Sticky Blood-Hughes Syndrome Support

worn out again!

Really fed up again today. I just don't seem to be able to get my act together as I just feel so worn out all the time and mentally muddled. Trying to lost weight and get fit but it is such hard work. Decided to give tai-chi a try again today but came home mentally and physically exhausted, so am not going to go again for the moment. Why does everything have to be such an effort? Am now trying to drum up the energy to try and write the shopping list for the week, but at least tonight's menu is easy!

My physio suggested I consult my GP because my mother and sister both have polymyalgia so have booked a blood test week after next. I think my GP was a bit sceptical until he pressed my thigh muscles and I screeched. So that might be another mountain to climb, and of course another reason for the fatigue.

Glad it's the weekend now and hubby will be home to keep me going.


8 Replies


It can be very annoying when you always feel tired and its hard to do anything but only you know how you feel and do not let anyone tell you otherwise.

I found that some times its better to find a diffrent way of doing things like i have a white board on the kitchen wall so i can write what i run out of so if i get to a pooint i cannot do anything my wife can do the shopping for me its finding little things that make the diffrence.

Good luck and if you every want to chat we always here



Hello, Sorry you are having such a bad day. I have days like this the fatigue and the mental muddling are so disheartening. I try and do my exercise every day - and all routines broken up into units of 10 mins, with long breaks between. Also when feeling extra frightful I do try and watch comedy.. or listen to things my husband has done, he is very hilarious. Laughter does help. Hope you feel better soon. MaryF


Polymyalgia has some very distinct symptoms which cannot be muddled with Fibromyalgia although some docs still seem to think they are similar lol! Perhaps its just the myalgia bit that confuses them.

I remember when I was first dx and was sent to a Rheumy from an Orthopaedic doc to have one or the other "ruled out". A quick press of the tender points and a discussion of my other symptoms brought him to the dx of Fibro.

No blood tests will reveal a FM dx but they will exclude other conditions.

I do hope that you have escaped what your mother and sister have unfortunately acquired. APS is enough for us all to cope with!!


Hi caroline

I`m sorry you feeling so down and unwell today.

The muddling and fatigue do get you down, I make lots of notes to myself, and as paddy says use a white board.

Sometimes with the fatigue you have to be kind to yoursef and just give in, rest and relax. Exercise in small chunks!!

I had similar to Hughes Patient with FM diagnosis, but unfortunately rheumy at the time didn`t seem to want to help, different now and sorted.

I hope as above you don`t have polymyalgia, don`t need anymore.

Anytime you want to rant, moan or have questions we are here.

Take care gentle hugs Jessielou xxxxx sheena xxxxxxxx :-) :-) :-)


Hi Caroline,

When I read your post it made me tearful. I know so well the problems you describe.

The fatigue and mental muddle is very hard to live with. APS is a tiring illness because even little things take so much effort.

It is also difficult to convince those around you how bad you feel. The other week I got a terrible headache and felt ill for 5 days. My sister rang and asked if I thought I had had a virus. Aaagh! NO I HAVE HUGHES SYNDROME, this is the sort of thing I have to deal with on a regular basis.

Like you I am trying to excercize and lose weight but when you feel rotten it is so hard.

I think Doctors are always trying to find other causes for our symptoms when in reality a lot of them are down to the Hughes. I find that I am very painful to touch, especially my lower legs. Even rubbing cream in can be sore.

Like the others I have to make lists, sometimes even everyday things like do vacuuming!

I agree with Mary about trying to watch something funny. Laughter can really make you feel better.

Take care thinking of you Sue


Know what you mean :( everything is such a huge chalange on a daily basis, some worse than others.

I too write down in a pad 'things to do lists' ! it does help, even though when I write a shopping list....9 times out of 10 I forget to take it out with me!!!!

I push myself most of the time to go to the gym at least twice a week, but struggle some you say it seems like a huge effort :( some days I'm not too bad & can do Zumba...some days it's almost impossible what with co-ordination & joint pains!!

Keep your chin up hun & keep's worth it mentally & physically in the end.

Sue xx


I test negative... but the last week or so I have been exhausted constantly...I have got a bit of a cold but I think this is worse...I had to keep the kids in today just so I had enough energy to take them to see the fireworks this evening...

Anyway - because I'm ditzy- (and before I discovered the joys of internet grocery shopping - fantastic) I made a shopping list on the computer -with everything I usually buy (in the order it is in the store!) - I print off a few copies at a time - write on the top copy stuff that I don't usually buy as I discover I need it and then before I go I cross off what I don't need

I also use outlook tasks - and try and do the same jobs on the same day every week - even down to 'write to do list' and then tick them off every few days...I also use the 'notes' and have ones like 'things to buy' and 'to do -small'...

For holiday packing with children...I have a computerised packing list -with every thing I have ever packed...I copy the file and then delete what we don't need to take (like sun hats in winter)...takes the stress out of it ...

(reasing that back - I really do think I have a problem ...someone once described me as either the most disorganised organised or organised disorganised person they had ever met - I think the second one applies...)


Hi Caroline, well you sound like me !!! I cannot understand where my energy has gone ! It is such an effort just to have a wash these days- Like you I feel exhausted everyday, weak and extremely tired. I am just hoping one day I can be given it all back-I miss my energy-I used to go to the gym nearly everyday, keep the house immaculate, do a fulltime job and still on the go until I went to bed at night but that was me !!! But me has changed bigtime but not through choice- I hate the way my body is now-just lifeless !!! I get confused easily, cant speak properly, accuse everybody else for losing things and have totally lost the plot !!! I am trying to lose some weight but finding it hard because no energy beats me and when I am feeling low and fed up I comfort eat !!! I have joined Rosemary Conley Slimming Club but did not have the energy to go last week ! So I ended up overeating !!! I feel muddled up most of the time - Keep going !!!!


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