Pernicious Anaemia Society
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Help Please. B12 deficiency peripheral neuropathy. Now nerve conduction report, small fibre neuropathy. Excruiting pain what will ease this.

Hello, I have not posted for a few months. Sorry if this sounds long winded but I really need help. B12 deficient diagnosed 2 years, 2 injections weekly. My condition has been worsening over the last months. I had an appointment with Neurologist in late February, she diagnosed peripheral neuropathy and arranged nerve conductor test. she prescribed Amitriptyline. Within days I was talking suicide. I came off those, my GP prescribed pregabain. Again bad side effects and came off these. GP then prescribed Gabapentin, which I have been afraid to take. The nerve conductor test showed:

Sensory response: Attenuated in bilateral peroneal and absent in bilateral sural nerves. Within normal in bilateral median and attenuated in bilateral ulnar nerves.

Motor response normal

EMG Normal

The neurologist doing the test reported that although I had symptoms of peripheral neuropathy they were more in keeping with small fibre neuropathy.

My symptoms had not improved really even with the b12 and I now believe it is the small fibre nerves which are causing these excruciating symptoms. Over the last few months the symptoms have gathered speed. The sensations have moved up to behind knee. Burning, stabbing, ice cold, like razor blades up and down,legs cramping, spastic toes, also the banding at ankles and wrinkly socks sensation in feet and now up at knee. The symptoms now in arms and hands. Really worried about hands now as I have not been able to make my work. Burning now in face and tongue and throat. Burning and nettle pain, very dry eyes. I have just started taking evening primrose capsules, benothiamine, along with my D3, multi vitamin and my injections. Please does anyone know any medication or vitamins which can ease this pain as I am in constant agony and just cry all the time. I believe there is no treatment for small fibre nerves and it is progressive, I am really worried. If anyone has had similar symptoms and able give me advice or information or to find anything to ease pain, please let me know. Thank you so much. Potter5

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Are you getting enough Folate to work with the B12 ? Maybe a good B Complex would work better than a multi-vit - as they often contain unpleasant fillers.

Are you still on two injections a week ?

How is your back ? Many problems in the legs can stem from the spine.

More knowledgeable people will be along soon ....

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Thank you for responding Marz. Yes folate is included in daily multi vitamin, 200mcg and folate levels were I think around 13 last blood test. I still have 2 b12 injections weekly but as I said I have made little improvement and symptoms and intensity of constant pain worse. Not too much b6 in multi vitamin and have started 150mcg benothiamine and evening primrose oil

I think with a diagnose of small fibre neuropathy this fits with symptoms and I am worried about progression with no means of halting his. I had thyroid checked some months ago and it was fine, have been gluten free over a year as gluten aggravates the nerves, also eat no sugar other what is in fruit. I drank wine for years and now worried that it has caused the small fibre neuropathy,do not take alcohol at all now as again spikes the nerves. I don't know what more to do. The pain is every minute of every day. My back is fine thank you. Had CT scan of bowel 5 weeks ago, still waiting for results. I am hoping if anyone has been diagnosed with small fibre neuropathy then can give me some advice. I have been reading everything on internet, eyes sore from looking at screen but nothing points to treatment which will resolve this. Contacting this site is my only means of expressing my daily existence. My partner and sister look at me with such sadness at my distress and are unable to help me. I am sad at this debilitating condition I am in when there is so much I want to do. Sorry for rambling. I hope you are in good health and warm in Cyprus. Thank you again. Potter.

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healthunlocked.com/pasoc/po...

A year ago we had a conversation - as per the link above. I asked about your Thyroid and at that time your TSH indicated you were Hypo. Did you test more than the TSH ?

thyroiduk.org.uk/tuk/about_...

The above link takes you to Thyroid UK - main website - and the many signs and symptoms of Low Thyroid. You do not need all the symptoms :-)

If you have Hashimotos - I know from experience the overall body pain is horrendous and feels as if you are carrying two sacks of coal around ! I am now optimally treated for the thyroid and have taken my 3rd yoga class this week earlier today - so at 72 that is quite good ! I was once someone that slept for hours each day - gave up my career - and more - so please explore beyond B12 Deficiency....

