Sticky Blood-Hughes Syndrome Support
8,095 members8,332 posts

feeling low

feeling fed up today ...dont know why but today is one of those days when even i cant hide my pain from myself let alone anyone else.....

i hate having hughes, people cant see it and i dont moan about the pain, headaches or tiredness..hate being told everything will be alright, hate being accused of hypachondria, hate not knowing what is a symptom of hughes and whats not....i hate the way people assume everything is ok cos its not...i feel trapped between a rock and a hard place, i cant get work because of it and i cant get benefits cos apparently i am fit for work.... feel like a dof chasing its

own tail ....

lets hope tomorrow is a better day :)

7 Replies

Hi babe

So sorry that you are going through a bad time if I and otheres are honest we all feel the same and I think we all pretend that all is well cause if we sat down and gave it good thought we would be all scared of the situation I seem to be in my own little world and not on the same planet lol where do you live are you in the U.K you are in the right place for very good info and very kind careing people take care sweetie xxx


Hey there

I can offer a smile, in an attempt to brighten your day :) - or as with taffydaffy - (I love that nickname) I can say hey, yep I think we do all go through it - If you can't work... do you have a specialist that will support you and write saying you can't? I wonder if anyone on here has been where you are for work? - I can't agree with you more, about the not knowing what is a symptom and what's not!

They say today is the tomorrow you worried about yesterday and all is still well, so on that premise, tomorrow will be better.

Hope you do feel better - and on the positive side, we all have this fantastic site, to vent or chat - with people who at least do understand what we are going through.

Sending you warm smiles




Hi sorry you are feeling so bad. I know I go on about it but antidepressants helped me. I no longer wake up crying or burst into tears when out shopping.

What medication are you on ? Warfarin are you seeing anyone from the Haematology team I think I feel worse when my inr is low I am sure depression is one of the symptoms we all get so we understand and have sympathy for you, awful isn't it

Love Karen xx


HI Lollieral,

We all here know how you feel it is so annoying to feel like a fraud because know understands well we do and we happy to hear you messages as we have said be fore if we cannot be here for each other when can we be.



Sending you hugs and chiming in to say Me Too.

I think if we could just know that yes definitely that symptom is Hughes and we just have to deal with it rather than second guessing all the time as to what is and isn't and which one is going to kill us it would be a little easier.

If others could understand it would be a little easier.

If we didn't have so many different symptoms cascading in on us at one time it would be a little easier.

If the drs knew what they were doing and we could rely on them it would be a little easier.

Group hug.


Hi there

totally agree with tassie (above) - from the "Me Too" to the "Group hug"!

It's crap and if i could magic you better I would. Sadly I don't have those powers (yet!!) so instead I am hoping you feel a bit better tomorrow, or that you see something that really tickles you (actually i hope for both!)

Take care and don't be too hard on youself for feeling rubbish



Hi hon

me too. As tasch says its crap, gets us all down. I thought ide posted yesterday, but damned brain fog strikes again.

I often wish it was hypochondria then I could make it b####r off. Sadly its not and it hurts, so sending big but gentle hugs and hoping today is a better day.

Love Sheena xxxxxxx :-) :-) :-)


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