Is Fibro Real ?

Like many others with the various autoimmune diseases including Hughes; I was diagnosed with Fibromyalgia many years ago.

As autoimmune diseases are Syndromes; do u think that all the symptoms can be attributed to them and not a separate disease - Fibro?

It seems that everyone u meet has Fibromyalgia now and it makes me wonder if it's an actual condition or if the symptoms are part of the autoimmune diseases.

I don't mean to offend anyone but I just don't understand how suddenly everyone has it. It makes me feel if everyone has it it's insignificant ?

To be honest I don't even know what it really is!!! (If anyone can explain it to me that would be great!) 💋

18 Replies

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  • You have hit the nail on the head, with is it a collection of symptoms? My own experience with this, is that I have with myself and other friends tested extensively for Thyroid problems when faced with this, and I do not mean, just the GP, saying your Thyroid is fine, we have done the tests! The reason I say this is usually only the TSH is done. When I tested and also several friends over the years plus people I have met with similar symptoms, when we have paid out and tested with tests like these: We have all shown up a significant Thyroid problem. Alongside other deficiencies.

    TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

    Note the B12, D and Iron also included here. Normally something in the Thyroid shows up, also perhaps low B12 and D and or Iron also.

    I also list the symptoms of underactive thyroid:

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

    Do I believe in Fibro as a diagnosis in it's own right, no I do not! I believe it is a set of unexplored symptoms, and if enough is looked into, results can be gained. I don't want to upset anybody either but, I had a very close friend, who had this, including endless urine infections, endless pains in the joints, endless sinus problems, chest infections etc. After testing as above, they were found to be low in Vitamin D, B12 and Iron, plus very very low Thyroid function and Thyroid antibodies, since treating significantly better.

    However some people insist that the doctor or consultant has thoroughly tested their Thyroid, which as the labs are not set up for the testing is not true. Some pass the narrow tests but a huge number of people slip through the net.

    Mary

  • Well said!

    Kerstin

  • Thank you. MaryFx

  • That's what I think. How can the doctors make a diagnosis by pushing on various points on ur back to see if they are tender?

    Then telling u u have Fibromyalgia and there is no treatment!

    I too think that if more extensive investigations were carried out; an actual condition could be identified and treated.

    I know people feel better with a diagnosis - a label - but we need the right one!!!

    I'm wondering how many people with an autoimmune condition has been diagnosed with Fibromyalgia - anyone here? Lol

  • Lots have on here, and those that wish to read deeply and realise the limitation of some medical advice, save up and do extensive private testing, this is what I did, I had been told over and over again, no problem with your Thyroid, not blaming the GP, they are bound by very limited testing, even though I had so many of the symptoms, it showed up with bells on each time I tested it more extensively. MaryF

  • Just out of interest Mary are you 'believed' and treated properly for you thyroid problem now after the private tests? It does your GP stick with the negative NHS tests?

  • I am monitored on thyroid meds by myself and private testing which I then copy to them, but they do still test me at the hospital from time to time.. Gluten free, I made that decision myself after a couple of tests I did myself, ie did my gut and excessive allergy/sneezing abate, and yes it did! MaryF

  • Yes I have

  • Fibro is a "catchall" diagnosis for a collection of fairly vaguely specified symptoms, there is no cause established, it is not known if it is one condition or many. It is not a very useful (for the patient) diagnosis since it leads to no treatment or prognosis. It is _supposed_ to be a diagnosis of last resort, i.e. where all other possible differentials (ie. other causes of same symptoms) have been eliminated.

    Putting my cynical hat on, I would say that in practice it gets used when doctors can't be bothered to look any further into other possible differentials. If it is getting diagnosed more often that could be due to a few things, e.g. medical fashion, increased knowledge of and convenience (for the doctor), or more people having the actual disease (whatever it is).

  • Well I have a different view and Im going to defend it because I used to be involved with people with Fibro and I ran a support group for many years. Im going to explain it the best way I can and in a way that it was explained by a very eminent Doctor and Fibro researcher from the USA who I knew well, Dr Andrew Holman MD and who I helped put on medical conferences for here in the UK.

