By Laura Whitehorn (Senior Editor, POZ)
I've been involved in the world of HIV since the early days of the epidemic, and for the past eight years or so, I've edited the treatment pages of POZ. The combination--knowing friends who are long-term survivors, and having an interest in the science of treatment--has prompted me repeatedly to cover peripheral neuropathy (PN) in the magazine.
In case you are fortunate enough to have ducked this particular side effect of HIV and some of the meds that suppress it, PN describes the constellation of numbness, pins and needles and generally relentless pain some people experience in their limbs. (It can result from diabetes, as well as from HIV and HIV meds, though diabetic neuropathy differs in some ways.)
I always sympathized with those who suffered from PN, thinking it must be hard to live with that kind of chronic discomfort and pain. But until this past summer, I had never actually felt their pain.
Enter the surgeon. With increasing degeneration of the vertebrae in my lower spine, I had no choice but to submit to a seven-hour surgery that, a month later, the doctor told me was "complicated" and "difficult." Apparently, in the course of those complicated hours, the nerves running down my spinal column were disturbed--producing nerve damage.
The result: A feeling on my lower back that I distinctly recall from childhood, when I got a serious sunburn requiring medical treatment. I remember how any slight breeze wafting over my skin made me shriek in agony. Nothing on the skin itself showed why it hurt so much and so deeply.
But here I was again, half a century later, ready to shriek. And I couldn't--still can't--wear my chosen daily uniform of jeans. Anything that presses on the area in question causes pain that quickly becomes unbearable. Yoga pants (rolled halfway down my butt), here I come. I would wear my jeans pulled down to below my backside, but I don't think President Obama would approve--he says sagging is passé.
Along with my newfound comprehension of what neuropathy feels like, I also better identify with HIV-positive people who find their health care providers less than helpful. My surgeon looked at me as if I were from a yet to be discovered planet when I tried to tell him that structurally my back felt pretty OK, but the skin was on fire.
His nurse practitioners came to my rescue, at least psychologically, when they told me, "Some patients experience that," confirming that it is a form of nerve damage, post-spinal surgery neuropathy. How long till it clears up, I asked, and what can I do to treat it? Don't know, and not much. One nurse did recommend massage; other than that, he said, just be patient.
Fortunately, not only do I study and write about HIV, but I also have a best friend who is an HIV doctor. She suggested vitamin B-12 shots and found me a somewhat helpful topical oil called Neuragen PN (only somewhat affordable, too, at more than $25 for less than a quarter ounce).
Twice a day I rub in that oil, then follow with lavender oil, which helps ease my discomfort mostly, I suspect, by means of aromatherapy. I suspect the Neuragen benefit results as much from massaging the oil into my back as from its homeopathic combination of essences.
So here I sit, in my yoga pants, wondering what will happen when the weather turns cold and the thin leggings don't protect me. I'm also thinking of how much some people living with HIV have to put up with, without much recognition for the pain they endure. HIV, manageable? Some days, probably, not so much.
I've been involved in the world of HIV since the early days of the epidemic, and for the past eight years or so, I've edited the treatment pages of POZ. The combination--knowing friends who are long-term survivors, and having an interest in the science of treatment--has prompted me repeatedly to cover peripheral neuropathy (PN) in the magazine.
In case you are fortunate enough to have ducked this particular side effect of HIV and some of the meds that suppress it, PN describes the constellation of numbness, pins and needles and generally relentless pain some people experience in their limbs. (It can result from diabetes, as well as from HIV and HIV meds, though diabetic neuropathy differs in some ways.)
I always sympathized with those who suffered from PN, thinking it must be hard to live with that kind of chronic discomfort and pain. But until this past summer, I had never actually felt their pain.
Enter the surgeon. With increasing degeneration of the vertebrae in my lower spine, I had no choice but to submit to a seven-hour surgery that, a month later, the doctor told me was "complicated" and "difficult." Apparently, in the course of those complicated hours, the nerves running down my spinal column were disturbed--producing nerve damage.
The result: A feeling on my lower back that I distinctly recall from childhood, when I got a serious sunburn requiring medical treatment. I remember how any slight breeze wafting over my skin made me shriek in agony. Nothing on the skin itself showed why it hurt so much and so deeply.
