Thyroid UK

Fibromyalgia: the chronic pain that thwarted Lady Gaga’s tour

Possibly interesting to some...

Fibromyalgia: the chronic pain that thwarted Lady Gaga’s tour

The singer’s debilitating disorder was the reason behind the cancellation of her European tour – but the mysterious condition is not easy to explain

On Monday it was announced that Lady Gaga has cancelled her European tour, due to begin next week, because of “severe physical pain that has impacted her ability to perform”. She has fibromyalgia, and has made a Netflix documentary, Gaga: Five Foot Two, to raise awareness about this long-term condition. A statement says: “She plans to spend the next seven weeks proactively working with her doctors to heal from this and past traumas that still affect her daily life and result in severe physical pain in her body. She wants to give her fans the best version of the show she built for them when the tour resumes.”

Rest of article here - and many comments (486 as I write):

theguardian.com/lifeandstyl...

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Hope one of her medics puts her on NDT/T3!

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Where are my keys I lost my phone...are you sure this is a recent thing Mama Monster?

Gaga plans to spend the next seven weeks proactively working with her doctors to heal from this...well all the best honey, so did I in 2011 :(

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Did you recover and what was your 'magic potion'. :)

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Well no, shaws; not really. Much improved on NDT and a little better adding in a small amount of T3. That's it. Having already decided that I'd seen enough medics to know that I may as well hit my head against a wall, I resisted the inevitability of a fibro 'diagnosis'. I didn't want to be officially labelled 'disabled' and was fortunate enough to have the means whereby this wasn't a financial necessity.

My joint pain is very much lessened and at least I have a life now. If there is one thing struggling with hypothyroidism has taught me it's to be pleased with each little improvement but not expect (anymore) to be the person that I was.

She's gone and I mourned her long enough. Now I just have to find the fortitude to get rid of her beautiful clothes and shoes, continuing to mock me from the wardrobes they never leave. I get to keep the bags and by some miracle my husband, despite the fact that I'm certainly no longer as described in the brochure. That's my blessing :)

I do find it a bitter pill to swallow that although hypo, just like fibro, can rob you of a life worth living, only fibro enables one to live a life, however limited, on the wings of the taxpayer. If anyone thinks I'm fibro bashing, I'm afraid that's their problem. 🤦

But I digress. Every good wish to Gaga...

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I here'd this today on This Morning program they even brought a Dr on to talk about fibromyalgia and had a phone in. If it's true, then she? Will find it hard if not impossible to get well from this disease. Poor thing.

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She has pots of money and lots of doctors circling around I am sure.

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Saw a short clip from This Morning, a Dr Chris somebody was talking about fibro - his comments were very reasonable. However, the hype surrounding LG will not, I fear, do a great deal to further the cause of fibro. The message it appears to deliver is that you throw a lot of time and expensive treatment at it and in a few weeks all will be fine again.

I've already said elsewhere on the forum that I'm very cynical about this development - and I'm sorry about that. It is very sad if LG, or anyone else, developes fibro - but in time we all have to learn to deal with it in ways we consider best for ourselves and our circumstances. However, to wrap it all up in glitter and fairy dust and pretend it can be magicked away will not help anyone...least of all the poor misguided LG. Realism needs to kick in somewhere. Yes!!... symptoms will fluctuate over hours, days, months even years but to date, there is no cure, and understanding that is the first step towards coping.

On the other hand it may just rattle a few cages and shake out people who are best able to raise awareness of this often maligned chronic condition. I wish them the strength to do so.

Sleep well everyone!

DDx

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Selena Gomez recent Kidney transplant due to Lupus has certainly raised the profile of Lupus even down here in Australia.

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How do we tell her it is more likely hypothyroidism?

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All too many attempts to suggest that those suffering fibromyalgia should at least look at the possibility of thyroid issues end in tears.

For whatever reason, there seems to be a difficulty in sufferers accepting the idea.

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helvella

That surprises me. I could understand the medical architects of the new disease labels might not be too keen to have their modern disorders subsumed into a very old one, but the patients ought to rejoice that they might find relief from the horrible symptoms that, coincidentally, appear to be identical to those of hypothyroidism

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You are so right. We don't want some 'common' problem when it could be 'exclusive'. :)

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"How do we tell her (Lady Gaga) it is more likely hypothyroidism?", writes TSH10

Am I missing something here? Is this suggesting that a diagnosis of hypothyroidism might cancel out one of fibromyalgia!

