Mrs karen beaton

[Karenbeaton]

Hi my name is karen I have Fibromyalga ME thyroid problems IBS

[popsmith1874]

Sorry for your troubles , I have ra oa and IBS as well and it can be very annoying sometimes

[Bananas5]

There are specific forums for your conditions. It would probably be more useful for you to ask for their help.

They wukk have far more exoerience of each condition than we have here.

Good Luck and sure you will get the support you need

x

[katieoxo60]

Hello Karen, welcome to the many forums available on here. There is a specific forum for Fibromyalga where you might get better help & support. All your other health issues are covered on specific forums. Pain Concern is mainly for pain support of those with chronic ongoing pain. I myself have Arthritis, do not want to frighten you away but hope this helps you choose the best site for yourself. Best Wishes

[ukmsmi4 in reply to katieoxo60]

Hi Katie

Whilst I agree Karen will probably find a greater degree of relevant support on the fibromyalgia forum, please remember that fibro is characterised by chronic pain of many types.

I have ME, fibromyalgia and arthritis and for me the ME and fibromyalgia pains are harder to deal with than the arthritis ones.

Like many other fellow sufferers I am on several sites because ME and fibro have a multitude of sypmtoms and co-morbidities including arthritis, IBS and many different types of chronic pain. Personally I find it useful to be on several different forums as I can often pick up useful information on many sites. But yes I agree the ones I find most useful are the specifically ME and fibromyalgia related ones.

Margaret.

[JoyW]

Hi Karen, I also have Fibromyalgia. Please feel free to send me a message if you would like. Regards, Joy

[ukmsmi4]

Hi reallyfedup

I think you will find that theory, like many others about the very real conditions of ME and fibromyalgia is as yet unproved.

ME was classified by the World Health Organisation in 1969 as a neurological condition. It's full name is myalgic encepholomyalitis. The term Myalgic Encephalomyelitis means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. Dr Byron Hyde wrote in 2006

"The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record".

To this date their are many arguments about the exact causes of ME but ironically the one thing the vast majority of scientists agree on is that it is multi-systemic. It involves all the bodies systems including the nervous system, the lymbic system and the endochrine system.

Yes it is thought by some that thyroid plays a part in the condition. But no one has yet proved at which part in the bodies system the condition starts. This is very difficult to do as the body systems are cyclic.

There are many symptoms and co-morbidities involved in the condition and there are many conditions that are believed to be in the same family or related in some way. Fibromyalgia is one that is believed to be a sister condition as there are many overlaps, but also crucial differences between the two.

I won't go into a full discussion here as it would take FAR too long as the condition(s) are so complicated. And therein lies my point. Yes the thyroid is believed to play a part in the condition, yes for SOME it seems it may be the starting point or addressing that issue may bring some benefits. But the issue is FAR more complicated than simply saying the thyroid is the sole cause.

And lastly please don't refer to chronic debilitating illnesses that rob people of a normal life as "so-called". Clearly you do not have the condition(s), clearly you know nothing about it and as such have no right to pontificate in such an insulting way.

[KLR22]

Hi Karen,

I have M.E., Hashimoto's and had IBS badly but this is a little better now that I follow a largely gluten-free diet (still lapse occasionally!). Feel free to message me if you wish.

Take care.

Karen

[Fibrofoggiest]

Hi reallyfedup,

I'm afraid what makes me really fed up is when someone has the audacity to state that "thyroid problems are the sole cause of fibromyalgia" !! I would be most interested to see your clinical evidence for this wild assumption and back up every single word that ukmsmi4 has said - clearly far more correctly informed than you. I have had fibro for over 30 years and have had many thyroid investigations, NONE of which have shown up any problem with my thyroid function and yes, I have had all the correct tests done.

Foggy

[ukmsmi4]

Yes that may well be so. Yes it may well be that some people diagnosed with ME, CFS or Fibromyalgia have been misdagnosed. I'm glad your husband was lucky enough to get a correct diagnosis for him. Many of us are not lucky enough to get the full range of possible tests for possible issues. Though many of us have already had to have a sizeable range of tests over many months or even years before we can even get a diagnosis. I myself have already had thyroiditis ruled out as well as various cancers, rheumatic fever, anaemia and too many other conditions to list.

