I realize there was a discussion on bone pain a few days ago but can’t find it. My apologies.
I have unrelenting, often intolerable bone pain that has ruined my life. I have been chalking it up to vitamin D deficiency. I am vitamin D resistant and treatment is not raising my D level. I do not tolerate massive doses. It makes me quite sick.( Vitamin D is actually a steroid-like hormone. )
It never occurred to me that B12 deficiency could be causing the bone pain. I have been self-injecting every 3-4 weeks for about 9 months. I do get side effects from this too so I am reluctant to increase my injection frequency. However this bone pain is egregious. I have not really noticed a resolution of anything specific to vitamin B deficiency except my blood tests are much better. I suffer from digestive issues, arthritis, osteoporosis, worsening pain especially in my bones, and lifelong insomnia. It’s hard to know what the B12 deficiency was causing, symptom-wise so I am not sure how to measure uf Ian taking enough. I am nearly completely disabled. Can’t sleep even a hour because of pain. I am intolerant of pain-relievers of any kind.
Could I possibly need more B12 for this pain in my bones?
Thanks for any thoughts!
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Thank you, Nackapan. I have been on a low(er) FODMAP diet for quite some time. I think it helps my digestion but I am pretty malnourished so I do include some small servings of FODMAPS most days but very small servings and I seem to do okay with them, except dairy, unfortunately.
Before I started B12 treatment, I had pain/discomfort in virtually every muscle, joint and bone and was diagnosed with fibromyalgia.
These days, I only get discomfort and pain if I don't get B12 injections often enough.
I'm in UK and I need far more B12 than NHS treatment allows. I need a B12 injection every week to keep symptoms at bay and because the symptoms come back within a few days of an injection, I suspect I really need to have at least two injections a week.
Have you ever seen a doctor who specialises in bone problems?
I have read that B12 deficiency can affect bone marrow.
Search online for "B12 deficiency bone marrow" for more info.
Have you had your calcium levels checked?
Have you had any thyroid tests?
May be worth putting any thyroid results you have on Thyroid UK website on Health Unlocked.
Calcitriol ( Vit D3 ) is a very toxic which I have to take for my hypoparathyroidism, you are quite correct in saying it is a steroid type of hormone. Have you had any gastrology investigations ?
I also suffer with the bone pain. Have you tried the pain patches ( prescribed by the Gp ) or CBD oil which you can purchase to relieve the pain ?
To help me sleep I find healing bilateral beats to be quite therapeutic. I put my mobile on my ear or at the side of my pillow and often fall asleep whilst listening.
I had little choice but to increase my injections to substain a bit of respite from the pain and now inject daily. It's been a slow process but at last I am able to function a little throughout my day. I have set backs if I do too much or have a particularly stressful.
What are your folate levels ? What tests has your Dr performed to get to the root of your issues ? It's early days of your healing and many of us are worse before better. I empathise with your misery and hope you find a solution and some respite soon.
My folate is on the low end of the low range. I find all B supplements to be very stimulating so I have avoided taking folate supps (methyl-folate makes me super sick, anxious, insomnia etc.) I have some folinic acid sitting on the counter staring at me. My trials with folate supps has never gone well. I have been trying to increase my folate levels through eating high folic acid veggies though I am not sure I am absorbing it. CBD makes my gastric motility come to a complete halt, sadly.
I used to tolerate other pain meds but not anymore. I grew tolerant and had inter-dose breathing problems. Because of my gut problems, NSAIDS are out of the question.
I will look up the bilateral beats.
How high of a dose of D3 do you take? The docs want me on massive doses. They do not believe me that it makes me sick, even in small doses.
Thanks for your input, Jillymo. I have considered increasing my B12 but I am worried that it will throw my other B's way out off....
