is there any help available - Fibromyalgia Acti...

Fibromyalgia Action UK

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is there any help available

ShelWhitt
ShelWhitt

had (query) 'fibromyalgia' over 30 years. diagnosed 10 years ago after going thro every hoop imaginable. from physio, chiro, rheumatologists, hypnotherapist, acupuncture, eighteen months on steroids for polymyalgia - then discounted. Nothing has helped. Whilst working lived on cocodomol tablets which I think has knackered my kidneys now. No painkillers work. Antidepressants make me even worse with side effects. Don't know where to turn. Up until 2 years ago managed to live a relatively normal life, provided I paced myself. This has its negative side. No one in my family or social circle, other than my husband, think there is anything wrong with me, and if I say anything ,make out I am moaning again. So I don't say anything and rarely go out anymore. If I say I can't manage anything it is pointed out I have done it before - with NO PROBLEMs. (Who are they kidding.)Last 2 years have been horrendous. Had hypothyroidism for 25 years and that was playing up. No sleep, when I do, horrendous nightmares. Constant, head, neck, shoulder and back and lower back pain. losing use in legs, Eyesight deteriorating had to see specialist over that. All this before I get to chronic kidney disease so limited medication (doesn't work anyway), liver problems and stomach, digestive problems. Don't forget the progressively worsening fibro fog and memory loss. I just do not know where to turn. I have had no support, very little constructive help from doctor (does tests if I ask), no financial help and now my husband has early dementia and is relying on me more and more, which I can't handle. I am exhausted by it all, spend hours in bed and crying. I am 76 years of age and feel my life has been wasted.

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No life has ever been wasted. Have you thought about going to a support group in your area? It can be helpful to be in a space over a cuppa with others who do understand. As for family and friends not getting on board have you considered sending for information booklet for them?(fmauk.org). Best I do is help other people that way I can stop thinking about me and think about others. Regardless of age the chances to volunteer are quite extraordinary. I actually just go to my library and do basic meet and greet while staff take toddlers for a story and music time.If you are a bit down some medications even if you tolerate them do not improve mood. Try writing down what you are grateful for say for 10 minutes. Smile at the list as it develops.A little creative work can be distracting and as the nights draw in out come my jigsaws! I am sure others on the forum have ideas!

ShelWhitt
ShelWhitt in reply to skit

Thanks for responding. You made me do a retake. I really shouldn't have said that about life being wasted. In retrospect, I had a great childhood and up until a few years ago did manage to function pretty much, on the surface at least, as normal , even though in continuous pain, and have achieved and done a lot. I do have a lot to be grateful for and I realise there a lot of people worse off than me. I suppose it is finally having to accept that my world is closing in, that I can't put on a brave face anymore, I can now do very little, and it is difficult accepting things are never going to get any better, only worse. I would love to do some volunteering, but the constant head pain (like migraine) stops me committing to anything on a regular basis. Anyway, thanks again, even having the rant, letting it all out and knowing someone has listened makes a world of difference

Hi

Go back to your GP and tell him how low you feel

Phone your local council and ask for Social Services request assessment thay will help with any aids you or your husband may need .

Contact CAB who will help if thier are any DWP benefits you may be entitled to

Always Samaritans at the other end of the phone if you need to offload

Share how you feel and I am sure things wont feel so bad .

Please keep in touch and let us know how things go

Rose

ShelWhitt
ShelWhitt in reply to Rose54

Thanks for responding Rose. That is quite a lot of practical information you have given me. I don't feel quite so overwhelmed at the thought of asking for help.

Rose54
Rose54 in reply to ShelWhitt

Thiers lots of help out thier its just knowing about it

Good luck

It is difficult enough being a carer for someone when you in the best of health but extremely difficult when you yourself have issues. Please speak to your gp about getting an assessment for help with you and your husbands needs , and stress that if you cannot look after him because your health is too bad it will cost them a lot more in the long run .

Hi there, you’ve been given a lot of very good advice.

I can’t speak for other parts of the UK, but if you live in England, you don’t need to go through your GP to have a Needs Assessment done. You just phone Adult Social Services for your area, and say you would like a Needs Assesment done, and they will put you through to Occupational Therapy, and they will speak to you and make an appointment to come and see you. If you think that your husband could use some help, mention that he would also benefit from a needs Assesment.

They are very good, and can also point you to any Financial Benefits that you may be entitled to if appropriate.

When people say “ you never used to have problems doing things “. Just answer “ that was then, and this is now” and let them draw their own conclusions. You’ll soon find out who your friends are. When asked to help, or go out, I always say, because of my health I can’t commit to things, but if I feel up to it on the day I will gladly come along.

Good luck, and I hope you get the help and support that you need.

GP. 😊😊

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