Neuropathy and HIV

[drew50]

Hi,
I'd just like to bring my new site and blog to everyone's attention. If you know someone who is suffering from neuropathy, you'll know how life changing that can be. This site and blog are intended as information sources but also as media for exchanging views, experiences and ideas for relieving problems.
http://www.neuropathyandhiv.nl/neuropathiehiv_002.htm
and
http://neuropathyandhiv.blogspot.com

[Ann]

Drew, your last four posts have been about your new site and blog - three new threads and one as a reply in someone's thread.

If you're not getting any responses, that's not a reason to spam these forums over and over again to promote yourself. Knock it off, please.

Please do not start any more new ones promoting your blog. If you're afraid people aren't seeing your threads, bump one of your old ones instead of starting yet another.

Thank you for your cooperation.

Ann

[eric48]

just been diagnosed with moderate signs of axional sensitive neuropathy (no pain, though...)

found the link usefull

Thanks

Eric

[J.R.E.]

Drew,

Thanks for posting the link.  The site is informative. Quite a long time ago, Tim
 ( Moffie) who has since passed on , wrote this paper. I'd like to repost it, for those that have HIV related  neuropathy, and seem to be dismissed by their doctor.

Tim had written this some time ago:


From Tim (moffie) :

In the past, many of us were placed on the "d" drugs, or ddi, ddc, and d4t. I was on all three for some time, I think about three years. I spent most of 1997 and 8 making sure that the Lazy Boy Recliner didn't move. Being a person of some considerable acitivity, I found this time to be one of pure torture. I was also dealing with the after effects of two bouts of PCP, so the time was a blur in my memory for the most part, due to the fact that the high fevers, 104 -105, left my brain pretty blank about that period of time.

What follows is a paper that I wrote for those of you who suffer from PN, to hand to your medical professional, when you tell them about the joys of PN, and they shrug their shoulders and say that people with Diabetes have been suffering from PN for ever, so get used to it.


--------------------------------------------------------------------------------


Blow Torch, Vise-Grip, Live Socket With Bare Wires, Punch, Hammer, Light Bulb, Carpenter's Saw

Medical Professional:

What follows are instructions for you to do to simulate the true pain and discomfort that is present with HIV related Peripheral Neuropatyhy. This author does not know the difference or similarity of Diabetes related PN, but when I comment about the severe pain that I suffer on a twenty four hour basis, I am always put off with the instruction that people with Diabetes have been suffering with this forever, so don't complain about it!

You might be wondering what the list of common household objects are doing at the top of this document. These will have to be gathered, and used for you to experience the true joy of what you are about to embark on.

First off, take the blowtorch, with a full tank, light it and place it in such a way that the intense heat of the flame covers the bulk of the bottoms of both feet. If no blowtorch is available, sitting on a tall stool and placing your feet over the stove will work as well. Now you are experiencing the "constant fire" of PN. Wait a minute, why are you moving your feet?, you must leave thiem over the heat until you are crazy with the pain, and for the rest of this exercise.

Now you are set for the next step. Take the vise-grip, and place it firmly locked on one of your large toe joints. Make sure to place it under such pressure that the pain brings tears to your eyes. Without removing the vise-grip, and making sure to leave your feet over the heat, have someone else place the elcetric cord (wires exposed) into the wall outlet, and then at random have them touch your skin with the exposed wires, ever-so-lightly, anywhere from the tip of your toes up to your knees. Meanwhile, pick up the hand saw and start dragging it between your toes (any of them will do), remember to do this activity very slowly and with determination to acieve the maximum effect from the teeth of the saw. Pick a toenail, and place the punch just under the nail and then use the hammer to tap the punch into your toe to about halfway up the nail. Now you can remove the punch. It is now time for a break, so you can remove your feet from the heat source, and remove all the tools. Carefully break the light bulb into your shoes, and remove the metal socket and throw it in the trash. Make sure all the glass is still inside your shoes, put them on and wear them for the rest of the day. For the maximum effect, the glass should be emptied into your socks for a really accurate simulation. By the way, you are late for that meeting you are scheduled for and nobody is going to give you a chair, except that wonderful elderly lady from the mail room. What do you do?Huh Take the chair, or go ahead and be polite and stand for the next hour. Aren't you glad that you don't have to choose, because this has only been and exercise? Those of us, who have no choice, live on and handle the pain as well as we can.

In the future, when one of your clients speaks to you of their pain, PLEASE remember this exercise, and do not try to diminish their agony. Do not suggest that they walk five miles (or even five yards) a day for the good of their heart. with the pain that comes with Peripheral Neuropathy, a really good and final heart attack could be a true relief.

One final note, this paper does not cover the pain that also migrates to your hands. The same intensity and disabling effect happens, which makes life increasingly difficult for those affected. Just remember, try to be kind.

[eric48]

Hi Ray,

your CD4 count went slightly up in your last labs... Am I correct ?

Eric

[Miss Philicia]

Two comments:

1) There was article this week that PN remains common despite improvements in HIV medication, so it's possible that laying all of the blame on the old d-class of drugs isn't a full picture:

http://www.poz.com/articles/hiv_peripheral_neuropathy_761_20222.shtml

2) I recounted some of my current issues at one point in a thread, but it was in LTS so many probably missed it.  Like many I've had PN issues for over a decade and took neurontin for it, but mine was never as severe as some people's and thus my neurontin doses were fairly minimal.  However, about 12 months ago that all suddenly changed dramatically and now it's suspected that what seemed to be increasing levels of PN are being confused with what we suspect is calcification on the bottom of some of my metatarsal bones.  Unfortunately I was only on "straight" Medicare B so I've had to spend the past couple of months obtaining secondary insurance, so that once I go to a podiatrist and then have possible foot surgery I'm fully covered -- as of last week I've gotten that all finalized, now I just have to get a podiatry appointment, etc. but my HIV specialist is fairly certain that this is the issue and not PN.

