Sticky Blood-Hughes Syndrome Support

may have fibromyalgia

Don't know what to think any more! Since Hughes diagnosis ten years ago I have also been told by St Thomas' that I don't have lupus but have some of the symptoms and also symptoms of Sjogrens. Over the last few weeks I have been having increasing pain in my back, neck, thighs and lower legs. which are tender to the touch, and am stiff in the mornings/evenings/when I sit too long My fatigue is worse than usual as well and the brain fog.

Thought it was the polymyalgia that my mother and sister have and though didn't want it know steroids can make a massive difference But my GP has said no to this from the blood results but said I tick a lot of boxes with symptoms of fibromyalgia - so came home and looked it up, which probably wasn't a good idea!!! Strangely enough one thing I did notice was some people have frequent changes of prescriptions for their glasses and that is me - the opticians have never been able to give me an explanation for why I am lucky to get two years out of a pair, or why it can change so suddenly.

Have a private appointment with a local rheumatologist on Friday to see what he comes up with. I really, really, really don't want anything else.


8 Replies

Hi Caroline

I too have Hughes, Sjogrens, hashimotos, Fibromyalgia and SyndromeX. I was told that all of these go hand in hand and the symptoms cross over. Cealiac disease is also linked in too.

I was also told that once the Plaquinil kicks in it will be interesting to see how much of my symptoms will be helped from the Fibro side - in other words he was wondering if the Fibro dx was perhaps more down to Sjogrens. It will be interesting to see.

Fibro at the end of the day is a result of an over excited autonomic system which results in the centralised sensativity syndrome. many of these conditions are also present in the other autoimmune conditions.

So dont be too worried about being labelled with another condition, its probably just a bit of a flare of what you have already got!!


Dear Caroline,

I so can relate to your blog hun.. i too was diagnosed in march with fibro after having hughes since 1990. They have since confirmed that flu at xmas flared up the hughes as my antibodies were significantly raised and this exascerbated (cant spell ;0) symptoms of fibro!!!

I came from the rheumatologist appointment in shock really as i went looking for answer about my hughes as not seen anyone in many years but had noted increased fatigue brain fog etc when my inr were low and was convinced fatigue had always been a symptom of hughes. The young registrar said no you dont get fatigue with hughes but with lupus that i didnt have and fibromyalgia which was her diagnosis... my inr was 1.8 when i saw her

I felt confused needed reasurrance from my GP as i was feeling so unwell profound fatigue, poor concentration dreadfully foggy with articulation issues my inr was now 1.4... not being at this surgery long i saw a male doctor i had never seen before. He was so rude spoke over me and when i showed him the leaflet he turned to the pages re associated symptoms of anxiety and depression and prescribe me prozac... he was not at all concerned my inr was only 1.4 just said i was adequately anti coagulated and only focused on the new diagnosis of fibro!!

Fortunately i have since been seen again by the rheumatologist in aug who confirmed fatigue is indeed a symptom of hughes and my inr's being so low was a major life threatening situation as it transpires from hosp admission i had branch occlusion to left eye.

I took prozac for 3 days felt even worse and was concerned the GP was fobbing me off and even though he was not concerned about my inr that was my main concern and i didnt want any other chemicals in my body at the time with potential side effects.. my inr now needs to be above 3 and this has helped immensly. One thing that does interest me tho is i think there is a link between these two conditions and some literature says fibro is an auto immune condition as well but my gp on asking him this thought that was rubbish and it was a pyscosomatic illness!!! having bad spelling day today!!

Sorry for long entry ;-) hope all goes well at your appointment and i am glad to say the team i go to certainly treat fibro as a real condition and are very supportive. Take care love kathy xxx


Hi Caroline and kathy

Just to let you know Fibro is not auto immune but it is linked in with Hughes, Sjogrens, Thyroid Antibodies, Syndrome X (Cardiac) and Celiac disease.

I too cannot usually go even a year without a change in glasses but then it may not be all down to fibre and could be Sjogrens playing a part.

The diagnostic criteria for Fibro has changed recently because a lot of doctors could not get their head round just how much pressure to give when doing the 18 tender point test. Now its supposed to be easier because it takes in to consideration all the other symptoms. The only issue with that is if you have other conditions that can also give the same symptoms there is the potential for a false positive dx. It will be interesting to know what diagnostic route your rheumy decides to take. Let us know how you get on.



I don't have any of the other conditions you list (other than Hughes and Lupus Symptoms) but on examination at the London Bridge Hospital it was decided that I was positive for the fibro trigger points and so my GP and DLA were satisfied that this was adequate for a diagnosis given my other symptoms, one rheumatologist did tell me I didn't have fibro, I had real illnesses!

I do agree that things have been much better with plaquenil and escitalopram. I also take topiramate which is an antiepileptic but interferes with the way your brain receives signals so you don't receive pain the same way so that may also help. It's hard enough for you guys controlling your blood (at the moment I can't get anyone to listen to me about that so only take prasugrel) with inrs add in all the other stuff and you end up being your own pharmacists!

Take care of yourselves, Fibro is very real and very cruel and you need to be very very kind to yourself.

Love Sharon x

PS I have the changing eyesight thing too!


Hello,l thought i would join in... I have sjgroens, psoriatic arthropathy, now hypothyroid and adrenal problems and hughes...all muddled together, however the hypo thyroid things just diagnosed. mary F


Hi All, I am trying to get a diagnoises of Fibro as my doc says that he is 99% sure i have it but i am trying to get confirnmation last appointmnet was not much help. so we plod on . as they also now talking about sjgroens i think they just put it in a pot and see which one they lijke on the day lol


Just jumping in from the Fibromyalgia/FibroAction community on here.

If you have localised pain and stiffness that is not showing up on tests, and Fibro is suspected, I would suggest looking up myofascial pain. It is the cause of much of the localised predictable pain people with Fibro get, but you can have myofascial pain without having Fibro. Many doctors cannot distinguish between the two - 30 years ago they both lumped together as Fibrositis. But now we understand that they are different, and need different treatment.

'Fibromyalgia and Chronic Myofascial Pain Syndrome' by Devin Starlanyl and 'The Trigger Therapy Work' by Clair Davies are both decent books. Devin Starlanyl also has a website.


Hi Lindsey

It may help our memebers if you or one of your Admins from the Fibro groub can give the Hughes group key diffrences of the two so they can go to ther doc and say i have xyand z which points to fibro. If you can do this as another blog on Hughes I am happy to do the same for you on the Fibro group for Hughes.


HU HSF Admin


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