Sticky Blood-Hughes Syndrome Support


Hi, over the past 8 months i have had severe joint problems, which i put down to hard graft at work.I persevered to see if i could adapt but over the last few months it got worse and worse. I ended up taking strong pain killers after my shift at work but no pain relief.

I subsequently started researching my aches and pains of late and came across a condition

called "Fibromyalgia" PLEASE GOOGLE this as its to complex for me to explain.

Anyhow from birth i was born with a hole in my back which is a very mild form of spina bifida, ive always worked,played enjoyed life to the full and had no probs. I do occasionally have dizzy spells which i put down to having a blood clot on my brain 10 years ago and received medication for. I have always suffered with short term memory loss. but have always held down strenuous jobs.

But of late im struggling with my aching joints and came across Fibromyalgia.

Please help on advice and how to put this into context for my Dr..

Many thanks


19 Replies

Hi Mark, hopefully one of the others will get back to you that are more up to scratch with Fibro' as I was tested for it but have been told my joint pains are not down to that.

They say mine is due to APS & I now take Plaquinil for it & I find that helps at least 70% with the pains most of the time.....

It could well be fibro....have you been diagnosed with APS / Hughes at all too? as you havnt put that in your post?

Hope you are ok & I hope you get some answers soon & I'll look back on here asap & see how you are doing with any more answers, good luck.


Many people are given a diagnosis of Fibro when in fact they have other underlying conditions. The over lapping symptoms cleverly disguise many autoimmune conditions so its really important to get a correct diagnosis and not allow a Doctor to stick you in a Fibro bucket when you could be misdiagnosed and have perfectly treatable conditions.

If your symptoms are NOT down to APS, which Im assuming you are already diagnosed with, then the other culprits to look out for would be autoimmune Thyroid issues and Sjorgrens which often runs as a trio.

As mentioned above, Plaquenil is often prescribed for the pain and fatigue often misdiagnosed as Fibro and this can help a lot once it kicks in.

Even if you do get diagnosed with Fibro too it's important to know that any other conditions have been correctly identified in order for the best chance of good symptom control.

My advice to you is don't self diagnose but find a good Rheumatologist who knows the difference between all of these conditions including and most importantly APS.


I have been diagnosed with Fibro Myalgia but i agree with Aps on this one to get yourself refered to a GOOD rheumatologist.

I am also concerned you had a clot on your brain........i'm not convinced with this label of FM I feel it's an easy way out of not looking any further into what is really going. Jillymo X


Hi i have the same problems, was also born with a hole at the base of my spine and was diagnosed with Spina Bifida Oculta as a baby, i have terrible aches and pains in joints and all over my body also.

I have 2 friends diagnosed with Fibromyalgia and i believe i have it too. You need to be referred to a specialist and they will conduct a test. Its actually a pressure point test and if you have pain to the touch in i think its 18 places then you will be diagnosed with it. There is no cure for Fibromyalgia.

My doctor wont refer me nor will he do anything or give me anything for the pain (not that it would work anyway)

My advice is explain your symptoms to your doctor and ask to be referred to a fibro specialist. If they are good dr's they should do it unlike mine.



Mark I have fibromyalgia. Selby I was also born with spina bifida occulta, a pinhole in my spine at L5-S1. Lately causing huge issues with urinary tract.

Mark how are your vitamin d levels? Mine were insanely low and since I've been on a supplement my symptoms have improved greatly. I've refused meds for fibro as so many side effects. They say regular exercise and Tai Chi help immensely. Studies have shown this.

Regardless what is causing your symptoms I do hope you find relief soon.


i have fibro and APS, both diagnosed,, i feel for anyone else with the samething,, its a lonley painfull life.. Goodluck to you all x


I agree 100% its so lonely


If you are now diagnosed with Hughes syndrome I think you should put your own question on our site,

You have now answered on a 4 year old question and we still have too thick blood here all of us which has to be thinned before we feel ok.

Best wishes from Kerstin in Stockholm


new research has been found. I am not sure you have seen this or not but thought I would pass along just in case.

'....“Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands,” said Frank Rice, PhD, ...'

'...researchers found an “enormous increase” in sensory nerve fibers in the blood vessels of the skin on the patients’ palms. The extra nerve fibers appear to disrupt the normal flow of blood,....'


Hi I have read this before its a fantastic discovery thank you x


Hello , I also have fibromyalgia... It's awful. Every time I get a blood clot it flares up . I've had 20 clots from the age of 19 and I'm now 34. I have been on heavy pain meds and got dependant on them so many times . I'm off all pain meds now . I just live one day at a time . Also with fibromyalgia there are trigger points on your body that your doctor can touch and you will feel like a hundred pounds of pressure. Good luck buddy


Hi I've had around 30 blood clots so I know how you feel its an awful illness x


The diagnostic criteria for Fibromyalgia changed in 2010 away from the tender point test. That was the 11 out of 18 tender points where the Doctor pushes on the tender points with a set amount of pressure. If you feel pain in at least 11 of the 18 points it would be a diagnosis. That has all changed and its now done more on pain scores and symptoms. This is leading to more misdiagnosis. Some Doctors dont want their patients to be labelled with the diagnosis as its got a bad name with some medics and may explain why they wont refer you.