But here I was again, half a century later, ready to shriek. And I couldn't--still can't--wear my chosen daily uniform of jeans. Anything that presses on the area in question causes pain that quickly becomes unbearable. Yoga pants (rolled halfway down my butt), here I come. I would wear my jeans pulled down to below my backside, but I don't think President Obama would approve--he says sagging is passé.
Along with my newfound comprehension of what neuropathy feels like, I also better identify with HIV-positive people who find their health care providers less than helpful. My surgeon looked at me as if I were from a yet to be discovered planet when I tried to tell him that structurally my back felt pretty OK, but the skin was on fire.
His nurse practitioners came to my rescue, at least psychologically, when they told me, "Some patients experience that," confirming that it is a form of nerve damage, post-spinal surgery neuropathy. How long till it clears up, I asked, and what can I do to treat it? Don't know, and not much. One nurse did recommend massage; other than that, he said, just be patient.
Fortunately, not only do I study and write about HIV, but I also have a best friend who is an HIV doctor. She suggested vitamin B-12 shots and found me a somewhat helpful topical oil called Neuragen PN (only somewhat affordable, too, at more than $25 for less than a quarter ounce).
Twice a day I rub in that oil, then follow with lavender oil, which helps ease my discomfort mostly, I suspect, by means of aromatherapy. I suspect the Neuragen benefit results as much from massaging the oil into my back as from its homeopathic combination of essences.
So here I sit, in my yoga pants, wondering what will happen when the weather turns cold and the thin leggings don't protect me. I'm also thinking of how much some people living with HIV have to put up with, without much recognition for the pain they endure. HIV, manageable? Some days, probably, not so much.
OMG!!! I never imagined until I had shingles and it went into PN and then the fireball. that would rip through my leggs last year the neropathy came and stayed. I am a mover and shaker, now I was reduced to feeling every pain down into feet every step each step.I took therapy, they made me shoes, I used a cain . OMG!! at night in the quiet I felt like I was being nicely electrocuted. I broke my toe 2 time I didn"t even feel the pain till after a hour. My feet felt like lil Abners shoes BIG and NUMG with un ending tingles. I know my stor sound painful. Ther is GOOD NEWS I was in church developing my faith, as the word of God was spoke from the pulpet. The preacher said " Your healinfg is right now. My faith and belief that God was able to heal connected. I feltlke 2 parachutes had drop down into my legs. To God be the glory I no longer even take nreve meds. I knew it left. for the last monthe my legs and feet fell like Im 21. race horse leg. This is my experience up till right now. People that has not had this cannot tell me to much, because they think they know but unlessed they walked with my legs using my feet in my nyropathy shoes, Unless they have burns on there legs like me from the fire ball in my nerves, mind you the doctors told me it would only get worse. That's what they said. I believe in miracles and heal trhough my faith in Jesus Christ. It worked for me. I will be praying for you and all who walk in our shoes. www.jm-ministries.com
Marijuana is the best analgesic I have found to reduce the pain of PN. It might help with the pain you are experiencing. You don't have to smoke it. In fact, in my experience the baked products produce have more of an effect all over the body than smoking does.
I use Tramadol for my neuropathy and it works FANTASTICALLY. I think I would be in a wheel chair now had it not been for this drug. It is non narcotic but you must take it on a regular basis so it stays built up in your system at ALL times. This is where people go wrong with this drug they try to chase the pain or take it when they hurt rather than taking them on a scheduled basis every day. Any side effects which is mainly nausea go away quickly and the nausea can be taken care of with eating when you take a pill. I have been using this for six years and it keeps the pain in check and manageable. It is a fine long term use drug and is used for arthiritis.
I took Neurontin for years as it slowly worsened. For the last few years I've been on Lyrica which is great but is not enough. I have seen Neurologists and have had nerve conduction tests. I've been on nerve meds but it continuously gets more and more painful! I see a pain management doctor now and he has tried lidocane infusions, a patch (for pain) and several different meds so far.
So far, the lyrica and Hydrocodone every 4 hours has helped pretty good. Everytime I think that it can't get any worse, and that I never thought I could endure this kind of CONSTANT pain (24/7)...I realize a month has gone by and that it has gotten MORE painful!