Happy to help :-)

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Hi Marz, yes we did speak last year and I had thyroid checked. January 2017 Serum free T4 15.3 pmol/L range (10.6-23.2)

TSH evel 4.21 mU/L range (0.3-4.2) high

Again tested December 2017

Serum free T4 level 16.2 pmol/L range 10.6 - 23.2)

TSH 2.56mU/L range (0.3 - 4.2

The thyroid peroxidase AB conc 14 IU/mL <34) I think this was the antibody reading. Doctor thought this was fine. Please give me your thoughts on these results.

It is wonderful that you have been treated successfully and well and enjoying life. I just feel at moment everything out of control. GP has just prescribed duloxetine and tramadol don't know if you know how successful these are at treating small fibre neuropathy and the moment, I am desperate but frightened of starting a drug that will compromise me further. Thank you again. Best wishes Potter

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Were both these tests taken at the same time of day and both fasting ? The TSH is sensitive to eating and is highest in the morning ! The TSH was over range in Jan 2017 when you were clearly HYPO. A TSH in a healthy person is around 2. Also the FT4 should be around 20 so again indicates the thyroid is struggling to produce T4.

In December the TSH is more acceptable - ( what time of day ? ) - however the FT4 has not improved.

The TPO reading is negative for Hashimotos - but there is also another Anti-body - Anti-Tg which is rarely tested by the NHS and so Hashimotos is missed. I see this situation on the Thyroid UK forum quite often. Your TSH is swinging - so something is going on ....

The MOST important test of all has NOT been done - the FT3. T4 is a storage hormone and does little in the body. It must convert into the ACTIVE thyroid hormone T3 - which is needed in every one of the 13 trillion or so cells in the body - so if it is low in the range there is simply not enough T3 to go around. Low T3 Syndrome is a condition - google it !

So without testing it how does your GP know you do not have a problem. Without wishing to sound like a nutty person - I can tell you why. T3 is being stopped in the UK as a medication due to cost. 258 GBP's for 30 tabs - something I can buy here OTC for a euro. So lives are being ruined - careers and homes lost due to the greed of Big Pharma and the weakness of the government who have done absolutely nothing. And so people remain unwell - like yourself - and are prescribed loads of other pills making big dosh for Big Pharma. Time to take control and make changes.

Private Home Testing Kits are available through Thyroid UK - used by 1,000's on the TUK Forum - it is the only way to get the full picture whilst the NHS continues fail patients with inadequate testing. See link below ...

thyroiduk.org.uk/tuk/testin...

if you have the Private Testing done - you may wish to post on Thyroid UK - where there are around 80,000 members willing to help and support :-)

Happy to help ...

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Hi Marz, Thank you so much again for all this information. I will be seeing the locum who took the last test in a couple of weeks time, she is more open to testing, I think, than my GP so will put it to her. I spoke to my GP earlier today because I was in so much pain and was unable to get an appointment. I was crying on the phone in agony, the first thing she said to me was. I think you are depressed. I said absolutely not, I am distressed because of level of continuous pain. I knew exactly what medication she was going to offer next, Duloxetine, because I had already looked up the protocol. When I said to her that I thought it was a dangerous drug she said absolutely not and is used for diabetic neuropathy. I don't have diabetes although cannot tolerate sugar, that's next to be tested. However, I am home with duloxetine and tramadol. Never taken tramadol before. But just now I am desperate. You are so right about Big Pharma. If I can get the pain down I can function. Thank you so much again. Potter

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Even if your GP is more open to testing - the ones that are important are not done within the NHS - as explained above 😊

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Oh yes, of course, another trip down the private road. It's what you have to do now it seems. Thanks again Marz. Best wishes Potter

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I am able to go to the GP here - pay 25 euro - he ticks the tests I am allowed through their NHS - I then take the form to the Blood Testing Clinic a few doors away having ticked the additional tests needed for which I pay. A simple system. Sometimes I go straight to the Blood Testing Clinic :-)

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Think I need to move. really think I need to move. But I will list all the tests you suggest and ask her if I can have them done privately if she signs off. I will let you know outcome. Thank you again. Best wishes. Potter

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Omg please don’t go onto duloxetine, horrendous side effects and crap for neuropathy pain, try cbd, turmeric, a tens machine and Epsom salt baths xx

