I’ve run something of a trial over the last 4 weeks to try and work out what’s going on with my body and this PA condition and thought I’d share my experiences to see if this is something that may resonate with you & hopefully some advice.
So I decided to SI hydroxocobalamin every day for a week about 1 month ago and the effects it had on me where significant - increased tingling and burning in feet, legs feeling like there was an electrical current running through them and an incredible sense of nervousness/anxiety to accompany a lack of concentration.
Taking a sublingual methyl/adeno for a month after I felt good, symptoms to a minimum however, on Sunday (2 days ago) I started to get the tingling in legs/feet again so I SI hydroxocobalamin again and surprise, surprise I’m back to feeling the same as a month ago… #devastated
Does anyone have any advice?
I’m absolutely done with this now…..
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User2020-1
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Hi User2020-1 B12 helps repair damage to the nerve endings so I guess greatly increasing the dosage may increase the amount of nerve activity and thus your heightened symptoms.
Do you know what your Folate level is?
I am not a medically trained person but have had P.A. for nearly fifty years
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is "no further improvement" or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I think it's completely normal and even lower doses can do the same. In order to manage symptoms the best way is to intentense exercise( but gradually increase intensity which may take for more than a month) for a week like fast walking and stretching muscles to have better circulation of blood . If you notice there is something wrong with blood circulation and this burning feet is related to imbalance and dizziness and weak muscles or even fainting and stiffening of thigh muscles. If you try just a week to ten days of extreme pressure to your body in order to have better blood circulation you'd see all symptoms will go away and then you can continue your injection. I have tried this method and worked for me. In this forum you'd see some people for long time had injection but they still have the same symptoms because they never had intense exercise ( gradually increased). Some of them inject for 20 to 30 years but still have the same symptoms, I think this blood circulation is the devil of the treatment with B12 vitamin shots.
Not at all even your fatigue will go away, but you need to keep your injection. At the beginning its so hard but when you see results you will be encouraged. I don't know what you mean with vicious circle with fatigue, but if your other blood biochemistry is ok then you'll get results. I tried fast walking from dawn to dusk ,muscle stretching and some muscle resistance exercise like semi scouting or some martial arts Technics but I'm very gentle way for almost a week, it was like miracle. I think B12 can't pump in our muscles without exercise . I inject every 4 days of cyanocobalamin and injected just 20 times. Now I don't have much fatigue. No much numbness in hands and feet and no burning feet and no much dizziness. Even my eyes are better.
Of course it depletes vitamin B12 that's why it urges to reuptake B12 along with other necessary micronutrients but I think it requires longer hours and less intense exercise like fast walking , muscle stretching and some muscle resistance exercise.ficus on better blood circulation and not professional training. So you need longer hours for at least one week along with rest between them. I think it works through this way
I have heard that exercise depletes B12. I don't know. I still try to run. I used to be a half marathoner and a hiker. I kept it up, but my mileage suffered. I used to run or hike every day. The tingling and numbness got worse while I exercised. It would get intense around mile three and I would stop until it let up. It always starts in my feet and works its way up to my chest and sometimes into my head. I still push myself to run or hike, but it's slow with stopping to catch my breath. Since I've been on injections it's getting easier. The tingling/numbness starts in my feet and works its way up my body. I've tried stopping, but that makes it worse. So now I try running through it. After I finish the feeling comes back into my feet and they feel so gooood, like I have new feet. So I will keep trying to run and hike.
Have you ever tried fast walking but for longer period of time along with rest between them. I think your exercise is different than mine. Longer hours but less rigorous for at least one week from dawn to dusk along with injection. If you focus on better blood circulation I think may get better result.
Can you describe what exercising “from dusk until dawn” means in time? This whole idea of exercising helping w/circulation and B12 tolerance is new to me. I walk an hour a day. I could speed up a little but I have serious spine issues so I don’t tolerate strength training or anything too aggressive. Thank you.
