What advice/approach can I give to woman (I har... - Thyroid UK

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What advice/approach can I give to woman (I hardly know,) who has lived with Fibromyalgia for many years and in constant pain.

Coastwalker profile image
17 Replies

I have recently found out from my Daughter that a friend of her in laws has had Fibromyalgia for many years and can not work, her young child helps care for her, I have met her recently and she looks terrible, she looks as though she is in constant pain all over, is taking morphine and might have depression.

Please advise further on how to tell her, don't want to build her hopes up for a quick cure.

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Coastwalker profile image
Coastwalker
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17 Replies
Hennerton profile image
Hennerton

Could you persuade her to see her doc and at least have full thyroid check of free T3, free T4 and TSH. Then get someone to post results with reference ranges here, for people to comment. I realize very difficult if you do not know her well. Perhaps you can be her guardian angel or could your daughter help? She is probably one of those dreadful cases we read about where either her doc has never tested for thyroid or if he did, the results were not glaringly obvious and she has been abandoned to her misery. Makes me so angry. Do hope you can get help for her and I admire you for trying by posting here. Let us hope we can change her life. x

Coastwalker profile image
Coastwalker in reply toHennerton

Thank you Hennerton, needed more reassurance I was doing the right thing.

Duchy82 profile image
Duchy82

Its very difficult. My mother is the same she has been diagnosed with fibromyagia and has been tested for thyroid problems that came back normal. I'm still convinced she would benefit from T3 treatment but with the normal blood results I don't think her gp would consider it one bit. like you said there is no guarantee that it would be a quick cure but your daughter could always ask the in laws to suggest a thyroid check to their friend and then take it from there I suppose.

Marz profile image
Marz in reply toDuchy82

...thought my reply below may be helpful to you and your Mum - hope so ......

Coastwalker profile image
Coastwalker in reply toDuchy82

Thank you MCoates. Worried for her that blood tests would come back normal.

shaws profile image
shawsAdministrator in reply toDuchy82

This is from Dr Lowe:-

web.archive.org/web/2010103...

Also click on Fibromyalgia and Fibromyalgia Medicines for information. Some links within may not work.

web.archive.org/web/2010103...

Marz profile image
Marz

.. I was diagnosed with FM some 14 years ago and then Hashimotos in 2005. People with the auto-immune version of thyroid illness seem to suffer more with FM. So it is important for her anti-bodies to be tested - Anti-TPO. All my Thyroid functions - FT4 FT3 and TSH were all in range - but anti-bodies were high. If they don't test the anti-bodies then how do they know that anyone is suffering the Auto-immune version - which is the most common thyroid illness throughout the world. Am afraid it is all about costs....

I started on T4 then T4/T3 and am now on T3 only and LOADS of supplements. She will need to have her B12 Ferritin Folates Iron VitD tested and they should all be at the top end of the range....

Maybe she also needs to address her gut and any issues there she may have.....it's a difficult thing for you to handle but I am sure you can do it !! Am happy to help if you have any questions...

Coastwalker profile image
Coastwalker in reply toMarz

Thank you too Marz, (See below, I forgot to press reply to this bar :) )

Coastwalker profile image
Coastwalker

Thank you too Marz,

Even though I have read about Fibro M being to do with the Thyroid, not just an illness on it's own that can only be managed, (I too was told by several members on here that my symptoms were the same, luckily I was diagnosed with Hypo first and not FM.) I still feel I need that extra reassurance before I approach this poor woman. I would love to escort her myself to Docs if it were possible.

I was sat in the Doctor's surgery last week when I overheard aother friend of my daughter's sitting nearby asking a friend of hers who was sat the other side of me what was wrong with her, she replied she had Fibromyalgia, just as I was thinking of saying something to her I got called in to see Doc. Think I might be able to still find out who she was, do you think it would be wise to do so ? Feel like I should if it helps another sufferer.

Marz profile image
Marz in reply toCoastwalker

Sadly it is one of those modern conditions that came about with ME and CFS - the latter two are how it is defined in the UK and FM in the US. Now seems the UK is moving over to FM too !! No wonder we are all confused. If you take a look at shaws - in the directory on this forum - she posts many times with links to Dr Lowe who wrote the book - The Metabolic Treatment of Fibromyalgia. Sadly he died but she quotes the links to his website which is in probate and is locked - and I am sure you will find some good information which may help you.

I am like several on this forum - feel I would like to carry a leaflet around with me that I can give to people with information so they can go and do some research themselves. Sadly not all of us want to go around the next bend on our walk through life. I still think it is worth trying to approach and help people - so rewarding when people actually do listen and make huge steps forward on their own...

Good Luck.....Go for it !

Coastwalker profile image
Coastwalker in reply toMarz

Think I will try to find her Marz, networking and making people more aware can only help :)

Marz profile image
Marz in reply toCoastwalker

...just be prepared to be rebuffed - denial can be part of the scene when you are feeling poorly. Also there are people that are happy with a label - which means to some that nothing more need be done !

In the States they decided to create a diagnostic formula to diagnose FM - I think you have to have 14 out 18 painful points that match on both sides of the body. This was to help people wishing to claim on their Insurances when they were unable to work ! - otherwise it was invisible and no blood tests ! Have been on a forum with FM sufferers and have only ever had one response when I mention the thyroid - ummm ?? :-)

Coastwalker profile image
Coastwalker in reply toMarz

Not surprised to hear you only had the one response Marz, need to shout louder, I have done a posting on 'UKcampsite' forum under the heading 'Fibromyalgia' and guided people onto Thyroid UK, so far it has had 270 + hits and two people querying about their symptoms.

Also a while ago I Posted on the same site about 'Stop the Thyroid Madnes's and spoke to several people about it, one member introduced me onto the Thyroid UK site so that benefitted me also, my 'STTM' Post has had 1,450 hits and has hopefully helped someone.

Marz profile image
Marz in reply toCoastwalker

...that sounds positive :-)

shaws profile image
shawsAdministrator

If the lady you refer to is able to have a private consultation - email louise.warvill@thyroiduk.org for a list of doctors.

Before blood tests came in around the 70's (I believe) people were diagnosed by their clinical symptoms alone and prescribed natural dessicated thyroid hormones. Since the thyroid gland blood tests 3 new diseases were finally given a name:- fibromyalgia, chronic fatigue and M.E.

Coastwalker profile image
Coastwalker in reply toshaws

Guessing she won't be able to afford a private consultation.

Learning more each day Shaws. Thank you

Coastwalker profile image
Coastwalker

Will try to remember SS APsnotFAB.

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