Pernicious Anaemia Society
15,938 members11,164 posts

Nerve Pain

I have been diagnosed with PA for 6 years now but missed my last B12 3 monthly injection and now have almost unbearable (nerve?) pain which is worse when I am sitting or lying down.Have to have some tests at the surgery in a cple of days to see if its neuropathic or vascular.Has anyone experienced this?.Nothing is helping with the pain at all,even Gabapentin.

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Have tried co codamol and codeine phosphate 30mg which I had left over from a previous time,nothing works.The nurse said to increase my Gabapentin by 100mg to 400mg daily,which has no effect,so I suppose I will have to wait until I have the pulse and feet tests tomorrow.I also get vertigo,which I see ,is a common complaint.Thanks

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Yes the nurse said the same,I guess I will find out more tomorrow

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HI cainburrows I'm sorry for your pain.

You simply cannot afford to "miss" your maintenance B12 injections and it may be that you will need loading doses again.

Pernicious means FATAL without B12.

Do you know what your Folate level is?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Thank you Clive alive,

I get told very little and think I am going to have to be more pro-active and ask more questions.I don't know what my folate levels are but will be asking more questions from now on.It was entirely my fault that I missed the last injection and I am sort of hoping that I will start with the loading doses again.Since I started the B12 injections I have never felt any benefit energy wise,still always tired but never had the neuropathic pains before now.I think I will definitely have to be a bit more pushy and educate myself a bit more regarding PA,no one seems to want to tell you much in the medical profession,so I am very grateful for this forum,which I came across quite by accident.Thanks again Clive for your advice,take care!

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You are certainly not "alone" cainburrows .

My doctor, when she told me I had P.A. in 1972 gave me two years to live unless I either ate raw liver three times a day or had B12 injections for the rest of my life and for the next nearly forty years I lived in ignorance of what it was all about as none of the nurses who gave me the injections nor the succession of doctors at my surgery ever asked me how I was "getting on".

It was only some six years ago, having noticed a return of some neurological symptoms in the run up to my next injection that I joined the Pernicious Anaemia Society and asked on their then forum whether I was the only person in the world with this problem my current doctor having refused to believe it was anything to do with the P.A. because I was getting the B12 injected and also refusing to increase their frequency. I was amazed at the response and NO! I was not alone...

I learned all I could take in about the disease and fortunately managed to persuade my "one size fits all" G.P. to alter the prescription.

You can join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

It costs but £20 for a one year's membership and is a wealth of information.

With regard to your Folate It is important that its level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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Thanks for all this info Clive,I certainly will consider joining the PA Society,if not now,very soon.It seems to run in our family.My mother had it and then got stomach cancer where they removed a great deal of her stomach and now she has the injections every 2 months.She is 83 and lives a very healthy life.eats small and often,walks a lot and keeps active.She also goes to a pensioners gym with my father,quite incredible and I take comfort in that.She told me about the raw liver,I like liver but it would be hard to eat it raw.

I am a carer for my adult daughter who has complex and numerous medical conditions as well as PA,diagnosed 2 yrs ago,so I have to be on top of this to be well.It is good to know that there is a lot of info out there which is invaluable as I think some of the doctors need a prod sometimes and what do they say-knowledge is power.

Best Wishes Clive Alive

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Cliveslive has given good advice as, for neurological symptoms to become this severe, surely means three monthly injections were never enough anyway!

There is information for professionals on the PAS site and, considering your history, pain and responsibilities, it would be worth asking the PAS if it would be possible to explain to your GP the serious consequences of permanent neurological damage if not treated urgently and adequately (see Dutch results in the pinned posts).

I do hope you find relief and better treatment soon cainburrows....

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Many thanks,I can see that I have to take this further.I cannot imagine how I would manage my caring responsibilities easily if this turns out to be neurological and permanent

Best Wishes and thankyou

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Baked liver, bacon, onions and gravy are on the menu next week and one of my favourites. :)

As Polaris suggests it would be a good idea to ask the Pernicious Anaemia Society to intervene with your doctor.

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Very nice meal on the menu for you!!

I am about to join the PAS,have a good chat with the nurse tomorrow,then the GP at my appointment next week,.I am very pleased and grateful about the advice I have received from yourself Clivealive and others.Thankyou so much!!!

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Hi,

Are you in UK?

Do you have neurological symptoms eg tingling, pins and needles, tinnitus, tremors, balance issues, memory problems plus others?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

In UK, people with B12 deficiency with neuro symptoms are supposed to get following treatment regime..

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

"but missed my last B12 3 monthly injection"

You appear to be on UK standard treatment pattern which is...

6 B12 loading jabs over 2 weeks then a B12 jab every 3 months.

I'm just wondering whether you are being given enough B12.

Details of UK B12 treatment can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

2) BSH Cobalamin and Folate Guidelines, treatment info a quarter through guidelines

b-s-h.org.uk/guidelines/gui...

Unhappy with treatment (UK info)?

