Small Fibre Sensory Neuronopathy

1. marissa 26 June 2012 at 14:55PM
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   Hi was diagnosed with this condition last year which started 8 years ago as Peripheral Neuropathy, I have been tried on everything from pregabalin, gabapentin to lidocaine infusions , mexilitine etc, some didn't work others had very bad side effects. I am now receiving Ivig treatment every 3 weeks which is not a 100% solution but does help. As this is a very rare condition there is not much posted about it, I would be grateful if there is anyone out there that can give me any information about this condition. (I am a 57 year old woman) TY xx

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2. jen2009 14 July 2012 at 15:34PM

   Hi I dont know if we are suffering from the same thing..Ihave been diagnised with chronic Neuropathic pain disorder.I have been taking Pregabalin or 3 mnths now with varying results over the weeks..I find it difficult to explain the pain but it feels like toothache and headache with pain when you rest your head say on your arm etc....My family are being very understanding but they dont really undertstand somitimes I just retreat to bed just for the quiet and dark I has impacted on my life. I am 40 and almost a recluse now..Would love to be able to speak with somebody who knows the pain I feel. Jennie

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3. marissa 16 July 2012 at 15:20PM

   Hi Jennie

   I think my condition is different from yours, you do not say what parts of the body your condition affects and can you explain the varying results you are having with pregabalin. I can understand your frustrations in feeling that know one understands you I have been down that avenue myself you can feel really alone, Neuropathic pain is something I don't think anyone would understand unless they experienced it themselves

   My journey started eight years ago with a tingling in my fingers then progressed to my toes which then progressed to burning throbbing and shooting pains in hands, lower arms, feet, lower legs and a tingling in my face and perineum, two years ago I experienced problems with my bowels and bladder

   Unfortunately I have been tried on every medication under the sun from pregabalin, gabapentin, amytriptiline, lidocaine infusions, mexilitine and a host more but a lot didn't work or I had very bad side effects, my neurologist decided I would go to London to see a professor at Hammersmith Hospital who actually diagnosed me and suggested I try the Ivig treatment which I receive every three weeks it is not a hundred per cent but brings the level of pain down to something I can just about live with. (I have got a weird body orther people can live with a lot of the other meds)

   I would suggest you find as much as you can to read about your condition it will give you a better understanding of what is going on in your body, also get some information and give it to the family to read which will give them an insight into what you are going through, you can always ask your GP about any pain management programs near you at least you would be meeting other people with chronic pain and have the support of the health professionals that run these programs. There is an American site called Neuro Talk which is an excellent site it has a forum for peripheral neuropathy alone there are so many knowledgeable people on there.

   When did your symptoms start and where, are you happy with your GP and Neurologist, are you having problems with the pregabalin, do you understand your condition? Keep in touch and tell me your journey, at least you know there is someone here to listen and understands your pain............ tc

   Marissa

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