I think the most missing function in B12 deficiency is the lack of Vascular smooth muscle contracts and relaxes which is responsible for local blood pressure regulation and that's why in lack of such contracts our body suffer from low oxygen in skeletal muscles and causes tingling numbness burning feet and I think it's a common mistake people think it's healing effect but actually is just worsening of symptoms which is normal at the beginning of B12 injection but can be controlled by steady physical activity like fast walking with lots if interval during the day and mild muscle stretching and some muscle resisting activity like push-up against wall or sofa and bench or semi Scot and some martial arts Technics but in gentle way for 7 to ten days can maintain better blood circulation and better local blood pressure which causes elimination of numbness in feet and hands and burning feet I think lack of B12 in Vascular smooth muscle cause it doesn't do its functions like maintaining robustness in skeletal muscles. I'm not medically trained but my experience shows something is wrong with these most abundant muscles in our body and we should focus on blood circulation rather than something else.
It's so dangerous to do so because in low B12 local blood pressure is low and by doing so you are changing blood flow in arteries and if you do so for a while when you walk you can get fainted or even cause if lack of oxygen in brain. Please stop it right away because is so dangerous while you are in low B12 and even can cause misdiagnosis with narrowed arteries and other medical consequences.. it's happened to me and my dad. You need to start blood circulation improvement exercise gradually and you have to start right away. The problem of burning feet vertigo breathlessness and numbness in hands and feet is due to vascular smooth muscles malfunctioning since these muscles require ATP hydrolysis by confirmation with B12 and external pressure stimulate them around blood vessels to contract and regulate local blood pressure and sending oxygen through muscles. And these muscles during repair period don't function normally until get completed. These muscles have other functions too.Best exercise is all day long walking with proper restn time for at least seven days. Some mild muscle stretching and some mild muscle resisting exercise like push-up against wall or bench for biceps and triceps.
I'm not medically trained and all of my suggestion are based on my experience and others experience I read through this forum
I do exercise - I have 2 PT sessions a week and a bootcamp class…. My symptoms are worse after injections of B12, far worse…It’s not low B12 if my blood tests show +2,000 ng/ml so not sure how to interpret your suggestion.
You have to be patient because at the beginning symptoms get worse but focusing on blood circulation for at least seven days can improve symptoms related to burning feet numbness and vertigo. The amount of B12 in blood serum after high dose injection can not be measure of nerve repair and it takes time.
I am definitely not as knowledgeable as many on this forum. So I thought I would just share my experience with you.
I inially started taking b12 orally in February 2020 following a blood test as I had been experiencing some neurological symptoms. I seemed to improve quite quickly unfortunately this was only short-lived.
Diagnosed with Pernicious Anaemia in June 2020. Following a few symptoms such as pains that felt like electric shocks, numbness to my finger tips, hair loss, fatigue etc. Started on loading doses of Hydroxocobalamin IM every other day. Persuaded my GP to follow guidelines and eventually received 50+ injections. This was also during the height of the pandemic.
I was not expecting to feel as unwell following the injections. I developed every symptom on the check list apart from issues with my bladder. All the neurological problems intensified my mood was so flat and as for the brain fog. I was lucky if I could actually finish a sentence. On one occasion I came out of my bathroom and didn't know where my bedroom was.
With the support of the forum I was able to understand what was happening to me. I had probably experienced symptoms for years so what I was now experiencing was my body repairing the damage.
After the intial loading doses and following some trial and error I realised si every other day was needed. I still have an injection by the nurse at my Gp practice every 8 weeks.
It wasn't until February 2021 that I began to feel vaguely normal. Although this can change on a day to day basis.
I made sure that I checked all my vitamin levels and now I regularly supplement. I too could not manage Folic Acid so changed to Methylfolate which is fine. Someone more knowledgeable than me will explain why.
As for exercise I do what I can when I can. I have arranged to see a physiotherapist privately to help with building my leg and core strength.
I am now dealing with another autoimmune condition ( Hashimoto's). They do like to come together.
My advice would be don't suffer in silence. There will always someone on here who will give you guidance. At one point I felt so unwell during the loading doses I telephoned PAS and they were so helpful.
Is there ever any light at the end of the tunnel? I’m struggling to understand how on earth it is the case that a year of treatment is actually making symptoms worse so long after - I hate this…..
For me I now have good and bad days. Not that long ago I remember thinking I was never going to feel any better. I am not there yet but hopefully I'm getting there.
I've probably been unwell for many many years so I'm not expecting a quick fix (unfortunately). Some symptoms seem to fade away then pop up again days later but at least now they fade.