    Fibro is a central sensitivity syndrome. Its when the central nervous system becomes "wound up" and causes everything, mainly pain to be experienced as chronic pain, sleep to be disrupted, reactions tend to become more severe and fatigue is overwhelming. Imagine a spinning top, you need to keep spinning it. If you can think of the spinning top as Fibro, then all the things that need to keep it spinning is the disrupted sleep, chronic pain etc. In other words the system is wound up. In order to treat the condition you have to slow the top down by pulling out the things that are feeding it one by one.

    Put aside that patients may well have a thyroid problem, or undiagnosed other autoimmune conditions like Sjogrens, Patients can and do have primary "Fibromyalgia". Unfortunately what has given this disease a bad name is the fact that once they did away with the old diagnostic criteria (11 out of 18 tender points), which were difficult for most Doctors anyway, now its just a pain score and that leaves the door open for misdiagnosis which was the fear when the new criteria was brought in. Dr's that don't understand it or abuse it or simply don't have the time or funding to be thorough, don't do proper testing to rule out other conditions and this is where the problem lies. It has led to the condition getting a really bad name and becoming a bucket all. It also discriminates some patients because of quite old views that people who had the condition had mental problems. Thankfully those views are starting to die out but a lot of patients were badly stigmatised because of the ignorance surrounding this condition......does this all sound familiar?

    So, Fibro does exist, but patients should be properly tested for coexisting conditions or they will never get better, will be prescribed useless drugs which will only make them worse and conditions they do have which are perfectly treatable, will be missed and crucially and most importantly, patients must be properly diagnosed in the first place. Additionally, science is now catching up and research, just like in Hughes is developing all the time so that understanding about the condition is becoming more clear.

    I hope that helps answer your question WendyWoo50 like Hughes there are specialist Doctors who understand the condition BUT as Prof Hughes says about his disease, if there are other things going on that are not diagnosed or you are not on the right medication (like a diabetic being given half his insulin), you are never going to get better.

  • I knew you would say that! MaryFx

  • Glad I didn't disappoint then!!

  • Ha Ha. MaryF

  • Thank you for taking the time to explain It to me (us)

    I totally understand what ur saying and agree that many doctors are giving out the Fibro label without proper investigation and that's why it seems that 'everyone has it nowadays' which then seems to make the conditions insignificant I've heard people say things like "Oh u have got that Fibromyalgia as well have u?"

    I agree it can exist on It's own but I do wonder if those who also have other conditions that cause the same symptoms as Fibro are given the Fibro diagnosis when they actually don't have it. If u get what I mean? 💋

  • I do get what you mean, and in those cases it's quite common to find that the real culprit is actually Thyroid or Sjogrens as all three of these conditions have overlapping symptoms. In my case I was diagnosed by no less than four different specialists with Fibro. That was not because I didn't have it in some degree because my system was being wound up by what was going on with the symptoms from my undiagnosed conditions. That was a costly mistake as they were not investigated at all and caused a stroke with perminant damage. That was down to ignorance and laziness as no one actually looked at my medical history and then joined up the dots! I suspect there are many patients given a Fibro dX who also have perfectly treatable coexisting conditions, if they were treated properly the patients Fibro would be significantly more controllable and manageable.

  • I have a fibro diagnosis,but believe that I have undiagnosed thyroid issues

  • I was diagnosed with APS ten years before fibro diagnosis. The symptoms came on remarkable quickly and within less than six months I went from being a keen walker to being eligible for a blue badge. My joint pain was a lot better after being diagnosed as being vitamin d deficient but the fatigue continues and some pain and stiffness in my legs along with weak balance from my stroke in1998. I have had numerous tests and blood tests and a specialist rheumatologist told me it was fibromyalgia and there is no reason to discount it. I just count myself lucky that I don't suffer as badly as many other do.

  • Thank u for all the comments. It seems it is as I thought. It does exist but sometimes doctors do label us too quickly. I think this give real suffered a bad reputation. Have a good weekend everyone 💋

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