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my rheumatologist thinks I have fibromyalgia???

(13 Posts)
PainForLife Wed 31-Oct-12 20:12:45

I suffer from severely low via D amongst other problems and at my rheumatologist visit today my consultant pressed some points on my body & asked if they hurt. every single one did & he said ur pains & troubles cannot be just down to severely low VitD. when I asked him about fibromyalgia he simply said it means chronic pain. I was given a high dose VitD injection and told to come back in 3 months.

I'm a bit confused now do I suffer from fibromyalgia aswell??? do I speak to my G.P about what else could be causing my pains/symptoms or will my consultant write to my G.P.

I feel stupid for not asking him clearly at the time or should I call him tomorrow?

BestIsWest Wed 31-Oct-12 20:49:31

Hi OP - Do you know what the cause of your vit D being so low is though?

mercibucket Wed 31-Oct-12 22:25:24

I had low vit d and it caused a lot of pain all over my body but esp all joints, feet and ankles, shins and knees. What caused your deficiency, do you know?

mercibucket Wed 31-Oct-12 22:25:24

I had low vit d and it caused a lot of pain all over my body but esp all joints, feet and ankles, shins and knees. What caused your deficiency, do you know?

PainForLife Wed 31-Oct-12 23:03:32

no idea what the cause is I was never told. just had a blood test about a year ago which showed I was severely deficient & since then been getting injections and taking supplements.

PainForLife Thu 01-Nov-12 16:56:14

ok so I feel lyk I've been run over by a bus today! been lying in bed all day. can't move a muscle everything hurts. have taken my usual painkillers & nothing seems to be helping. hopefully it's just side effects of vitD injection sad I feel really queasy like I'm going to throw up aswell plus a horrible headache!

any1 have these symptoms with fibromyalgia?

RockinD Fri 02-Nov-12 12:57:38

Fibromyalgia is simply a medical term meaning ‘muscle pain’. It is really a symptom, not a condition/diagnosis and if you have symptoms of ‘fibromyalgia’ then there will be an underlying cause, probably something going on somewhere on your thyroid/adrenal axis. Whether the NHS could find it would be another question altogether!

Also, if you have low Vitamin D, as so many of us do, you may find, as I did, that the injections you are given are D2 and not D3 and therefore totally ineffective (but cheaper!). Injections merely caused my already rock bottom levels to drop still further, taking my calcium levels with them and causing an immediate increase in symptoms.

Your consultant will write back to your GP. This takes about three weeks in my area.

PainForLife Fri 02-Nov-12 21:37:06

thanks for the explanation RockinD.

your right about nhs diagnosis as it took them almost 2 years to work out I have severely low vitD. interesting about the injections though & I completely agree the injection has definitely immediately increased my symptoms!

Can I ask what if anything have you change in your treatment that has worked?

my consultant will also take 3 weeks to write to my G.P (well his secretary will anyway).

I'm just been crippled for the past 2 year's since giving birth to my daughter. she has been lurked after by my dad and it's so hard not to be able to do anything fir your only child. all I want is for my G.P to work out what the hell is wrong with me & tell me what to do to fix it???? I just wanna be able to look after my baby girl and be sorta normal...... it may be too much to ask nhs to fix me sad

magso Sat 03-Nov-12 19:15:28

I have just received a book called 'The vitamin D solution', have not read it all yet but ordered it after reading quite a bit through the online 'see inside' facility on Amazon. I don't want to advise wrongly and as I have ME/CFS can mix up things. I take a high dose D3 mouth spray (5000IU) along with magnesium and B12 sublingual (as I was short of that too)all from good health shops. If you are severely vit D deficient it is probably best to read up on it as best you can. The NHS seems confused on the advice about D3 just at the moment. Originally I was given Adcal tablets (calcuim with vit d3) but that was stopped and I was told to buy my own D3 for that reason. I think ( although my brain is hazy tonight so I may be mixed up) there is a problem with calcium if it is given without adiquate magnesium. The D3 spray seemed expensive but it lasts ages.

confuddledDOTcom Sat 03-Nov-12 22:01:07

I don't know much about Vit D, I was diagnosed with Fibro last year and it's not something that's come up (apart from when I'm on Clexane and refuse to take the Adcal tablets). I would do your own research into Fibro, the Wiki page is a good place to start, the NHS also has some interesting information (just seen IBS is part of it and we've been wondering for the last 6 months what was going on with my belly) and there's UK Fibro too.

mercibucket Sat 03-Nov-12 22:06:01

How ridiculous that the injections are d2!

I would take a good look at your thyroid blood test results -tsh, t4, t3 - as well as checking out the vit d supplements

mercibucket Sat 03-Nov-12 22:06:01

How ridiculous that the injections are d2!

I would take a good look at your thyroid blood test results -tsh, t4, t3 - as well as checking out the vit d supplements

PainForLife Sun 04-Nov-12 12:48:09

thanks all for the advice I think your all right I need to look into myself before being fobbed off yet again by my G.P.

magso - I was told to take Adcal too & about a month ago I was told to stop taking it & Instead given another vitD supplement! I was also taking glucosamine & chondroitin for my joint pain which in my opinion was helping me just gave me a bloated stomach but I'd rather have that the the pain but my G.P stopped that as apparently it is no longer prescribeable. my G.P was taking about some recent research which showed it had no effect on joint pains. so I was given naproxen. tbh it is working but not as well as Glucosamine & chondroitin.

confuddled - I have been wondering about IBS as I've got a lot of food allergies esp wheat!

I think I need to look up all I can and look at my thyroid function test properly. dont know what tsh, t2 and t3 are mercibucket so will look it up first before looking at my blood test. I think I've got a copy of my previous test so I can make a start there at least.

thanks all again your advise is much appreciated smile

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