It’s been nearly three years since I began my journey of self injecting daily with methyl B12. Within this time period I began taking Lyrica to ease my neuropathy and was hoping and praying that this might be reversed with sufficient treatment. As of a few months ago I began to experience increased neuropathy in particular, more tingling and body pain and fear this might now be permanent. This is again affecting my daily life. I have a GP appointment on Monday to discuss this. My question to all is if anyone lives with permanent neuropathy and how do you treat it? I’m even considering trialing Neurontin or anything similar to see if I may experience some relief from this debilitating pain. I’m getting very anxious and worried that my body has developed a tolerance to Lyrica and may not be as effective anymore. Advice will be greatly appreciated.
Does anyone have permanent neuropathy... - Pernicious Anaemi...
Does anyone have permanent neuropathy caused by Pernicious Anaemia?
Have you tried cyanocobalamin or hydroxcobalamin?Some find methylcobalabin agrivates moods and gives anxiety .
I carried on healing at your stage.
So keep faith more improvements can be made .
Thank you for your reply. When I was first diagnosed with PA I was given Hydroxocobalamin and this continued for two years so I suppose I can try this again in combination with methylcobalamin and see if things improve. In the beginning it was insufficient B12 (every three months) that brought on my neuropathy. I’m fearful it may be permanent as well as angry with current medical protocols who think one injection every three months is sufficient.
I wish there would be more organized legal challenges to these protocols instead of every patient having to fight against them on their own, which becomes virtually impossible in their debilitated state.
I’m sorry to hear you’re having a rough time and not feeling supported by medical professionals. I don’t have any knowledge about Lyrica other than what it’s for.
As Nackapan said, it won’t hurt to try Hydroxocobalamin again - have you been on methyl that whole time? At what frequency?
Hydroxocobalamin (loading dose initially then once every three months) with my PA diagnosis then with methylcobalamin (every day) during my self treatment. It was during my once every three months treatment that neuropathy became debilitating hence my transition to methyl and self treatment. It’s so frustrating being in this vicious cycle with unsatisfactory support from mainstream medicine.
Yes, it's beyond frustrating.
You could have written my post except that I don’t have any idea what Lyrica is. I have numbness and tingling in hands and feet, have been SI ing for over 2 years, also balance issues and fear neuropathy is permanent. You are not alone ❤️
Hi Libuse,
I was prescribed Lyrica (an anti seizure medication which helps with neuropathy) because I couldn’t tolerate the pain and the nights were unbearable, I cried myself to sleep every night. Whilst taking Lyrica the past year and a half, I felt relief and managed to live a normal life. Now it’s back and don’t wish to keep increasing the dose with every escalation of symptoms. I am trying to my own doctor trying to understand the fundamentals of neuropathy. It’s very disheartening.
I understand. Thank you. Have you had thyroid tested. I am also hypothyroid and symptoms are similar. ❤️
Yes, I get this tested regularly. My mother is hypothyroid (Hashimoto’s) and have some auto antibodies to this so, are in a ‘wait and see’ situation to see if I may develop it. Have cross checked with the symptoms also.☺️
I’d try hydroxocolbalamin, and make sure folate and ferritin optimal and B6 not too high. And keep going. Plus do balance exercises daily and self massage hands and feet. Don’t give up. Presume you’ve had tests to rule out anything else?
I will try hydroxo as well, my B6 is not high and I will give balance exercises a go too. I’ve had the nerve conduction tests done and were fine but, was told it’s most likely small fibre neuropathy. I was also told that this is not commonly tested nowadays (skin biopsy)
I believe hydroxo can convert to both methyl and adeno. Great B6 not too high as can give these symptoms. I meant more MRI etc to check for any other cause. What ever the cause of balance is compromised you can improve it by exercising it.
I personally have been treating mine naturally. I got off of all sugar, went low carb, no processed foods, no gluten, no seed oils. High good quality protein and good fats, beef dripping butter, lard, ghee. I take high dose choline, benfotamine, Rosita's cod liver oil, a multi mineral complex, self injecting B12 every other day, high folate (not folic acid). I then took copper and MSM sulphur which seems to have been a bit of a game changer for me. MSM sulphur takes away the pain. I also take a bunch of other supplements too as I am hypothyroid. I have had some success. Dr Berg on youtube has a couple of video's about treating neuropathy.