While thyroid conditions are hormonal the etiology of FM is uncertain though many of its characteristics are neurological...and to suggest that the symptoms of FM "coincidentally appear to be identical to those of hypothyroidism" is misleading and dare I suggest show a complete misinderstanding of the condition. In any case I would be very surprised if Lady Gaga's medical team had not checked her thyroid function and addressed any abnormality.

I was diagnosed with both FM and hypothyroidism...over 20 years ago. Both are treated as separate conditions by my GP!

It is recognised that hypothyroidism is included on the FM spectrum as well as several other "cross over" conditions/symptoms... these are all significant during diagnosis.

To date there is no cure for FM though symptoms may fluctuate over hours, days, weeks, months...even years and any remission may give the impression that a cure has been effected. I very much hope Lady Gaga manages to find relief from FM but her aim to spend the following months finding a cure is entirely laudable but, very sadly, unrealistic.

If indeed I have missed something I guess someone in the community will provide the missing pieces!

Best wishes to all

DD

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I wouldn't be in the least surprised if your suggestion:

In any case I would be very surprised if Lady Gaga's medical team had not checked her thyroid function and addressed any abnormality.

were largely wrong. As many here have found, just having thyroid test results within reference ranges is all too often not adequate. The first hurdle being to run thyroid tests. The second recognising any abnormalities. The third addressing such abnormalities.

There are people who have been diagnosed with fibromyalgia who recover when adequate thyroid treatment is achieved. From my position, I cannot tell if it was a wrong diagnosis or there is some other reason.

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Sorry...but people do not recover from FM!

DD

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So perhaps some people are wrongly diagnosed and those are the ones who get better. After all, fibro is a bunch of symptoms (it just means "sore muscles") with no proper tests to validate the diagnosis (just "it hurts in a certain number of designated areas"), so it's up to the doctor's subjective opinion.

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So fibro sufferers just have a bunch of symptoms and hurt in certain areas...

Thanks for clearing that up Angel of the North.

DD

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Well, that seems to be the NHS's definition in order to get a diagosis of fibro instead of depression or arthritis or hypo or whatever. You need to have severe pain in 6 or more areas or moderate pain in 7 or more areas for at least 3 months and not have anything that can be found by lab tests. And the symptoms are the the same as many other conditions - so say the NHS

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The article about Lady Gaga has opened up quite a debate! A good outcome.

Best ..DD

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I thought I had been very careful to avoid going down the road of saying "fibromyalgia is always caused by hypothyroidism", or even that thyroid treatment necessarily has a role in every case.

Angel_of_the_North rightly picked up on the possibility of mis-diagnosis which was very much in my mind.

Even some of the members of fibromyalgia forums claim partial cure - and certainly hope of cure.

healthunlocked.com/fibromya...

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Cure is always the dream for us Fibromites, but realistically remission - if any relief at all - is the greater possibility. The outcome of Lady Gaga's seven week journey of discovery for a cure will be interesting - and maybe she will reveal something to help to us all. A nice thought...but, with or without the inclusion of thyroid issues, I very much doubt it!

Thank you for your interesting reactions to my original post!

All good wishes

DD

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We must be careful not to cling on to our conditions for psychological reasons and allow our minds to be open to all possible answers.

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My so-called fibromyalgia totally disappeared once I addressed my very deficient vitamin D, was put on vitamin B12 injections, and started self-medicating with T3 (as well as my prescribed levothyroxine). I was extremely unwell, and the pain was unbearable, plus many other symptoms. I have NONE of the symptoms now. My GP was totally flummoxed, and would not accept that the B12, D or T3 could possibly have done anything.

I totally accept that fibromyalgia exists, but that it is a word to describe a collection of symptoms. I feel frustrated that doctors throw the fibromyalgia label at people, but won't look for the cause. There will be a cause, somewhere.

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There is probably more than one cause of what is described as fibromyalgia syndrome. Dr Lowe had some success with treating fibromyalgia patients with T3 hormone, which suggests that some people with fibro may be misdiagnosed and in fact suffer from hypothyroidism or thyroid hormone resistance: amazon.co.uk/Metabolic-Trea...

The problem with being diagnosed with "syndrome" is that doctors stop looking for causes ;( What happened with the curiousity medics are supposed to have? It must be disheartening for them to see so many patients they cannot help... You would imagine they would at least try to look for what's causing the problem...