I wish I could tell you something that you could do to help or that it gets better but I haven't found it. I am not a drinker BUT, I have found that the only thing that helps me to feel like living is one stiff drink with my pain meds. That will get me through 2 to 3 hours which enables me to make it through a grocery store or anything outside of my house.
I wish everyone good luck that suffers from this VERY painfully unbearable condition. Do not put off doing something you want to do or going somewhere you want to go because you will never feel better than you do today!
Ive had post herpetic neuralgia following the shingles for almost 3 years. Everything you all describe is exactly what Im experiencing. I take lyrica with pamelor, use the lidocain patches. The neuragin didnt help me. I havn't heard of the tramadol BC so Ill ask my doc about that. Im trying to get off the lyrica because of side effects. Laura, your post gave me a hearty laugh (God knows this isnt really funny) but you describe it so well. That pain when you take your pants off or on is horrible.
I also wonder how folks deal with the psychological issues of being in pain every day- day after day. It makes me pretty depressed at times.
OMG!!! I am overwhelmingly offended by this post. Your faith and connection to God healed you, but he stopped short of clearing up the HIV? This is not empathy. This is not any kind of solution. If you truly knew the pain of neuropathy you would have never posted this here, you only make it hurt more.
i too have suffered severe pain with pn...i was diognosed in 2007 and it set in both my feet within days of being on hiv meds...the pain is unbearable at time in my feet, so much that i can no longer wear regular shoes on a regular basis, i wear slippers or open toed velcro flip flops because of the swelling...i am on neorontin, and lyrica and the pain has hardly gone away, but i get to deal with all of the side affects from the meds...people look at me like im crazy when i tell them im in pain from the pn in my feet....they allways say you look fine...but if they only knew what nerve pain feels like..imagine pulling out a tooth with no pain meds and then jabbing a toothpick down in the hole....thats the kind of pain i deal with sometimes...when i lay down to sleep, the cramps in my feet set in, and i usualy jump right out of bed within a half hour from the cramps, so i sleep in a chair upright alot of nights justy to ease the pain....i would not wish this on my worse enemy....my blessings go out to all who have to deal with this horrible pain....and i do agree with Jack's reply !!!!
Hello and well I was hit with the news in 89 that I was poz and well I have been dealing with neuropathy for a long time and yes it is something that I would not wish on even Bush. I have to say that Neurontin does help yet it makes me feel like I am on zanies! I do take them and well I just deal with the pain and keep going and yes it is hard and well I have to say I have built up a pain tolerance over the last 20 years with the various things that HIV/AIDS and the meds have given me. I also went through colon cancer in 2004 and that built up my pain tolerance even more. I still have trouble at night sleeping with the pain, yet since I have the neuropathy in my left side just under the ribs from shingles I have been given a tranquilizer that is 15mg and I break it in half and take half at night to sleep or I just feel like some one is stabbing my legs. The ache and deep seated pain that just seems to get worse at the night goes on.
So yes it does stay with you and I do not know anyone who ever got rid of it. Weather it was from a surgery or HIV or Meds or Diabetes or Shingles. I also have a silver dollar spot in my groin area from hernia where the nerves got trapped in scare tissue. and that they had to give me shots of steroids and cortisone for a few months and that has lasted about20 years. I am just starting to feel it every so often, yet it is hard to give shots like that to certain areas for the effect of motor skills. And NO it did not effect any of my motor skills for it was a small shot every week for 6 months. Well good luck and I also get an hour massage (4 per month-that's all they pay to get) 4 times a month and on the months that have 5 weeks well I am numb and in much pain from mid thigh to feet as well as I can barley feel my toes and my arms from the elbows down and I have numb fingers from the middle finger to the pinky. No it is not fun and they say that it is a combination of the HIV/AIDS as well as from the AZT back in the day.
First of all Jack what you talking about for you go from being upset to God to the person knows nothing of the pain.
Well I feel that this writer was just letting us know that even as she wrote for as well as about various aspects of HIV/AIDS and the meds and all. She never dreamed that she could identify with us for she could never understand the pain. Well now she has gotten a situation in her life that affords her to be even more compassionate to the trials and tribulations HIV /AIDS humans go through. I do not feel that she intended any harm or any disrespect by her post and I take offense toy our post for here is some one who has done everything that she has been called to do and now she is looking to US for advice on how to deal with the pain that we have felt for years and you dog her out.