If I go on a sugar wagon it does start to come back. I understand that nerves can take an awful long time to heal. I still have some numb feet and toes, ataxia definitely got better given up gluten. Although I still have ataxia, some days better than others.
Absolutely nothing wrong with seed oils according to Professor Sarah Berry (Professor of Nutritional Sciences at Kings College and lead nutritionalist at ZOE ) . She cannot account for the bad press that they have received . She says that seed oils are fine .
It is a business wedgewood. I personally would not take any notice of what they say. Or what is on google. But it is up to the individual. Look up the research from independent scientists, biologists and nutritionists that are not paid to follow the money trail.
Hey Katherine1234,
Good on you for having what it takes to explore and discover how to successfully self treat.
Hi Katherine1234,
I’ve also tried natural remedies with a naturopath. Similar recommendations you have stated. As I also have Crohn’s disease and have tried anything suggested by her to help heal my gut along with my neuropathy. One recommendation that she’s also suggested is infrared therapy, I will consider this option out of desperation even though the sessions are a bit pricey. Has anyone tried infrared therapy here?
It sounds like it is the right path you are on. I have an infrared lamp too. But I keep forgetting to use it 
Healing the gut is the way to go. I have been in awful trouble re: my gut after for 4 lots of strong antibiotics for reactivated epstein barr, strep B and gall bladder. They wanted to whip my gallbladder out, it is do important for digestion. I have managed to keep it with all sorts of natural remedies and got an all clear on the cholecystitis and wall thickening, no more inflammation. They wanted to whip it out a year ago. Still got 3 gallstones but not causing me problems. Took me 9 months to heal my gut
I empathise with you. Gut healing is so critical to everything that chronically impacts us. I’m sorry to hear that you were unwell and good on you for insisting to keep your gall bladder, it is such a vital organ too. I also have done much gut healing and my last gastroenterologist consultation indicated that I’m in the first stages of Crohn’s remission. I can only hope that all this gut healing may eventually lead nerve healing as well.🙏🤗🤗
I have the same issue and still suffering with the neuropathy which is worse at night. I have the burning, stinging, numb feet, it also affects my hands. It's a swine of a thing to have to live with. My Dr prescribed steriods which helped to relieve my symptoms but caused issues else where such as flashing in my eyes, ( just what I needed ) so i'm now waiting to be seen in the retina clinic. Scrutinise everything the suggest with other medications you maybe taking.
I was given the one size suits all of 3 monthly injections. I then waited over a year to be seen by a neurologist who totally dismissed my symptoms, hence the damage I now suffer. I have been injecting daily for 4yrs.
Look up a Dr Brian Prax on Utube who offers some advice on neuropathy and diet. I now prefer to try natural remedies rather than prescribed drugs which have some nasty side effects. I also brought one of those foot stimulators to increase blood flow.
Magnesium is also supposed to help but dont quote me on that one.
Hi Jillymo,
Your story is also me!! When I saw the neurologist he told me to reduce my B12 treatment as levels were too high…blah, blah, blah! So sick of these so called experts!!
I will look into Dr Brian Prax and see if I will learn more. And I also take magnesium supplements.
Do those foot stimulators help with your neuropathy in any way?
That is a hard one to answer as half of the time my feet are so dead I cant feel the stimulator. Get one of those cheap one's that resemble a rubber mate with a remote control to try.
The neuro I saw was a complete waste of time yet I had waited a year to see the swine. I have tried both the gabapentin and pregab but all it did was make me drowsy through out my day.
Gee wiz this B12 rubbish is really debilitating to say the least with the balance and neuropathy being the worst symptoms. 😢
I will definitely give this a try thank you. And I totally agree with you…this constant searching for answers to this B12 stuff is so difficult as it affects everyone so differently and yet, so many similarities. How this little B12 vitamin (or lack of) can cause so many problems to our bodies.
If somebody had told me B12 could stir up all these health issues before I were diagnosed I wouldn't have believed them. You have to go through it to realise how debilitating it is.