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Dr Lowe only used T3 for thyroid hormone resistant patients i.e. Fibro.

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Thyroid hormone resistance and fibro aren't the same thing. The medical term for fibro in the UK is "chronic widespread pain". People with thyroid hormone resistance require supraphysiological doses of T3, while there are people in thyroid community who were given the diagnosis of fibromyalgia and who recovered when they started taking "normal", physiological doses of T3. An average dose of T3, according to Paul Robinson, is approx 50mcg.

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Maybe I should have used the word 'widespread pain' instead of fibro. I only got widespread pain when I began levo.

This is from Dr Lowe and I think many get confused about 'resistance' or fibromayalgia:-

Dr. Lowe: If a patient has either "general" or "pituitary" resistance to thyroid hormone, this is indicated by the results of thyroid function tests. However, our studies suggest that perhaps 40% of fibromyalgia patients have "peripheral" tissue resistance to thyroid hormone—not pituitary or general resistance.

Patients who have peripheral tissue resistance to thyroid hormone have normal thyroid test results before treatment with thyroid hormone. So, we don't know that they have peripheral resistance until we've treated them with plain T3. (Of course, we treat them with T3 as part of more comprehensive metabolic rehabilitation). A three-part therapeutic outcome tells us which patients have peripheral resistance.

First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages—which might hospitalize a person who doesn't have tissue resistance—the patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.

If these patients did not have tissue resistance to thyroid hormone, the high blood levels of T3 would cause severe overstimulation (termed thyrotoxicosis). Hence, we know the patients' peripheral tissues are resistance to normal levels of thyroid hormone. Unfortunately, we don't know the mechanism of the tissue resistance. But we're determined to identify the mechanism through further studies...............

and another excerpt:

Dr. Lowe: When supraphysiologic dosages of thyroid hormone fail to suppress TSH secretion, the patient has "general" resistance to thyroid hormone. This classification of thyroid hormone resistance is different from the one that manifests as fibromyalgia in many patients. The latter classification is termed "peripheral" resistance to thyroid hormone. I will explain the difference between general and peripheral resistance.

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

TSH110 DippyDame

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Yes, they can and have done if they have knowledgeable doctors and ones who prescribe T3. Most, I think, are confused except those who were trained in clinical symptoms and prescribed NDT or T3.

Mind you these doctors were trained in the 50's.

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Although difficult DippyDame I do believe there are answers linked to the Thyroid but finding a Doctor who truly looks into your thyroid condition and understands it with appropriate medication for you is a rare creature indeed so we go on suffering.

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DippyDame

What is odd is why it only appeared as a disorder when blood testing vía TSH began for hypothyroidism instead of diagnosis based on symptoms and treatment with natural dessicated thyroid was initiated until symptoms disappeared.

It is a strange coincidence.

There is no cure for hypothyroidism by there are treatment protocols which may also address Fibromyalgia given that the symptoms appear to come under the umbrella of those of hypothyroidism.

It was just an observation of fact.

I am with Dr Lowe on it as are many others.

However, you are quite entitled to believe otherwise and see it is a separate disorder with no hope of alleviation of symptoms which is a pretty grim prospect.

I wonder if you have tried NDT and it has has proven unsuccessful in your case.

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In some ways it appears that fibromyalgia is simply a newer name for fibrositis.

nmihi.com/f/fibrositis.htm

I am not qualified at all to assess what happened in terms of definition, description, naming, etc. I do, though, remember a couple of people from my childhood who said something like "It's just my fibrositis."

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@helvella that is interesting so it may actually precede TSH testing etc. Of course the symptoms could be due to different illnesses or sub sets of the same, or even both I don't think the surface has even been scratched with autoimmune disorders and diagnosing and treating them. I did find Dr Lowes arguments quite compelling but I retain an open mind about the field and hope illucidation will be forthcoming over time. I do feel like a bit of an NDT Luddite at times 😂🤣😂

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My Dad - all 6'4'' of him - had Fibrositis. He took Fynnon Salts which he said was for his Fibrositis. A curved shaped tin which fascinated me design wise :-) He was a Farmer so had to keep going and having had Infantile Paralysis as a child he had one leg longer than the other which was thin and weak. He lived to 87 - also had Carpal Tunnel Syndrome operations on both wrists quite late in life - ummm ! An amazing man - he just kept on going - no doubt in some considerable widespread pain :-(

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Thank you for responding, thankfully I was properly diagnosed as hypothyroid many years ago and prescribed Levothyroxine which, as with you, reduced some of my symptoms. However, it still left me with pain, weak muscles, fatigue, bladder and bowel issues and so on all of which resulted in further diagnoses of FM and ME.

