymes have been screwy since she was an infant. What is the difference between lypodystrophy and lypoatrophy...w/o the medicalease, please. What are the side effects or secondary issues with each? oh, you mentioned her legs..they look like chicken legs and her arms are very skinny. She has no butt to speak of, but does have a poochy belly. She is also slow to grow and actually "failed" a growth hormone test in 4/02. We refused to give her hormone shots..and she's grown, but slowly. She eats like a horse and never gains an ounce. She also has not had a normal BM since she was born.
Her PID will be calling in a week or so to let us know her latest blood levels...we're praying for 5 1/2 yrs remission.
Thanks for your help!
Mini's mom
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Lipoatrophy means a wasting away of fatty tissue. So it's fat loss associated with HIV treatment or HIV infection and we usually use the term to refer to a loss of fat from the face.
Lipodystrophy means abnormal fat changes. Like fat disappearing from the backside, arms and legs and reappearing around the tummy, or on the back and shoulders.
It sounds to me mum like little Mini may well have both. :( Obviously this needs to be confirmed by a doctor.
MtD
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well, crap! her doc better call on her day off...looks like we'll be on the phone for quite a while. Good thing she doesn't charge by the hour. I need to find a good way to describe the feelings associated w/ this and distal sensory neuropathy. I tried and she didn't understand. She falls a lot so wondering if her feet are going numb or if it's "only" her CP. Who knows...certainly not me! Thanks again for your posts. You've been a great help. Now, one more favor, please. Is there a faster way to get to the last post in the stack other than scrolling? I'm seriously going to have to take Dramamine before I log on.
Have a great weekend!
Mum
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Sure thing. After each thread's title in the main list you'll see a blue "new" icon when new posts have been made after your last read. Just click that and you'll be taken to the first of the new posts.
MtD
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A standard neurological battery (eg reaction times, nerve conductance) will test for peripheral neuropathy.
DEXA scan, a type of x-ray, will also determine the amount of fat in various parts of the body. Diagnostically it is not so useful with children, though it will show up eg atypical fat loss under feet etc and visceral fat gain around organs.
Mom - please talk to your doc about the Zerit, it's a long game anti-HIV meds and Zerit is associated with many of the "side effects" you note above.
This link may also be helpful:
The Children's HIV Association of the UK and Ireland (http://www.chiva.org.uk/)
Although it's a UK site, it contains much useful info eg re: drugs, treatment, research.
Lipodystrophy is a broad term covering changes in blood fats (lipids), glucose metabolism, fat loss and fat accumulation. Lipoatrophy is a specific term refering to fat loss from the face, arms, legs, buttocks etc closely (but not exclusively) associated with the drugs AZT and Zerit.
Welcome
- matt
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Thank you so much for the information. I've written down the tests you mentioned so that I can talk to her PID about getting them scheduled. She has an MRI on 1/2/08 to check for inflammatory demylenization neuropathy. I'll see if the other "stuff" can be checked at the same time. She'll be sedated so time in the machine won't be a factor.
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Please realize that DEXA scanning is very expensive, and as I understand it, the machine has to be recalibrated specifically to scan for body fat changes. At least here in the U.S., DEXA scanning is not routinely performed on patients with lipo. Its use is limited largely to research studies. I would therefore not expect that this particular test will be performed by your daughter's doctors, if you're located here in the U.S. Of course, the test should not be necessary to a diagnosis of lipo. A simple physical examination should do the trick.
One piece of advice I would offer: Bring photos of your daughter to show the doctor. Find photos of what she looked like when she had her full, round face so that the doctor has a basis for comparison. This may seem elementary, but in my experience, it's anything but. It took me over a year to convince my doctor that I had lipo, and it was only when I took him a set of photos showing the progression of the condition over time that he finally chose to believe me. Because all of my numbers are very good, and I've never been on any antiretroviral medication, he simply refused to believe me when I told him that I could see fat loss in my face and arms. He claimed he saw no change. I hope your daughter's doctor is easier to deal with, but even so, I think it best to be prepared.
I wish you and your little girl all the best.
John
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Funny that you mention the pictures. Dh and I were going through photos today commenting on what a chunky monkey she was and how skeletal she is now. Our kids are always in front of a camera, so documentation isn't hard to find. We lucked out having pix taken just before her genotyping, about 2mths after being on meds, and then again about 6mths after being on her new meds. Of ourse we have several more, but it's odd how much she really changed when we're looking for it! Thank you for your advice. Not sure about whether the doc will test or not, but i'll try. So far, she's been willing to do whatever tests we ask for. She's on a "straight" medical card meaning she doesn't have to have pre-approval for treatment or testing.
Again, thank you. I wish you all the best!
mum