How long does small fibre neuropathy due to prolonged B12 deficiency for many years take to be reversed, if possible ? After 14 months of self injecting daily and pathology results finally returning to normal (holotranscobalamin and serum B12 normal) and taking Lyrica for my neuropathy the past six months ? I have been living in hope that I may be able to reverse this peripheral neuropathy and praying that I haven’t done permanent damage. Until a week ago I had all my symptoms returning, electric shock, burning feet and unbearable pain walking and sleeping. Does this mean it’s permanent?? I’m feeling very angry with the medical system that has neglected me in the early stages of my Pernicious Anaemia treatment when I was complaining that three monthly injections were not sufficient. Now I am in this predicament and feeling frustrated and helpless. Does my body need more time to heal the damaged nerves or there’s no hope for me??
small fibre neuropathy : How long does... - Pernicious Anaemi...
small fibre neuropathy
It's taken years for alot of my symptoms to lesson or go completely. So hang in there.
Just keep up your B12 .
Monitor ferritin/iron.
Folate and vit D the most common things that go with b12 def/ PA .
I sometimes have set backs normally if something else going on even a common cold .
I'm not the same person as 5 years ago but so much better than when all this started.
Fatigue ,light sensitivity, and a vestibular disorder lingers .
Amazing how we adjust snd move on.
Thank you Nackapan for your feedback. I take folate supplementation every day and my iron levels are low but still in the normal range and don’t like iron supplements as my body doesn’t like oral supplementation., (4 years ago I had an IV iron infusion and if they drop below the normal levels again will repeat IV) it’s a watch and see thing for now. I will persevere with SI injections daily and really pray and hope for the small fibre neuropathy to improve with more time. I suppose that my nerves are hyper sensitive to all external influences that the slightest thing change/uncomfortable experience will set off pain signals and flare up as I assume this was the case recently.. I sincerely appreciate your reply and feedback. This forum provides so much information and support that I’m really grateful for, thank you.
Hi there..I’m having some success treating the neuropathy with p5p the active form of b6 along with my b12 shots.It’s early days but it seems to be working like a painkiller for me.There’s nothin* alternative that I’ve not tried and had no success with other than this..put p5p into the search bar and it’ll throw you up some posts with info on this..I take a p5p supplement which has b2 zinc and magnesium included,they all work to support each other.Just one a day has made a huge difference to the pain and burning in my feet legs fingers etc,maybe do a bit of research when you feel up to it?? Best of luck I do sympathise..
Thank you for your reply Thrones 12. I will be definitely looking into your suggestions. I currently supplement with B6 and I will investigate p5p. I don’t want to take opioids for pain relief either but, I have been many times desperate for anything to allow me to sleep and do my daily activities without thinking about pain. I also supplement with magnesium and zinc (I see a naturopath to help me heal my gut and neuropathy and she has supplied me magnesium and zinc) it seems to be helping at times. I really appreciate your feedback.
I had to resort to powerful pain relief short term as bedbound at one stage and losing the will to cope with severe daily pain .Opening my eyes letting in light was the first morning challenge focusing and finding some balance to sit up the next without vertigo starting.
Even swallowing difficult for awful nausea.
Drugs that dull the nervous system not only give you some sleep and a break they can let your head heal,settle.
Believe me I dint take any drug lightly but very glad they are there if needed as I needed knocking out for a couple of days. A rest.
I once was even loathed to take vitamins.
My first needed high dose loading of vit D made me feel unwell. That was before b12 deficiency found and only symptom fatigue .
Didn't even think of absorbtion issues .Ate a very good diet so didn't think I needed them .
Hindsight hey!
I'm also sensitive to anything I take from a vitamin including B12 to antibiotics to a paracetamol.
B12 wakes up your nerves . This can cause pain in itself.
Time, time. New found patience.
Pacing ( how I hate that word)
Not 'pushing through ' as just puts another strain on our bodies .
For me a set back if I try as an old habit.
Frustration is now my biggest challenge as just want to 'get on'
It's exhausting in itself keeping balance I was told uses 3× as much energy.
Eating / digesting more energy and goes wring if literally too weary to eat.
Healing of course needs rest and sleep.
Never had to think about so many things everyday .