At least on here we can learn from each other so keep searching. 😘
Totally agree with you!!! I wouldn’t believe that B12 deficiency could cause so many problems but I still don’t understand why doctors insist that too much B12 is detrimental to our health….this is the misinformation that must be exposed.
webmd.com/drugs/2/drug-9396... this is what Lyrica is.
Hi GoneWithThe Wind1972,Sorry to hear you are suffering.
I have no experience of Lyrica.
I've been reading round brain nutrition and one of the key interesting things is how myelin is made from a very stable sort of fat Docosahexaenoic acid DHA.
I'm sure you are aware that myelin nerve sheath deterioration is caused by vitamin B12 deficiency and results in the pain you are experiencing. Also our brain structure is made from myelin.
The best dietary source of DHA is cold water oily fish.
So if you are not getting fish in your diet frequently, maybe take a fish oil supplement.
A bit more here about brain fats psychologytoday.com/intl/bl...
Big hugs. Take it easy. 💙🩵💙🩵💙
Hi Oneash,
Have researched much about the myelin and B12 deficiency and functions on out brain. My diet includes oily fish and supplement this also. I’m constantly learning as much as possible and applying healthy and whole nutritious foods to my lifestyle. I am a positive person most of time but, this dull, consuming pain of neuropathy just knocks me down, it’s a constant struggle trying to function, add lack of quality sleep to the mix and it’s unbearable.
Thanks for your hugs, back at you.🤗🤗🤗
MSM natural sulphur has been good for the pain in my feet. It also started to take away the pain of my frozen shoulder. I started 1/2 a teaspoon twice a day on my tongue, chugged down with a glass of water. Over the week built up to a heaped teaspoon twice a day. I keep going up. Do not take near to bed though as it energises you quite a bit.
I used to experience the agony of debilitating Peripheral Neuphropathy. I self treat with 100 mg of B6 spread over 4 doses per day. 5-P-5
My Peripheral Nephropathy was not debilitating until I started injecting B12.
helvella.blogspot.com/p/hel...
is a good source for a rational approach to utilizing B6 without the common fear mongering.
I am different in that I experienced the agony of being B6 deficient and no longer do so.
It seems to me:
--People tend to believe that Peripheral Nephropathy is one thing and what they experience. They tend to not accept the agony that can be experienced.
--Many people suffer and do not know if B6 will help as they never have tried.
There has been some good results with 5P5. I showed up B6 deficient. I am taken it every day but probably not enough.
My study indicates that the testing available is not dissimilar to the testing available for B12 in that those that successfully treat B6 deficiency do so by symptom elimination and do not rely on testing for dosage.
My personal experience has been that there was not the getting worse before it gets better. It was a direct correlation of the more I administered the more symptoms reduced. I used the methodology of increase for a week then evaluate and increase again. Stopping the increasing only when there was no improvement.
I did at one time administer 200 mg per day as indicated was well tolerated by some and was by me.
I think I will up mine Wizard.
Hi Wizard,
Is it B6 that can cause neuropathy in high levels? I take a B complex with 30mg in it. Does this 5-P-5 taken over four doses per day relieve your neuropathy symptoms? I am willing to try this if it has helped you.
B6 in the wrong form can cause problems. But P5P won't. Look up b6 and neuropathy.
Wizard6787 is right. There really isn't any accurate way to test b6, so you must go by clinical results as in symptoms aleviation
I will definitely add P5P to my supplementation. Will try it out a few times per day and see if I feel improvement in my neuropathy. 🤗
I used to experience the agony of debilitating Peripheral Neuphropathy. I self treat with 100 mg of B6 spread over 4 doses per day. 5-P-5
As for safety of any supplementation, I do my own evaluation of the risks.
I leave the absolutist statements and advising to others.
I recommend starting at 25 mg, then ramp up after 3 weeks. Also research if b6 depletes or requires any covariants.
For some people, B12 toxicity can occur at very low doses, like 2 mg. I think it depends in part on your genetic makeup.
Did you mean to write B6 toxicity? I don't think there is good evidence of harm from B6 at 2mg, that would be far below even the EFSA upper limit which was quite conservatively set.