Since raising this issue at my support group several others have discussed podiatry problems, and one guy just went to a podiatrist and got a non-PN diagnosis, though he also like me has had PN issues.  His new diagnosis wasn't calcification, but it was more along the lines of what some women see when they wear high heel shoes that cram their toes into pointy bits.  But anyway, my larger point is that sometimes foot problems shouldn't just be chalked up to PN, and if you are not sure of what is going on be sure to see a podiatrist, and a preferably one that has treated HIV+ patients.  In my case, as well as my friend's, we both have long term lipoatrophy issues on our feet that also complicate the podiatry issues.  I will update my issue once I see the podiatrist, but at this point I actually have trouble walking more than 6 blocks without it being completely unpleasant, and as an urban dweller who doesn't own a car and lives in a 4th floor walk-up apartment you can imagine what that is like (or not).

[J.R.E.]

Hi Ray,

your CD4 count went slightly up in your last labs... Am I correct ?

Eric

It stayed about the same.  The cd4 on 12/13/10 was 446 .  current cd4 is 420.

Percentage went from 19% to the current 15%

Ray

[cwbyway102]

Just adding a note here.I've had PN in my feet for a couple of years now,and I had it for about a year before I was even Diagnosed.I've really never had to take medicine of any kind before my DX.So my doctor and I found out I had a B-12 deficiency.I've been on B-12 shots for about 9 months now,and it seems to be helping a lot.We aren't sure what caused the deficiency because I eat plenty of meats. 

 Its not just medication that causes it.It has something to do with HIV its self.

[eric48]

Helpfull comment. I'll make sure to discuss it with my doc

Thanls

Eric

[mikejh]

Nice links i think it will help a lot of people who dont know whats going on. I have NP for years and are on morphin and oxycocone for 2 years now, nothing else worked have tried everything from Garbapenton to Lyrice
Mike

[Tempeboy]

Great site,

Thank you for sharing.

One thing I don't understand is why some experts suggest eating extra salt - how would this help?

TB

[drew50]

Hello Ann,
In your reply from April this year, you suggested 'bumping' a post was a possibility but I don't know how to do that - could you advise me please? Again, no self-glory seeking here but the blog I run (linked to the website) has now got a huge amount of new information for Hiv and neuropathy sufferers and I would like them to have the opportunity of seeing that. For such a small target group, the blog gets +- a thousand visitors a month and seems to have struck a chord in several areas of the world (my hiv-specialist says it's because neuropathy sufferers are desperate for new information and hints and tips - the comments I get certainly bear that out). So if it's possible to bump the post every six months or so, I'd like to  take advantage of that possiblity but don't know how.
Thanks for your time,
Dave (Drew50)

Drew, your last four posts have been about your new site and blog - three new threads and one as a reply in someone's thread.

If you're not getting any responses, that's not a reason to spam these forums over and over again to promote yourself. Knock it off, please.

Please do not start any more new ones promoting your blog. If you're afraid people aren't seeing your threads, bump one of your old ones instead of starting yet another.

Thank you for your cooperation.

Ann

[Ann]

Dave, to bump a thread is to simply post in it, as you have done. If you don't have anything new to say but still want to bring the post up to the top of the list, you can just write...

~bump~

... or anything else that comes to mind. An off-colour joke would be appreciated by most.

If you need help finding your thread when you come here, click on the "Show own posts" link under your name in the left-hand column of any forum page.

[johnbrown]

I've had PN for over 7 years now and I appreciate the links to the sites. Currently I'm taking Perc 10s 4 times a day and 1500mg of Gabapentin 3 times a day. My pain level stays around 5 with this regimin (which I can live with!) but on the rare ocassion the pain level jumps to 8 or 9 even with the meds. When my Dr put me on Intellence as a booster I was on Perc 7.5s and the INtellence decreased the absorbtion level of the percs...the intellence booster works extremely well (my numbers are the highest they have EVER been). My Dr told me that this will only get worse over time and will spread into my arms and hands (right now its only in both legs below the knee). To anyone dealing with this...do not be afraid to discuss with your Dr. There are regimins out there that do work and yes some involve Opiates. My Dr and I have tried various regimins and this one works for me (for now anyways...LOL)

[mikeyb39]

stuff like this is what i dread..uggg.  i pulled a muscle in my shoulder and have been having tingling and numbness in my left arm and hand, of course i freaked out with the doctor he says its the pinched nerve in my shoulder, but its been lingering around for a week. , no pain really except my shouder blade, but the numb, tingly feeling gets to me.

i would take the opiates over the pain, hell just give me the poppy plant and i'd suck on that if it meant no pain.

[johnbrown]

mikey,
You do get used to dealing with a certain amount of pain and as far as the opiates go....well I'm always worried that a tolerance will build and when I get to the end of my time that nothing will work. My father had severe diabetic PN and I know what he went through the last couple of years of his life so I have a gauge of sorts of whats to come later on. To be honest I'm not even supposed to be here......in 2001 my Tcells were 23 and a VL too high to even count and I spent most of 2001 in the hospital with one infection after another and now I'm as healthy as can be so if PN and Lipodystrophy are the only things I have to deal with now I'm thankful.