Digonosis of fibromyalgia today: I received a phone... - NRAS

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Digonosis of fibromyalgia today

Jules40 profile image
9 Replies

I received a phone call on Thursday to attend clinic today, been waiting since August. The consultant asked about my symptoms and then did a quick examination of all my sore spots, she was asking about my dry eyes and ibs. That was it very quick, gave me a helpful leaflet and a lot of the fibromyalgia symptoms seem to fit. She asked about my exercise levels and said I must do more, think she was hinting that I need to loose weight. Had blood test, hand feet and chest x Ray and she will write to me with results of these. She will ask my gp to arrange physio and maybe anti inflammatory tablets, they may upset my stomach more?

Glad I have answers now although I have never heard of fibromyalgia until today and I am pleased I coped well as no one was available to come with me today and the school phoned me to say my son was sick in the middle of clinic!

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Jules40
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sylvi profile image
sylvi

Look on the NRAS website as they have a lot of useful info for fibro. I have fibro as well as ra and i find the fatigue the hardest part of the disease.xxxx

Leonwp profile image
Leonwp

Hi Jules, i cant help much with fybro but i know how it feels to wait a long time suffering from symptoms and wondering whats going on, i was very releived to get some action and a diagnosis and similar to yourself i had knew nothing of RA. I hope now that treatments are found that help you and you can move forward (gently) especially as you obviously have responsibilities and that makes any long term illness more complicated. I am quite severly disabled as RA hit me unusually fast and hard and i have had very sympathetic responses from people. But i do think i am very fortunate that i have no responsibility other than for myself, if i needed to rest, which is now always the case i could rest. If i was still able to i would cross my fingers for you, but instead send you gentle hugs and hope that things improve for you. Im sure you will find lots of support here from people who know about fybro.

Simba1992 profile image
Simba1992

I really recommend looking into LDN, very good results with FM. A nontoxic alternative. ldnreaserchtrust.org, more information. Lots of research and studies done at present.

Jules40 profile image
Jules40

Thank you for your kind words and advice, just wondering how much exercise you are doing ? Consultant was asking if a walked 2 miles, so I need to step things up a bit. I'm so stiff and sore after a walk

Hi Jules - It sounds like you had a hard day yesterday - I'm sorry for that... I know what you mean about the weight thing - They always want to pin it on that, and while that may have some basis, in my research it is not the biggest issue. As for exercising more, you can only do what you can do... and you don't want to worsen your joints by pushing it too hard..

Hope you are feeling better and your son is too!

Coastwalker profile image
Coastwalker

I do hope your Doctor told you that fibromyalgia is a 'listed' symptom of both Low Thyroid (Hypothyroidism) and/or Vitamin B12 Deficiency Jules40 ?

Both 'Thyroid UK' forum and the

'PAS' forum (Pernicious Anemia and also for vitamin B12 Deficiency patients) are on here Health Unlocked.

Jules40 profile image
Jules40 in reply toCoastwalker

That's helpful to know, they took blood yesterday so I will ask if they have been checked. The symptoms are very similar

Coastwalker profile image
Coastwalker in reply toJules40

Idea only Jules40,

Many low/under active thyroid and B12 deficiency patients now ask for a printout of their bloods and ranges and post them up on either or both the Thyroid UK or PAS (Pernicious Anemia) forum site for others to help them forward.

Doctors are well known for over looking/missing both these patients, I read their sad stories daily. They go to see their Doctors with all the thyroid/B12D presenting (fibromyalgia type) conditions, then their Doctor says ''no your bloods are negative or you are fine, there is nothing wrong with you.'' ???

(yet they still have all these 'presenting' problems)

or most get 'it's all in your head, I'll prescribe you some anti depressants' (please do not fall for that one.)

Ps. There is an American website called STTM or 'Stop The Thyroid Madness' The title says it all. :)

hi Jules,

you may find these sites helpful if you haven't already looked at them:

fibroawarenessuk.org/

fmauk.org/

Regards

Beverley (NRAS Helpline)

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