does anyone know if research is looking into the association of fibromyalgia and primary APS? its related to lupus in the literature.

[kathyD64]

I was just wandering about a link and if FM is indeed an autoimmune condition. It seems from being a member of the hughes foundation several people have been or ? got FM who also have got APS. Also i would be interested to know if there is any research describing fatigue as part of primary aps and to see how many of us suffer from it. Again my interest in this is purely due to alot of the medical profession associate fatigue with lupus but not primary APS which then makes it a struggle to get listened too. I appreciate the literature around APS describes the clotting aspect but once on warfarin, from my experience if you try to describe how badly you are with fatigue even many years before i was diagnosed with FM its a up hill struggle yet can be a very disabling side effect. kathy xx would welcome your views xxx

[Jade]

Sorry I have no idea about research but I was diagnosed with fibro in the 1990's and APS in 2004. I feel that APS literature assumes we will feel fine on warfarin. I only saw an improvement in headaches nothing else changed.

[jessielou]

Hi, I don`t really know about any research, but I have diagnosis of FM and APS, (lupus symptoms), seems to be quite a few the same oh here and fibro forums. so does make you wonder if they should be looking closer at possible links. But in these dull dark days of budget cuts don`t think this will be a priority, wrong I know, but hey ho!!!! Take care, hugs Jessielou xxxxxxxx

[LindyLou2]

Hello :-]

I have also been diagnosed with Fibromyalgia and APS . It was a rheumatologist who diagnosed me and since then I am just given a blood test now and again.I worry as I am sure I should be monitored more ? ? I feel sure there must be a link between the two conditions so was pleased to read other peoples comments. I was told that the severe fatigue was due to Chronic Fatigue syndrome. Has anyone else been told this too?

[kathyD64]

Hi Sarai i can relate to that my headache also improved on warfarin which do come back with a vengeance, migraine style, when my levels drop below 2. For me the fatigue has always been there.

I agree jessielou it seems there is a need for more clinical trials and research in this area for optimal management.. I am interested with new research with the drug LDN - i believe this once fda approved will help us all with auto immune conditions!! but again lack of funds mean no clinical trials here but they have had great success in treating MS fibromyalgia amongst other conditions in the usa. I will blog about LDN later as it seems there is alot of lobbying out there for FDA approval as it is such a cheap drug with minimal side effects and yes - has the opposite to many other drugs you lose weight not put it on!! a big plus for many of us im sure

Hi Lindylou as you have got fibromyalgia & APS i would suggest the severe fatigue is linked to this. Chronic fatigue or ME tends to be club together - my niece has hypothyroidism, history of migraines ? one tia but never proven & severe fatigue.. she is 30 but had 2 normal pregnancies but her fatigue persist despite thyroid function now normal and has recently been diagnosed with chronic fatigue/me because she has no antibodies for APS or lupus. Also to throw into the equation is how many of us get our cortisone levels checked??? with auto immune conditions we could have auto immune antibodies affecting our adrenal glands.. i so struggle with early starts but despite a friend who is a consultant neurologist suggesting that as well as vit b12 vit d checks as fatigue have many treatable causes!! i have not given up on that one will pay if necessarty to have it checked as my GP said it is an expensive test hmmm...

I think that is the problem with our conditions not everyone agrees, different people get opposite advice, and the conditions are in its early days. Sadly at present Best practice doesnt always follow like with many conditions it can be dependant on who you see and if they have an interest in these conditions. At present i think all clinicians should have an open mind and listen to us!! the sufferers!! as we are all unique but have alot in common!! but for now how i cope is i treat each day as a new one, only worry about something if it happens keep positive and am grateful to be alive ;-0 as for this condition i enjoy a challenge and know one day soon there will be more answer and most importantly greater understanding preventing people suffering miscarriages, tia's strokes dvt and pe's just to mention a few love to all you bloggers! kathy xxx

[jessielou]

Hi Kathy,

I have to agree with regards all clinicians reading from different books. I am present seeing a rheumatologist, a haematologist, a chemical pathologist, a gastroenterologist, respiratory consultant and awaiting appointment with an immunologist, gosh that lot hurt the brain and the hands. Guess what, they all say different things cause the fatigue, pain, breathlessness etc. There is so much more for them all to learn, Plus taking into account we are all different, is hard to know whats right and wrong.

My biggest wish is that they routinely test women at beggining of first pregnancy to try and stop the tragic loss and resulting heartache of APS`s effects on pregnancy. I wouldn`t wish that grief on any one. I`de had many miscarriages, then a DVT and PE and still no doctor thought to test for APS.

I needn`t have suffered and neither should anyone else. Makes me so cross, sorry for ranting, will get off my soapbox now. Hope all feeling not too bad today, take care, hugs, Jessielou xxxxxxx

[Rhian]

Hi, I have Hughes Syndrome/APS, and have suffered with chronic fatigue ever since my stroke in 2001. Although it may have been before that, because I always felt so exhausted after working, that no energy for anything else. No-one could tell me the cause, but when I was diagnosed with Hughes, I was also, diagnosed with Sjogren's Syndrome, and I think that is linked to chronic fatigue. I was told that sometimes after stroke chronic fatigue can be an on-going experience or improve with time. Unfortunately, mine has never gone away. I have to try to pace myself, which I don't always manage to do. I think it would be good to have more research into how many of us experience this chronic fatigue. Hope this was helpful, Rhian x