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Hello Ribblevalleygirl, thank you for reply. I have the packet unopened and have read so much about the bad side effects I am not going to take them.I knew when I spoke to my gp on Friday what she would prescribe me as I had already looked up the protocol. I said to her I thought it was a really bad drug and she said no, no, it was well tolerated, she also said if you take my advice you will take it but it is your choice. I also got tramadol. I have never had these before either and they are still also unopened, not sure how they would affect me. I do take cbd oil daily but haven't the last few days in case I have to take the tramadol. I am really bad at the moment, I think the small fibre neuropathy is progressing and it is now up to knees and hands and feet stinging and fingers stiff. My ankles locked this evening and I was barely able to walk, excruciating. I have just ordered turmeric and hopefully it will come tomorrow. I also take magnesium. I will look at tens machine and epsom salts. I have also just started taking benothiamine and evening primrose oil. At the moment feet and legs feel like someone is pouring boiling water over them. Thank you for advice on duloxetine, I hope it didn't do you any long term damage. Kind regards Potter

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Hi,

Have you looked carefully at the amount of each vitamin in your supplements? I have read that taking too much B6 (pyridoxine) can potentially cause peripheral neuropathy.

nhs.uk/conditions/vitamins-...

I have read that drugs such as pregabalin and gabapentin may affect B12 and folate levels. A search for "B12 deficiency anti-epileptic drugs" should throw up some links.

I wondered if following charity/organisations might be of help.

thebraincharity.org.uk/

neural.org.uk/

brainandspine.org.uk/inform...

Has GP/specialist excluded other causes of neuropathy eg diabetes?

patient.info/health/periphe...

patient.info/doctor/polyneu...

I sincerely hope you find a way to manage your pain.

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Hello sleepybunny, thank you for reply. The multi vitamin is seniors multi vitamin from Holland Barrett, nothing too extreme. I did take b6 supplements as a young women, not sure of dosage but hadn't taken it for years prior to this. Also in my late 20s I had shingles this may be a contributor. Was checked for diabetes, it's fine although I can not tolerate sugar. Causes cramping and spasm that result in me in excruiting pain unable to walk. Thank you for the links. As regarding pregabalin and gabapentin, these drugs frighten me. I haven't taken the gabapentin and almost every day I am tempted then read more about the side effects and don't take it. Worried about further complications. Read it can cause osteoporosis. I am small boned and that's the last thing I need on top of all this. But i am desperate for help and ease of pain. This just seems to be out of control at minute and I don't see how to cope with it if the small fibre neuropathy is progressive. I appreciate your reply and response. Thank you again. Potter.

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There's a lot of information here: ncbi.nlm.nih.gov/pmc/articl...

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Hello Frodo, thank you for reply and this link. I have read it and it is interesting about glucose intolerance. I am not diabetic yet cannot tolerate sugar as this spikes the nerves. The treatments shown are those which have been offered to me. Spoke to my GP about an hour ago. She is now suggesting Duloxetine. Again when I research this drug it sounds dangerous and very difficult to get off. At the moment I am tempted to take anything but afraid to be put in a worse place. I hope if anyone who has used this drug may contact me. Thank you again. Kind regards Potter

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Hi Potter 5...maybe you should slowly wean yourself off all vitamins and see how you feel. A family member of mine was taking all sorts of vitamins and continually suffered with burning feet for years and years..I did tell her she was taking too many vitamins and to stop but she would not listen until she got tingling down her left arm. She finally stopped taking them and the burning is gone. Something to think about...take care

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Thank you stayfocussed, you may be right. Like many people here we are self treating and trying to heal our nerves and to help symptoms which cannot be seen but torture on a daily basis. I think I must be swamped with b12 by now and at moments he symptoms are in my tongue and mouth and eyes as well as the rest. stinging and burning like bed of nettles. Unbearable really. I may very well have to consider backing off some of these. Thank you very much for reply. Kind regards Potter

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HIGH DOSES OF VIT D HELPED EASE MY PAIN since its an anti imflam, but long lasting results were found mostly in eating raw diet fruits n vegetables to detox out the acids.

