POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Miss Philicia on November 18, 2010, 04:13:31 pm
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I've been coasting along on fairly good health for the last several years, and I'm still fine from a "lab numbers" standpoint. But in the past year what seemed like my peripheral neuropathy increasing has gotten way worse -- basically I quite often have no sensory effect in all of my toes. If I rub my toes against my other foot they're just dead, can't feel hardly anything. Obviously that also effects my walking, but even just lying down on the sofa they act up and are painful, and then at times it's bad and I can't even sleep for hours. Also, the effect of really bad lipoatrophy on the soles of my feet, which has been bad for ~12 years, seems worse, but not because anything I'm on now is causing more lipo, but just because my feet have had no cushion for that long.
Yeah yeah, I know most of us LTSers complain about this, but if you want to know how bad mine is during my 4-month HIV doctor visit/check up yesterday he came to the conclusion that what's happening isn't really an increase of PN issues, but that my longterm lipo issues have either caused a build up of whatever that bone is called where your toes meet your feet (sorry, forget the name) or it's been like that pre-HIV and the lipo just made it much worse over time. I'm going with the latter because I then admitted that about a decade ago I went to a podiatrist when this all began and she wanted me to undergo foot surgery, in both feet. I brushed it off at the time as it was around when I stopped working and all my insurance issues were complicated. By the time that stuff settled down I wrote it off to there not being much knowledge of what lipo was when I went, which was probably in 1999.
So sometime I guess in the first half of 2011 I'll go and do this finally. I just hope it resolves this issue as it's to the point where I even hobble around in my tiny apartment. I still have to beef up my insurance coverage as Medicare alone won't cover it all, so I met with my case manager about that. Then it's off to a podiatrist for a real examination. If I have both feet done I'm sure I'll be out of commission for weeks and will have to recuperate at my parents' house in Virginia... fun!
On the plus side my lab numbers are still fab: 1268 cd4, 49%, <20 viral load :P
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I'm so sorry to hear you are having this difficulty , If I'm not mistaken an old girlfriend of mine just had the same surgery or it sounds damn close to it . She is not poz but for some reason had a buildup in that area of the foot you spoke of . She is on my FB page if you want to ask her about it .
I talked to her this week and she said it wasn't to big of an ordeal to endure . Come to my house to recover and I will take care of you , this is not a threat in case you are wondering .
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I'm mostly just venting right now, like I said I won't know exactly what is needed until I go to the actual podiatrist. But thanks for the recoup offer. Really my parents are OK for me to go to -- they're not completely unbearable.
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I'm mostly just venting right now, like I said I won't know exactly what is needed until I go to the actual podiatrist. But thanks for the recoup offer. Really my parents are OK for me to go to -- they're not completely unbearable.
Well , I guess I can put the rat and silver tray away ;) .
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Yes it does Miss P
Thankfully 10 years ago I got a referral to a "pain control consultant" after being encouraged to describe the pain in exhausting detail we started on a interesting year off experimentation with conventional pain control , antidepressant , anti inflammatory drugs and grass/hash. This actually worked with I think 2 co -proxamol x a day, low dose 35mg venlifaxin {anti-d } topped off with low dose off morphine based drug. These had to be taken regularly and on time to get full benefit . I am on a different combo now but same principles and sadly no dope as that's all been knocked on the head.
It transformed daily life for me and as long as I adhere to the regime I am mobile , with added mind tricks from a physiologist things tick along o.k.
Good luck with what ever you embark on.
mhtv
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aw David, its always something.
I thought you were going to tell us that you had just contracted the DREADED stomach flu ( 24 hour bug) ( gastrointeritis) that seems to be going around. Our friend Steve had it, then Kurt, who ran a 101 fever, projectile vomit that ran down the walls, and diarreah that filled up the john. He was so tired from all that vomiting and shitting and fever and dehydration, I was afraid I'd be taking him to the ER. But somehow we managed to pull him thru it.
Then I got it.
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Miss P,
I can totally understand you're wanting to vent. I have had PN for a decade now. It is no fun, and it can be unbearable at times. When you are in pain EVERY day, it just sucks. I have been through the mill with this, and it is no fun. I have no feeling in the bottom of my feet, but my toes have not acted like yours.
Then I get the sharp shooting pains, that seem to come out of nowhere! It's crazy stuff. Some days I dread just standing up.
I hope your surgery gives you some relief. Keep us posted. Sorry you are suffering.
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Metatarsals?
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Yeah, when I looked at a diagram I think that's it, and I think it's just the middle (3rd?) one that is suspected.
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Hey David,
Is it calcification in the joint where the metatarsal is attached to whatever that other bone is called?
Just wondering because when they told me I needed surgery on my foot, it was a buildup behind my great toe, otherwise known as my big toe, on my left foot. They were talking about grinding it down and cutting out a portion of it.
