Saw a different doc today who said I don,t need vit D for fibro so wont give me any more, also I asked if I could have a neurology

scan as I was sure I read research somewhere. Does anybody know where to find this? I am concerned about MS and Parkinsons not having been ruled out. I was diagnosed 3 years ago pain and fatique every day most nights can't stand and have a vibration sensation all over even on my tongue. Any advice? Doc said to bring study and she would look at it.

18 Replies

  • hi vajrayogin1,

    I am afraid I do not know about the research you refer to - but I am sure the admins will - although it is Friday night so they may not get back to you until Monday / Tuesday - but hang in there - they are really good and helpful - the members too.

    all the best,


  • Thank you for replying, good to know there's someone out there. x

  • Hi vajrayogin1

    I am so sorry to read that you are having these issues at this time, and I sincerely hope that you can find some resolution and relief to the problems. Did your GP agree to the scans?

    I have pasted you the link to this report that you requested:

    I have also pasted you 2 links to the NHS Choices website for MS and Parkinson's disease:

    To check for MS you would need an MRI to show up any lesions on your brain, they would not show up on a CT scan. As for Parkinson's disease, this (in nearly all cases), only shows up as and when you start to age! However, you should look on the bright side as there are only 100,000 MS sufferers in the country out of nearly 70 million people, so the odds of you having it are small.

    All my hopes and dreams for you


  • Thanks so much for your help. I have printed off the pages. When I was first diagnosed my blood test came back saying I had less than half the recommended amount of vit D. I expect a blood test now will say it's ok considering taking the supplement but perhaps without it I may become deficient again. The only help I have is amytryptaline 25mg no pain clinic or support, I take venlafaxine and have done for about 20 years!

  • I can imagine that your Vitamin D reading are good by now! Maybe you should discuss with your GP what else is available for you? It can't hurt to ask?

    Take care


  • Hi, the NHS own website states that MS should be ruled out before Fibro diagnosed, here's the link:

    Hopefully if you take this to your GP they will refer you to a neurologist for an MRI to rule out MS. In afraid I don't know about testing for Parkinson's.

    With regards to Vit D, have you had a blood test to check your levels? If you are deficient in Vit D then they need to prescribe it either in a high dose or as a multi-vitamin tablet. However you do not need to take Vit D for Fibro if you levels are normal and in fact it is a vitamin that you can overdose on, so this maybe why GP was reluctant to prescribe. They should however do blood test for you to check (if not already done).

    Good luck & hope you can have your mind put at rest and get a suitable treatment plan for you x

  • Yes I realise vit D can be toxic. My levels were low to begin with 3 years agol Thank you for your help.

  • Hiya, 2 years ago my go my gp sent me for a mri scan as i started shaking, having twitches, itches, crawly sensations, loud noises made my body buzz and tingle. The list goes came back all clear. The neurolagist told me it was fibro. He told me it was due to nerves being damaged and confused making me have m.s type symtoms. They did nothing but up my meds, pregabalin and tramadol. It doesnt stop the symptoms but is does calm them some what. If u do believe u have these diseases u should discuss them with ur gp and ask if u can be sent to a neurolagist. I typed fibromyalgia and ms symptom s in Google, there was lots of pages talking about it...becky

  • Thank you for all your advice, very helpful.

  • My rheumatologist suggested Vit D supplements, in fact my own GP suggested taking it anyway so I do. its cheap as chips to buy, wouldn't think of asking for it to be prescribed. I take magnesium also as its supposed to help as a muscle relaxant..........

  • Hi sheena_t

    Just thought I would quickly post you, and ask, are you aware that cheaper vit d pills are less than half the strength of the quality pills?

    The better ones have 25ug and cheap ones have 10ug. So please have a read on your bottle? However, both only say one per day. The higher dose is for those who have a deficiency in vit d

    Hope that you are feeling as well as you can be today

    Ken x

  • Thank you both for advice. The ones I was prescribed were high strength because at the time my levels were less than half the average amount l will get a blood test to check again.

  • Hi Ken,

    Yes, mine are 10ug - I do only take one a day, my GP said I should take them, years prior to the Fibro, due to living in the gloomy north. Rheumatologist said he would recommend that I continue taking them for the Fibro, not sure if I am deficient, nothing was mentioned after the numerous blood tests I've had over the last 6 months investigating the Fibro symptoms. Sheena x

  • hi i have low vitD and the dr told me i have to take FULTIUM- D3 800IU CAPSULES 1 per day 1/2 hour after a meal in morning and i have the same as you i was told it would help with the pain in my body i have only been taking them for nearly a week so i don't really know yet if they do help or not so maybe you could get them if they could help you all the best

  • I cant give a definitive medical statement but vit D was one of the things eliminated in my diagnosis as a lack can cause pain on its own. I was prescribed 20 000 units a day for 2 weeks to bring levels back up and GP said it would not be necessary to take a regular supplement. It IS toxic in large doses but how large? The pain was still there so he said it wasn't from D deficiency.

  • Looked at that link. It confirms my opinion. Vit d will MAY reduce pain but only if there's a vit D deficiency. It admits there's no cause and effect link. That's no reason not to have a vit D test or not to try a course of supplements.

  • Hi, just seen this post now. How are you now? Did you ever get an MRI scan? The reason Fibromyalgia does not get recognised much by the medical community is that it is not suppose to cause damage to the skeleton or organs - apart from the severe pain especially after lying down. Also, there is no test for Fibromyalgia it is only diagnosed by a Rheumatolgist on a 25 point basis - ie - They have a tick list - during an examination the Rheumatologist will go through this list on your body and if fifteen or more points are painful then you are deemed to have Fibromyalgia. Rheumatologists have stated that Fibromyalgia remains a mystery and gives the same symptoms as - Polymyalgia, M.S. and sometimes those of Motor Neurone. I only know all this as four years ago I badly damaged my spine. After nearly killing me with test through at Newcastle, and treatments that did absolutely nothing; I was diagnosed by two separate Rheumatologists (one at R.V.I. the other at Whitehaven Hospital that I now had Fibromyalgia. How? Stress brought about by the NHS prodding and using me as a guinea pig, causing me to have to retire from Teaching which I loved. I could write a book. I think I may! Hope you are as well as you can be?

  • Hi Patsy235, Thank you for the reply. It is now almost 5 years since being diagnosed with Fibro. I am waiting for an assessment with Dr Spickett from NRI who I will see see some time in Feb next year, he is a consultant immunologist who specialises in M.E. The first 2 years were so bad pain wise fatigue seemed secondary, however fatigue is now in the forefront. I have managed to pace myself and avoid stress as much as possible, also I sleep much better with the right dose of amytryptiline for me - 10mg.

    I am sorry to hear of your experience with NHS and your accident. I hope you are well as can be expected. It's good to have heard from you as locally Fibro sufferers seem sparse.

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