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gg317 I posted this to you 2 days ago, but I think I posted it to myself. Hello gg317, thank you for reply. Yes I also take D3 2000iu daily and I think it very important. I also eat fresh fruit and vegetables, no sugar other that in fruit and gluten free for a year now. I just think at the moment this nerve damage is progressing at its own speed and I can't get relief of pain. GP going through the usual protocol and now offering duloxetine, she said earlier when I was crying to her on phone "I think you are depressed" I had to say to her no I was distressed at being in constant agony. Hopefully some relief son. Thank you again. Kind regards Potter

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Hello gg317, thank you for reply. Yes I also take D3 2000iu daily and I think it very important. I also eat fresh fruit and vegetables, no sugar other that in fruit and gluten free for a year now. I just think at the moment this nerve damage is progressing at its own speed and I can't get relief of pain. GP going through the usual protocol and now offering duloxetine, she said earlier when I was crying to her on phone "I think you are depressed" I had to say to her no I was distressed at being in constant agony. Hopefully some relief son. Thank you again. Kind regards Potter

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it took a long while to become the way you have, so it will take a while to reverse it but I can attest to it. I am doing much better, and am off of all meds to allow the detox to cure not hide my ails. best to you

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Thank you gg317, are your small fibre nerves affected, and have they not progressed. i am trying everything natural to try and recover. just worried about losing power in hands. Thanks again. Best wishes, Potter

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i had it real bad, my lymphs were not draining and my organs were not working, too acid. I can feel my feet now and pain is mostly gone. gone but once in a while it comes back while healing.

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I'm really glad you are on the road to recovery. I do think the natural route is a much better way. Thank you for video info. Makes sense. Kind regards Potter

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Cbd oil from brown brothers website for pain might help , or Holland and Barrett ( not as strong ) , a good pro biotic for the gut , pro7 from Holland and Barrett , turmeric tabs , give that a wee try X

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TarenaElizabethD, thank you for your response earlier, and thanks to Marz for sending it on to you, I posted my reply to myself. Thank you for advice on turmeric, I have now ordered the organic turmeric. Best regards Potter

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Have you tried supplementing with magnesium? It certainly got rid of my cramps.

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Hello rappers, thank you for reply, yes I also use Magnesium supplements. Magnesium maleate which is very good also I keep magnesium Better You spray by my bed for when my legs go into spasm during the night and rub it in. Magnesium definitely helps but at the moment it is pain levels off the scale and stinging burning in mouth and tongue and really severe nerve pain in feet legs and arms, hands also now. I think some sort of progression is going on and it is advancing somewhat. I hope it settles. I am glad the magnesium works for you. Thank you so much. Kind regards Potter

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TarenelizabethD, thank you for responding. I have been using CBD Brothers Blue Edition for the last few years. Really good, settles my head but at the moment the flare up on my system is off the scale. I think the small fibre nerve damage is taking its course of moving in the stocking and glove manner and I am feeling the consequences of this. I have noticed also that I am again sweating a lot but no sweat on feet or hands which would be part of the symptoms. I am 65 and never smoked in my life and if it wasn't for the major family commitments I have I would be looking to live somewhere warm where marijuana is legal and live the rest of my days in ease of pain and sunshine. What a dream. In the meantime I will try the pro biotic and turmeric tabs. Thank you again. Kind regards Potter

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TarenaElizabethD

Have tagged Tarena so she will see your reply :-) - you had replied to yourself above !! - I know when in pain it is so difficult to do things ....

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Thank you so much Marz, I would like Tarena to see my reply. I really appreciate the input and support from you and everyone. Heading out to get the turmeric tabs, tried everything else. So glad you noticed this. Best wishes. Potter

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I'm thinking of trying CBD Oil - had two e-mails into my Inbox this morning with details - one from a Yoga Newsletter and another from a Chemist that also sells LDN. Am thinking it must be a sign !

I take Turmeric capsules - make sure they do not have any nasties in them - organic is best - they also need to contain black pepper as they work together. I buy mine on-line from Vita-Premium - Amazon ! It may take weeks to have an effect :-)

Good Luck !

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A sign of intense spamming? :-)

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More seriously, have a look at this company as a possible supplier:

simply-cbd.co.uk/

About This Site

Currently nestled in the stunning Forest of Dean we run a registered animal shelter for sick and disabled dogs. ALL profits from the sales of CBD will go “Simply” to the building of the UK’s first Holistic run free dog shelter in rural Wales.