Link about writing letters to GPs about B12 deficiency.

Point 1 is about under treatment of B12 deficiency with neuro symptoms. Link includes a template letter.

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world. Offers support and info about PA to PAS members.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

UK B12 blogs

May be relevant stories on these.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I am not medically trained.

I hope you get help soon with managing the pain.

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Dear Sleepybunny

Yes I am in the UK,thankyou so much for all the info you sent,I will certainly follow up on your leads,thankyou so much!

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sorry to hear about the pain - hope that the tests get you to being able to move forward on a treatment.

Not sure I can really do much but express sympathy - particularly as sitting and lying down are problematic - must be making sleeping quite difficult and stressful - and the day quite tiring if you are standing all the time - had a trapped nerve in lower back late last year which was pretty similar but at least I know what that was - but standing all the time was really exhausting.

Its a bit off the wall but some people (myself included) do find that meditation helps - it doesn't take away the pain but it does allow you to separate yourself from the pain.

this is a link to one guided meditation - though it does recommend doing the meditation sitting or lying on the floor which may not be ideal - but i'm sure that doing it standing wouldn't be impossible. Not sure that I'd go as far as claiming that it will definitely work - some people find guided meditations really irritating because the voices can be distracting, but it may be worth a try.

franticworld.com/huffington/

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Thankyou Gambit62

I will certainly give meditation a go,the nurse seems to think that if it is neuro pain,it will go once I have had my next injection tomorrow,so am hoping that is the case.I hope your trapped nerve pain has gone and thankyou for your thoughtfulness!

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the trapped nerve resolved in a couple of weeks - though was helped by naproxen

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At least your nurse seems to be good. Early after I was diagnosed one of the nurses decided to involve herself and convinced me doctor to make me wait past the 3 month marker for my injection so they could run tests and see if my symptoms returned. Had to wait an extra two weeks. Luckily this wasn't too long after having my initial loading doses and the doctor had given me more that what seems to be on the traditional plan here. Two weeks wait did see the return of my symptoms though not to the extent of before my diagnosis and the test showed I had a high amount of b12 stored. The nurse tried to argue that I didn't need my injection because I had enough but I said I still had symptoms so she was forced to give it to me apparently against her better judgement. Some in the healthcare system just aren't knowledgeable on the condition and some tend to dismiss pain as a crying wolf. I'm glad I found this page too as at least I now have the knowledge to fight with if anything changes.

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Hi Artemis88,

Like yourself I am new to this page and also joined the PAS,but late last night.Already I have found out a lot of information that I previously knew nothing about from kind people that are passing on their experiences and knowledge.I get tinnitus and can hear my (what sounds like my pulse)in my head,especially when my head is on the pillow,although that doesn't bother me so much.The pain in my feet and lower legs is chronic though and wearing me out as it is so much worse on lying down or sitting,so am looking forward to having my tests in a cple of hours.I havnt dared increase my Gabapentin to more than 400mg which I was advised to do and just hoping they can give me something else for the pain as it is acute and debilitating.I also learnt that Addisons disease which is one of the illnesses which my daughter that I care for has,is one of the illnesses where you can get PA which she has,although not the neuropathic pain thank goodness,and I hope she doesn't get.

Anyway ,I am feeling more optimistic,having heard other peoples experiences and in joining the Society and hope you feel the same way.We are certainly not alone and can educate ourselves in regard to PA,I certainly don't want it to take over my life.

Very best wishes to you!!

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I have b12 levels on the high side AND high folbic. No one understands why the folbic is high. I don't get much from food or vitimins as I watch that. Every doctor says high folbic is no problem. It's higher than they test for so I don't know how high. Any comments? Thanks.

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Hello Cainburrows,sorry to hear you have neuro symptoms as so many of us do,no that doesnt make it any easier for you but I found making the bed 'head' or top of your bed quite a bit higher than the bottom does help a bit.Like you found both Pregabapentin and Gabapentin did nothing but made me so out of it and with a doctors prescription of cinnarizine for the vertigo as well I was unable to string a sentence together and definitely not save to drive.Sitting down I find lifting alternate legs and rotating foot at ankle and also pressing down both feet hard on toes and raising heels then rock back onto heels.In fact any movement you can make takes the edge of that numbness and pain.Can be a bit startling if you are in company but explain and most people will sympathise, some will probably know someone who also suffers.Like you fighting to get GP to up doses from 12 weekly injections.Have you seen a neurologist?Keep working on your GP and Practice Nurse!!

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Hi wobblw,

I saw my nurse yesterday and she got me in to see the gp in the afternoon,mostly for the pain.The gp said that my folate is good at 23(I think) and my B12 at 1500 which she said is good.She also put me on Mirtazapine which is a night time antidepressant,although I am not depressed just worn out and fed up with the pain.I have a follow up in 2 weeks and she suggested I slowly increase my Gabapentin to 300 x 3 daily.I will ask about being referred to see a Neurologist on my next visit.