I feel sorry fro your selective reading for you just read that it was NOT HIV/AIDS related and took offense. Yeah I know many folks who have that as well as selective hearing and seeing.
Have a great day and enjoy life for it is short and we only got once to do it!
HIV+ for nearly 25 years, I've had PN in my feet since chemotherapy in 1996. I've tried multiple anti-convulsant medications, most of which worked fine for a period of time. The problem was that over time the dosage needed to be increased in order to get sufficient pain relief. Eventually at a higher dose there were side effects requiring me to switch medications. The good news: A few years ago my neurologist started me on Cymbalta, an anti-depressant that was approved for PN in diabetic patients. OMG! Not only has the PN been managed well, but the impact on my mental clarity due to switching from anti-convulsants has amazed me. I highly recommend Cymbalta over anti-convulsants.
Thanks, I have had PN for almost 10 years from being on D4T for too many years, the pain is AWFULLLLL at times and sometimes I feel like I am going mental, glad to know I am not :-)
Jack,
Faith in Jesus is always a solution. It helps to know that their is someone out there bigger then me who cares about what I'm going through and maybe I'll get my miracle of healing like I have been praying for or at least I know that I'm alive because it was Him who gave the Doctors and the Scientists the wisdom to come up with the drugs to keep us alive. maybe if you pray you will not be so angry at least.He loves you.
I to have to deal with PN and I do know what pain feels like. I have had to live on pain meds for the last 4 or 5 years. I also take the Neurontin for the constant pain and burning in my legs and feet. at least it helps ease the pain,I remember before I found it. I would lay in bed and just cry. at least I can walk in my house with slippers on. I don't go out much because I can't walk or stand for real longplus now I have developed severe heartburn from all the meds,it feels like a hot poker is going through my chest,and it travels up my jaw. as soon as I take tums and drink very cold water it go's away temporarely I have just got on Nexum, another med. I know I have an ulcer from all the meds. on top of fibromaliga,and disc's that are budlging and tears in the tissue around them from a car accident 4 years ago. so I know about pain, but I still trust Jesus if I did not I would not be able to get through this,I would have already offed myself. so please do not jump on people for their faith,for some of us it's all we have.
pam replied to comment from Jack | October 30, 2010 9:54 AM | Reply
Jack,
Faith in Jesus is always a solution. It helps to know that their is someone out there bigger then me who cares about what I'm going through and maybe I'll get my miracle of healing like I have been praying for or at least I know that I'm alive because it was Him who gave the Doctors and the Scientists the wisdom to come up with the drugs to keep us alive. maybe if you pray you will not be so angry at least.He loves you.
___________________
I THINK YOU NEED TO LEARN SOME RESPECT!! There are those of us who don't believe in GOD at ALL!! Proselytizing is just in bad taste. I love myself and others care about me. I don't need a sky god, I have spirit within me. Please think about this.
I suffer from PN. Diagnosed in 2008. I noticed symptoms(both legs and hands/arms) almost a month or so after seer conversion, then added the triple therapy, it made it worse. My two neurologists and Hiv doctor recommend I have IVIg treatment. Apparently they label what I have "CIPD" This treatment, i am told has worked wonders for many. That's the good news! However, CIGNA, my health insurance provider, refuse to pay for it ($8000) per treatment twice a week via IV. Stating that my symptoms don't match their criteria. My doctors are appealing it, but I don;t hold out much hope. Their criteria, apparently, is way out of date with current neurological practice. Meanwhile I suffer. I am sure there are many others who have been turned down, and wonder what action you can take next. I live in NYC. What adds more scorn to the great CIGNA is that some family medicine doctor (Lester Keith)somewhere in AZ, not even a Neurologist has done all the denials. It just does not seem fair. Any comments
Thank you Laura for putting something I've been dealing with for awhile into such simple and concise words. I've been poz since 1985 and although my PN hasn't been nearly as bad as some folks, a tendon reattachment surgery in 2004 caused a problem similiar to your back surgery and your explanation of the situation was spot on. I have never felt so helpless(and hopeless) in my life. I now know I wasn't a nut case(ATT tried to fire me because of this) and what I went thru was way too freakin' real. It's people like you that help me move on with my life and know that whenever I think I've got it so bad, that there are millions of people that have it even worse.