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Yes I have that site on my radar - passed to me by another member. The other was Dicksons Pharmacy in Scotland - the ones that fulfill LDN prescriptions.

dicksonchemist.airposwebsto...

yogajournal.com/lifestyle/h...

I wouldn't buy from the latter as importing to Greece could pose a problem from the US. Do not think either were Spam as I subscribe to Yoga Journal and have their Newsletters.

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Thank you Marz, I will get some.Rearding cbd oil, I have only ever used blue edition from Cbd bros. All I can say is it without doubt had a settling effect on my mood, It does not have any effect on this pain at moment. Again whichever you decide, check the amount of cbd, and make sure it is organic, some would be very weak and useless. I have not taken it this morning as I may have to take Tramadol which I have never taken before and would be afraid of adverse interaction. I will let you know how I get on with turmeric. Again thanks and best wishes. Potter

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Thank you for the info :-)

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Hi Marz, turmeric now ordered from Amazon. Thank you. Potter

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Hi there,

I hope you are doing better. I wanted to post these links for your consideration.

en.m.wikipedia.org/wiki/Cop...

ajnr.org/content/27/10/2112

ncbi.nlm.nih.gov/pmc/articl...

google.com/url?sa=t&source=...

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Oops, just send your reply to myself. Have done that a few times recently.

Thank you KimberinUS, this is very kind of you. I will go through all these links. Not great just now, I have been doing lots of research since conductor studies revealed a sensory axonal loss and small fibre neuropathy, which it appears does not respond to treatment, reason why after two years of 2 x weekly b12 no improvement in symptoms, which are now progressing to arms and hands. Really worried right now. But thank you so much for taking the time to send this info which I shall go through. Kind regards Potter

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Thank you KimberinUS, this is very kind of you. I will go through all these links. Not great just now, I have been doing lots of research since conductor studies revealed a sensory axonal loss and small fibre neuropathy, which it appears does not respond to treatment, reason why after two years of 2 x weekly b12 no improvement in symptoms, which are now progressing to arms and hands. Really worried right now. But thank you so much for taking the time to send this info which I shall go through. Kind regards Potter

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I live in the US , A diagnosis 13 years ago, started getting sick in the late 90s. have Been dealing with severe neuropa pain for on and off for years. Sometimes to the point of not being able to walk and take care of myself. Unbearable pain and burning and numbness... the type of pain I call praying for death pain. After years of physical therapy and a variety of meds and testing I have found that zonogram helps quite a bit- Prior to that I was using gabapentin but after several years it became inaffective. I also receive nerve block shots (steroidal) in my wrists once or twice a year when things become really bad and I become unable to use my hands or sleep at night. I have only been under the care of a pain management/physiologist for the last eight months and it has been a real blessing in my life. I did not want to be someone who was taking meds long term, but it is the only way I am able to feel normal and have any sort of quality of life. So I understand your sadness and frustration. 😢

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Hi Kaybeena, thank you for your reply. I am really sorry that you have been in so much pain for so long. It is very difficult to get the right sort of help and something which will ease your pain to a bearable level. I am always researching and trying to put connections together for triggers and also any thing which can deal with the pain. My GP has just agreed to let me try Lidocaine patches. She felt at first she would be unable to offer them as it would appear they may be removed from the NICE list in UK for certain conditions, but agreed a two week trial. The last week since starting using the patches on my feet and ankles is the first time I have had any reduction of pain in over 2 years and I mean they really have made such a difference. If I am refused to be able to continue with these I am not sure how I will cope.

I have also discovered that sugar and carbs play a major part in triggering pain and inflaming the nerves to the extent that my ankles lock and toes go spastic and I can barely walk. I am not diabetic. I am now looking at the glycemic Index of food. I try everything to help my condition. You are right, this can be wanting to die pain and this is so sad as I really value life. I had to explain to the GP that I was having to go out walking at night crying in agony to try and stop my ankles locking, Finding ways to potentially heal the nerves or at least slow the progression it vital.

I hope you continue to have success and ease of pain with your new pain management team. Thank you again. Kind regards Potter.

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Did you manage to get the additional thyroid tests from your GP - as discussed above ?? Or did you have them done privately through Thyroid UK ?