Yes, I did mean to write B6 toxicity. In some people pyridoxine, I think it's called, can build up in their body even at very low doses, like what's in a basic multivitamin like Centrum. And it can be hard to get your toxic level down if you have certain genetic variants like MTHFR, which is actually pretty common. Even drinking Propel Water daily can result in toxicity. I think that has maybe only 2 mg. (This information I got from a neurologist.) If you haven't checked your blood level of B6, you might want to check it. The symptoms of B6 toxicity are basically the same as B12 deficiency. The damage from this can become permanent if it's not detected.-- Supposedly your body should be able to expel what you don't need if you take excess, but in some people, even small amounts, like what is in Propel Water, can build up and cause B6 toxicity.
The NHS has set a B6 upper limit of 10mg, while the EFSA set a 12mg upper limit in 2023. These are among the most conservative B6 upper limits in the world since the US still has 100mg upper limit. Do you know of studies which NHS/EFSA overlooked in making that assessment?
Sorry Technoid- I evidently confused you with Wizard, who was taking the high dose, and it was him who I was meaning might want to check his B6 blood level.
I'm not familiar with any studies. I don't believe in these high limits that are permitted though. I only know that I had a B6 blood level of 25 (where 21 was the upper limit). When I asked my general practitioner if I should, due to this, discontinue my multivitamin, which had 2 mg of B6, he said no, your body should expel what you don't need. So I kept taking it. A neurologist subsequently retested my B6 level and found the level was now up to 45, which he called "very high." And this took a while to come back down-- he said that it took a while because of my MTHFR genetic variant. The neurologist also told me to be careful if I eat any canned food to rinse it well, because pyridoxine is used as a preservative in canned foods and does not have to be listed on the label, he said. So, really, I can't understand how they allow these limits that they do in vitamin supplements. I know only what my neurologist told me, but sorry, I know nothing of studies on this. Vitamin supplements are like the Wild West, as I see it.
after trying all three formulations in different combinations and frequencies, I found that hydroxo twice daily has worked best for me. But, as many here will attest, with long standing and under treated PA, some things get better quickly, some things get better slowly, and some things seem to never get better. Neuropathy is one of the toughest to deal with. Currently, and not that I am trying to be baby Jesus, I am using the essential oils of frankincense and myrrh on my hands and feet. I can't say I have noticed any difference yet, but my feet smell nicer! 😂 Good luck to you.
Essential oils rubbed on to my feet I have not considered before, I will definitely try this also, worth a try.
Getting b12 injektion with three month between is not a real treatment in you have symptoms . When you have polyneuropati you need it every day or three Times per week - according to bigger b12 manufactururs like Pfizer. I got it three Times per week and cured my polyneuropati in 6 month.
I inject myself daily and have done so for three years and won’t stop doing so but, will try hydroxo again in combination with methyl.
Hi, my level of B12 was 37 pmol/l in 2016. Walk with a stick, awful condition. I have per. neuropathy. Tried cyano, hydroxo and methylcobalamin injections, no different for me. 5 years shots every other day, than 1 year two times a week, now one shot every 5 days. Now i am much better, playing tennis on court. I use benfotiamine 150 mg onca a week, ALA 100 mg, Pyridoxal 100 mg and Methyl folate 1000 mcg. Walking 2-5 km. every day. Be happy and believe in yourself !
Benfotimiane, ALA, Pyridoxal I don’t currently have but, methyl folate I used a few years ago, will add back again. Will try these recommendations, thanks.
Have you considered trying functional medicine? I was at 3 half doses per day and my B12 was just not working and once I started doing functional medicine it got my detoxification working again. I see now that the liver plays a huge role in our b12.
Isn’t functional medicine very similar to naturopath medicine? Would this include gene testing for the MTHFR gene and other alleles? I have a variant of this, my basic understanding is that there is a malabsorption issue of B12 (and maybe some of the other B’s) and hence, functional medicine corrects the of detoxification issues? Apologies, don’t fully understand the science behind this.
