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HIV/AIDS Blog Central

Neuropathy? Never Heard of It!

By Dave R.

December 7, 2011

Becoming an HIV statistic in 2004 was bad enough. But despite all the problems with the various medication regimens and side effects and assorted crises here and there, I eventually learned to live with it. I put it in a file alongside the arthritis and lung problems which had affected me at an earlier age. Okay, I thought, enough is enough; although there are always people much worse off than yourself, I figured I already had my fair share of life-changing health problems. Not so, apparently -- because then, almost unannounced, neuropathy arrived in my dossier.

It started off, like for so many people, with tingling in the toes, then loss of feeling in the toes and feet, and then confusingly dull pain in the same places, especially in the soles of my feet. I felt as though I was walking on bare bones. It didn't happen quickly -- over a couple of years actually. Although I mentioned it to my HIV doctor, I didn't make a big deal of it, nor did he. Then gradually, it began to affect my calves and other functions in my body, but because the joint problems from the arthritis muddied the waters, it was some time before someone attached the "peripheral neuropathy" label and the treatment roundabout began.

I was stretched, prodded, injected and plastered with electrodes to satisfy testing protocols. I tried everything current medical thinking has to offer and none of it worked, either permanently or effectively. Some things helped with the discomfort and pain. Others created a drug dependence which is hard to believe was officially sanctioned. But nothing got to the root of the problem, or allowed me to live a normal life.

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In the end I came to my own conclusion that there simply isn't a cure for neuropathy, in the same way that there isn't a cure for HIV, something that was confirmed later after a series of "yes/no" questions to the neurologist. I decided then to take some responsibility for my own lack of knowledge and trawled the Internet looking for answers. That was a surprise! There are so many commercial clinics and medical practices with fancy names that promise to "cure" your neuropathy -- at a price -- and actually can't; or information pages, which end up trying to sell you this product or the other; it's frustrating.

Because most neuropathy sufferers are also diabetics, or have contracted neuropathy from chemotherapy treatments, there is information widely available on diabetes or cancer sites, but very little indeed for people living with HIV who have neuropathic problems. Most neuropathy patients, especially those with HIV, have learned over time that what they need is practical and easy-to-understand information which will help the patient learn to deal with their disease.

To that end, I decided to take the best of what the Net has to offer, consult with my local hospital and use my own experiences to gather it all together in one place, which can be used as an information resource. I created a basic information website, initially in Dutch (language of the Netherlands, my adopted homeland) and then in English. I quickly realized that this wasn't enough and linked an English-language blog to the site. I found that, for what seems a relatively specific subject, there was a surprising amount of interest.

I was lucky enough to get the chance to contribute this blog for TheBody.com, and hope in this way to be able to spread as much useful information about neuropathy as possible. Each post will contain one or more links to articles or posts on the original blog, mainly to give more detailed information about a particular point. These are all written by professional or experienced people and each post has a link to the original source. The information they contain has been checked as far as possible, by researching as to whether the same facts are presented independently elsewhere. That said, of course nothing you read on the Internet should be taken 100% at face value.

I must add here that I am also not a doctor and would always advise people to consult a professional before embarking on any course of treatment, or taking any medication or supplement. The more opinions you can get, the better balanced your decisions will be.

If you're already suffering from neuropathy, you'll know what a ruthless, complex and unpredictable disease it is. Hopefully, by exchanging information we can help each other to make it clearer and easier to live with. It's not going to go away and the problem will, unfortunately, over the next few years, only grow amongst HIV-positive people.

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See Also
HIV and Neuropathy: How to Avoid Becoming a Nervous Wreck

Reader Comments:

Comment by: paul (evansville indiana) Wed., Apr. 3, 2013 at 2:41 pm EDT
neuropathy only gets worse with time I,ve been hiv pos for thirty years on pain meds for it they are all ways trying to shift me to pain clinics who in return want to sell spine symulators why the money of course why do the doctors trear us as pill heads when all we are looking for is some relief of the ungodly pain in our feet legs hand hips and shoulders go figure im miffed any answers
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Comment by: andrew c (san fran ca) Mon., Jul. 23, 2012 at 6:56 pm EDT
WOW! finally a blog that described my symptoms to a Tee!! Thank you so much. WHile talking to a friend that works at a AIDS charity, i was telling him how much pain i was in (descriptive as above in article) he told me that rather a lot of clients were coming in with same said symptoms, when asked what meds they were on the majority had one in common ( ISENTRESS ).In no way did he tell me i had to change my meds but assured me that quite a few of the clients had come off the drug with a good to middling out comes,I stopped in march of this year 2012 and indeed the horrible pain that i used to get even when laying has some what a baited,thats not to say i have been rid of all the nasty pain but it has gotten to the point that i dont rely on pain meds now that used to make me either crazier than i already am or become addicted or both. After almost 6 years of being on that drug and 2 others i guess we are only now seeing the long term side affects of these newer drugs,dont get me wrong i'd be dead and gone with out them , but who ever says that getting HIV is treatable , you just come sit by me and i'l tell you a tail :) many thanks again for this blog. A
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Comment by: allen h (boston,ma.) Sun., Jan. 1, 2012 at 2:55 pm EST
Dave,thank you for posting your story,for i have been complaining to my health team about my PN and got no answers and no sympathy .have been HIV+ since 1996 and have started feeling PN for about 5 years.I am excited to find you and looking forward to your blogs. I too have gone through all differant searches to no availe.
I have changed primary doctors hoping i will get differant info and knowledge.
thank you again,
allen
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Comment by: Gisèle Vincent-Page (Wpg. Canada) Fri., Dec. 30, 2011 at 12:12 pm EST
You can add me to your of HIV neuropathy sufferers.

No one is sure of course, but I believed this condition developed when I had ocular shingles about 8 years. I'm pleased to find an avenue that will help broaden my knowledge of a condition that pretty filters through all aspects of my life. Thank you, I'll be looking forward to your blogs. Gisèle
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Comment by: Bob Reynolds (Lutz Florida) Wed., Dec. 28, 2011 at 12:54 pm EST
Our aging population will complicate and confuse us. I am 69 y/o male with Hiv since 2003. Already had bone degeneration. As you noted, we have to sort out what is happening and diagnosticians can't pinpoint without our being specific. The ultimate goal is to maintain mobility and functionality with a minimum of change in daily function. Pain becomes a way of life. Management is an ever changing goal. It is no wonder 3 out of 5 HIV PATIENTS experience depression. My team includes my friends, partner, neurologist, cardiologist,internist, pulmonologist, counselor, psychiachrist, infectious disease specialist, pharmacist, neuro surgeon and dentist. Other specialists are called in as needed. Just ensuring a line of communication is a full time job. Empowering others keeps me sane.
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Comment by: Michelle (Baltimore) Wed., Dec. 7, 2011 at 9:33 pm EST
Hi Dave, So sorry to hear about your diagnosis. I was diagnosed with Peripheral Neuropathy 11 years ago so I know everything that you talk about. I had gestational diabetes that normally goes away after pregnancy, but for me it didn't. 6 months after my son was born in Jan. 2001 is when my symptoms started & finally the docs figured out I still had diabetes. It was to late to reverse the nerve damage, but I did get my diabetes under control. I still question if my PN was caused from this & not something else, but with 100 different ways of getting PN I don't think I will ever be for sure. I was tested for all the common causes of PN and all came back negative. I had my Neurologist puzzled & I was very frustrated. I just wanted answers & to be healthy again! A Infectious Disease Doctor is the one who actually figured out I still had diabetes after doing a glucose test after eating and not fasting. I still remember the day I was told that I had PN & there was no cure! I was 29 at the time of my diagnosis & couldn't believe I would have to live with this pain 24/7. My feet feel like they have frostbite & burn like on fire, but numb at the same time. Pins & needles. Squeezing like in a vice. My legs get muscle cramps & my fingers and hands have some numbness & tingling. I have been on fentanyl patch for long acting pain control & a breakthrough pain med used as needed. I also have tried many of the anti seizure meds that are used for PN pain & I only found one that helped called Lamictal. After time it stopped working so for now I'm not on any anti seizure meds. I have tried the antidepressants because they are also used to help with PN pain, but couldn't handle the side effects. I'm looking into trying some natural herbs and get away from all the meds. I'm sorry for such the long post. If your interested in joining a group for support a great group on fb called Support for Neuropathy is a great place to go! Thanks for sharing your story:)
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Replies to this comment:
Comment by: Dave R (Amsterdam) Wed., Dec. 28, 2011 at 6:15 am EST
Hi Michelle,
Sorry for not getting back to you sooner (I've only just spotted the comment). From the sound of it, nobody needs to tell you anything about PN and I do sympathise with how it affects you. For what it's worth, I'm currently feeling a little better with 800mg of Turmeric (Curcuma) a day but because it's in combination with other supplements like Acetyl L-Carnitine and Alpha Lipoic Acid, I'm not sure what's helping what. Certainly since beginning the Turmeric capsules, there's been a measurable reduction in pain. The problem is, as I'm certain you know, what works for one doesn't work for another. Fingers crossed you can find some relief soon.
Best wishes for 2012


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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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