Small fibre sensory neuropathy

I am 100% sure this is what my problem is. Saw neurologist nearly two years ago because at that time it was tingling strange sensation in feet and calves, but nothing too painful. All he did was some blood tests and then sent me away - no follow up appointment.

At the end of last year I asked GP to refer me back as it was getting worse and eventually I received an appointment for mid-August!

Fast forward to April this year and the tingling has turned into excruciating pain in my right foot that I cannot get any relief from. It is painful to touch (even very lightly) and feels like electric shocks going off and razor blades cutting across the top of my foot and toes. Also, it wakes me up repeatedly throughout the night.

Last week OH and I were on holiday and basically all we do is walk with our dog. After two walks on the coastal path the pain increased by about 200%, so now it looks as though that is going to be off the agenda.

From everything I have read there is no cure for this and I just find it so upsetting:(

I am still nearly two months off seeing the neurologist and just know that he will fob me off again. I really don't want to go down the route of Gabapentin, Lyrica or Amitriptyline - my OH went through all of these and suffered some really bad side effects. As he is disabled I am the one working full time, so just cannot afford to be zonked out.

Please has anyone else experienced this type of neuropathy and how have you coped?

When it first started nearly three years ago my endocrinologist tested for diabetes, but said it wasn't that (I suffer from hypothyroidism).

Any feedback would be greatly appreciated.

Forgot to say, I took sublingual methylcobalamin vitamin b12 for a couple of years and last blood test was about 898 so I was told to stop. It didn't really help though.

Also forgot to say that my right foot very often feels freezing cold, but when I touch it it is quite normal

I have read that fish oil supplements can help improve nerve damage, so may try that. This is the article on it:

guardian.ventramediagroup.c...

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  • Your B12 blood test was possibly skewed due to the fact you had been supplementing. Do you happen to know the result BEFORE you started supplementing ? People need a level of 1000 to prevent cognitive decline. ( Book - Could it be B12 - by Sally Pacholok ) As you cannot overdose on B12 as it is water soluble I think it is a mistake to stop taking it. The amount that appears in your blood is not the amount that reaches the cells where it is needed - in fact only 20% reaches the cells.

    When you have neurological symptoms with Low B12 you should be given injections every other day until things improve. Have you been tested for Pernicious Anaemia ?

    I am on the Pernicious Anaemia Society Forum here on HU and read most days of symptoms like the ones you have experienced and are experiencing. I also read that at GP level there is so little knowledge about B12 and its treatment. I too have suffered with spinal issues having had the Terminal Ileum removed over 40 years ago.

    B12 Deficiency is a neurological condition when undertreated or misdiagnosed. Do you have any gut issues which cause poor absorption. Also Folate levels need to be good for B12 to work well in the body.

    b12deficiency.info/signs-an...

    Scroll down in the above link to view the list of neurological symptoms. The website will tell you everything you need to know about B12 - including the additional testing you may need.

    I am not a medic - just a Hashimotos girl with a B12 issue :-)

  • I think it was about 238 or so, they said well within range at that.

  • Sadly not. If you read the link I posted above you will read that anything under 500 can cause neurological issues. I read later that you are also hypo and low B12 is common among thyroid sufferers. The range starts at 500 in Japan. So I would go by your earliet result and persue with your GP. Learn as much as you can from the website I posted.

  • Yes but like I said I did supplement for two years and so surely this would have resolved any B12 deficiency. What do you think about the fish oil option?

  • How long ago did you cease taking the B12 ? It can drop quite quickly. Please do go over to the PAS Forum and re-post your post so that people can help you ....

    healthunlocked.com/pasoc

    Fish Oils are good for many conditions but not for maintaining a B12 level of around 1000 ....

    My B12 level was around the 300 mark for years and I was told all was well. Once I had joined Thyroid UK and started reading and learning for myself I realised that the spinal surgery I had in 2007 for stenosis - had possibly been caused by low B12 and the de-myelination of the spinal cord. B12 is involved in the myelin sheath that covers the nerve. When this breaks down - then the nerve pain begins....

  • Probably a few months, but I do have the odd one now and then.

    Following your post yesterday I have ordered a new jar of B12 and will start taking them on a daily basis again. I seem to remember that you cannot overdose on B12, is that right?

  • ... you are right - you cannot overdose as it is water soluble and any excess is excreted. Also take a GOOD B complex to keep all the B's in balance. B12 works with Folate in the body - which is usually in the B Complex.

    B12 can deplete Potassium in the body so eat a banana each day or some other food containing potassium Magnesium is also good and most of us are LOW. You can buy a spray oil of Magnesium by Better You.

