Downhearted today, and feeling like initial problems from almost 2 years ago unchanged. Had a wasted trip to St Thomas' gastroenterology yesterday. Dr. recognised no link between back pain, bursitis, diarrhea and my B12 deficiency. Suggested dietician (already been there) and Pain Clinic (which I'm guessing is self-management without diagnosis). Have also previously been to bowel people who did many tests and found nothing of significance, and had x-rays, MRI scan also revealing nothing beyond ordinary wear and tear to lumbar region. Had physio for groin pain where they treated it as bursitis and condition improved temporarily. St Thomas' Gastroenterologist did nothing, because I have no stomach pain. I've got a feeling he may have been the end of my line, and is the second gastroenterologist I've been sent to. The first one suggested dietician, which is why I've been doing the FODMAP diet for 2 months- even though dietician did not believe I have IBS either. Trying very hard to show willing, but 2 years of pain wears you down... any better answers? Anyone else recognise symptoms?
Lower back pain and hip bursitis: is ... - Pernicious Anaemi...
Lower back pain and hip bursitis: is it just me or a B12 thing?
Hi Cherylclaire - just wanted to say that noticed that the post had been duplicated so have deleted one of them.
- not sure what treatment you are now on - just briefly looked through your posts and see that you recently had MMA results that seemed to show a functional B12 deficiency - but then another post seemed to be saying that wasn't the case.
Hi Gambit62- thanks for sorting me out. I am new to all this and not always sure if I'm doing this right. For instance, what if you want to talk to a specific person- is that possible, or just put it out there and hope the person sees it?
Yes, MMA high 6 weeks after my 2nd 3-monthly injection and "functional B12 deficiency" noted on my results. Currently reloading and then will be starting 1-monthly programme. A bit up and down, as you have probably seen too, but yesterday was my best day since reloading. Not saying I've got it all back or that it was perfect, but coping better and being more honest with myself about cognitive problems and memory loss. When to call it a day with the reloading? Maybe when all my days are like yesterday was.
If you have a functional B12 deficiency then the likelihood is that you are going to need to keep your B12 levels really high continually - I think of it as being like a dam has been built that stops B12 getting to cells and the only way to beat it is to have so much B12 in my system that enough dribbles over the top ... I find that a B12 shot lasts me less than a day - but that continually topping myself up with nasal spray seems to keep the levels high enough for enough to get through. The chances are that you may find yourself in the same boat but that your levels may not need to be kept as high - think I'm very much at an extreme. I do have days where I forget to top up and I will just run out of energy completely - the world stops being something that I can cope with because I just can't filter out one noise from another and concentration is absolutely awful and the balance goes and ... not very pleasant and I tend to refer to it as my B12 hypos. Its quite rare now and I function better than I think I ever have done before - I had years of depression and anxiety and although it will creep back if I'm getting 'hypo' it's nothing like it was - years of just sitting around waiting to die have gone. You do need a good amount of self awareness to monitor the symptoms.
I still have some symptoms - some neuropathy in left foot for instance - but a lot went - needed to play with different types of B12 and get the mix that is right for me, but it is a manageable condition.
Just keep going with the loading shots until you really think that nothing is improving any more and when they are over don't expect that you are going to be able to last 2 months but hit the B12 again when you feel symptoms coming back.
Never been very self-aware before now, Gambit, because I'd never had to really as I always thought of myself, until 2 years ago, as a healthy person.
I know what you mean about noise filters ..it's like complete sensory overload where everything is clamouring for your attention in equal measure and volume until you think your head will split in half. My partner hates it when I have to turn the TV volume control right the way down just to speak or listen or look at something. I don't have balance problems although I know a lot of us do, and that must make everything so much worse. Sorry for the years you've missed and glad you've controlled it.
Do YOU think it's possible that it can be controlled via NHS if you have a supportive Dr, or is self-injecting the only answer? Dr. has said monthly injections once loading is finished- although I have not yet stabilised at 14 (2 per week usually, so far because of flu jabs, but could be upped to 3?) It's a generous response that is far from their normal programme, but will 1 a month ever be enough?
most doctors in the UK do 3 monthly and people fight to get them 2 monthly for neuro and even that isn't enough.
It really does depend on how willing your GP is to treat you as a patient rather than a disease, ie tailor the treatment to you rather than going by averaged protocols.
There are various problems with NHS treatment - one is the tendency to not think beyond guidelines, and there are problems with guidelines around B12 - but also the types of treatment available - focus in IM injections for B12 rather than giving people a good range of options that could include very high dose sublinguals and tablets (there's quite a body of evidence that they can be very effective for significant numbers of people), nasal sprays (again evidence that they can be effective - and they certainly stop me turning myself into a pin-cushion), skin patches work for some, and the possibility of sub-cutaneous (and may be something like an insulin pen has not been explored). There are also issues around the form of B12 that is administered with hydroxo being the licensed form in UK and methyl and adenosyl not being available.
