Sticky Blood-Hughes Syndrome Support

Fatigue and overlapping conditions

Having been up half the night reading useful books - combined with Paddy's latest upload on Fatigue, I have a terrible urge to go back to sleep. However a nice crisp day here with the added effect of a the moon still out there. I have not loaded a blog on here lately, having been writing an ongoing diary elsewhere due to my recent diagnosis of hypothyroid and tired adrenals.

I find that keeping a light, and amused diary stops me wanting to hurl all second hand books ordered via Amazon, on all conditions, out into the garden from my bedroom window, I have developed a mono brow as I have frowned my way through them all. However as some are hard backed editions I now have a useful platform of them on the floor, very useful for reaching up to the top of my cupboard for presents I have forgotten I have already bought!

I think we all agree that the tiredness that Hughes give us is maddening, and lots of us appear to have several things, and at times, not able to sleep - grrrrr etc. So lots of conditions all feeding into fatigue and its associated irritations. The only benefit from having insomina and fatigue is being able to watch re runs of the Dame Edna show late at night!

My delights are Hughes, psoriatic arthropathy, sjgroens, hypothyroidism and adrenal fuss! I am currently working with a well known practitioner to sort this side of things out, (the hypothyroidism/adrenals) So far, some very practical help and some realistic progress. Also this week, getting up at some awful hour to travel into London from the outer sticks with my daughter to go to St Thomas, after we have finished being collective pin cushions, we will then go and meet my eldest son for an exciting lunch we hope.

Today's project, whilst moaning continually about tiredness will be to shift the mountain of internet shopping from the hall and make room for the builder's to finish my downstairs bog and shower, nearly there, after which i shall retire for a short rest and plan Christmas menus whilst filing my fangs.

Mary F x

3 Replies

A delight as always Mary to read your jottings. I do hope St Thomas is better for you, I am still quite upset after my experience.

One of Paddy's studies with FM and APS hit home with me and despite my quite extensive FM knowledge I was surprised to learn that this was around and known about some 12 years ago - why didn't I know about this and what has happened since then to progress this? I have focus for my next lot of questions for the powers that be!! It makes me wonder why none of the medical fraternity could put two and two together and work out that somebody who was having thrombotic events could be at risk due to the fact they also had FM etc.

Like you I too have the dreaded Thyroid and adrenal issues, however like the majority of people with this problem, plain old T4 does not come anywhere near hitting the spot and my TSH results will nearly always come back in the "normal range" which makes it ok then!!! Give me some T3 and I will be something like feeling human but thats a whole different subject matter and for another forum.

As I have said so many times before the real problem seems to me finding people that want to treat the whole person. The endocrinologist looks at the hormones so will treat the thyroid, he wont touch the blood or the HRT. The Gynaecologist will treat the HRT but not the sticky blood, or the chronic pain. The Rheumatologist will deal with the Chronic Pain and provide you test positive to antibodies those autoimmune conditions but none of the other conditions of the specialties already mentioned. The Immunologist will treat Chronic Fatigue and infection but unless he's pretty clued up won't link anything else together and finally the Cardiologist will look for blockages and clear them but won't necessarily look for causes if you are having angina pain but with no reason for having it.

Is there any wonder that people fall through the net? Now I have thoroughly depressed myself I shall go off and finish the christmas decs.....


Thanks - and I am seeing Dr Barry Durrant Peatfield who does treat the whole person. Very pleased with progress so far! MF x


Good to know.


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