    Good luck :-)

    Do you have any gut issues that could be preventing the up-take of B12 in the Terminal Ileum. I had mine removed over 40 years ago - but they forgot to tell me I would need B12 injections/treatment for life ....

    B12 molecules are isolated in the stomach and bound with Intrinsic Factor to send the B12 on its way into the dueodenum and through the bowel to the Terminal Ileum where there is uptake and it is then sent back to the liver - to start the cycle again ! Clever stuff.

    Most of the B12 made in Europe goes into animals ! - they often say on the Thyroid Forum that animals are better treated than humans.

  • Thanks for all of the information.

    I also started supplementing magnesium a couple of years ago by way of Mega-Mag ionic liquid. I also have magnesium oil in, but haven't felt any benefit from that, which is why I have ordered the Epsom salts to soak my feet in - covering all bases:)

    I read that, I think it was vitamin B6, can actually cause neuropathy symptoms and so haven't bothered with a B complex.

    I do eat a fairly balanced diet, so just hope something helps to calm it down. I certainly don't want to go down the Epilepsy drugs route.

  • If you stick to the suggested dose of B6 you should be fine :-)

    So many good things going into your Body - hope you soon feel stronger :-)

  • I'm currently trying to get a diagnosis for similar symptoms. Blood tests have come back positive for p-anca antibodies, and urine analysis shows protein. So mine is possibly vasculitis.

    Get as many blood tests as you can to rule out as much as posssible.

    I wish you well and hope you get a diagnosis soon.

  • Good luck to you too TallKeith.

    I have to say this nerve pain is something else - worse than childbirth because at least that has an end to it.

    I have ordered epsom salts to soak my feet in, high strength fish oil capsules and a new stock of Solgar B12, so fingers crossed that it will at least help.

  • I ve had similar problem for years, if you have damaged nerve ends in feet, that can cause pain at night depending on what you physically do during the day, I play golf so I expect some irritation during the early morning hours , but after years of self diagnosis I have found that if I do NOT eat any food that contains GARLIC- WHITE SPIRIT VINIGAR-TOMATOE PUREE- (unfortunately most micro oven products contain these ingredients,) I have a stress free nights sleep, for example I can have fish chips with plenty of salt and MALT VINIGER , I have an undisturbed nights sleep

    I like many people used to enjoy pizza but most are served with so much garlic you could swim in it, so keep a diary of what you eat or drink and how your food affects you sleep. (most doctors will prescribe gabapentin etc.) you will find out what food causes you most grief, it has worked for me and I hope you have the same success . regards bb

  • Thanks for your reply bobdog (my dog is called bob:))

    The pain changed from a dull tingling sensation which has been pretty consistent over the past nearly three years, to in the last couple of months, for no apparent reason, an extreme burning stabbing sensation on the side of my right foot, two smallest toes and top in front of those toes. I have got to the point where I absolutely hate going to bed - I never sleep for more than about 2 hours and wake up in such pain that I feel physically sick. I can't bear even a light material touching that area it is just so sensitive. Another weird thing that happens is my feet feel as if I am standing on a block of ice - absolutely freezing cold - but they don't feel cold when I touch them.

    It was actually bearable until, as stated in my original post, we went on holiday and did two quite steep long walks on the coastal path. Since then I just cannot get it to calm back down.

    Will take your comments about garlic/tomato puree on board.

    Do you take anything for the pain? I was hoping to get some kind of local anaesthetic cream to use as and when required, but probably won't have any luck.

    I wonder if hypnotherapy would help - I keep telling my self that it is just my mind playing tricks and there isn't really anything going on with my feet, but I can't quite convince myself as it hurts so much.

  • I don't take any thing for the pain but if I am awakened during the early hours I rub the area of discomfort with any muscle rub cream I have to hand ie MOVELOT -_ MOVECOL _ IBRUFOPEN or any of similar products and the discomfort gradually eases within 30 minutes or so but I don't have to endure the pain if I watch what I am eating as explained in my earlier reply I hope this helps.

  • I have b12 injections every 3 months but that does not make any difference. Sue e.

  • Have been in so much pain today that I had a phone consult with GP.

    Told him I really do not want to take Gabapentin or Amytriptoline and after some thought, he suggested he prescribe me something called Tramadol, which he says can be used on a "when needed" basis. I am very drug averse and try to avoid taking anything in the way of drugs, but today I was in such pain at work, I just need to have something to take the edge off the pain.

    Have any of you ever tried Tramadol and, if so, did it help in any way?

    Thanks.

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