What you need is a GOOD Rheumatologist who is knowledgeable in all autoimmune conditions, can tell the difference between them and is not afraid to stick his or her neck out if results are seronegative to treat appropriately.


Dear Apsnotfab: I was searching local hospitals to find an APS specific specialist in my area. I did pick up a negative "attitude" about the disease in general. No one, however, would explain how, why or for how long this disease received such a "bad name". What is your opinion on "the bad name" and what do you suggest to do or say to change it?


The problem comes with any condition that does not have a physical diagnostic "test". I remember a Dr saying to me once, "Im a scientist and I only deal in facts that I can see, so show me something I can see on a test".

It does not take much to understand therefore why Dr's with that mentality will subscribe to the "its all in your head" attitude. Personally when faced with that attitude I point them in the below article direction and then dont bother to return. True scientists should have open minds willing to uncover the challenges of complex syndromes such as this. Thankfully research does continue and hopefully one day the relationship between this and many of the cross over conditions it shares will hopefully be explained.

In the meantime all you can do is point out that Fibromyalgia is a very real condition which, as you can see from this Medscape review for PubMed. The World Health Organisation International Classification of Diseases includes Fibromyalgia in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992 as follows:

M79 Other soft tissue disorders, not elsewhere classified

M79.0 Rheumatism, unspecified



Here is the Review


Updated: Apr 24, 2013


Fibromyalgia (FM) is a syndrome of persistent widespread pain, stiffness, fatigue, disrupted and unrefreshing sleep, and cognitive difficulties, often accompanied by multiple other unexplained symptoms, anxiety and/or depression, and functional impairment of activities of daily living (ADLs).[1] It typically presents in young or middle-aged women.

Fibromyalgia was once often dismissed by physicians and the public as a psychological disorder or "wastebasket" diagnosis because of an absence of objective findings on physical examination and usual laboratory and imaging evaluations. Many physicians still do not accept fibromyalgia as a discrete illness. However, basic and clinical investigations have clarified the neurophysiologic bases for fibromyalgia and led to its current classification as a central sensitivity syndrome (CSS).[2, 3]

Indeed, fibromyalgia can now be considered a neurosensory disorder characterized in part by abnormalities in pain processing by the central nervous system (CNS).[4] Increased understanding of the biological bases underlying fibromyalgia is rapidly leading to a new era of specific pharmacologic therapy for the condition.

At a clinical level, fibromyalgia is much more than widespread pain. It overlaps substantially with other central sensitivity syndromes, such as the following:

Chronic fatigue syndrome

Irritable bowel syndrome

Chronic pelvic pain syndrome/primary dysmenorrhea

Temporomandibular joint pain

Tension-type headaches/migraine

Posttraumatic stress disorder [PTSD]

Multiple chemical sensitivity

Periodic limb movement disorder/restless legs syndrome

Interstitial cystitis

Fibromyalgia also overlaps with other regional pain syndromes and mood and anxiety disorders. Indeed, the diagnostic label attached to a particular case may be determined largely by the first specialist that the patient sees. For example, a rheumatologist might diagnosis fibromyalgia, whereas a gastroenterologist may diagnose irritable bowel syndrome.

In addition, fibromyalgia coexists in unusually high frequency with certain illnesses characterized by systemic inflammation, such as rheumatoid arthritis (RA),[5] systemic lupus erythematosus (SLE),[6] and chronic hepatitis C infection,[7] among others. In such cases, both disorders must be recognized and treated for optimum therapeutic outcome.

Even as evidence-based medicine supplies a growing array of tools for the management of fibromyalgia, however, the art of medicine retains a central role. To successfully care for patients with fibromyalgia, the physician must demonstrate compassion as well as skill. Taking a careful history, listening to the patient's concerns, and performing a thorough examination are the foundation for diagnosing and treating fibromyalgia.

Management of fibromyalgia begins with a detailed history and a thorough physical examination (see Presentation). Making a correct diagnosis is crucial, and patients need to know that a name exists for the mysterious symptoms that they are experiencing.

The physician should inform the patient that no cure exists for fibromyalgia but that education, lifestyle changes, and proper rehabilitation can help the individual to regain control and achieve significant improvement. The overall approach for chronic pain in fibromyalgia involves a multifaceted treatment plan that incorporates various adjuvant medicines, aerobic exercise, and psychological and behavioral approaches to reduce distress and promote self-efficacy and self-management. (See Treatment.)

Historical background

Although fibromyalgia was not defined until the late 20th century, it was discovered much earlier. Descriptions in the medical literature date as far back as the early 17th century.

Until recent decades, many physicians questioned the existence of fibromyalgia. Over time, however, a growing body of evidence established fibromyalgia as a syndrome comprising a specific set of signs and symptoms.

