I've had about 10 injections now and things are getting worse. My pain is worse and spreading and no pain killers touch it. Is this really normal for reversing out? It's all in my glutes hips and legs.
Is this normal?
Devasted: I've had about 10 injections... - Pernicious Anaemi...
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Popcorn12345
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It doesn’t happen to everyone, but it’s quite common . Sometimes when the healing starts and the nerves awaken , it can cause pain . Yes , someone did coined that phrase for it ,— “reversing out” . So try not to get distressed , and persist with the injections . It didn’t happen to me , but I hope that someone to whom it did happen will answer you and put your mind to rest . . Best wishes .
Hi Popcorn12345,
It is common, others have experienced it, myself included. Is it burning stinging sensations, sharp stabbing pains and numbness ? I havn't found painkillers help either, but did find the pain not so intense as time went on. How often are you injecting ?
10 injections is nowhere near enough, are you able to increase them ? I know how awful it is but try and stick with it. I dont know what to advise and still looking for a solution to help myself with similar issues. I do find I get odd days where the discomfort is less but there is no rhyme or reason why.
I feel your issue is what we discussed and wonder if it might be worth you seeing a urologist.
PM me if you wish.
I had alot of pain in my hips and legs. Had so many pillows in bed as it woke me up all of the time.
My worst pains were headaches and migraines though .
It does improve .
Very early days for you .
I still ache if a B12 injection due / needed .
Dr Klien has me doing injections twice a week. And to support that take 400 of folic acid. Is that enough folate for twice a week injections?
I was given amitriptyline but it hasn't done anything for the pain so plan on stopping it. No point taking it if it isn't doing anything
Wondering what time period your 10 injections have spanned? My experience was of feeling slightly better after the 6 loading doses over 2 weeks (twitching, cramping, and back pain much reduced) but then being overwhelmed by a changing range of symptoms as I continued with injections every 2/3 days in the following months, presumably as nerves have begun to heal. Severe migraine; intense shooting pain in lower legs: back, groin and hip pain as you describe. It was definitely a case of taking one day at a time, and I have had some very low days. The first 3/4 months were the most challenging - now I'm 9 months in and much of the worst pain has calmed. Still on the same injection regime as I know there is still a lot of healing to happen. Also had a blip with folic acid last month so feel the B12 has been less well used and some twitches have returned. So in summary, healing is a slow process, as it took us along time to become this deficient. Some people don't notice any 'reversing out' symptoms, but apparently 1 in 10 does. It's hard, but if you have PA or any other form of B12 malabsorption you have to weather this storm, keep up the injections and get through to the other side. It will happen, wishing you improvement very soon.
I'm on twice a week injections as told by Dr klien and on 400 folic acid acid a day. Also taking vit d k2 and magnesium for d deficiency.
Taking iron for low iron.
Still not sure where my problems are coming from.
A CT scan showed an abnormal looking pancreas. Don't know why yet. Waiting for a specialist.
But I feel like I'm just getting worse and worse. Not making any progress at all.
Hi Popcorn, I'm sorry to hear you're feeling so unwell.
However, as far as B12 deficiency, please be assured, as others have said, that ten injections are a drop in the ocean!
I didn't feel even halfway better until I'd been having injections for six months, and I continued to improve for at least a year .
Im fortunate that self injecting once a week has enabled me to live an almost normal life.
Don't lose heart, and sending you best wishes for a speedier recovery xx
Thank you. It just feels like all the symptoms I was having have ramped up x10 since starting the injections. I had hoped it would be the other way around
It will settle, kerp going!
Hello Popcorn,
I wish I could make it go away for you and everyone on here, I'm on ending of 3 months of injections eod and it's better that at first but I do notice like My old Cat said new symptoms have evolved over this 3 months and the others are not as intense and some other symptoms have gone. I don't know if your mind has been going through changes in the brain but I have like a racy feeling in my mind that comes and goes now on injection day and like I'm over electrified in my body, and the tingling and nerves going kinda crazy at times but the pain has gone way down for now. I'll still get a shooting pain off and on even when I take my multi through out the day my head and nerves still are firing off. so I'm sure this is all your nerves waking up and healing and I'm learning as well it is true but I'm still early as well. I try to go by everyones time frames. the mental part of this is hard at times too. I'm not sure if you have those symptoms of the mind like anxiety or fear. but the pain has changed to tingles itching for the most part. I don't know if you live alone but it's also hard to explain this to others they hear me but they just can't understand. oh and my stomach is ususally messed up lately I don't know if you have gastric issues. how long were you deficient?
Early days and reversing out are all possibilities. That said, I think it is errant thinking to ascribe all symptoms to B12 deficiency, and that it is prudent to get yourself checked out. I have hip, spine and glute problems that are functionally caused by collapsed vertebrae and other organic problems. (osteoporisis, arthritis) If you have already had x-rays etc. and had other causes have been elliminated, then I think you can conclude that you need to try to endure the pain until the relief from the shots kick in.
I have had 5 mris all of which have shown nothing. I'm being hit with the most brutal fatigue and light headedness and nausea.
I'm concerned that maybe my iron is to low to support the injections
Injecting more often would probably help the healing process to go faster. Maybe try every other day or every day? You might have to inject yourself to hit that frequency.
I'm already injecting myself but dr klien told me not to do more than twice a week
You could email him for advice? He put me on injections every 3 days but I have upped to every other from time to time, when I've had antibiotics or just more going on. I've also learned that cofactors really need to be at optimal levels for the best results, particularly at this stage of healing. After starting off religiously I ran out of some things - plus had stomach issues with 5mg folic tablets - and have felt the difference, so unpacking an order of liquid D/K and sublingual folic this morning. Sad to be so excited about supplements...
