I wake up in the morning and they ache. They haven’t even had to work yet.
I place my feet on the ground and as I rise, I need to catch myself as the shock of needles shooting into my feet and up my nervous system was more than what I was prepared for. I sort of half shuffle to the washroom feeling older than I need to and have to sit down again. My HIV neuropathy is acting up once more.
Now HIV for many has come a long way. It may be the death sentence it was, but for some of us long-term people, it’s hard to not have complications from it. This one just happens to be one of mine.
I work barefoot with teaching (yoga) and practice and it’s kind of a mixed blessing. Sometimes when students are not looking I’m keeled over in a corner massaging out my feet or standing on my knees . Chins and I can get away with that, but not everyone can.
I am not going to go into the detail of the medical definitions and information but you can find out more from this site. What I can say is that it can be anywhere from a mild soreness or numbness to excruciating pain so unbearable that one cannot walk or stand. It typically starts in one's furthest extremities (ie the feet) and has been described as needles, numbness, walking on glass, on fire or ice, electric. As it advances it can rise up to ankles and calves and be present in the hands and wrists as well.
No matter how fit or strong or flexible I am, the pain from this simply makes me feel old. It takes several hours to get up enough to mentally dull the pain or warm up to ignore it and start my day. But really, it just makes me feel old. And it’s frustrating. It’s the immobilization that hurts, not so much the pain, but the fear that this may be it; that I’m done. And it’s wheelchairs from this day on.
I wish I was less extreme in fear, but that’s what it is.
A good friend mentioned recently that fear is a primary concern for those who have something to lose. And I have to say that I am incredibly grateful in my life to have the physical health and mobility and life I do after 18y years being poz.
Thankfully the treatment for neuropathy is do-able. I think of it as part of my self-care routine:
Footwear: First, get a good-fitting pairs of shoes, or a looser pair of shoes that work with where the feet are today. They do change often. Since putting on 30lbs of muscle, my feet got wider, which makes sense, as they are holding up more weight now. So getting bigger shoes helped.
Therapy: Use hot/cold therapy as in putting your feet in cold water than heated water and back and forth between them every few minutes to get blood and circulation flowing. I also use tiger balm (hot) and China gel (cold) on my calves, ankles and feet if/when I need to maintain one of those extreme temperatures for a longer period. My preference is usually more in favour of cold so sometimes in the morning I sit on the edge o fthe tub and just blast cold water and soak my feet under the running water. The shock to the system definitely numbs the ache.
Massage: In addition, when watching Netflix or something on computer I play with and massage my feet. Either by hand or I use a field hockey ball and roll it around under my feet. It sometimes hurts and aches but is wonderful. You can also get work down by a Reflexologist and/or massage therapist who can work this area out greater.
OR, if you have a kinky friend with a foot fetish, you may get the really extra added foot love you need! ;)
Medication: Since this is a side effect of some HIV medications, you may want to speak with your doctor about changing from a neurotoxic drug (d4T, ddI, or ddC). There is, however, no medication right now to help repair nerve damage caused by this. (Editor: but there are some antidepressants which serve as pain killers which can be effective. See here under "prescription drugs.)
L-acetyl-carnitine (also called acetyl-l-carnitine or acetyl carnitine) – It has the benefit for fitness and physical health but has the added benefit of helping to support the central nervous system.
B12 – Lack of B12 can also play a major component in this/ There are many ways to supplement more B12 into one’s regime. My personal favourite is through injections but there are many other ways to take this.
Rattava 412 – specifically designed to help alleviate HIV neuropathy symptoms. Made by Candian College of Naturopathic Medicine’s HIV/AIDS clinic at the Sherbourne Health Centre in Toronto. It’s a combination of antioxidants and multi-vitamins minerals specifically N-acetyl cysteine, Ascorbic acid (Vitamin C), alpha lipoic acid, selenium, B12 and many others
Dr. Huff, Chief supervisor of the clinic stated the primary component was n-acetyl cysteine and that 600mg seems to be the magic number amount so if the above is not accessible, then perhaps as a supplement is.
Poses I have found most effective have all been ones that alleviate pressure in feet and draw blood and lymph away from the extremities and back into the trunk of the body. These tend to be inversions, with three I found most effective. Based on ability you can choose which ones would work.
- Handstand, headstand, legs up the wall. Handstand and headstand should be attempted if you already have the ability to do so. I have found a longer count of 25-50 breaths helpful and come down and take child’s pose for several breaths to ground body before repeating or transitioning to something else.
- Legs up the wall is the simplest option. It can be done using the headboard on a bed. The heels or legs are elevated and the hips, lower back, spine, and head are on the floor. You can place something underneath hips or lower back like a pillow if that makes it more accessible. With legs up the wall you can stay there for 7-10 minyes; the feet may fall asleep at that point. Doing this in combination with the cold therapy may help.
Remember: Neuropathy is not the end of the world. This is just a part of living and I think of it as neither bad nor good, it just is. It may get worse as I grow older, but I embrace this as part of my life’s journey.
PS In moments when it’s really bad, I am reminded of the Grim story of the little mermaid and her fragility: “Never had she danced so beautifully; the sharp knives cut her feet, but she did not feel it, for the pain in her heart was far greater.”