Oh yeah...did you ever think about taking that Doctor to court? After all, he/she did muck it up...and should be held responsible in some way. And what are your feelings about that?
Take care...
I have had neuropathy ever since my diagnoses in 2005. I was also diagnosed with PML (Progressive multifocal leukoencephalopathy) The nerves in my feet and calves are numb 24/7. The medication that I have found to offer assistances in Tramadol and Lyrica. Both of these medications offer me a sense of relief and give me the capability to work 2 jobs on my feet. I must say that a positive attitude and a drive to move forward every day has assisted in the wellbeing of my life. Never let the pain be the controller of what you want to accomplish in life set your goals and continue to move forward. P.S. if they try to give you Topamax the side effects are anxiety attacks I got off of that right away.
I had full blown aids with KS all over the outside and inside (lungs, throat and lymph nodes) back in 2001. Boy that was fun. Anyway, I was told my PN was caused by the virus, the meds and the chemo all combined. The only way I could describe the pain was to say it was like putting my feet in a deep fryer 24/7. While I was fighting all of this in the hospital, they would inject me with Dilaudid. OMG!!! That stuff not only stopped the pain but it made me feel great too. Although it's a very powerful narcotic, it worked great at the time. upon leaving the hospital countless times and eventually for good, I tired everything from Oxycontin(never again) to Neurontin which did alleviate the pain somewhat. Mostly, I smoked POT. Yes, Marijuana was my best friend through all of this. Remember, I was on chemo so I needed to eat and boost my nutrition. My albumin was barely at 1 and I recieved countless blood transfusions because my red blood count would drop as low as 4 all while having no t cells at all. Bottom line folks, now I take Kaletra and Truvada. I am undetectable with the newest test: less than 20 viral load and my T cells are at 885. I don't take any pain meds and I stopped smoking pot in June 2010 due to cost. I just can't afford it, but i do miss it. I guess what I'm trying to say is hang in there everyone, it could possibly get better. They once told me it never would.
Hi Laura: Thanks for sharing. I had no idea of the your PN and I can totally relate. I will be blogging about it soon. For me the neuropathy has gotten much worst in the last 2 years I'm having trouble simply walking down the street.
Much love, David
I HAVE HIV AND PN. I AM USSUALLY SICK TO MY STOMACH MOST MORINGS AND SOMETIMES ALL DAY AND NIGHT. I WORKED WITH HIV FOR YEARS . WHEN I HAD A BAD STABBING PAIN IN MY LEFT FOOT AND ANKLE I THOUGHT IT WOULD GO AWAY. I WAS AT THE PAIN DR WIHIN DAYS. I HAD TO STOP WORKING. LOST MY HOME OF 14 YEARS. I HAVEBEEN ON NARCOTICS WHICH I THANK GOD FOR DAILY. AFTER 5 YEARS OF VICODIN AND OCY. I WAS PUT ON METHADONE. I STILL WALK WITH A LIMP. I USE A CANE. I STILL HAVE PAIN BUT THE METHADONE WORKS FOR ME. TAKE CARE EVERYONE. KERRY
I sat here reading this article and realize I have taken every medication mentioned by all of you except Tramadol. I will ask my HIV specialist if she can prescribe it for me. Hopefully it won't interfere with all the other 16 meds I take each day and might help.
The pain in my lower legs and feet is unbearable. My life seems to have stopped completely. I can't do much of anything except watch time slip by and lament that I am not part of it. I had hoped that Lyrica would be the magic pill. It did nothing. I stopped it after 3 months. I also like some of the others just recently saw a Pain Management Specialist. Again I came away with nothing except now I am on hydrocodone 4 times a day. I also have an illness called Polycythemia-Vera. A non-cancerous form of Lukemia. I produce too many red blood cells and have to be phlabotomized at times.(they believe it caused me to have a stroke and a heart attack) Inorder for me to shower I have to take 3 hydrocodone and a Xanex otherwise I get a reaction on my upper body of the nerve endings firing off. It feels like I am covered with 100's of red-ants stinging me. When that happens the PN takes a back seat. HIV has made my whole life a train wreck. The PN is a constant extreme pain that spikes unbearably at times. I have been HIV Positive for 10 years and on meds from day one. The first few years I had no side affects. Then the train wreck startd and never ended. It seemed every year something else would happen. I too have had major surgery, a double Femeral bypass in both my legs and that caused alot of nerve damage on top of the PN. Damn, I could go on for hours but I don't want to create a pity party for myself. I wish all of you less pain and I hope you get some relief.