Glad the patches are working for you ....

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Hello Marz, I haven’t had the thyroid tested privately yet. I have an app with neurologist end of June and will get tested before that. So thank you. Also like the thyroid meds they are removing the lidocaine patches from the NICE list because of costs and saying they are not effective. But they are the only ease I have had in over 2 years and I have read many reports and studies from all over the world stating they are first line effective treatment for nerve damage pain, so that tells you a lot. I have an app with GP next week so I will have to go armed. I am in Italy on holiday right now and have bought some patches from the pharmacy just in case GP refused treatment. They are very expensive but can’t get without prescription in UK. I do not want to go back to excruciating pain. Also the warmth and sunshine eases things. I hope you are keeping well and enjoying the sunshine. I will let you know how I get on after GP app. Thank you again Marz. Best wishes Potter

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Wow - so glad you are having a fab time in Italy and chasing up supplies. Why are things so much easier in Europe ? My experience is they do not have the God Complex in the Mediterranean and understand we are ALL human.

One of my yoga pals was telling me her hubby is due to have a Prostate procedure here in Crete. He is a retired Pathologist and Greek - so had done his research. It transpired TOP MAN works only in the NHS and is the brother of the Female Doc who runs a local Taverna ! We went to see her last Saturday for a late lunch and within an hour her brother joined us for the first consultation over coffee. He arrived by motorbike - complete with helmet !! - very unusual here. Two days later we paid 40 euro to see him in his Clinic - blood tests two days later - and other tests again two days later - his operation is next Tuesday the 29th - wow - we are so impressed and all FREE !! We currently have reciprocal health care - :-)

How was the CBD oil for you - ? I am thinking of trying it for hip pain :-)

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That is wonderful Marz, and how it should be. The CBD oil does not ease my neuropathy pain what it does is help with anxiety and makes me calm. Personally not sure that it would ease hip pain but if you intend trying it go for a good quality CBD oil. Kaybeena mentioned earlier about her pain that was praying to die pain and for me that is how it is at times.

When I was in my late 20's I had shingles. I was feeding my fourth baby at the time and the only treatment was some sort of cream. The pain from the nerves took about 4 years to ease and I remember thinking how could you feel so ill and in pain without dying. The pain I am experiencing now, is I just want to die pain, off the scale. And as I said before so sad as I love and treasure life so much. However, I will do all I can to help ease, heal or slow down the progression. Right now happy to be lying in the sunshine. Best wishes. Potter

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ENJOY :-) x

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Oh I feel for you - I really do. I have 'been there' but now a cocktail of B12 injections, pregaberlin twice a day, plus condeine and amitriptyline at night has helped beyond belief. Ihad to keep trying different things - but this now works for me.

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Hi jillcur39, thank you for reply and for your empathy. I am sorry you have been in such pain. I am so glad that this site enables people who are in the same situation to share their experiences, without this we certainly would be in the wilderness. I am glad that you have been able to tolerate these medicines and they are helping you. I have tried them and they had very bad side effects so not able to tolerate them. The lidocaine patches really help me and have eased my pain considerably. My only fear is that next week when I go back to GP I will be refused to continue with them, the issue would be the cost. Again, thank you for your concern and I hope you continue to keep well. Kind regards Potter

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Cannabis oil amazing try it It hemp oil in this country but fantastic along with magnesium oil working well for me

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Hello may61 and thank you for reply. I have been using CBD oil for over 2 years it is very good for having a calming effect on my moods but does not alleviate the spacitity and cramping. I also take magnesium maleate each day. I am in the UK so actual cannabis oil is illegal although there is a medical marijuana Sativax which is, sparing I believe, prescribed to MS patients for spacitity when other medications have failed but this wouldn't be available for me as I don't have MS. I have been looking very closely at the debates on the legalising of marijuana in the UK and I believe the full cannabis oil would potentially help my symptoms but sadly I don't think this is going to happen. I can't remember the last time I had a full night's sleep and not been wakened up by firstly my toes going stiff which triggers the spasms, and my calf muscles go as hard as an apple, ankles lock and I am in agony. I am pleased the cannabis oil is working for you and that you continue to improve. Thank you again for your reply. Kind regards Potter

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