I've been experiencing all sorts of strange pains and sensations over the years, but more recently with this latest flare I had them all at once and all over my skin. I would describe these pains and sensations as 'nettle rash like tingling over my skin, electric shocks (that can take my breath away), being jabbed with needles', and some numbness and tingling too in my fingers. I spoke to my GP and he agreed with my own conclusions , that this sounded like small fibre neuropathy (SFN) - (I found it on wikapedia). He said there was not much point being referred to a neurologist as they'd probably just give me this same diagnosis, and with my track record of not being able to tolerate drugs, there would be little they could do to help me. I agreed. So, now I know that Lupus can be an underlying cause of SFN and if I can get this flare under control then it will calm down.
So, I'm a bit relieved to know what the pain is, but, after the initial relief of knowing, I feel quite down about it. So far my symptom history has been to get a new symptom announcing itself quite loudly, then it quietens down but never fully goes away. This means that over time I seem to be collecting a rather noisy and out of tune orchestra of symptoms! I'm a little worried that this will continue in the same pattern and then how will I be after another 10 years? I'm only 41 and so I've got a lot of living to do yet! Has anyone else had these symptoms? If so what was done about it?
I would like to add that despite not being able to tolerate any drugs, I am having some success with using fresh root ginger and manuka +10 honey (chop and simmer the ginger root for 20 mins, then strain and add the manuka honey, then drink as a tea/cordial). This seems to help with the inflammation. I also drink anti-inflammatory herbs every day (camomile, yarrow, calendula) and avoid gluten, and these have reduced the amount of inflammation steadily over the past year. I use 'white willow bark' tincture (natural aspirin) as a pain killer too. I can also sometimes tolerate taking an ibroprofen if there's more pain than usual.
I've also had some new tests over the summer that I paid for privately. It turns out that I have a bacteria in my gut called 'Klebsiella' which has been implicated in causing ankylosing spondylitis, rheumatoid arthritis and other auto immune diseases. Here's a link to some info about it: drshrader.com/autoimmune_di...
The lab tested to see what would kill the Klebsiella in my gut, the results showed that some anti-biotics would work, and some natural compounds like Plant tannins too. So I decided to chose the plant tannins option and I'm feeling hopeful that as they kill off this gut bacteria, I might find that my symptoms diminish. That is my hope.