All a bit of a shambles really 
Hi. When you have low b12 it affects everything, every system of the body. I read it can damage the spinal cord so assume that causes back pain? I too have severe lumbar back pain and sacroiliac joint dysfunction, plus other mechanical issues. However, it has worsened over the years and I discovered that I've been b12 deficient for about 15 years but it was ignored. Sub acute degeneration of the spinal cord can result.
Of course, digestive and bowel problems are going to occur with low b12 too as can problems with the muscles etc. So for your doctor to say there is no link just continues to prove what we already know. Doctors do not understand b12 deficiency. I hope this helps, but the experts on here will explain better. Good luck.
I DID reply to you too, LtAngua52, but maybe lost it or did not submit reply properly. Quite new to all this and just making my own way.
So glad you survived 15 years of ignored deficiency, so sorry you had to.
Thursday lovely, Friday a bit 50s and today is one of those days you'd like to start again.
My Dr has been really good, and is not above learning something new, -but some of these specialists are so dismissive and condescending you wonder why you bothered -especially when you already know you're going to come out feeling worse. Makes your hopeful heart sink. I'm definitely done with gastroenterologists.
The experts on here are wonderful, you're right, but so are all the people like you who make me feel less alone !
Hello Cherylclaire,
My shoulder bursitis was cured in no time by vitamin B12 injections . If you google' vitamin B12 and bursitis' , you will find out that vitamin B12 injections are used a lot in America to cure bursitis . Plenty of fermented foods also heal the gut . Or try probiotic preparations . Best wishes .
Hi Wedgewood, it seems that although I am currently getting 2 or 3 injections a week as part of a reloading programme, it hasn't yet made a significant difference to my back/hip. I noticed that the Americans usually get an injection a day for bursitis cure .... not sure even my Dr. would go that far !
The difficulty is getting bursitis correctly diagnosed . GP s are not good at it . You could take matters into your own hands and self-inject . You can get help here on that , should you choose to go down that path .
HI Cherylclaire, sorry you are feeling down today this rotten condition really can get to you at times. I have back, hip and shoulder pain, nausea and a load of other stuff going on at the moment that I think is due to low B12. Had my injection 2 days ago so hoping to pick up in the next couple of days. I was really downhearted when I saw my GP the other day as the nausea I have had for over 3 years now was getting me down , cant really say anything to make you feel better other than don't stop looking for answers, and just by posting you are letting others with the same symptoms know that they are not alone. Just wondering have you tried a McTimoney Chiropractor to see if that helps your back? after I had no results from X rays ,scans etc I gave it a go and I do get some relief. Would check with your GP first though. Hope you feel better soon, hang on in there, and a hug to everyone out there thats feeling rotten today
Big hugs back to you, pitney, but obviously not too hard... what with your dodgy bones, nausea and all. Never heard of a McTimoney Chiropractor, but will look it up.
Already yesterday was a better day by far for me, hoping you also are on the up. Thanks, friend.
Hip pain and diorreah for me too every day . Doctor now testing homocysteine level s which is a bit of success
Let me know how that goes, hedgehog. I think my Dr asked for this but was not available from the local hospital, and then we moved on to other things. So yes, it is a bit of a success. Progress is progress. Fingers crossed for you.
Hi there,my symptoms are all the same.Its nice to know its not me imagining all the pain. I.ve only just been diognosed but have suffered for a few years now.Finished loading doses only a month ago but after a breif respite my pains and stiffness are all back.I.ve been told i will feel better in 3/4months. Was it the same for you.
Well, Perrjack, I'm hoping the next 3/4 months will be the telling ones, since the previous 3/4 have been a bit of a disappointment to tell the truth! Was in freefall in September and now hoping reloading carries on for as long as it takes because it is very hard to say "This is as good as I'm ever going to feel now, so let's give it up and concentrate on maintaining current level." At least my hair's stopped falling out- I really was beginning to look like my logoface! Keep believing !
I had back and hip pain (not diagnosed with bursitis but thought that's what it was when diagnosing myself using NHS and Google!) which all decreased when I started self injecting every other day.
Interestingly, I haven't had any pain at all over the last week while I have been injecting every day (a bit of an experiment due to other issues going on which I needed to concentrate on, so didn't want any tiredness if I could help it!)
Jennie16, I wasn't exactly diagnosed with bursitis either, it's just that the physio told me that was how she was approaching and treating this problem, although nothing showed on MRI scan.
This was one of the problems that I originally took to my Dr when all this started almost 2 years ago, before I knew anything about B12. What about you? Do you just take B12 for pain relief or are you B12 deficient/ PA diagnosed? Did you begin self-injecting because your B12 injection programme proved inadequate in every way, or because you wanted to see if you could get rid of back/hip pain specifically?