Take Care.................. Al Hebert
My heart goes out to everyone who is suffering and sharing their stories on this site. I too have had bouts of PN, but have been blessed with recovery. I especially feel much sorrow for those posting here who are in denial of GOD and his son JESUS CHRIST, without him, my life with AIDS would be unbearable and I would have no hope here on earth or in the afterlife.
GOD is not only real, he is good, and faithful to those who accept his son as their lord and savior. Don't be fooled by the things of this world to think that there is an alternate answer.
Amen brother, I have lived 23 years with HIV and have went through hell! I am
Legally blind because of CMV Retinitis of course HIV related My hands get so
Numb I want to scream my head off not to mention the leg cramps that make me
Jump out of bed during a sound sleep! I am taking the generic for Neurontin
In February of this year I had a total hip-replacement caused by Avascular
Neucrosis,my Doc said just another HIV related disease, sometimes I want to
blow my brains out but I just pray for a quick sudden death Stay strong all of my
Brothers and Sisters in CHRIST
Thanks for sharing your experience! I've been HIV since 1987 and it wasn't until about 2 years ago that I experienced my first sensations of pain and burning. But unlike other HIV patients, I don't have PN. I have L3, L4, and L5 radiculapathy symetrical pain down the thigh and calves. My HIV doc and Primary Care Physicians all say that it most likely is being caused by being a long term survivor and the long list of Medications I have been on and are still taking. My problem is that I'd like to find a support group for folks that have HIV AND chronic Pain . . . I'd like to discuss my case with some University that might be engaged in research on folks that are long-term survivors and experiencing pain not associated with PN. I can't find anything really useful online except abstracts from medical journals on what I might have. I've tried Gabapentin - which made me completely crazy, Topomax - which lowered my white blood counts to zero, and now trying various doseages of Lyrica. Thank God For Lyrica as it's given me back my life - at least 70% of the pain is not noticeable. However, that's not good enough for me. I'm not a candidate for surgery because MRIs show a perfect spine. An EMG study shows most likely what the problem is . . . damaged nerves related to the L4/L5. But there is nothing anyone can do, except help control the pain - if possible. So where do chronic pain sufferers go to get help beyond their PCP or Specialist, when these Doctors have no idea who's doing work in the field of pain management as it relates to HIV and the medications that has caused such damage?
I was in my fourth year of college when my feet started getting this incredible itching inside that wouldn't stop. Later, it turned into such excruciating pain, that I couldn't sleep. I discovered one of my drugs contained AZT in low amount, so I got off it, but the PN was still there. I went to get the full tests for PN, and that's what it was. I thought, jeez I have survived HIV/AIDS, and I am in the groove with my life, then this. I spent days crying and asking God why, why this now? No answer!! I contemplated suicide, but I decided to find out what I could do. The answer was nothing. I live on a cancer patients dose of Fentanyl, Percocet, and Neurontin. I use Lidoderm patches, and I am doing fairly well. I can't walk long distances or travel, but I graduated with my AA degree, and I am working on my B.S. in Computer Networking. I plan on graduating come hell or high water. I had to learn what I could and couldn't do. I have to keep stress to a minimum, and I have to drive with cruise control when I can. I don't have the life I had, but I do have a life, and I am happy to wake up each morning. I walk as far as I can everyday to keep my muscle tone. I hope for a cure, but it doesn't seem like there is going to one soon. I have to say that after having this, not much bothers me. The drugs keep me in a cloud, but the pain is manageable. I sweat easily which bothers me the most. My advice is to get a good pain manager, keep stress low, and realize that your old life is over, grieve over it, and move on with your new life. Life is very short, and enjoy the good times. I haven't given up hope for a cure or remedy for PN.