Sticky Blood-Hughes Syndrome Support
8,089 members8,327 posts

Fibromyalgia is it a real condition or just a "label' to suggest we have mental health issues?

I feel so angry/upset/frustrated by differing medical & non medical opinions of the condition fibromyalgia. I would love to have a poll to see how many of us got this diagnosis as well as APS & lupus.

For me it was my worst nightmare & personal battle to overcome when a. Registrar said I had it. I still struggle to understand why scientist doctors are so divided in their opinions as to whether it is autoimmune and linked to APS / Lupus or just a condition quoting from a book " confessions of a GP"I am reading currently & hence trigger this question because he mentions it in one of his chapters as a condition gp's collectively say stands for SLS "shit life syndrome"

Sorry for my apparent fixation with this condition & previously I have asked a question about it but I feel so strongly if we are gonna be treated by other medical people please don't give us a label to worsen our chances of being taken seriously :-) :-) :-) my sound off for today & appreciate your thoughts & comments Kathy xx

14 Replies

Yes, I can feel your frustration! From working with hospital medical people, my understanding is that fibromyalgia is a catch-all term for patients who clearly have something wrong with them but, as yet, it is not diagnosed or perhaps they are not able to diagnose anything concrete yet.

I don't believe there is any cross-over with APS or lupus as they are clearly identifable by blood tests.

It does seem that some medical people will treat the term 'fibromyalgia' as SLS, but this is unfortunately because it is a catch-all term where everyone gets placed if they're not diagnosed. There are obviously genuine cases but some GPs will clump in the hypochondriac 'SLS' people too.

No wonder you're frustratated! I personally believe that there are conditions which have yet to be discovered and that some cases of fibromyalgia will prove to be these. However, it still means you've got an uphill struggle - good luck ...


Hi Kathy

my dx of fibro was given by local hospital rheumy who then discharged me, she did however refer me to haematology as she had initially dx me with Aps, then asked me at next appointment 'who dx you with Aps'? My answer you did!!!

No faith in that rheumy (she also did a schirmers test for sjorgens syndrome after being so horrid i was in tears when she put the paper in my eyes, er obviously my eyes not dry when crying!!) pretty sure sjorgens will be added to my list of autoimmune conditions.

The haematologist admitted she hadn't got a clue so referred me to st Thomas's, thank goodness!!! St Thomas dx with Aps with lupus overlap, fibro, etc.

However i do believe fibro is part of my conditions, it certainly does exist, just think lots of people with fibro have something else too. Fibro is an awful debilitating condition without all the rest....

Yes an awful lot of Aps/lupus/fibro/autoimmune sufferers have some degree of depression!! Is it any wonder?!?!?!

Sometimes i so wish it was all in my mind, then i could make it go away!!!!!! :-( :-( :-(

Totally understand your frustration!!! Hang in their hon!!!

Take care gentle hugs love sheena xxxxxx :-) :-) :-)


Hi Kathy

Do you have an underactive thyroid as fibromyalgia is one of the main symptoms? In fact an American thyroid doctor called Dr John Lowe spent his life researching fibromyaliga and found it was due to peripheral resistance to thyroid hormone. This can mean that your blood tests are normal, even high, but your body is not utilising the thyroid hormone properly (which is why it's still floating around in the blood) and the doctors will tell you there is nothing wrong (how many times do we hear that for our symptoms!). Dr Lowe was at the cutting edge and tragically died not long ago. I think his wife Tammy is keeping his website up and running with all the information on it. I have borderline aCL and an underactive thyroid and I always know when my thyroid is going underactive because I start to get fibromyalgia.

I have been through hell with my thyroid problem and doctors still don't have a clue about how to treat it properly even though they say they do!


