Reaction to Small Fiber Neuropathy Skin Biopsy

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Froggyhop

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Hi, I am not officially diagnosed with FM at this time, I have spent the last 19 months seeing different specialists and checking off boxes. It has been an interesting and also challenging process. Two days ago I had a small fiber neuropathy skin biopsy, and I am having a rather intense reaction to the small skin punch that was taken on my foot. First I would like to mention that I have read quite a bit about the connections being found between SFN and FM, research done so far indicates that about half of FM patients also have SFN. All of my tests have been negative so far; I have seen 2 Rheumatologists, an Orthopedic, a spine specialist, and am now on my second Neurologist (the first referred me to the second for this test specifically), and I was fully expecting this would also result in a negative test. After the lidocaine wore off I began having intense (painful) nerve zaps traveling from the area of the biopsy (top of foot) up onto the top of two of my toes. The feeling is strong, electrical and intense. I have never had this before. It is difficult now to get my foot into shoes. My entire foot feels like it is in a neural net that is zinging and pinging! Now I think that I probably do have SFN, and for some reason this small biopsy was enough to trigger me into the next level of symptoms. Very sobering as I was not having this level of nerve symptoms before. I am wondering if anyone here has had a reaction to a SFN skin biopsy procedure? My other foot also seems to be amped up now, not as much as the tested foot, but still activated. My whole body is actually triggered and I am not feeling well, my stiff hands are worse, etc. Any thoughts, insights, experiences would be appreciated, thank you...
 

JayCS

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First I would like to mention that I have read quite a bit about the connections being found between SFN and FM, research done so far indicates that about half of FM patients also have SFN.
Hi Froggyhop - I'm suprised and was going to protest... but I've found "A systematic review and meta-analysis of the prevalence of small fiber pathology in fibromyalgia: Implications for a new paradigm in fibromyalgia etiopathogenesis" (Grayston et al, 2019), saying "The meta-analysis demonstrated the pooled prevalence of SFP in fibromyalgia is 49%", where SFP is not Small Fibre Polyneuropathy (SFPN), but Small Fibre Pathology. (Amongst the researchers is German-Liverpudlian Andreas Goebel, responsible for the "FM seeming autoimmune" study 2021.)
Looking into the full article shows that of 935 articles that went into it, only 8 (7) articles satisfied the strict criteria, which were based on 222 patients. "the estimated prevalence ranged between 30% and 76%", that's what the average of 49% is made up of. From this they conclude that fibro is then maybe not just a disease of the CNS, the main hypothesis at the moment, thus challenged. So pain researchers like Irene Tracey in the UK are seeing both "ends", the peripheral (e.g. SFP/SFN - not sure if that's identical) and the central (CSS of the CNS).
How much SFP actually contributes to pain is unclear/controversial.

But taking all these lines of research into account, patients and researchers do well to continue to see them all as small parts of a big puzzle, which will have to do with nervous system outside and inside as well as the immune system, including the mast cells esp. in skin and gut.

Funnily tho, and that's why I was doubting it first: Altho nerve problems are often mentioned, the topic of SFN crops up only occasionally on fibro forums. It seems only a tentative co-morbidity there from patients' view. So I'd've reckoned about 10%, not 40% as has been cited on sites like healthrising.
So unfortunately you won't be getting much resonance about skin biopsies, altho 1 or 2 people have been getting SFN checked due to zaps etc.
What I can offer is a slightly similar experience: my jabs set off and thus revealed my MCAS, which ultimately may have originally been one of the main long-term triggers of my FM. So what set off as help became a diagnostic issue and process (there's a name for that which eludes me). In your case it wasn't meant to help, but it also wasn't meant to be a trigger, and you've learnt what you wanted to know the hard way - like me... I prefer it to be like when I took a med for RLS, which didn't help - but also didn't harm - sleep, so we knew my back/leg unrest probably isn't the slightest bit of RLS, without any side effects in the process. The only questionable comfort I can offer is that I'll need to be having more jabs, and that I've needed at least several months to recover from the first and probably now again from the second (wasn't fully "recovered" from the first, after 10 weeks), so I may never do so, whilst you won't need to be having more skin biopsies... ;-> -
I just hope your severe reaction doesn't last - is it showing any signs of bettering yet?
 
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Froggyhop

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Hi JayCS! Thank you for responding to my post! There is a website www.healthrising.org that has great, current research information on FM, ME/CFS, and Long Covid, which have interesting connections between them, including SFN. Boston is a kind of hot spot for this research, if you look up Dr. Oaklander you can read her ongoing research. My reading through posts on a couple of FM group sites shows a number of people mentioning symptoms that could well be due to SFN.

"Studies indicate that the presence of SFN exacerbates the symptoms of fibromyalgia. While the role SFN plays in fibromyalgia, ME/CFS, postural orthostatic tachycardia syndrome (POTS), and now long COVID is unclear, it could help explain the pain, central nervous system sensitization, and even autonomic nervous system problems found in these diseases."

I have only recently opened my mind to the possibility that FM could be what I am dealing with, for some reason I just didn't entertain it earlier, but I do seem to fit the criteria quite well, and easily pass the FM criteria questionaire they are using now. I would be happy to discover a source triggering problem that I could address and then improve all other symptoms, I don't know that I will end up being so lucky though...I suspect the relatively benign skin biopsy triggered my body into a far stronger reaction than would seem warranted, but then that is what happens with FM, and also what I have experienced in my feet, and nervous system when I have far stronger responses to stimulus than I should. Oddly, when the Neurologist thumps my patellar reflex I feel a strong nerve zap travel up into my torso, and then my arms jump! Weird. I have a higher than average pain tolerance, through training as a Ballet Dancer, 4 kids born through natural childbirth, etc. I learned to breath and work with my muscles and body, and I think this has been helping me now, along with daily practices that keep me flexibile, blood flowing, nerves inervated, heart beating, deep breathing, it makes a big difference. Along with a very strict health diet.

I imagine discovering you have MCAS was a really BIG step in your health journey! Discovering my histamine intolerance was profoundly helpful for me. Sometimes I ask myself why I need to name what is going on with my body, does labeling it really matter or make a difference? But something within seems to want and need to pursure the answer as I can't seem to let go of my pursuit to understand what is happening. I know something is going on, and I believe that understanding as well as I can will help me to help myself as much as I possibly can.

Thanks again for talking with me about this...
 
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