The original point of my post seems to have turned into another discussion about GPs allegedly poor knowledge of thyroid conditions....not my experience, but I accept it may be so for others resulting in a vocal minority then appearing as a majority. We all need help so good luck with that.

Lady Gaga has been diagnosed with FM therefore we must assume that her medical team first went through the recognised process of elimination to exclude other conditions..., including thyroid issues. She has FM, she is suffering and she is looking for a cure.

My point was that, assuming all else had been eliminated- and I guess LG had the best med treatment - she holds a hope that after 7 weeks intensive investigations she will find a cure for FM. To date there is no cure...if she finds one that will be amazing for all FM patients.

What can be extrapolated from this discussion (and frankly it doesn't surprise me) is how little the general public understand the concept of FM and the effect the condition has on those who suffer...and that suffering can be crippling. It has been described elsewhere on HU as, "After all, fibro is a bunch of symptoms (it just means "sore muscles") with no proper tests to validate the diagnosis (just "it hurts in a certain number of designated areas"), so it's up to the doctor's subjective opinion."

That simplifies a condition (and the NHS diagnostic criteria) which is far more complex and one that is all too readily brushed aside as a "bucket syndrome".

Perhaps the problem lies in the terminology and semantics.

Going back to the 1950s my maternal grandmother had rheumatoid arthritis and fibrositis, the latter being an obsolete term for FM, She was eventually bed ridden after numerous tests and treatments... including gold injections! Clearly FM did not "only appear as a disorder when blood testing vía TSH began for hypothyroidism instead of diagnosis based on symptoms and treatment with natural dessicated thyroid was initiated until symptoms disappeared".

I am also told, "However, you are quite entitled to believe otherwise and see it is a separate disorder with no hope of alleviation of symptoms which is a pretty grim prospect. " To this I would respond that there are in fact numerous protocols available to alleviate symptoms of FM - finding a cause and a cure remains the problem.

Further, there is no contention about hypothyroidism and FM presenting with similar symptoms, this is well recognised. It does not mean, however, that FM is synonymous with hypothyroidism.

I am left with the impression that NDT is seen by proponents as the miracle cure for hypothyroidism - and perhaps anything else presenting similar symptoms - despite the fact that it appears to be available only from imported supplies unregistered in the UK. If it is such a wonder cure why has it been rejected by the NHS..I fail to see that it is either lack of scientific knowledge/research or indeed cost that caused this.

To answer the question, "I wonder if you have tried NDT and it has has proven unsuccessful in your case". The answer is "No". Why? : I would not risk using non NHS certified drugs of uncertain origin.

However, I did have my blood tested independently by Blue Horizons and other than TSH being low my other levels were all well within range...so why would I require NDT to "cure" my FM?

My TSH levels are adequately medicated. - and monitored - my GP is very thorough and was supportive of my having extra private blood tests to set my mind at rest. My rock bottom Vit D3 levels have risen and are supplemented with Fultium D3 and various other levels have been checked as approptiate. I am confident therefore that my care is both appropriate and as effective as is possible.

I return to my original comment : 'While thyroid conditions are hormonal the etiology of FM is uncertain though many of its characteristics are neurological...and to suggest that the symptoms of FM "coincidentally appear to be identical to those of hypothyroidism" is misleading and dare I suggest show a complete misinderstanding of the condition".

It is heartening that poor Lady Gaga's misfortune has generated so much discussion about FM...perhaps she has already achieved something

All good wishes

DD

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Dr Lowe, now deceased was an expert on Thyroid Hormone Resistance which T3 alone resolved. Of course patients had to follow procedures, diet etc. He was Director of Research for Fibromyalgia Research Foundation.

web.archive.org/web/2010081...

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

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

TSH110 DippyDame Wishingwell grainne_foss Crzygirl

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Dippy dame. Read the work of the late Dr John Lowe. My fibromyalgia went when I started NDT.