' A balancing act'
You will find your own way.
I'm going to look up p5p .
My b6 trial didn't seem to change anything when I upped the dose .
I do take vit C with zinc
Also a multivit .
And s low dose of iron.
Hi Nackapan. I’m trialing P5P Complex by BioCare. It’s a mix of b6 50mg b2 20mg 100mg magnesium and 14mg Zinc. It’s def doing a lot of good for me ,I’m sleeping better too.I know this is not for everyone but if it just helps alleviate one persons pain I’ll be happy. It’s only been a week for me but I felt pain relief after one hour of taking this.you’ll always read mixed reviews so it comes down to what works for you as an individual at the end of the day. Best of luck.
I suffer too much with neuropathy and recently tried P5P after other experiments. Didn't make a difference to me but perhaps I needed to give it more time to take effect.
I took tbenfotiamine and ALA for a few months and it seemed to help with the burning and gave me more energy. Hard to tell sometimes with multiple symptoms going on.
Hi Mixteca, I haven’t heard of tbenfotiamine and ALA before but will definitely research this . Much appreciated.🙏🙏
Hello with gone with the wind 1972. I have severe neuropathy in my feet too. One thing that helps me when Im sleeping, is to keep the covers off of my feet. Just having the covers on them at night pushing them down and rubbing on them is extremely painful. But what I do is I made a foot guard that you put under your covers that keeps your covers off of your feet. I made my own out of a plastic tub lid. It is taller that my mattress therefore, when I pull the covers over it it holds them up off my feet.
Also my feet and my hands and my legs below the knees get very cold so I bought myself an electric blanket and I turn it on before I crawl into bed and boy oh boy has that made a huge difference in my comfort. I was wearing socks to bed I couldn't get warm under my covers I had tons of blankets on me so yesterday was my first night sleeping with it and it was wonderful.
There's no telling how long or if it will get better completely. My feet have been hurting since 1995 thereabouts. I started injecting B12 two years ago. I'm not satisfied with how little they've improved. I'm hoping it will just take more time.
Fingers crossed for us both. 🤞 Hang in there.
Oh, also I soak my feet is ice water. It's the only thing that cuts through the pain. Especially the burning sharp pains. You can put them in ice water for a while and then put them in warm water to warm them up. My freezer has more ice packs than food. I use one of those frozen ice packs so I don't have to constantly make ice. Hope you find some relief.
Thank you ElaNore for your advice. I also experience extremely cold hands and feet in winter as well as in summer, and assume it is all nerve related. I’m sorry to hear that you have had neuropathy for so long too. I suppose you have had to do your best for relief however you can. The electric blanket suggestion sounds like a great idea and will definitely take that into consideration. I have also read that rubbing your feet with Vicks works for some but, initially is quite painful and then becomes tolerable after a while and reduces the pain. I haven’t heard of the ice on the feet before but, also makes sense too. I will give that a try as well. With the benefit of hindsight, if I could turn back time, I wish I could have persisted with a better understanding of Pernicious Anaemia, if doctors did their job properly and explained more effectively about this condition instead of just saying that it’s just a B12 deficiency and you just have 3 monthly injections for life, that’s all, no big deal!!! It is a huge big deal and I wouldn’t be in this position with peripheral neuropathy today. My well wishes to you and thank you for your feedback.
Hello I’ve just been reading this and I wondered if you’ve had a test for the thyroid as having cold hands and feet and also feeling cold inside can be result of underactive thyroid, hope you don’t mind me butting in,hope things sort themselves out for you
Hi Kowbie, yes I have been monitoring my thyroid. I have antibodies for Hashimoto and my GP suggested a ‘wait and see’ approach. My last TSH results indicated that I’m just out of the high end range and apparently no treatment is necessary at this stage. I am well and truly on the road to Hashimoto hypothyroidism as my mother has the same condition. Is there anything to supplement before I develop full blown Hashimoto ?? The thyroid situation is a very delicate tight rope to balance and don’t want to cause more problems.🙏😊
I kno my vit d was below folate was also under and your sorting b12 , but if you don’t mind me saying I don’t think he should make you wait I’m on the thyroid program on this site and they are so helpful , do you know what tsh and t4 / t3 are because it’s not just tsh that is the least one to worry about it’s t4 / t3 most important, drs don’t always do t3 but you can get a blood test for thyroid privately, I do hope you will go on thyroid unlocked as you will get all the information you need to fight your dr , ( I don’t mean a punch up haha)
forgot to add ferritin
A 'wait and see' approach appears to be the GP mantra. It hasn't worked for me so far! As we all know, prevention is better than cure.
