Questions left unanswered...

[PurpleZomBry]

Hiya all! I'm Purple and Im new here! Nice to meet you!

I was wondering if anyone could help...

So after years of suffering i finally have my diagnosis of fibro, all i have had so far is they have increased my antidepressants to help (which is great as they might help) but have been left waiting for them to kick in with no pain relief and no idea on what i can do now.

My Families outlook is mostly all the same in that i am 'lazy and sit on my arse all day' or that i should 'just get a job for the social life' but they dont see the amount of pain i feel daily. I find myself unable to move most days due to the pain and when i do eventually find the strength to move i have to go straight to my coping mechanisms (heels, a fully ott outfit, and music) to keep my mental health at bay.

Doctors have given me sicknotes and the benefits office seems to understand how this affects me, so my question is how can i tell my family that these comments make me worse? How, when ive already explained the pain im in do i help them to understand my issues and how can i tell them that im not lazy, but that me managing to get out of bed is a massive hurdle for me daily?

Thank you,

Purple

[rosewine]

It is so difficult for anyone who does not have fibromyalgia to fully understand how difficult life can be for us on a daily basis.

Why don't you go on the link for Fibromyalgia Action UK website and get a Information Pack and show your family some of the details in there that explains the illness. Hopefully it will give them an insight into what you are up against. The literature will also help you as the more we can understand the illness the more we can do to Hopefully help ourselves. It will also give you ideas about medication and exercises etc which may help. Good luck.

[PurpleZomBry in reply to rosewine]

Thank you so much! I'll give it a try!! xx

[Dinkie]

Umm difficult one, but if you google fibromyalgia letter then up will come a letter to friends and relatives which describes what it is like to live with fibro. Also if you are not familiar with the spoon theory that is another one which will help explain how you feel.

It's a case of gentle reminders that just because you did something yesterday doesn't mean you can do it today. The art of pacing is everything with fibro but unfortunately the temptation to overdo things when having a better day is often overwhelming and then we have to suffer the consequences. That's not to say that some special things are not worth the payback because they are. I love to steward at championship dog shows but it means that for 3 days before and a week after I take time to preserve my energy and then to recover from the exertion of travel and mental stimulation of all the paperwork.

There are also publications to help explain fibro to employers etc.

[PurpleZomBry in reply to Dinkie]

A friend of mine had explained the spoon theory but i hadnt thought of that helping my family understand but thats such a good idea!

That helps so much thank you!

[SusieSquirrel]

Hi Purple my family are the same especially my 75yo mother, who is fit as a lop. I think that's the problem with all hidden disabilities. Plus your loved ones don't like to think of you having an illness.

I have had fibro for 5 yrs now. I also have other problems and its taken a shunt fitted and a catheter fitted to my brain to make my family think that 'oh there really is something wron

g and shes not just a lazy #$@€&£ who sits on her a$$ all day.

I have never been a one to complain about anything mainly because nobody listens when I do.

Someone above mentioned the fibro letter you can find on the Internet, which I sent to my husband and kids but I knew it wasn't worth sending to my mother as she's so set in her ways.

I hope you have more luck than i

[JayCeon]

Visualizing often help, either descriptions like 'remember when you had severe flu', "tin man", lead suit etc. or like here: healthunlocked.com/fibromya... or look for appropriate pics on the web <invisible chronic pain illness/disease/sickness>. Run over by a truck/train etc. is used a bit too often, but if you add to all these: 'Now imagine every day for a week, month, year, rest of your life' it shd make the difference clearer...