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Not me Helvella, I am sure there is a link between Fibromyalgia and the Thyroid, I have both but Doctors will not listen to a connection mainly because they have little understanding of the Thyroid anyway. We are up the creek without a paddle.

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Sorry! Dummies? I don't understand what this means.

Good to hear you are well

DD

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DippyDame

I owe you an apology. I did not realise I had written dummies when I meant summis - I blame predictive txt. I totally misunderstood your response😳 I feel like a right dummy now 🤐

Anyway I hope LG sheds light on Fibromyalgia and helps the many people who suffer with it. I totally don't hold with the view that the symptoms are not real. They are awful and must cause a great deal of suffering. I have arthritis and ankylosing spondylitis that started at 23 and I have had some gip from them. Plus it was suspected I had myasthenia gravis, once the hypo was got under control, which was pretty scary but I only have some signs and luckily these have not progressed. The more knowledge we have about autoimmunity the better. I hope you will forgive my OTT reaction to your joke about my daft typo. I can't blame my sloppiness in not checking before posting or my reaction on predictive txt so I must take the rap!

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Not a problem...our fingers don't always do what the brain asks of them! My query was a bit brief I guess, so please don't give it another thought.

You've had a rotten time,hopefully much of this is behind you and the medics take good care of you!

All good wishes

DDx

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TSH10....if my query to you was meant as you appear to have viewed it then I would hang my head in shame!

In your earlier response to me (above) you wrote "I dummies that you have no experience of NDT..." This confused me and I was only trying to find out what you meant. I imagine this must be what you refer to as my abusive and negative attitude.

I may not have spelt my query out word for word and for that I apologise but I am quite saddened and disturbed to read your interpretation of what was an innocent request for clarification. It certainly had nothing to do with "attack others or label them as stupid because they do not hold your viewpoint" Please 're read my query.

Best...

DD

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DippyDame

Mea culpa! No worries it was entirely my fault for bad typing and jumping to incorrectconclusions. I hope you will accept my apologies.

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Re NDT. Despite Dr Lowe requesting a response to his Rebuttal to the BTA and RCoP. Not one responded despite three yearly reminders to them before his death.

thyroidscience.com/Criticis...

Would you not think with so many people recovering on NDT that they would still allow it to be prescribed. It had been in use since 1892, the original thyroid hormone repalcement.

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I have been diagnosed with fibromyalgia and have been in eternal battle with GP over my thyroid. Posted my results on here a while back. In the U.K. They refuse to see the connection. I have very high antibodies and my T4 was at the bottom of the scale and yet they tell me it's not my thyroid. Now my bloods show low hemoglobin levels wth normal iron stores, very low folic acid and an inflammatory response. Due to have these retested in few weeks. So guess we cannot win as once diagnosed with fibromyalgia it seems impossible to have it removed.

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I find the "fibro" interesting, I was told by one doctor who only asked my symptoms, came back in the room 5 minutes later with a 10 page handout of fibro information, and told me to find a support group. I've had 3 other doctors tell me that fibromyalgia is just a word used when they cannot find a cause for symptoms. Is there a test that I don't know about? I have neuropathy (my neurologist believes from low B12) 200,( range 200-800) I've had EVERY test for PA and everything is NORMAL. So my neurologist has me getting B12 injections now every 1-3 months depending on how I feel.

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There is no specific test for fibromyalgia that I know off.. an endo diagnosed me using pressure points and symptoms. I had scans to ensure was no inflammatory reaction in my joints. It's a recognised condition but many GP fail to be adequately informed. research has clearly highlighted how hypo thyroid and fibromyalgia seem to be very closely related if not one in the same.

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I think it is important to rule out LOW T3 - LOW VitD - LOW B12 - ADRENALS and then discuss with folk that know - maybe here 😊😊

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Wow! I have all hypothyroid symptoms but ALL bloodwork is normal. Including antibioties. I've just had my second ultrasound of thyroid & am seeing a throat doc tomorrow for a consultation as I now have micro calcifications which I didn't have last year on a nodule. The radiologist is recommending a FNA.

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Gosh how did you get them to do anything if all your bloodwork was normal?

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Because my doc does truly believe something is "off" also. I've lost 25lbs. Which was needed & somehow gained it back in the matter of 7 months & I have no idea why. Another radiologist just read my latest thyroid US & is saying it's normal! So now I have 2 totally different opinions on this mess. I'll know next week if the hospital will do a FNA although I know they're highly inaccurate or if I need to have another US at a different hospital. My faith in the radiologist is now gone.....Back to knowing nothing.

