Fibromyalgia Action UK

Things r getting worse !

Hi all lately everything has been getting so much harder . Been really unwell no energy sore everywhere sleeping a lot again, my face keeps falling at one side just waiting now on a date 2 get into hosp to get tests on way my face keeps doing this. I have lupus and fibro docs say my face looking like stroke but my head isn't showing up these signs . This is happening me everyday now. All I wanna do is be a 26 year old girl party with my friends and family and have a great life with my partner but even these simple things seem so much harder. Have it in my head that I wanna start getting out even 4 a 10 min walk but this is so hard as the mood and soreness I wake up in is stopping me then I feel worse 4 not doing it. I just can't stop being so down. Then my weight that's another thing, I just feel like a big fat mare !! Would really like 2 start a few hobbies but am so scared 2 do this incase I feel at these again !! X

7 Replies

Sorry to hear that you are feeling so down. My hobbies keep me going to be honest - I don't really worry about what other people think about what I do or the quality of it - it just helps to take my mind off the way I am feeling.

I have recently got into the art of Zentangle which really does help to calm my mind. If you don't do something, even if it is just reading then your mind will be on your body and how you are feeling. Believe me, I know, I have been there.

Good luck finding something, better to try at something than do nothing at all.

Very best wishes.


Thank u so much 4 ur reply.. I used to love my photography passed the course and all just felt I was no good at it!! And now my good camera is lying there not looked at it months.. Hopefully find the will to start again . Xx

1 like

Good luck with the hospital tests hope they can help ease your symptoms so you can get some of your life back, doing the things that make you happy.

If the face dropping is a Bells Palsy the doctors can help most cases quite quickly once again good luck.


Hi Ruth, sorry to hear that you are having such a miserable time of it and that these worrying symptoms are not letting up. It can be so hard for others to understand just how much effort it can take to do the simplest of things, and yet how can they be expected to understand, when we hardly understand the symptoms ourselves? It sounds like your interest in photography continues which is encouraging and although at this precise moment getting out and about to take photos seems too much for you, how about starting with something that 'may' be possible? You could pick up your camera whilst you are sitting down, run through the controls and settings and if you have any notes etc from college that are interesting and helpful for you to read, you could do that also. Probably 15 mins in the morning and then 15 mins in the afternoon to start with - would be a rough length of time to do this. if 15mins is too long then cut it down to 10 mins or 5 mins. It 's about doing what is possible and building up to a longer period of time when we can manage that. As a next step on from that, getting your book or portfolio of photographs that you have taken and focussing on them would maybe also help. There is evidence that when we just imagine ourselves doing positive helpful things, that the body physically responds as if we are actually doing these things and therefore gets the benefit. So for example if you run thro the above things with your camera and photographs and then close your eyes and imagine you are out and about taking photographs then this should help. The biggest benefit is felt when you really employ all of your senses in the process of imagining, e.g. what do you see, hear, smell, touch - this helps us create a very real experience and it is processed as such. It may sound a bit hippy-ish but it works well. All the very best. :-)


Hi Ruth,

Just to say I really feel for you, that's a lot to go through. I hope you can get some help.

Sending you my very best wishes x


Hi Ruth_Iderry

I am so very sorry to read of how you are struggling at this time, and I genuinely hope that things start to turn a corner for you soon. I know this may sound a bit drastic but I was wondering if you had considered using a tri-walker or rollator to help you get out and about?

I use a tri-walker and it has helped me tremendously, especially as I use to fall a lot with just a walking stick. It may be something to consider as it would help you get a ten minute walk?

I want to wish you all the best of luck, and I sincerely hope that you find the answers that you are looking for?

All my hopes and dreams for you.

Ken x


Ruth ... I enjoyed "Spirit's" comments & suggestions for you. The idea that you might review your notes and pictures, and in that way "renew your interest" in photography is a really intriguing one. I have in the past used this same activity to encourage myself to get involved in several types of art media by reading through some of my old journals & sketchbooks. I think that you might even find yourself interested in taking pictures of your surroundings right there at home, and then you might possibly decide you have the courage to venture out. But whether you do, or you don't ~ either next "step" is fine. So is the decision not to even take a next step.

But I hope you feel like you can/want to ... and that you have much better days to come.


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