Diagnosed with fibromyalgia

[Kittybaker]

Hi everyone

I was diagnosed yesterday with fibromyalgia and possible coeliac? I know a lot of us have this diagnosis alongside Hughes.

Can someone please tell me how to help myself with my diet?

What do I need to be eating??

Many thanks

Natasha

[MaryF Administrator]

Hi there, firstly it is possible to have gluten intolerance without having fully blown Coeliac Disease, also the trio of disease so often mentioned by Professor Hughes and our other doctors who go into more detail with Hughes Syndrome/APS is Hughes Syndrome, Sjogrens and a Thyroid problem.

The problem in the UK with diagnosis at times, is the TSH test being the one and only test done for Thyroid problems, it is in my opinion highly unreliable, it missed me for instance for years! So, of course you must check your Iron, B12 and D, as low vitamin D will make you very unwell and your symptoms worse, also if your Iron is low the Thyroid struggles to take up any Thyroxine in the body, natural or otherwise

. If you are suspicious about your Thyroid regarding being given a diagnosis of 'Fibro' which I myself dismissed! Then please read this and also consider that you may have to privately pay for the tests, which I do myself:

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

Thyroid UK are an excellent charity, and have worked hard to try and get cheaper tests for patients, I do a finger prick test through the post via Blue Horizon.

MaryF

[Kittybaker]

Thank you both

I was referred to Dr Lewellyn who specialises in infectious diseases, thyroid and rheumatology at St Woolos hospital after Sarah Lewis referred me

I am on B12 injections for life as for some reason I don't retain it. My thyroid t3 and t4 have been checked. My levels have come back okay all they are rechecked every 3-6 months. Vitamin D is normal and my iron levels have been good for the past 6 months.

I am on a months trial of Gabapentin to see how it goes

I am more concerned as to why I can't retain b12

Can you direct me to some more information about Gluten free foods. It seems so daunting! I am pretty nervous about changing my lifestyle

Thank you

[JenInCali]

Hi you have good info. I have APS, fibromyalgia, Hashimoto's and maybe ankylosing spondylitis. My vitamin D was recently measured at 5 points below the lowest of normal. I think I'm not giving the deficiency enough credit in how crappy it's made me feel. I tried taking 1000 unit capsules of D3 for a few days and it made me feel so I'll.... OMG. I took it with food and all. Not sure how I'm gonna handle this issue. Any suggestions?

[Powers]

Hello, I've had fibro for years, took a while to get diagnosed. I tried everything, including diet, but nothing helped. But the one thing that was a miracle for me was taking Guaifenesin tablets (expectorant) look up "Guaifenesin protocol" on the Internet for more info. I haven't had symptoms for years. I was at the end of my rope and this was a life saver. Worked exactly the way they said it would, for me. I can explain it more quickly and tell you more about it if you're interested.

Now I'm dealing with Hughes, found out I had it last year.

Kenyon