Very interesting KJay - thanks for sharing that, it's really helpful :)


Hello :-] I worked as a nurse for many years . I can no longer work due to medical conditions one of which is Fibromyalgia. My rheumatologist diagnosed it after testing muscles and trigger points on my body for pain responses as well as other indicators. It is a real condition and can be very debilitating. Along with other conditions I also have Hughes. There are many books written by medical and non medical persons on Fibromyalgia and also support groups run by local health authorites. It has been proven that there are cross overs with Fibromyalgia and Chronic Fatigue Syndrome and my local hospital ran a weekly group for people with this condition. It was on educating you how to live and manage the conditions which was really helpful and informative. Sadly after many years they lost their funding for the group and Professor Findlay who ran the unit retired. As with Hughes, fibromyalgia symptoms can vary from day to day which I know makes it hard for people who do not have either of these conditions to understand how it affects you. Keep strong Kathy.


Hi guys thank you for all your comments. :-) wow kjay I will follow that up I have antithyroid antibodies my thyriod gland was said to be borderline but upper range.

Interesting that my dx of fibro was made tho without the full picture when I was referred post flu in march 2011 flu was 3/12 earlier but my symptoms involved aches pains temperatures & such severe fatigue I had palpatations sinus tachy with attempts to climb stairs. Low back pain lasting 6 weeks but inr during these months was 1.4. - 1.9 as had severe uti 2 courses of abx.

Bloods taken in march results of which the consultant rheumatologist I saw 6/12 later didn't have to hand when he reviewed me but he concluded same dx due to longitivity of symptoms - fatigue on going kidney issues weight gain retention of fliuds swollen ankles to name a few but the major blood result of my ACL was put in a letter after that consult by which time I was in hospital my inr due to poor management was 1.8 this time I had neurological symptoms antibodies 83g 24m think that's right way round :-) needless to say my body was in a flair of APS!!

To date I have had multiple TIA's require aspirin as well as warfarin now in > 3.5 & 3 hosp admissions! Halleliuh to Fab doc I saw in the Aug who said my symptoms in march onward were further clotting episodes in the venous sinuses in the brain ( major multiple clots previously when dx in 1990 with hughes)

My question to them when I see them in May is pls pls let me trial planquenil (will take latest HSF newsletter) pls agree to me testing my own INR's rheumy against neurology for - again newsletter results thxs for that Kate & my last question will be please review if fibro still correct given the more serious battle I'm having to stop me having a stroke!!!

PS perimenopausal now the fluctuating estrogen levels are playing havoc once again with stability of my INR's been 7.7 8.5 hence was told to stop warfarin for 2 days since Feb now added to list is ECG changes as inr r fell & my antibodies went to town on my vascular system :-) :-) naughty demons! Xxx PS dx of fibro meant I suffered for ages till I developed arm weakness then full picture of events were taken seriously plus thank goodness new GP day before second tia as old one refused to see me despite symptoms!! Wish I had the fight in me to sue them hence my fixation on medical opinion to fibro diagnosis Kathy xxx :-) :-) :-) still here tho strong because of all you guys so a massive thank you to all xxxx:-) :-) :-) :-)


meant to say old / previous gp reluctant to see me but did when I asked her to she then referred me to tia clinic but was admitted before date to be seen. Thought best to add that when I reread as made gp sound worse than they were :-) kx


Hi Lindy Lou have you had a positive experience always with fibromyalgia? Because that is very encouraging to know and perhaps my experience was sadly due to my old GP's views which I like to add I did write to practice manager when I left suggesting the surgery could benefit from learning more about hughes & fibro :-) did receive a nice letter back saying my case was being looked into a thanked me for my structured critism & writing about my experience. At the end of the day that's all I want is better medical understanding as we all so strongly write about & sadly is the most common reoccurring theme!! Suzypal certainly helping us in that dept :-) :-)

Off to gym now for my workout with per trainer despite feeling yuck its a great motivator paying as i would not go otherwise when feeling ruff :-) :-)