The only thing I am doing is ice/heat/distraction and prayer. I am back to the doctor this week to discuss Vitamin D but I do not expect it to go well. She thinks I should have infusions; I feel like it would be like agreeing to chemotherapy as small doses even make me sick. I will use the sun (which gives me insomnia) as soon as it gets warm and sunny enough. I was able to bring my D up slightly that way last year but not above 24. I am "vitamin D resistant" according to my genetics.
I have to take very high doses of Vit D3 because of my Hypoparathyroidism. It could be your low levels of vitamins that is causing your nausea. If I were you I would have the transfusion at least if you have a reaction you would be in the right place and it would be witnessed.
I am not surprised you feel so unwell your vit D, B12, folate and probably magnesium need to be raise. Your gastrologist ( if you have one ) should be doing further tests to see why your not absorbing.
We do not get enough sun in this country to bring your Vit D levels up enough for you to benefit. Increasing your B12 will not throw your other B vits out. Both my B12 and folate are now really high and I feel better for it. Remember you can not overdose on B12 !
If your Vit D is low enough for your Dr to suggest you need a transfusion then I am not surprised you have bone pain. With out Vit D3 your not body is not able to absorb calcium - we need calcium for our teeth, bones ect. If you do not accept some help soon you are on a serious downward spiral.
I'm afraid praying is not going to give your body the nutriants it needs. I hope your Dr is able to advise and guide you.
There is a condition called bone marrow oedema (swelling) syndrome. The bone marrow swells causing fractures in the softer subchondral layer of a joint . It's very painful.
It can only be diagnosed with an MRI scan; it can't be diagnosed with an XRay.
It's associated with Vit D deficiency though I imagine B12 is a contributing factor.
Raising Vit D levels helps in my view but the key treatment is to rest the joint and put no weight on it.
One typically sees a Rheumatologist or Orthopaedic surgeon.
Here's a paper on the disease by Dr Patel, a consultant Rheumatologist at KCH:
Thank you for taking the time to write this. I am going to bring up thyroid issues (even though my numbers trend normal), osteomalacia (soft bones as in rickets in kids) and hyperparathyroidism during my visit this week. I have learned that doctors get really irritated and label me (hypochondriac, etc) if I put too many questions out there. I will, however, put this bone marrow on my list for further investigation if need be. Thank you!
If you do not get some Vit D into you it can result in hypocalcemia due to not enough calcium. Rickets is also caused by lack of Vit D and calcium - your levels need to go up or you will sustain serious damage.
I doubt 'very much' if you have hypoparathyroidism which is sometimes induced by thyroid surgery. Mine is rare cause of the condition.
Hyperparathyroidism would mean you have more than enough Vit D and calcium. You seem to be getting muddled with the hyper and hypo. If you were to join all the dots of test results and deficiencys I feel you already have the answer's for your symptoms.
I only say that hyperparathyroidism needs to be ruled out because I have very low vitamin D, PTH 25% above high range and calcium trending higher. I am going to test if my calcium has continued to go higher which would indicate that my parathyroid is drawing more and more calcium from my bones. I have not suggested hypoparathyroidism (unless mistakenly) because my D is super low.
I have been trying to connect the dots for a couple years and seen multiple doctors who do not seem able or willing to do so. In the end it is likely osteomalacia, which requires massive D infusions. Too much D is toxic for people like me.
I am mobile, and have found a weekly sun bed or sun shower...only 10 mins or so really helps over winter months. Not enough to brown me, BUT it has to be first thing in the morning otherwise bad nights sleep. Helps keep vit d levels up ... UK winter day light sunshine doesn't do it for me.
I know you are disabled, but wonder if you could try a portable version at home.
Thank you RosyDawn. I did find that direct sun exposure helped my bone pain somewhat last summer but the insomnia was really bad. It’s a trade-off. I should be able get some good sun time by now, but the weather has been unusually gray and cold for this date in this part of the US. I do try to get the sun time early enough in the day but late enough that I am getting good therapeutic UVB. Thanks for sharing.
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