He has me doing twice a week injections 400 folic acid
20mg iron
3000iu vit d
I added in k2 and magnesium
I asked him if I need more frequent injections he said no. I asked if I should take more folste he said no. I asked if I need a b complex he said no.
So I have no idea if I'm getting this right or wrong
I'm just about to start a B complex as I've only been taking folic acid, so will see how things go. Hoping back pain improves...
If you are going to take a b complex aew you going to get one with folate in it?
I think it has some folic acid probably 400mcg, but like you I'm on the 5mg so am supplementing that in addition.
No I'm only on 400mcg. That's all he wants me to take!
Sorry, don't know why I thought that! Your levels must be good, mine not so much. Most B complex tablets seem to have 400mcg of folic acid so if you wanted to try a complex you'd be getting enough folic . Hope my next blood tests come back high so I can cut down as it gives me bad stomach pain. Just about to try a sublingual version as the liquids are SO expensive.
Is your b complex going to contain b12 aswell? Are you able to share which one you are getting? My folate was 7.1 not exactly the best
It does have B12 but I won't be absorbing it! Will dig out the link - I got it from the same site as sublingual folic acid, but others are pretty similar. EDITED:- classic B12 error, I didn't actually order those tablets! Decided to get Ferroglibin liquid iron with B vitamins instead...🙄😂
So you arent going to take a b complex?
Going to try this, iron and B vits together, as I'm not good at swallowing tablets.
Back of Vitamin supplement pack showing contents
I understand. I already take an iron supplement
It all seems to be a very rocky road to recovery to start with. I have been SI EOD for three months and about to reduce to twice weekly. I take all cofactors, but generally my levels of most things now seems optimal so it’s just about my body healing now with all the good stuff. But it has been difficult over the last couple of months, some days I have been in extreme burning pain all over, some days extreme fatigue, or anxiety, lightheaded. And it seems to go from one to another ever couple of days. And I’ve definitely felt worse some days than I did before. But this week I had two really good days, so I’m keeping my fingers crossed the worst is behind me, but I’m not counting my chickens just yet!! 🐓🐓
So try not to get disheartened and see it as a lot of work going on in your body, bit like a building site. Lots of noise, dust, debris and hard work.
How much folste was you taking to support injections? And do you take a B complex?
Hi Popcorn, I was taking folic 5mg every other day with injections but now I’m supposed to take once a week on advice of Dr K. I have also been taking a B complex, but have had to try a few. The first one I had had Methylfolate and I don’t think it agreed with me. Then I tried one, but it had too much B6 in. So now I’ve got a different one which has folic acid in it. My folate level is good now, so I just need to maintain that level. It’s all a bit confusing with regard to supplements, but follow advice of Dr K I would say.
I’m sure a lot of what you are feeling is reversing out symptoms as they call it. It’s a bumpy road and the anxiety and worry is horrible. Worrying if you are taking the right thing, or too much or too little. I think as long as you take cofactors regularly it should help.
I see dr klien recommend to most people EOD injections and 5mg folic acid. But with me he says 400mcg daily amd twice weekly injections. But everyone else I talk to says that's wrong. So I have no idea if mines eight or wrong
I’d go by what he says. It depends on lots of factors, your age, how long you’d been deficient, your levels etc. so everyone is different.
Might get a b complex though
Hi there—My legs sometimes bother me as well, and I always thought that this was due to my B12 deficiency. But I just had labs done and my ferritin dropped from 100 to 60 in 2 months and my legs have been killing me the past couple of weeks. So I’m wondering if that’s more of a symptom of low ferritin than low B12? I think my level fell due to a bad case of poison ivy as I was then put on a course of prednisone. I do take an iron and mineral supplement which I have eased up on as my ferritin level has been good. But maybe I should have kept taking the higher dose anyway. It’s such a balancing act.
Yes, low back pain leg pain spasms jerking. Definitely an iron deficiency issue. Low iron measures, especially ferritin, seem to be a problem for some people who have low B12. The easiest iron supplement I have found to take is iron in the form of Fumarate. Much more effective with far less side effects such as constipation. Doctors usually prescribe iron sulfate. Always gave me horrible headaches and never raised my iron very far. Eventually I tried the Fumarate and found it much more effective but most of the research was done way back with sulfate so that's what they use. Also note if you take a proton pump inhibitor such as Prilosec it really has an effect on your iron absorption and there is a lot of evidence that it also affects B12 absorption. It takes time to get your own status back where it needs to be so don't be discouraged.
Yes, low back pain leg pain spasms jerking. Definitely an iron deficiency issue. Low iron measures, especially ferritin, seem to be a problem for some people who have low B12. The easiest iron supplement I have found to take is iron in the form of Fumarate. Much more effective with far less side effects such as constipation. Doctors usually prescribe iron sulfate. Always gave me horrible headaches and never raised my iron very far. Eventually I tried the Fumarate and found it much more effective but most of the research was done way back with sulfate so that's what they use. Also note if you take a proton pump inhibitor such as Prilosec it really has an effect on your iron absorption and there is a lot of evidence that it also affects B12 absorption. It takes time to get your own status back where it needs to be so don't be discouraged.
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Neurologist says there is no scientific reason to inject more frequently 
Feeling awful, B12 178 ng/L 
Fewer Injections, more injections or stay the course? Please advise.