In 1987, the American Medical Association (AMA) acknowledged fibromyalgia as a true illness and a potential cause of disability. Many well-respected organizations, such as the AMA, the National Institutes of Health (NIH), and the World Health Organization (WHO), have accepted fibromyalgia as a legitimate clinical entity.

Before 1990, no guidelines for evaluating and diagnosing fibromyalgia existed. To reduce misdiagnosis and confusion, the American College of Rheumatology (ACR) sponsored a multicenter study to develop these criteria; the results were published in 1990.[8] In 1992, at the Second World Congress on Myofascial Pain and Fibromyalgia, the diagnostic criteria for fibromyalgia were expanded and refined.

Despite this progress, the typical patient with fibromyalgia has seen an average of 15 physicians and has had the condition for approximately 5 years before receiving a correct diagnosis. More than 50% of cases are misdiagnosed, and many patients undergo unnecessary surgery or endure costly treatments that provide little benefit.

At some point, most patients have been told that nothing is medically wrong with them and that their condition is imaginary. Therefore, many patients become frustrated and skeptical. Although most patients are relieved when a correct diagnosis is finally made, the patient may need to be convinced that the clinician actually knows what is wrong and has formulated a treatment plan.


Although the syndrome has been known by other names, the term fibromyalgia was introduced in 1976. This word is derived from the Latin root fibro (fibrous tissue) and the Greek roots myo (muscles) and algos (pain). Previously, fibromyalgia was most commonly described as fibrositis; this was a misnomer, as "itis" indicates an inflammatory component. Chaitrow asserts that no inflammatory process has ever been found to be part of this disease.[9]


Thank you for your most thorough explanation and opinion. I'll take your advice. Incidentally, they decided to resume with a trial of Plaquenil and I remembered that you said Prof. Hughes once stated that the brand name Plaquenil works better in most patients than the generic. My Walgreens (common drug store) came back with a price of $497.00/90 pills after applying insurance. Medicare will not cover it. That is certainly not in my budget. With my Fentanyl patch costing over $500/month and 7 other meds - it's just out of the question. However, my rheumatologist said my numbers are creeping higher and higher and we will do one more test in 3 months and if they don't go down she wants to start coagulation injections rather than aspirin. I would get a second opinion before I start something that dramatic and intrusive.

Again, thank you for your most thorough answer and opinion.

Warm regards,



Thank you I thought I had a good Dr until she told me to accept I am never getting better so get used to it she was awful like she couldnt be bothered xx


Hi, I have only Hughes Syndrome but I wonder if you have read what APsnotFab wrote above 4 years ago about Fibromyalgia? It looks to be very good information indeed!

Do you have been to a Rheumatologist who knows Autoimmun illnesses very well? Try that! These illnesses are very tricky and the antibodies go up and down with time.

Best wishes from Kerstin in Stockholm


I was diagnosed with fibromyalgia which ended to be a very damaging diagnosis when my long term APS flared following flu... the term is sadly a catch all phrase but anyone with an autoimmune condition need other conditions excluding as absnotfab has already mentioned - there seems a debate amongst specialist as to whether fibro is an auto immune condition or a condition they tend to use if pain is the main symptom and linked to depression sadly this may mean they stop looking for another cause - often you then get treated as depressed / anxious which happened to me, but i knew i was not and the more i argued my corner the more they didnt help - i was given a high dose of amitrytylline because of its "antidepressant properties" that was so toxic it made me much worse (they then could say my excessive dry mouth was due to that) so no win situation and the fact my inr was only 1.4 and i was clearly anxious about my life threatening condition my gp's response was i have been seen at a specialist unit diagnosed by experts! i was in the process with switching GP's when i had several occular tias, left sided weakness when i recovered but was still fatigued with aches pains and still foggy brain i paid privately to be seen at St Thomas to find my ACL antibodies were over 400 i had bone dry eyes ANA antibodies and for over a year i had to fight to get proper care and recognition ... fibro i believe does involve thyroid and the adrenal gland mal function but until it is clear i am not happy to have that label but that is just from my personal experience.

2 years on i lost weight exercised it was a slow struggle and finally put on plaquenil - i have a new target inr 3.5-4.5 and test my own inrs but none of this would have happened if i didnt seek another opinion!!

the rheumy that dx fibro said plaquenil would not help me when i suggested trialing it - but i was started on it at St T's it has made a massive difference and now my imflammatory markers have been raised on numerous occasions they now say i have lupus like symptoms sicca manifestations (one antibody didnt come back positive so didnt get dx with sjogrens but i have all the symptoms!)

All i can say Mark is fibro is a convenient label with no cure where as more clinicians are accepting APS in deed does cause fatigue and joint pains - i had tender points and low grade fever i would not mention fibro let them diagnose you - obviously fibro does exist and many people live with it and manage the condition my friends who has Rheumatoid arthritis has fibro and goes to a support group.

Hope that helps and good luck i hope you feel better soon

kathy x


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