Sticky Blood-Hughes Syndrome Support
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Life with Hughes and fibromyalgia

I am finding it so hard at the moment. It was bad enough having Hughes without getting fibrolmyalgia - I think this came on because I had four shoulder operations in the space of 2 yrs and 4 mths (neither of which has been wholly successful) I am disappointed that a steroid injection hasn't helped much which it usually does, but expect that is because it usually perks me up and gets rid of my viral symptoms (I also have a touch of lupus) Seeing the consultant on Friday and he might try me on Duloxatine, but not banking on it as 10mg of amitriptyline puts me to sleep!

So doing what advised and doing small regular amounts of exercise and relaxation and planning my day so that I don't overdo things and have tried to rearrange all my social and other appointments so as to have just one a day. Didn't work that way yesterday and I am exhausted today. Anything in the house is done in small stages with easy ways out if poss - today I bought some ready-peeled potatoes which will do us for two meals.

Determined not to slide down the slippery slope as I have been there before, so trying to stay positive, but it's hard when I think to what I could do just a few weeks ago.


6 Replies

I have got hughes and fibromyalgia and oestio Athritis i know how difficult it can be to cope with every day life its a struggle just to shower some days, i try my best to stay positive even though i do get low moods and frustration from not being able to do what i want to do, i am trying to remember that there are some things i can do and concentrate on them instead of the negative side, best wishes to you xxxxxx



I am sorry you having a rough time, i knowhow you feel when you are in constent pain it can get you down. If you want to talk or anything then we are here if you need any help or want to privatly moan then please email me .



Hi Caroline 52 You are doing all the correct things but sometimes it seems that nothing works. Just rest,read or do whatever you enjoy if you can. I have Hughes,Lupus,Sjogrens,Fibromyalgia and Raynauds, some days I can tell what is active but sometimes they all are and I can't do a thing. Over the years I have learned to accept these things but I do all I can to find out about them so that I can help myself in my care. I have a wonderful GP and many wonderful Consultants who do all they can to help me, I consider myself very lucky in that respect I know it is not the same for everone, I have read some dreadful things about doctors. If I can help at any time, if you just want to talk I am here. Sorry you are suffering

Regards Carole-J


Hi Caroline So sorry to hear about your dx and that things are difficult for you at the moment.

I echo all that has been said so far and want to reassure you that you are approaching this in the right way and with the right attitude.

FM can be very frustrating condition to deal with and has been said the symptoms cross over with Hughes and other autoimmune conditions so you can never tell sometimes what is related to what when they flare. I just don't bother to work it out now and consider it all part of my "family" condition!!

I am a Director of a national Fibro Charity and we are probably going to set up a forum here on Healthunlocked for fibro in the very near future as there are so many who need the same advice for that as they are getting for Hughes here and from all the other excellent charities who run their forums.

In the meantime if you need any specific advice on meds, exercise or want to just talk please message me. Our website has stacks of info on it and I can give you a link to that too.

Lynn x


Hi Caroline

I have been offline for a while so had not read your story.

I too have Hughes, lupus symptoms, fibro, raynauds etc. So do understand the pain n frustration you live with. Days when hiding under the duvet is all i want to do.

I'm in first few months on plaquenil and it seems to be helping. As Hughes patient says pm us if you need help. We here!!

Take care gentle hugs sheena xxxxxx :-) :-) :-)


FWIW the FibroAction HU Community is now live. It is so, so common that people with autoimmune and chronic pain conditions end up with Fibro as well. And it's only in recent years that we've started to understand why. The good news is that Fibro can be managed, especially if you can get your primary condition under control.


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