Hello Kathy

When I was first diagnosed with fibromyalgia my GP was quite dismissive and when I was dx with rhematoid arthritis too she commented that at least now I had a "real condtion" . Thankfully my rheumatologist and also the staff at my local hospital were wonderful. The consultant told me that "yes it was a real condition and no it wasn't all in my head". I broke down in tears at that point as I had felt no one believed or understood me. Since then [ few years ago now] I have noticed that medical staff are reading more research on the condition and becoming better informed which is reflected in the way people who have the condition are treated. A positive support group is good if you can find one Kathy as you all help to keep each other strong. I hope you get the help that you need. I am here if you need to sound off anytime :-]

Take care of yourself



Still here gym in a bit :-) :-) thanks lindylou very much kxx


Hi, there, after years of reading. I believe that the thyroid plays a major role in autoimmune conditions, and this includes fibro and CFS. I believe the thyroid is to blame in these conditions, and this is my own personal opinion. Thyroid UK on this platform is very informative. Mary F


Hi Mary yes i totally agree and have just written an email including the link i have blog to the nurse specialist before my nxt rheumy app on 15th may. When there under pressure with time restraints i dont always say what i want to. with months between appointsment i now take ownership of that app send info i want them to discuss which includes my suggestions eg test own inr, trial planquenil and also wrote about fibro and my poor experience due to the SLS - should be SGP!! ;-) i think you get to a certain age and need to take control after all its our lives and im sure they respect that. Kx


Hi Kathy

I wish I had read this thread a few days ago so that I could have reassured you before. First of all Fibro IS a real condition and is included in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992. Therefore I am afraid to describe it as a "catch-all term" would be in correct.

Unfortunately it is often misdiagnosed either through ignorance or coexisting conditions. Myofacsial Pain for instance is not the same as Fibromyalgia but is often confused for it but is easily treatable.

I have Fibro, Hashimotos, Sjogrens, Hughes and Cardiac Syndrome X. Prof Hughes who diagnosed me with APS and Sjogrens after my Stroke last year told me that all of these are linked with Fibro and also with Celiac Disease. Just last week when I was visiting my Stroke Consultant I told him that I had recently had a Celiac Biopsy which was negative but probably so as I had embarked on a Gluten free diet. He informed me that it was still possible to have CD and have a negative gluten biopsy of the gut because there are different types of CD and he felt it was possible I may have a neurological type which would link in with my other symptoms and possibly my stroke. I am now waiting for results to see if can add that to my ever growing list!!

Recently there has been some new studies that have shown that people with Fibro have reduced blood flow in their brain which is directly corresponding with their pain. This is the first time that researchers have been able to show this link and shows without doubt that this is a real condition. They are now going to build on these studies on the brain to find out why this is happening.

If you want support specifically for your Fibro there is a community like this one under this HealthUnlocked platform which I run. You will be able to find evidence based information about Fibro and support from other people if you so wish over there. I am also a member of HSF and this Forum so that I can get support for my Hughes here which has been a godsend for me personally.

I hope that has proved helpful to you. I know it can be very difficult sometimes with the conflicting information out there but it is getting better and we as a Charity are doing our best to educate everyone including the medical fraternity. If you have specific questions you want answering about your Fibro please dont hesitate to contact me.

Lynn :-)


Thank you so much Lynn & sorry to hear of your own battle with so many autoimmune conditions. As suggested I looked at Dr Lowes work & found a good article looking at chronic fatigue syndrome, fibromalgia & HAIT. It was interesting to read about the TSH levels to determine if for eg my TSH 5.6 is either borderline or actually high. If using alternative range 0.5-3.0 would imply I had hypothyroid issues which does tie in more with my symptoms.

I too have hughes but my battle with fatigue muscle aches joint discomfort became severe after flu. I kept getting low grade fevers when attempting to return to work which led to increased aches.

Fatigue has been with me since my dx of hughes in 1990 & subsequent clots on the brain but I managed it until the flu in 2011 when got dx with fibromyalgia. I will look at the fibro site thank you again Kathy dx :-)


You may also like...