Vitamin d deficiency

[0118sara]

Years ago when I was told i had fibro they said i had vitamin d dificiency, I take a supplement for this but has never been mentioned again, after speaking to a fellow sufferer they told me they have blood transfusions and vit d injections, anyone know anymore about this, I basically haven't spoken about fibro to any professional since being diagnosed about 10 years ago

[0118sara]

Hi thanx for ur reply, I was basically diagnosed with fibro in the middle of several big operations on my back and then failing of my 18 year marriage because he couldn’t deal with the dif person I became, so it was just something else to add to the long list of problems, so I haven’t spoken to anyone about vit d or fibro in about 8 years, as I said I was prescribed the vit d and have just taken it ever since, the specialist mentioned something about my body not being able to absorb vit d aswell as it should and that was it, I just wondered what others experiences have been, have others had other appointments about this?

I will def speak to doc about this because now at only 43 I need a knee replacement, X-ray shows bone on bone and it’s agony, allday everyday!

[Hidden]

Hello

I hadn't heard of injections/transfusion for vit d that would normally be for B12 or iron. For vit d, supplements are recommended. It's the latest buzz in the medical world, cottoning on to the lack of sun, usually, in the UK.

The pains from deficiency are different to Fibro and quite specific e.g. wobbly legs on waking. It can also induce SAD in winter and low immunity.

Fibro is more systemic and the pain all over especially at trigger points.

The fact you haven't seen anyone isn't all bad, because the treatments are few and patchy at best.

[KateAL]

Hi, my Vit D goes up and down all the time at worst I had no Vit D at all but I was just given an an extremely high dose of of Vit D tablet that they had to make. I’ve found that people that suffer from Fibromyalgia tend to stay indoors a lot so don’t get the Vit D from they sun, hence the definiency. I’m surprised you’ve not had to speak to a doctor/speclist about you Fibromyalgia though you must be coping very well, which I’m very glad to hear. Sending gentle hugs 🤗

[0118sara in reply to KateAL]

Tbh it’s a case of having to cope, I was diagnosed with fibro in the middle of having 5 dif back surgeries and seperating from my 18 year marriage because he couldn’t cope with the person I had become (boring). So I didn’t really take onboard the diagnosis because I was a broken hearted women just trying to stay upright, I just basically get through each day by taking lots of pain meds, morphine being the best, I was just thinking ifthere were any others treatments as like I said it’s been put to the back as believe it or not it felt like the least of my worries, having now had 5 Ops on back,,1 on shoulder, 1 on each hand, sinus surgery, and a knee op last year, I now need a total knee replacement as cannot walk , X-ray shows bone on bone, so was wandering is vit d, or lack of could be causingme needing all of this in the first lace, I’m only 42 it worries me what I’m going to be like when I’m 62😕

[KateAL]

Your story is very similar to mine so I do understand, it’s an horrendous amount to deal with. I would suggest to go to see your doctor to get a referral to a Rheumatologist and pain clinic they should be able to help you with better pain meds. Sending gentle hugs 🤗

[Sarahvit]

Hi Sara, I too have vitamin D deficiency and take 50,000u prescription twice a week. I have been diagnosed with fibromyalgia and CFS in 94 but the vitamin D deficiency didn’t come around until after I had thyroid cancer and had thyroidectomy in 05. I have not herd anything about the blood transfusions and the vit.D injections. So I don’t know 🤔 anything about that.

[KnackeredKaty]

Hi 0118sara, I knew about my vit D deficiency before diagnosis of fibro and GP's ignored it. The lowest level for me was 39. My rheumatologist told me that my vit D level will always be low and I should take 1000mg daily for life. I do take it but no-one is interested in checking my levels. I was not given an explanation as to why my vit D level will always be low as doctors don't know the association between vit D and fibro. 🙄🙄🙄🙄