I actually find the two pretty different they’re similar as in they use natural methods but my basic understanding of functional medicine is that it’s starts to help you with the root cause and one of the main purposes of it is to get your detoxification pathways working properly. if that’s working properly, then all your other systems tend to kind of fall into place,like your hormones and your blood sugar, etc.. Functional medicine is the best thing that has ever happened to me. I went from multiple B12 shots per day to now doing one per week. I have more energy now, my hormones are also more balanced. My cortisol levels are a lot better and that’s a huge part. cortisol levels that are too high too low will deplete your B vitamins. You also need to be in Rest and digest and not fight or flight. Most of us that have any autoimmune issues or illness, etc. are in fight or flight. I’ve also discovered since starting this that not all neuropathy is B12 related for myself and can also be contributed to low hormone levels. My b12 was getting so bad prior to my doctor was starting to think I had a psychological problem with B12. I have yet to share my recovery on here but I definitely can say I’m living proof that B12 doesn’t have to be so bad and our bodies can actually process it better if given the proper nutrition.
Swift20 I would be very interested to hear about your recovery. I am a health coach and became one due to my health issues. So much can be achieved through diet and lifestyle- it’s not a magic wand - but significant improvements can be achieved 😊
Your explanation makes lots of sense in that these two medicines are similar yet different. As you mentioned cortisol, I had my levels checked and even though they were in range, they were considered on the higher side by my naturopath and not by my GP. As you mentioned, this could be depleting my B12 much faster. I’m one year in with my naturopath and she has enlightened me with a more natural way of healing my body. I’ll also be investigating functional medicine to further assist me with this process. I just wish I could have a more quick fix to my neuropathy. I’m very grateful for the advice on this forum for which has helped remarkably. I suppose slow and steady wins the race in this situation.🤗
Yes, this forum is amazing and I wish you all the best in your recovery journey 🙂
I have to take high dose Mag. Glycinate daily. Doctor said morning and evening, but sometimes I forget. It helps with some of my neuropathy and if I skip it for a couple of days I have some similar symptoms to not getting my daily b12 shots.
I also take magnesium glycinate daily in powdered form and I also forget to take this at times, I hope this will also help me in the long term.
When I was first diagnosed with pernicious anemia about 3 years ago, I was having episodes of double vision, 15 lbs weight loss, semi-numbness in hands up to my biceps and feet up to my waist. My b12 was out of range on the low side and positive for intrinsic factor blocking antibodies. Iam in the US and fortunately my doctor was very liberal with b12 injections. I'm a retired paramedic so was self injecting 3 times per week. I have tried cyanocobalamin and hydroxocobalamin and I could tell no difference. 3 months into injections I had an MRI which showed subacute combined degeneration of the cervical spine. So long story short, my neuropathy is no better after 3 years.
Sorry to hear about your health and SACD. Can the damage be repaired and reversed at this stage? I have read somewhere that this is possible with high dose of methylcobalamin injectable B12. I am determined not to give up the fight with my neuropathy and nor should you. I remember a while back, someone on this forum posted a link of a scientific study with patients addicted to nitrous oxide who developed SACD. Long term SC Methyl B12 managed to reverse this painful condition (as I assume this could happen with neuropathy) I will also persist with this, and will add on all the recommendations by all on this thread. 🤗🤗
Sounds like you are not getting enough B12 in your injections - either not enough or not often enough.
As PhD whose emphasis and work as been in B12 I can tell you that we did a case study with a woman whose neuropathy was creeping up her ankles and legs. We measured her B12 levels and MMA just before her prescribed timeframe for injections (once a month) and found that if she did her injections every 10 days to 2 weeks her levels were better and her neuropathy stopped increasing. If she waited 30 days for her injection, her B12 levels were very low and her MMA levels were very high. At every 10 to 12 days for injections her levels stayed consistently in a good place keeping the neuropathy from increasing. That being said, her present neuropathy did not improve but it did not increase.
When I developed PA, I caught it within a year and a large portion of the neuropathy went away. What I found was that while they tell you it can only be corrected in the first year of treatment that was not true for me. My improvement continued but much slower and in smaller increments over time.
As a researcher, I found a neurologist who was willing to work with me on dosing and I started out doing 3-4, 1000mcg injections per week and that went on for a long time based on my improvement rate. Eventually I got down to once a week and I've stayed there.
Glad to hear that you’re doing better. And you were lucky to find a good neurologist who can support you in your healing process.
Without the support of this forum, who share their similar experiences with B12, who knows where we’d all be today.
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