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Dont you just love that 'something is off' comment - that is what they keep telling me but insist it is not the thyroid as all results are within range (albeit at the bottom in some cases). I hope you get the treatment you need. Its beyond frustrating that even the medics cannot agree.

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Please post all of your results, with the ranges. Ranges are important.

Blood tests have to be at the very earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. Also check B12, Vit D, iron, ferritin and folate too. Everything has to be optimum.

Some people's TSH doesn't rise high enough. Of course in the UK they have deemed a TSH has to be reached whereas in other countries worldwide, it has to reach 3+.

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

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Morning all...I'm still here, and reflecting!

I've come to the conclusion that FM lies in a minefield and nobody - researchers or lay people- has/have much to offer in the way of positive/wholly verifiable proof as to either the cause of, or the appropriate treatment for the illness.

If it was as straight forward as saying ....ok, it's untreated hypo...then we would be much closer to a solution. I totally understand that, in a desperate attempt to find answers, the idea that poorly diagnosed hypo is seen as the cause of FM - It would neatly solve the conundrum, but It doesn't. It looks as if thyroid testing also sits in a minefield but that is another debate! And, for those who query it - "Yes", I have no doubt that there are people who have been misdiagnosed - this is not specific to the FM v hypo debate - but it does not mean they are one and the same thing

Having said that I also feel that the answer is much more complex than the layman can grasp and may lie deep within our genetic structure, perhaps with some element of chromosome deletion. I'm not in a position to 'spout' on this but, research in this field is being undertaken which hopefully may throw some light on things.

However, time and money are of the essence here and the latter is undoubtedly limited so this debate is not going to go away any time soon. We all agree on that one! It will continue to generate many strong opinions but those are just that - opinions do not provide strong scientific evidence, or answers, however well meaning.

Regarding my earlier blunder when I confused the location of my posts, that was wrong and I stand corrected. However, I still defend my original point and much of what I said.

For those now wondering, what I actually raised, and have been trying to hammer home, it is the need for an improvement in public perception of the condition...not issues regarding lack of research, a point which seems to have since highjacked this debate. There needs to an understanding amongst the public, employers et al that sufferers have a genuine problem which needs to be accepted as something other than laziness, hypochondria etc. It happens! Whatever the cause/s we need to deal with the result! This is perhaps one of the biggest and immediate problems for people trying bravely to cope with what is a long term invisible and debilitating condition. We look well so we must be well.....Rubbish, we need empathy and a cure!

Returning to poor Lady Gaga, she may well have raised the profile of FM but I fear that in doing so people will look at her and think she looks well and seems to cope/or has been coping with a hectic lifestyle,completely forgetting her extensive support system. Result...so FM can't be so bad! They will not see behing the mask that most of us hide behind in order to get through each day. Perhaps we all need to bare our faces - and our souls - and shout, "this is what it really looks like"

On that note I wish you all the best day possible ... let's all try and get some understanding established out there!

DD

.

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I was diagnosed with Fibro in the UK by a Consultant Rhumatologist privately after a GP thought it was PMR and wanted me on steroids - back in 2000. I resisted of course until I knew more. I went to India for Ayurvedic treatment in 2001 with a small inheritance from my lovely undiagnosed Mum and my improvement surprised the consultant ! On retiring and moving to Crete in 2004 I was diagnosed with Hashimotos in 2005 and thyroid treatment commenced. At last I was not sleeping between meals - walking through the house at night in pain and not crying through yoga classes at the back of the room :-)

I will be 71 on Monday - and I started teaching yoga at 65 ! I swim loads in the Summer and walk my dog as well as running a business. Of course I welcome a regular massage to iron out the creases and gobble up loads of supplements as well as a T4/T3 treatment. You can click onto my name above and read my Profile in a couple of minutes - it has been quite a journey :-)

Dr Barry Durrant-Peatfield wrote an excellent book - Your Thyroid and How to Keep it Healthy. Chapter 13 covers Chronic Fatigue and the Thyroid Factor - wherein he mentions that ME/CFS is the UK description and in the US it is Fibromyalgia. We have become Americanised :-)

If you have not read the book I really do suggest doing so. Whilst Thyroid testing remains inadequate and the understanding of the results more so - the jig-saw puzzle will never be completed or understood and the dot-dot remains unfinished.