Sorry this is happening to you.
HUGS,
Mark
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Ms. P.
Sorry to hear about your foot troubles. I hope you get better soon.
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Sorry you're going through this. As you know, I've had severe PN issues for years, but this sounds even more complicated than just PN. And much more painful. I hope you're able to get this resolved, and if it's after the first of the year, I hope you're able to enjoy the holidays. No black Friday shopping for you, aye?
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I'm not big on the idea of the soles of my fee being opened and having the bones filed down... but it help me to walk better the next twenty years than I will do it.
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Sorry to hear you are in such pain. I hope the podiatrist can figure out the best way to help you. I'm just curious, how did the pain start in your feet? The bottom of my feet have started to throb for the last couple of years.
Feel better,
Snow
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Geez Miss P.
Hopefully the recovery won't be too long and hopefully you'll have some relief from all the crap with your feet.
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Miss P,
I have pretty much the same problem with little cushioning on the bottom of my feet. Also a bone problem similar to yours. My podiatrist was going to do surgery, then we tried Voltran topical ointment for awhile. That seemed to help. I also had a pair of orthodic insoles casted for about $400 and they have made a terrific difference. Surgery may still be in the future for me, but in the meantime, I'm o.k. with this.
For what it's worth.
It seems more and more long termers are losing fat in the bottoms of their feet. My podiatrist is up on it, but my derm and even primary physician wasn't aware of it.
At any rate, I relate and wish you the very best whatever you do.
Best always,
Jeff
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Sounds bad honey...would they do surgery on both feet at the same time? Or one, then the other? I guess you'll know more after you see the podiatrist. I hope that it all turns out well, and you'll have a quick recovery....
HUGS, Alan
PS - I still think one of us needs to invent some "Tempur-pedic" shoes ;)
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The podiatrist I saw over a decade ago said we could either do them both at once, or one after the other, depending on if I could easily miss work. Since I'm not working I just figure I'd rather have it all done at once, and then let my dear Mommie take care of me -- home cooking does a body good, even if it means being her hostage. I assume I'd also have crutches for a while.
Oh, my other new thing is wearing elastic knee supports -- but not on my bony knees, but on my bony elbows. My elbows run into the stainless steel arm rests on my computer chair and over time that's caused callouses to develop there too, so I put on callous lotion and then cover it with these elastic supports so that the greasy substance doesn't get everywhere. I need to find something like this for when I sleep so I don't ruin my sheets.
I alos have one of those water foot massagers and I was using it for a while but I've not done so this past month, even though it does help keep my skin from getting so flakey.
I swear I feel like a 85 year old woman in a rest home :(
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What kind of callous lotion do you use, and does it help?
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What kind of callous lotion do you use, and does it help?
Yes, I fork up the pricey dough for this (http://www.kiehls.com/Intensive-Treatment-and-Moisturizer-for-Dry-or-Callused-Areas/295,default,pd.html). They carry it at Nordstroms and Niemans, and you can order it on line from Kiehls.
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I recently rediscovered the value of good old fashioned cheap Vaseline , my dermatologist told me to use it after some surgery I had done recently and it worked really well on the dried skin . I wouldn't want to get it all over the house but it sure did work quickly .
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Yes, I fork up the pricey dough for this (http://www.kiehls.com/Intensive-Treatment-and-Moisturizer-for-Dry-or-Callused-Areas/295,default,pd.html). They carry it at Nordstroms and Niemans, and you can order it on line from Kiehls.
Yeah, I was wondering if it would work on feet also. I get some horrific callouses on my feet, and use a callous shaver. The problem with that is, I always cut myself, and with extremities bleeding so freely, I have to put on gauze and surgical tape. Anyway, thanks for the link.
I hope the surgery goes well, when you have it done. Maybe the home cooking will help with the healing process. :)
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Yeah, I was wondering if it would work on feet also. I get some horrific callouses on my feet, and use a callous shaver. The problem with that is, I always cut myself, and with extremities bleeding so freely, I have to put on gauze and surgical tape. Anyway, thanks for the link.
I hope the surgery goes well, when you have it done. Maybe the home cooking will help with the healing process. :)
Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)
And jg, I should try the cheap vaseline route next -- I got the Kiehls as a Christmas gift some time ago, though back in the day when I had money I shopped there religiously.
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Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)
And jg, I should try the cheap vaseline route next -- I got the Kiehls as a Christmas gift some time ago, though back in the day when I had money I shopped there religiously.
When I was in chemo my feet were cracked open and actually bled a time or two . A nurse gave me a sample Kit of a product called Zim's crack creme and it worked great for all of us dealing with side effects from chemo and all the skin issues , its not an expensive product either .
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Maybe you need to have your foot opened up and your bones shaved off like I'm going to do! :)
:D
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I swear I feel like a 85 year old woman in a rest home :(
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You really have eclectic taste.