I totally understand And I am so sorry for what happened to you. I also feel, as probably many of us do, that if it wasn't for the doctors I wouldn't be in the condition I'm in now. It wasn't for lack of me trying for 44 years to get somebody to hear me. I was told it was in my head I was told I was just fat I was told it was multiple sclerosis I was told it was fibromyalgia I was told so many things mostly it was stress and that I needed antidepressants. So I completely understand and there's nobody we can sue and nobody we can be compensated from for what they did to us. They literally destroyed my life and for 44 years, my life revolved around me trying to save my own life and here I am now going to be 62 years old and I can hardly walk and I feel my life is almost over and I never even got to live in the first place. And it is all the doctor's faults. So I completely understand. I wish I could give you a big hug and tell you how sorry I am that they did that to you. It's a terrible thing. And if you don't have a family that believes you either, you're left all alone. I had no one so I completely understand how angry you are. I am pissed off!!!!!!! Big hugs to you.
I’m so sorry that you have been suffering for 44 years from ignorance from medical professionals, it is completely unacceptable and is malpractice in my opinion. I too have been on the merry go round of specialists and have been diagnosed with fibromyalgia, given antidepressants and told that there’s nothing wrong with you, it’s all in my head opinions. I believed that it wasn’t and stubbornly persisted to do my own research. My own family told me to stop persisting, stop looking online, it will drive you crazy but, I said NO to them all! I’m glad I didn’t listen to anyone, here I am today with a logical explanation for all my symptoms and a wonderful forum for people with similar experiences. I’m a determined person and will persist with finding answers no matter how old I am. Please don’t give up, there are many ideas and suggestions that people on this forum offer that we can all try to improve our quality of life and stay optimistic. Thank you for your hugs, I too wish to hug you, NEVER give up. We are entitled to vent our frustrations but, revert back to being optimistic and hope with finding something that can finally help us. My prayers to you.🙏🩷
My goodness, reading this could have been words right out of my mouth. Every single word you wrote I can relate to. Yes we can let out our frustration and then go right back to being optimistic and moving forward. I like to think that I'm 95% positive and 5 percent of the time I feel a little sorry for myself. Lololol. 🤗
Thank you for your support and hugs. You're so right about everyone here. 💕 I will not give up. That's what we all have in common. None of us give up. I believe every one of us on here saved our own lives by insisting and not giving up on ourselves. Hang in there.
EllaMore, I totally understand and agree with you!!! Life throws punches and just punch back again and again until something changes whether it’s in the form of inspiration or an idea like we have on this forum. Stay inspired and positive!🙏🩷😉
🫂🥰
My feet also get cold in bed, even though I use an electric blanket. I placed an electric heating pad, covered with a folded towel, under the fitted sheet at the foot of the bed, with the controller hanging out on the side of the bed. I turn on both the electric blanket and the electric heating pad a while before I go to bed. The electric heating pad turns itself off after about an hour, and if I need to get up to use the bathroom I turn it back on. I use two comforters, and the bottom one is quite a bit longer that the top one; I bunch the end of the longer one in riffles over the electric heating pad, so none of it hangs over the foot of the bed. The top comforter does hang over the foot of the bed. The bunched part of comforter over the heating pad absorbs heat and holds on to the heat for quite a long time after the heating pad turns itself off.
That's a great idea about the heating pad under the fitted sheet. I was wrapping mine around my feet. You're right though even with the heating blanket, my feet are still cold and I still have to wear socks to bed. I should try your idea. Crazy how cold we get. I never used to be cold. In fact I was always too hot.
Hi WiscGuy,
Such a good idea with the electric blanket at the foot of your bed, I will definitely be trying this!! I definitely appreciate these wonderful tips on this forum!🙏🙏
If you're injecting daily, your iron levels will be dropping without supplementation, affecting the efficacy of your treatment. This affected mine. I also had an infusion after SI for 6 months, but I should probably have done that much sooner and not at that stage in B12 treatment.