An open mind has lead me to better health :-)

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Pleased you are feeling well Marz, and have had the opportunities to explore various treatments and overturn your misdiagnosis. Keep up the good work! Sounds great...warm climes are so beneficial.

I agree that an open mind is important and think most of us here use that approach in order to become better informed and to find strategies that work for our own individual problems. The alternative is to sit in a corner and suffer...to quote my paternal grandmother, "I would rather wear out than rust out!".

Best...

DD

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I wonder what would have happened had I stayed in the UK ??

When the GP here looked at my health journey from the UK she immediately suggested thyroid testing - the full works - TSH - FT4 - FT3 & thyroid anti-bodies TPO & Tg. A scan was organised for the same day. All the test results were in range apart from the anti -bodies which were HIGH. The scan revealed nodes and so auto -immune thyroiditis - Hashimotos was diagnosed. On visiting other fora I am horrified when people are so ill - on numerous toxic meds - and think they are fine thyroid wise when GP has only tested the TSH and declared their thyroid fine. Sadly it is all too common .....

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Well done Marz for the work you have put in to understand your conditions.

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Have to say I still do have painful muscles - when I track them from joint to joint - the pain is mostly nearer the joint. My joints are fine as I am very flexible doing yoga. When I track the muscles from shoulder to elbow or thigh to knee there are many tender/sore bits. I work on them and consider them to be trigger points and relief can be achieved by holding on tight with a finger or thumb. I keep doing it until going back in and the pain is less :-)

Having inflammation elsewhere in the body is my theory that causes muscle aches and pains. Gut inflammation being the most common and who doesn't have some sort of gut disorder. My Crohns is under control but occasionally I eat something that can cause a flare and then muscles are more tender. I think all Fibro folk should try being Gluten Free for at least a year. Gluten causes gut inflammation - and into the brain too !

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Again Marz, you clever lady I agree with you. The inside of my elbow hurt last night as though I had been bruised but nothing to see, I will try pressing it if I can bear it! Have been making lots of organic chicken stock lately and kefir to help the gut, so important. Nice to hear from you and take good care. Joyia

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I am no expert but read an article on recent discovery of how genes can be altered by trauma and these altered genes then passed on to the next generation makes sense. My family history has repeated trauma patterns as have many families, hence our current health conditions. There is research going on about the importance of therapy given to children which in turn can literally alter genes making them healthier which are then passed on to the next generation. This mind bending research is still in it's infancy, not in time for us but hope for the future. The reason for this research coming to the fore is the amount of children these days with mental health issues, although personally I do not think this is something new, it was just brushed under the carpet before.

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I think vaccinations have a huge role to play too - again a difficult topic to discuss - but do take a look at the - World Mercury Project - with Robert Kennedy - trying to improve the health of our children. I do think my issues started after the BCG back in the 50's - and then having Gut TB in 1973 - you really could not make it up !

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Oh yes Marz I forgot about the BCG vaccine which I had too, you are spot on to be concerned.

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Apparently LG takes Synthroid for hypothyroidism!!! One of the ITT members watched a new documentary about her...So she IS hypo ...and needing T3 after all!!!

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Perhaps should should switch to Tirosint? :-)

( Referring to my comments on this thread: healthunlocked.com/thyroidu... )

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or cytomel. She would be better off on any form of T3 and she can certainly afford it. I do hope she will find a sensible endo who will suggest T3 to her...

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Gaga: Five Foot Two review – pint-sized music doc wallows in self reflection

2 / 5 stars

Despite artful direction and meticulous curation by Gaga herself, the documentary never quite shakes the feel of a longform advert for the singer’s new phase – one that’s preaching to the converted

theguardian.com/music/2017/...

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Kitten1978 That is interesting. T3 would be well worth a try for LG to see if it has any effect on the fibro symptoms she has. Perhaps T3 resolves both conditions - it would be good to know if it does help Fibromyalgia at least in her case, it can't be a known treatment for it as yet. I hope the NHS gets a better deal on it. I fear if they ditch it it will never be part of anyone's treatment protocol unless they go private.

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Check out shaws - she has great archvved information about Dr John Lowe and his work with fibromyalgia patients and T3. Thyroid Hormone Resistance is worth reading up on too :-)

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