Follow the advice and hang in there. Things will improve.
Hi, I don't have P.A. but neurological symptoms. It started as itching in upper feet alone for almost an year. I mistook it as dey skin. Then a slight tingling ( once or twice) around may end of 2021. Immediately I checked my B12 . Yes it was 166. Luckily I am not anaemic. But slight lower end, at the iron panel. But the Dr asked me to get a B12. That is it. He didn't even suggest me the dosage. After so much confusion on june12/21 I started taking 3000 Mcg cyanocobalamin and after few weeks I started 3000 McG methylcobalamine sublingual. Just because my itching doesn't get better and little tingling also, I started B12 drops from July 15.Stop. Until this point I used to walk 7 km daily. Even 18 km daily at the end of June for 3 days.
After shifting to B12 drops the burning started. I never experienced that before. I took a online test . B12 raised upto 860. But it was still burning. So I went to another doctor at the end of July. She suggested me injection. Usual dosage. daily for 7days+1 for 4 weeks+1 for 4 months.
Now I finished 7 and waited for a week. Tuesday is going to be my first after a week.
The think is during the 7 injections I went through hell. Increased burning in hands too, restless and cold feet and hands, nervesness in genitals same like urinal track infection, blocked right ear and now hissing sound. Totally disturbed sleep.But after that during this past one week without injection I feel little bit better. Burning reduced at least intensity and duration. But during this period slight numbness in hands mostly, rarely at feet, two time at lips during sleep started now and little bit improvement in the sleep. Every day seems a little bit better but not fully. Hightened awareness still on extremities. Hope it's the same as you mentioned. Hightened activity because of dosage.
I hope I found out in the early stage. Right?
As you told I never stopped walking and working out. Though the time reduced a bit I never stopped exercising. I didn't feel fatigue. Maybe because I don't have P.A. but the burning feet drain all my energy. Now I am afraid about the next injection, worrying what if the symptoms got worse again.
Please tell me I will be alright. All I wanted is to resume my walking as always. Help me God.
I used to walk alot and had lots of life stress. My GP in 2013 checked my B12 and it was too low I don't know exactly what was the figure but doctor told me I need monthly injection right away. After couple if injection unfortunately GP moved other city and other doctors refused to inject monthly shot and since I didn't have any symptoms in that time I just moved on but my symptoms started to show up first stiffness in my feet but walking alot helped my to somehow fix it but lots of my ability in running and walking was gone. Then my eyes started to get blurred and then my lower stomach muscles showing sever fatigue and I was feeling it was parted. Many time I went hospital but doctors couldn't figure out what's wrong. Last year September I thought it may be autoimmune disease and may be exercise can help and at the same time I remembered my b12 injection missing and urged a GP to give my shot and at the same time I started exercise but after five times exercise my body showed megaloblastic symptoms like sever dizziness nausea restlessness shortness of breath and many other symptoms my GP couldn't found what's wrong many times I went hospital but nothing helped then I started to take B12 and I found it's helpful doctor stopped my injection since test showing more than 1000 but I was feeling so bad fir six months I just taking sublingual and timed releases 2500and 2500 morning and night respectively since healing was so slow then I started to inject first every ten days then one week and then every four days but new symptoms started after 15 injection burning feet numbness in hands and feet and severe dizziness and sever fatigue. I couldn't even stand on my feet. Then I found these new symptoms are actually side effects of B12 injection since nerves start to heal they don't do their regular job and first vascular smooth muscles which covers most blood vessels in our body get relaxed because less signal from respective nerves and it causes lower blood volume and I need exercise like fast walking and exercise muscle stretch and some muscle resistance exercise but in very mild way. It worked and now I have less dizziness less numbness and burning feet but soon after injection it means almost one today after injection I have to watch my blood circulation and walk and exercise. But it cause psychosis and I feel so bad mentally because I feel lots of pressure. In the meantime I'm alone and this causes more mental pressure. I still don't know should I continue injection or move and join my family in other county in order to follow my injection and exercise since I need badly mental support in such a situation. I have not tested for PA but I checked everything and everything of my blood biochemistry is ok but I have lots of neuropathy and I think still I need more than four months every other day injection but I see improvement and is so hopeful.
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