Hi Mixtecs, thank you for your feedback. Do daily SC injecting for 14 months correlate with iron/ferritin levels dropping and require supplementation as well? I assume then it is to do with malabsorption issues. I am concerned with constipation issues and side effects. I guess I may as well supplement with iron as I supplement with everything else. And many people on this forum do the same. Will look into this as well.😉
Please do not blindly supplement iron without being sure you're running low first. Can be confirmed with an iron panel. More is not better when it comes to iron as your body cannot remove it easily. Many do run low on iron but its not a good idea to assume. Iron is not B12 and too much can be harmful. When there is already gut dysbiosis, unless there is a deficiency, throwing a lot of iron at it may make the situation worse for already grumpy gut denizens.
Hi Technoid,
I appreciate your feedback regarding iron supplementing. My iron/ferritin levels are currently stable for my stage in life.(I’m 51) My GP has clarified to me that my levels are normal and I’m not bleeding in my gastrointestinal tract and do not require supplementation. (I was diagnosed with Crohn’s disease after my Pernicious Anaemia diagnosis) I totally agree with you that iron supplementation is not the same as B12 supplementation and that too much iron has its own complications. Hence, for my situation hasn’t contributed to my neuropathy.
Remember though, we are not averages or statistics with no health issues. We are individuals with differing requirements, so a tailored approach is prudent.
I would say yes. I inject EOD and my iron level fell as the months passed, hence needing the infusion. B12 treatment puts a greater demand on iron stores, so supplementing is important if levels are not optimal. Side effects seem to depend on personal sensitivity and the form taken.
I previously took 14 mg iron as citrate with no issues after being anaemic. Many on the forum take Solgar gentle iron 20mg with positive results. Best taken first thing EOD with a vit C drink 2 hours before eating for better absorption and better tolerance. Good idea to do an iron panel for a wider clinical view.
B12 needs folate too and a supplement should be taken alongside treatment or that will also fall. The dosage will depend on your levels and on the form taken. 🤞🏻
It all depends on how bad the damage is, and how long ago it started, and what treatment you are getting. A Neurologist can give you a nerve conduction test to see how bad things are (or how good they are!) I was supposed to go for the test, but Covid got in the way, and the Neurologist has retired, there's no one to replace him, and my GP hasn't referred me to the other hospital...
You'll probably be told it's irreversible, but that's not entirely true, seems there's infra red therapy that can help. You're GP might be more amenable to listening to you, than mine is!
I’ve also had a nerve conduction test with the results being the large nerve fibres are fine and they told me that it’s the small fibres that are causing all your symptoms, that I’m lucky that I’m treating myself every day with some hope of reversing my symptoms. I’ve heard of infrared treatments can help and will be investigating that suggestion as well, thank you for your feedback.
It's a specific IR wavelength that works, I'm trying to find the YouTube video I saw, she said you could buy the equipment off Amazon...
I purchased this item, about a month, ago from Amazon, it works relieves pain must use consistently:
Red Light Therapy Device for Hands, Infrared-Light-Therapy-Gloves Finger Wrist, Led Near Infrared Light Skin Care, Heating Pad for Carpal Tunnel(Pack of 1)
There's lots of hope available!
Several years ago I cut most of the tip off a finger. It healed itself back on but I had no feeling in the end of it for ages (keyboard typing was a nightmare). After 18 months I suddenly could start to sort of feel whether it was touching something or not.
Now it has full feeling and I have to look for the scar band around it to know which finger it was that got damaged.
I can't remember clearly (my memory was badly affected) but it was probably a couple of years of daily injections before I got the feeling back in my feet. I still "lose" some of my toes again from time to time if I get short of minerals, especially potassium, but they come back again when I get everything balanced again.
Don't give up hope inside of 5 years, and remember I'm still getting lots of improvements after 8+ years of daily SI, despite other problems setting me back.
If I do not take 50 mg of P5P twice a day my peripheral neuropathy starts to come back. 2 years ago I injected a different form of B6 and the relief was instantaneous.
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