That it no way means that any of these conditions do not exist or that the patients deserve derogatroy comments like "so-called" ME. I for one have PEM which is a symptom that is not believed to occur in any other condition so until scientists and/or doctors come up with definitive irrefutable proof that I have something else, ME is the best and to date ONLY fit.

[RAYJAYC]

reallyfedup123

I'm confused by your post - first you 'question' if ME exists yet listened to the "famous ME specialist Betty Dowsett" when she said your husband didn't have it?

Surely, if you recognise that she was a specialist in ME, you recognise it exists?

Which ever tone you were using in your post and whatever knowledge or experience you have, to call something "so called" is very derogatory and dismissive.

Maybe think a little before posting such a huge statement.

RAYJAYC

[humanbean]

Hi karen,

Hi my name is karen I have Fibromyalga ME thyroid problems IBS

I'm assuming you have chronic pain with that list of problems. It is worth joining other forums for each of your problems, as well as this one. You never know where or when you might pick up some information that helps you.

Fibromyalgia : healthunlocked.com/fibromya...

ME : healthunlocked.com/meandcfs...

Thyroid : healthunlocked.com/thyroiduk

IBS : healthunlocked.com/theibsne...

There are multiple communities for some health problems. Where I found more than one I have linked the biggest one I could find. Each one has to be joined individually. People can join as many communities on this site as they want.

Good luck, and I hope you get as much out of using HealthUnlocked as I have.

[ukmsmi4]

Agreed many patients are not given the opportunity for the full barrage of possible tests and as a result some could be misdiagnosed. Agreed we don't get the investigations or treatment we deserve.

Still doesn't mean that all such conditions are really thyroid related. People can be seriously ill to the point of being bedridden with ME yet still thyroid tests show up as negative. The idea that all cases are due to thyroid problems just doesn't make sense. Especially as it is categorised as a neurological condition.

And if you are aware true ME exists why did you refer to it as "so-called". You must have known that was a very derogatory, dismissive and controversial thing to say.

[ukmsmi4]

Dan, can you explain what you mean by some silly comments. And why it is you think you know the answer to fibromyalgia. Are you qualified, do you have it. Just because scientists and/or doctors are copping out of providing an irrefutable diagnosis doesn't mean the patient does not have a serious condition.

You do realise this is just the sort of thing they said about MS before it was proven. We can't see it therefore it doesn't exist or it is all in the mind. Which by the way is one of the many conditions that is thought by some of the researchers to be linked to ME. One school of thought says it could be a mild form of MS.

[ukmsmi4]

Hi Karen

Welcome to Health Unlocked.

Despite the fact that like all fibromyalgia and ME sufferers you will no doubt suffer from chronic pain of many different types, it is true that you will probably get more relevant information and support from the other forums that are specifically ME or fibromyalgia related or ones that relate specifically to particular co-morbidities.

There are all the forums that Humanbean has kindly provided links for and there is also

EDMESH

Ramsays Disease

which are both specifically ME related, and there is also

Foggy's Invisible Illness Support.

I find all these to be helpful and supportive for people with our sorts of conditions.

I wish you well and hope you get some support from them.

Margaret

[ukmsmi4]

Oh I see Dan. Sorry I think I got the wrong end of the stick there.

You're right, the scientific answer isn't out there yet and we do need to push for more research.

There are too many people with these conditions to just ignore us the way we are being ignored. Most of us are 100% open to the possibility that we may be part of the bucket diagnosis victims who actually have something else, but sadly until the medical profession gets kicked up the backside we are never going to know and are left in a limbo that is like a living hell.

But I also know ME is certainly a very real condition as has been proved by the autopsies that have been done on those that have died from it. And as fibro is already believed to be related as there is so much overlap. Perhaps it's only those of us who suffer the vast majority of the very long list of symptoms that truly have the conditions. Maybe they are a family of differing severities of largely the same cause. But who knows - yet?