I'm still trying to work this out with Dr's support, although I know one of the nurses is showing signs of becoming reluctant. Not going to stop trying just because she thinks she's overdosing me or making my arms sore!
I originally went to the doctors because of hip and back pain that had increased over nearly a year. I was lucky to be tested and diagnosed with b12 deficiency and given 6 loading doses which made me feel on top of the world and also made me realise I had slowly slipped into a pit of other symptoms, such as breathlessness (thought I was just unfit), tiredness (had been working hard and didn't compute the need to sleep at 5pm being odd), brain fog (thought I was just tired from working too hard) and lots of others that had snuck up on me.
Around 5 weeks after having the loading doses I dragged myself back to the doctors because every symptom was back with a vengeance and I was having trouble just lifting my head off the pillow in the morning. My doctor refused to give me another jab and after battling about overdosing on b12 I got everything I needed to self inject and wrote a letter to the practice asking for the proper treatment for neurological symptoms.
They replied by explaining that because I was now self medicating they would no longer give me a three monthly jab and they also wouldn't monitor me.
I've now been injecting every other day since June and take sublinguals on the days I don't inject. However, as I mentioned above, I've recently been injecting every day and have had no pain at all.
Sorry... tried to keep it short!
Don't be sorry, Jennie16, short sometimes doesn't help get the point across, and of course the history. You've been really helpful.
I don't understand how it seems to be accepted -with NO evidence at all- that there is a danger of overdosing with B12, and yet when trying to make any sort of change to the regime, "lack of supporting evidence" is often given as the reason for refusal. This even though the BCSH guidelines have discredited most of the tests because of the likelihood of producing unreliable results! From our perspective, this is a real lose-lose situation and would be barely worth wasting our failing energy on, were it not vital to any quality of life.
As for overdosing, I have yet to find anyone here who has any more to complain about than spots. Evidence in itself perhaps. Anyone welcome to make me wrong!
Hi Cherylclaire
There's DEF a link for me with low b12 and hip pain. It's usually one of the first noticeable symptoms.
I'm sorry I can't offer you any more scientific advice than that but It's a thing without a doubt.
But sorry you're feeling so bad. Hot water bottle helps me a lot?
Take care
This is a very old post but it very much related to what I have going on right now. Did you ever get it to resolve?
Not entirely, Ctadds1 , I must confess.Strange to read back over what we were all talking about six years ago !
Like others, I now have not seen my supportive regular GP for three years.
Unsurprisingly, I did end up self injecting. The 2 injections a week that I was given continued for six months and then I got worse, went back to her and she reduced it to 1 a month, the maintenance dose that was decided on for me. Then sent me to haematologists.
I was not yet ready to call it a day - so did not feel that 1 injection a month was right for me. The locum haematologist I saw agreed- and told my GP not to give me more than 1 every 2 months ! Halved it !
What can you do but self inject ?
Later, I had to see a new GP urgently with heart problem. My regular GP was on holiday. It got mentioned that I was self injecting every other day. I knew I was in trouble when he stopped talking about my heart and couldn't wait to get rid of me. Sure enough, he sent me a letter - saying that there had been a surgery meeting and it had been decided that unless I accepted their regime only, B12 injections from the surgery would stop.
I didn't even bother to reply.
I was livid at the time, but soon realised that nothing had changed. I let my usual GP know what he had done in her absence, but she told me that my folate and ferritin etc would continue to be monitored. The rest I could do myself anyway. She found out my heart problem was ventricular ectopics - uncomfortable, difficult to sleep, but not dangerous. It went on it's own eventually and I didn't need to take the statins offered.
Today is a bad back day, so I have changed my plans, stayed in and did what I could indoors instead. Lower back, left groin/hip pain, and sometimes low abdominal pain on that side too. I am sometimes aware of what has worsened it - like toting watering cans up and down the garden, or carrying 4-yr old granddaughter on my hip, etc.
It's not as frequent as before, or always as severe. I got to a stage where standing up straight was not possible- legs wouldstart shaking from the effort. One of the reasons I first went to a GP - because there I would be, at the bus-stop in the morning on my way to work, holding onto the bus-stop sign for dear life and praying there would be a spare seat on the bus when it eventually came. That can't be right. Nothing was ever found that could explain the pain, just usual wear and tear stuff - I had MRIs, etc.
I was later found to have osteoporosis of the spine but was told that this was not the cause. I now take vitamin D on prescription and Raloxifene. I have been walking a lot for the past few years, and it has now been downgraded to osteopenia on the last Dexascan results !
Who knew that could even happen ?
So, does any of this sound familiar to you at all ?
Keep looking for answers. I really hope you find out what is going on.
I am still bothering the Oral Medicine consultant with my constantly burning tongue. Yes, another B12 deficiency symptom - so why hasn't it gone away by now ? Really annoying me.
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