Neuropathic pain pays a visit (and natural remedies come to the rescue).

[Maya23]

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.

[mstr]

Wow Dryad, that's fab news. Glad to hear it is working. I would love to give something like this a go but feel a little overwhelmed by where to start. If there was a few things I could do to minimise flare ups with homeopathic things what would you recommend daily. At the moment on placquenil and methotrexate and would not come off without consultants advice but in the long term I have hope of doing what you are. Glad to hear it is working x.

[Maya23]

I am not qualified to suggest anything really. I would recommend finding a good nutritional therapist if you want to alter your diet first. Or you could ask your GP to refer you to a homeopathic hospital (they do exist!) so you can get treatment there. A friend of mine who has ME and 'borderline Lupus' has had some success with homeopathy. Follow your gut feeling. Good luck

[mstr in reply to Maya23]

Thank you.

[Maya23]

I'd like to add something to my post. I was naive in thinking that I could just start taking the Tanalbit to start killing off the Klebsiella in one big hit. I've had a big 'healing crisis', as they call it, as the body tried to eliminate the toxins and had to stop taking it. I'm in another horrible flare and everything hurts. I've just had acupuncture and my acupuncturist told me that my body is too weak to eliminate the toxins right now and so I can't try again until my body has recovered from the flare and has gained some energy. Each time I start eliminating again, I am likely to have another healing crisis as the toxins move out. This could take some time. Years even. But he knows of someone who used a similar method (using Tangerine oil) over 18 months and cured herself of lupus. So I feel rather daunted about the road ahead, but I feel like I've just got to give it a try. Particularly as I can't tolerate the drugs so I feel like this is my best option for now.

[knowles8586]

Ihave pain like nettle rash and vestibular migraine pins and needles in my hands somtimes cramp in my thighs

[knowles8586]

What helps?

[Maya23]

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, which in turn reduces the nerve symptoms. 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 also take a tincture called 'Dormeasan Sleep' by A.Vogel (available from health food shops) which helps me to sleep better when I'm in a flare. It contains valerian and hops. Always tell your health professional if you are thinking of taking a natural remedy as some drug interactions are possible. I hope that helps.

[Maya23 in reply to Maya23]

I would also recommend trying Mindfulness meditation as it has been shown to reduce chronic pain by half. I use it and it is very helpful at relaxing the body and reducing tension and pain. Ask your doctor to be referred to a MBCT course in your area.

[Slowmo]

Hi Dryad, I'm so impressed with the dedication you show to your diet and alternative therapies. Like many others I take a cocktail of prescribed meds daily and would love to change this. As a result of your post I've made an enquiry about a mindfulness course running in my area and hope to explore this option soon.

Well done to you, hope you continue to feel well.

[Maya23 in reply to Slowmo]

Hi Slowmo. It's really great that you've made that step, I hope you find it helps you as much as it's helped me. I've found it to be a long journey finding my own way towards optimum health, but each small step has taken me a little further along the road in the direction I wanted to go in. Mindfulness can be tough at first as we become aware of all our negative thoughts racing around inside our heads but it's worth persevering with, after some practice it gets easier to quieten them down and enjoy feeling relaxed. Good luck x