Fibromyalgia Symptoms but Vitamin D Deficient - relief!

[AField]

Hi All,

I've been experiencing symptoms as those described for Lupus and Fibromyalgia for some time now - building up over the last 2 years. My GP surgery has a system that allows you to see any GP within the practice, so I've seen 7 GPs within that time frame, but only seeing the last one (a trainee GP) have I started to get some help and support. The previous 6 have treated me with antibiotics for over 6 months on 2 occasions citing "fungal nail" as the reason, without nail clipping tests etc. I've frequently been told that I have "health anxiety" and talking therapies will help. I know my own body and I know that things aren't right! Anyway, the trainee GP that I've recently seen has listened without judgement, order a nail clipping test to be done, which showed NO fungal nail and NO other infection, and prescribed me with Aveeno body wash and lotion for my terribly dry skin, estradiol pessaries and betnovate steroid cream for the mysterious lacerations to my vagina and labia (thinking this is lichen sclerosus), and they've all helped! At my last visit, she decided to do a simple Vitamin D blood test, and it came back showing a chronic Vitamin D deficiency - BELOW 20!

WHY was this not considered earlier! I'm so upset, angry and disappointed with the lack of awareness. My GP instantly dismissed me as hypochondriac and wasn't interested in understanding my feelings or sysmptoms. I may not have Lupus or fibromyalgia (still not totally convinced I don't but bloods are clear) and my symptoms are due to the Vit D deficiency, however, I have suffered in agonising pain and with extreme exhaustion for 2 years with potential consequences and WHY?

For anyone else suffering, please push for this simple test (UK) and see if you too are deficient in Vitamin D!

[whisperit]

I heartily agree, AField. Two years of multiple investigations and specialist referrrals, have left my medics scratching their heads over what could be wrong, and prescribing a whole load of meds - including ondansetron, gabapentin, duloxetine, amitriptyline.....

Last week, I made a careful review of all my blood results, to discover that at no point over that time have I had my vit D level tested - despite the fact that 5 years ago, I had multiple femur fractures, and my rheumy diagnosing me with fibromyalgia last year.

Regardless of whether I have an issue (I'm now waiting for results), it's amazing that so many clinicians have been willing to recommend heavyweight meds without having done such a basic test. x

[AField in reply to whisperit]

I know! All the meds I've taken, unnecessarily. It's ridiculous. I'm holding so much hope on starting to feel better with the vitamin d prescription. My "diagnosis" was purely down to luck, or fate, and having the right GP listen to me. It shouldn't be down to luck though! Whatever results you receive, Whisperit, I wish you the very best! X

[whisperit in reply to AField]

thanks, you too x

[PMRpro]

Don't be too sure that your low vit D is the cause of all your ills. Wait and see what happens. My husband had a vit D of 7 and not a single symptom except possibly raised BP which has fallen since his vit D is better. Otherwise no change.

All the things you describe could well be part of an autoimmune disorder - and low vit D is also frequently found in a/i disorders so could be sign rather than the cause. Your trainee has done the right thing by listening and acting where she can - and your other doctors were wrong to regard you with preconceptions. It happens a lot. And my own personal opinion is that fibromyalgia is the go-to of the lazy doctor - because they know there is no real cure or management so that gets them off the hook.

I do hope your new find will also get you seen by the right specialist. Because that is what you need.

[abt84]

Hi,

I’m so glad they have found this, but so unfortunate it took so long to test for it.

I too have low vit D (family trait) so had a test when I was pregnant and have been on vit D ever since. However I have had a range of symptoms despite this and am waiting to see a rhumy to see what it could be.

When seeing the 7 GP’s, have they ordered other blood tests for you?

[Treetop33]

Goodness how frustrating. But great that - finally - you know. I hope improving your D3 levels improves things quickly for you.

[Margas]

My case is similar to yours. Symptoms, never ending appts and tests, my GP regarding me as hyponchondriac and only after 2 years did he ordered ANA test and vit D which was 14.

[Margas in reply to Margas]

Did he order

[Barbara17]

O M G !!! Can’t believe what I’ve just read in your post. Virtually all you wrote about has applied to me over the last few years. And only today - after I’d asked a consultant dermatologist to do a vitamin D test - have I been diagnosed with a vit D deficiency. And I only asked because I have been told to avoid sunlight. I’m now waiting to see my gp to see what form of treatment is suggested. Like you I can’t believe no one has thought of this before now. I hope your treatment is going well.

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