I think you are right about having your head raised a bit when in bed and I have been rotating my legs for some time when sitting.Initially my left one as I had surgery after a fall and broke 3 metatarsals in my foot and have a load of metal in it,had a bit of nerve pain relating to that,but nothing like this.I have had some quizzical looks from visitors with the leg rotating,but when I explain they get it.Oh and my GP said to dance in the house,and gave me a demonstration,well I havnt danced around the house since I was in my 20s,ha,ha!

I hope things improve at some stage for you

Best Wishes

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Hi cainburrows

How are you doing with the Gabapentin cannot even manage 1X 300 without being so dozy the next day,have found several medications I have used for years do not have the normal reaction anymore.PLEASE insist on seeing a NEUROLOGIST he/she will probably organise nerve conduction tests where they use a very mild electric shock(honest its fine and quite amazing) and probably MRI scans to check brain and spine.Sorry to hear about your ankle expect you were given excercises anyway so just look on the rotating as a warm up think as it helps if you have to sit a lot with computer etc.Like the sound of your GP hope he really gets this B12 deficiency thing as it is serious.I so regret not knowing how much when I think of how much my mum must have suffered and we as a family were so ignorant about it all.II dont eat meat which doesnt help but fish eggs dairy products any animal products have B12 in them.Word of caution if you have to have a blood test avoid taking B12 supplements as the GPs only seem to work on blood results and yours are good anyway.Keep pushing the symptoms although my GP has now decided its all because I suffer from SAD winter depression!Have lived with this for 17 years think these pins and needles would have been around before now!! Hang on in there we have lots of friends and advice around us.

Take care

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Hi wobble

Thank you for your kind words,yes there are a lot of PA friends out there with good advice,I am so pleased that I found this site.I am now on 200 x 3 times a day of Gabapentin,and as yet don't feel any difference pain wise,they don't particularily make me any more drowsy.Had my B12 on Friday and as usual don't feel "that boost" as tired as usual!I take the supplements and eat the right foods,love my veg,a bit of meat,and fruit-I don't think we could eat any better.Saying that I know PA is an inability to absorb the vitamins from the food,however I was hoping it would help with the neurophathy.I am going to ask to be reffered to a neurologist.

My mother who is 83 gets an immediate boost from her B12 injection,eats like a bird as due to cancer she had most of her stomach removed,but so pleased she has none of these problems.Just normal issues due to old age,but she also exercises at a pensioners gym.Amazing really and am so pleased for her!

Sorry to hear about your SADs,I used to be a Prison Officer and used to use a SADs machine as in the winter,working a 12 hour shift,we would get no daylight for days on end,I found it helped a lot.My Dad also swears by his.

I hope things improve for you!

Take care and best wishes,Christina

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Hi Christina

Hope you are having a 'good' day and managed some sleep I am older than you was a very fit active person wish I was again,Iad to change arrangements for the day falling snow and bright light from snow brought on 'flashing light's and vertigo so no driving till tablet takes effect.Moved away from friends and family for business and relationship reasons which didnt work out as I hoped, but travel every week to see stepdaughter and very old friends all live alone.Feel more angry then depressed today that B12 can do this to me.Use my light box every day my cat loves it sits next to me and nods off! Have neurologists appt tmrw about 4miles away will take vertigo tablet and hope she will agree that B12 d is the problem and she will tell GP regular injections are the answer!! Take care Ann

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Hi Ann,

Have just returned from taking my daughter for a routine apt at the hosp.She was in hospital recently with an Addisonian crisis,she was in a critical state,however they are quite happy with her now. She also has PA,although as yet,doesnt get the neurological problems.We live in North Shields in North Tyneside and it was freezing when out,snowing on and off all day,so far-but we really don't prepare enough in this country do we?, in comparison with Germany and the Scandinavian countries.

Shame you had to change your plans for the day.Glad you have a sads lamp it seems to work for your cat,but you don't say if it works for you.

I take Serc-16,betahistine dihydrochloride for the vertigo,but doesn't seem to do much.I am trying to manage without a stick but with the injured foot and the vertigo I walk like I am drunk sometimes,ha,ha. To be honest though the vertigo isn't as troublesome as the neurological pain,yours sounds a lot worse

For the neurological pain,my GP suggested Himalayan salts for the bath or as a foot soak.full of minerals and supposed to be very good,so I will be getting some,my local health shop supplies itand its not too expensive at £4,99 for a good size bag.

Good luck with your appointment tomorrow

Take Care

Christina

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Hi,

There is a potential association between low b12 levels and some anti-epileptic drugs. Some may potentially lead to low folate levels as well. Is your GP aware of this? See links underneath.

bnf.nice.org.uk/treatment-s...

ncbi.nlm.nih.gov/pubmed/212...

patient.info/health/anaemia... (see section on causes)

Link about gabapentin

bnf.nice.org.uk/drug/gabape...

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Thankyou Sleepybunny,

I will certainly discuss this with my GP,very usefull to have all this information,so thanks again

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