The Truth about Neuropathy and HIV

Oh my God...this is it exactly! Some people are so good at describing how neuropathy feels! From a blog called 'Surviving Aids & PML' with the subtitle: 'HOW TO GET OUT OF MY OWN WAY Accepting who I AM...letting go of who I WAS. Trying to figure it all out.' (see link below)
Somebody wrote in a comment on this post: "So, Neuropathy is like watching 'Lost?" You could say that yes!

THE TRUTH OF MY NEUROPATHY April 15th 2011

I have tried to explain neuropathy to others, to mostly non-HIV folks who are not in step with the various aches & pains of those of us who have been living with HIV , nor those unfamiliar with the same pain of those who live with MS, Diabetes, and a plethora of other neuropathy associations. Trying to describe the pain itself EVEN to someone who is knowledgeable of these matters still seems like a monumental task. I am not dissing you for not knowing, sometimes even I don't know, just let me try to explain: to me, the pain of neuropathy is sort of like a television show; you never really know who going to make a cameo appearance, who is a regular cast member, who is guest starring, who is the summer replacement, when is it on hiatus, when does it begin repeating previous episodes..... a strange analogy, but that is how it feels to me Somewhere, we are not quite sure exactly where, it is arbitrarily decided how it all plays out. At times, my feet feel like they are huge blocks of ice, or my calves are burning, or there is a pain shooter up my entire leg, or my feet feel like they ares on fire, or my calves feel as if a thousand needles have become embedded in my leg, or it hurts to even just trying to move, my feet are unbearably itchy & I scratch uncontrollably until I bleed (which I do not feel)). Yet there is still a sort of stigma ( THAT F..ing word AGAIN) even among the neuropathy educated, that the pain just cannot be THAT bad. But it is. Believe me when I tell you that I am incapacitated because the pain is almost unbearable. The neuropathy that I have is most likely due to the fact that I was in clinical trials with the earliest HIV drugs, pre HAART, pre-cocktail, pre-almost everything. I was given the ones that were later discovered to be the most toxic d4T-(zerit), those big disgusting chalky DDI tabs, ddC, AZT, Ziagen (still take),Norvir (still take a low dose), HIV itself (still have) plus I have been on many, many other HIV meds. Plus the earlier combo drugs were later found out to be even
MORE toxic if used together, like in the clinical trials that I was in that were the beginnings of combination therapy. So I have many factors not in my favor I do not begrudge being a part of these trials. They probably played as part in my current longevity (despite the rumor that I am way tooo curmudgeonly to die).

I have been to 3 pain clinics, I am on a boatload of meds to combat the neuropathy (Neurontin, Lyrica), tried many pain medications, even a pill form of methadone (synthetic heroin), which although very effective, also VERY addictive, it took me a year and a half to kick ( Pure HELL). The last pain clinic, where I refused to rely on any pain meds, was by far the most effective. I learned holistic, NON narcotic coping skills-meditaton, guided imagery, breathe work, qigong, bio-feedback, TENS unit, change thinking patterns, exercise, proper nutrition. So you see, to me OUR pain is very real. I've had to learn how to respect the pain, address it, or just rest. But NEVER to try to ignore it, as I and many others may have a tendency to try to do. This is REAL pain for lots of people. Believe us. It hurts.

http://pozrob.blogspot.com/2011/04/neuropathy-advanced-class.html

Fibromyalgia Or Small Fibre Neuropathy Are We Any Nearer To The Truth

Today's fairly technical post from bodyinmind.org (see link below) looks at the ongoing discussion as to whether fibromyalgia is caused by, causes, or is linked to, small fibre neuropathy. The article looks in detail at the studies and seems to conclude that while the relentless pain of fibromyalgia is clearly a disturbance of the central nervous system, it's not necessarily directly associated with the peripheral nerve system. I wonder how many fibromyalgia and small fibre neuropathy patients actually care and whether it's more a question of semantics that hard scientific fact. That said, for doctors and their subsequent treatment it probably is important to know what the root causes are because that affects how the patient is treated. One thing is sure, if you have either condition, you're probably suffering considerably.

Small fibre neuropathy in Fibromyalgia: cause or consequence?
March 8, 2016 by BiM 

Dan Clauw recently wrote an insightful editorial for Pain[1], in which he highlighted an important finding about the idea that people with fibromyalgia show signs of ‘small fibre neuropathy’. Changes in intra-epidermal nerve fibres (‘small fibres’) have been shown in many clinical conditions, including conditions that are characterised by chronic pain. So the idea that people with fibromyalgia show such changes is not revolutionary. However, the study Clauw refers to also examined the nature of the changes, comparing small fibre biopsies in people with fibromyalgia to healthy controls and to people with the classic signs and symptoms of ‘small fibre neuropathy’[2]. Unsurprisingly, the nature of the changes in fibromyalgia differ from those in classic small fibre neuropathy, which the authors interpreted as suggesting that the mechanisms driving the changes probably differ, too.

Clauw uses this as a springboard to point out that naming these differences in intra-epidermal nerve density as ‘small fibre neuropathy’ in those that don’t have the classic set of signs and symptoms of small fibre neuropathy is likely to cause confusion, because (a) it implies a causative link and (b) it ignores the subtle, but relevant, heterogeneity in morphology. There is sufficient evidence to firmly support the view that chronic pain conditions like fibromyalgia cannot be caused exclusively by peripheral disease: the central nervous system appears to be a major player. Indeed, it is far more likely that the central nervous system drives the changes in intra-epidermal nerve fibres (concomitant with probable changes in many other peripheral structures) that are seen in people with fibromyalgia and in other chronic pain conditions.

So what words should we use to describe these small fibre changes that seem nearly ubiquitous in chronic pain conditions? If we view the many central changes that are seen in chronic pain conditions as evidence of ‘neuroplasticity’, why do we not take the same view for peripheral changes? After all, Clauw argues, it is plausible that the changes in small fibres could be a response to a myriad of drivers. Whatever term we use ought to allow for the possibility that morphological changes in intra-epidermal nerve fibres are a side event to the main show; they may only be relevant if and when they match up with a patient’s history and clinical findings.

About Tory Madden

Tory arrived from South Africa to start her PhD at BiM. She is a physiotherapist who worked clinically before turning her focus toward research. She is interested in pretty much anything related to pain and neuroscience, thanks to some particularly inspirational teaching by Romy Parker during her undergraduate training at the University of Cape Town.

Tory’s research looks at classical conditioning and pain. She is also an associate editor for BiM. She tries to spend much of her spare time exercising to compensate for the vast quantity of chocolate that lives in her bottom desk drawer. Luckily, she loves trail running as much as she does food.
References

[1] Clauw, Daniel J. (2015) What is the meaning of “small fiber neuropathy” in fibromyalgia? Pain 156:2115-16.

[2] Doppler, Kathrin; Rittner, Heike L.; Deckart, Maximiliane; Sommer, Claudia (2015) Reduced dermal nerve fiber diameter in skin biopsies of patients with fibromyalgia. Pain 156:2319-25.

http://www.bodyinmind.org/small-fibre-neuropathy-fibromyalgia/