Hi, i was very interested to read this because i am in the same position. Was diagnosed in 2012, took all sorts and combinations of different pills which didnt work and in the end i just do my own thing. No prescribed medication, i just take collagen, omega 3, paracetomol and use a variety of creams and lotions to help with the pain. Ive had the physio and the acupuncture too and also bought one of those pain pens. So when my time comes for a review, i will have nothing to show as proof. As you say, its degenerative, will never get better, we just do whatever we have to to get through the day. I will be keen to see if you get any replies and advice. Good luck and gentle hugs - we all need some of those.
I have more than Fibro I didn't feel the need to list everything together with it's stage .... however my fibromyalgia does get worse ...then better ...then worse . But appreciate your clarification for those who aren't aware ... 🤔
There was no need to list anything. I was replying to geminilady.
We all get good days and bad days that goes with the illness. But it's never been proved that it is degenerative. Other illness we may suffer with may be the problem.
Why do you feel the need to reply again. It's clear from both my and geminilady that we understood each other and didn't feel the need to "correct" each other. As I'm sure most people on here would have understood what we meant. So to now have yet another say feels a little excessive.
Hi Dizzytwo, yes i realise my comment makes it sound as though i think its degenerative. I know it isnt, but like Mrdiagnosis, i too have other conditions which are and i sometimes cannot distinguish which condition hurts me the most at a particular time. Some days are ridiculously painful and others day i can get by with my pills, potions, lotions and sheer determination not to let it beat me! Thanks for pointing that out though.
First of all good luck with it. I don't know whether you live on your own or have a carer ut you could have someone who knows you well write a letter outlining the way your illnesses effect you eg physically, emotionally, etc.Outline what you have tried both medication and therapies and why they haven't worked for you. If you can't take a medication which is normally prescribed for fibromyalgia say why.
Do a diary in the form of a log eg what time you get up, how long it takes you to get dressed and what difficulties you experience. How long it takes, how long you have to rest afterwards. Do this for everything throughout the day. What kind of sleep you get so the assessor can see the full picture.
Thanks, just trying to help as I know how difficult it can be especially trying to explain all the symptoms and how they affect you. I actually found making a detailed log and notes for a couple of weeks made me really think about what problems I had an how they had an affect on my life. I was surprised for instance lohow long it actually took me to get up, washed and dressed. I saw the assessor really look at it and I think it gave her a clearer picture. We get so used to coping it becomes our new normal.
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