Hi, I've recently been diagnosed and am struggling to help those around me to understand. I also have joint hypermobility syndrome, vitamin D deficiency and RSI.
How has anyone else successfully managed to explain the condition?
It doesn't help when those closest to me say "Well, at least the vitamin D thing and RSI are real"....
It's all making me feel pretty useless and a fake right now.
Hi
I'm sorry you are feeling so rotten. You could maybe take one of these people to your next appointment with you, then they might actually realize that's it's real. Maybe show these people this forum and show just how many people have it.
I've been very lucky as uve had great support. Please take care. Love and hugs Lynne xxxx
Thank you. That's not a bad idea. I'll do just that!
You are very welcome. Hope you go on ok. Love and hugs Lynne xxxx
No I don't think anyone can understand Fibromyalgia unless they have it. I dont really try to explain it to people. I feel there is no point. I have had negative remarks about it. Hopefully there will be a cure one day. I have had it for 20 years. I do feel that its like being tortured some days and the fatigue is very frustrating. Never give up.
Hello Claresy72 and welcome to the forum.
In the future you may wish to lock your posts in order to protect your and other members privacy, here is the link how to, healthunlocked.com/fibromya...
Here is a link to our main page with lots of useful information for you to show friends, family and maybe work colleagues, fmauk.org/
I agree with Kari00 that unless up have gone through a disability of sorts then it is hard to understand, however with more information you give them the more they can try to understand.
Hello Claresy72, I think mostly everyone with long term issues like this that are not easy to explain goes through a period of assessing who they will persist with. After a certain point in my own life I decided there was only so many times I could try and justify the condition to others. Very occasionally I have sent people a link to an explanation of the condition and said, it's here if you want to read it. The rest of the time I have let go and just got on like everyone else to pace and manage the challenges of day to day living. The big plus nowadays is that the condition is finally getting more publicity and understanding generally, and in the years I have had it, is growing in recognition and acceptance. Good luck to you on your fibro journey and may it make you stronger in your self respect over time.
Morning and welcome , I see Michellebutterfly has posted a really helpful link for you, yes it is hard to get people to either understand, acceptance was what I found with my grown up children, they didn’t relate really and didn’t want to accept mum has conditions , over time friends have become very supportive, I used to get upset when I had to cancel or not join in but I came to realise it was not doing me any good and now I’m much more comfortable taking each day as it arrives and actually saying no, yes good idea let them have a read about the link and then they might realise how many thousands have fibro, how real it is , we have all had comments I grit my teeth smile sweetly and move on. Take care x
Hello I describe it as a chronic pain condition that affects my muscles joints tendons ligaments and bones all at various times or altogether. my sensitivity to light and sound is heightened when pain is extreme. sleep is interrupted by the pain every night in spite of painkillers leaving me in a permanent state of exhaustion, my bowel and bladder are both sensitive also so my brain is like mush my memory cannot be relied upon but I look absolutely fine! Sending you Warm wishes
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