Bad few weeks

[emjane4465]

Ok so Its been around a month since i was diagnosed. I have Dyspraxia too!

Still no pain management .... parents have told me it takes weeks for the GP to get notes from the doctors so its not worth going yet , this has made me feel so bad. On a bad day I feel like a cowboy walking. I get so tired aswell. My boyfriend has started telling me am using tired as an excuse for everything..

So I've gone and bought a few books. My doctor told me to give up my showjumpingyet one book said a fibro patient is running marathons.

Why are my family , boyfriend , friends and doctors telling me what I can and can't do and what I can and can't achieve! it makes me so down and angry! I feel like I want to hybernate and not come out of it.

Am 19 and now have no say in what excercise i can do without been shouted at!

What excericse can you do and how do you get pain management ... am desperate!

[Extremelygrumpy]

I was first diagnosed with fibro in my 20s I took codyramol way back then and that helped with pain so well I was able to carry on life fairly normally ... Just having bouts of real tiredness but I found doing exercise I enjoyed certainly helped and if I overdid it just took the painkillers. Now I have arthritis and can't exercise my fibro is deffinately worse. I know it's hard when you feel you parents and bf don't support you.. But you know your own body and if you feel you can do some exercise then I would say try it ... If it makes you worse you can always say ok you were right to the dr and family. The trouble with fibro is everyone is different on different days.... I would certainly see your gp about pain killers and ask to be referred to a pain management clinic. I am sure your diagnosis would have got to your doctors very quickly so go as soon as you can. If you are lucky as I feel I was with the right pain management you may be able to carry on with exercise and enjoying life.

Hope this has helped

VG x

[pagan1960]

You're 19 and therefore cannot be told what to do. I know what a pain this illness is and I also know how people assume there is nothing wrong because there are no outward symptoms., I too feel that people around me think I'm being lazy. If only they knew what the pain and tiredness feels like. I was referred by my doctor to the rheumatic illness hospital in Bath and the staff there gave me various methods of helping myself e.g. pacing myself, hydrotherapy and gentle exercise and I am taking various meds to control the pain (not fond of it but I have to have something). I think it's awful that people are shouting at you. It's an illness, not a fad. Anyway, if you need to talk, I'll listen.,.

[theshadow]

My dear emjane,

This rotten fibro, you are so young to have to put up with it. I would suggest you try what is right for YOU, not your parents, bf or even doctor!

It really is trail & error as to what you can do, & just because you can do it today doesn't mean you can do it tomorrow. Also what you can't manage today you may be able to do tomorrow. You seeing a trend here? You won't always know what you can do today without trying, if you ache too much or are sooo fatigued don't try, but otherwise give it a go! Life is for living! To hibernate would be an existence, not a life. You have to learn to pace yourself, easy to write but harder to manage I know! lol

Tell the others to "butt out", its your body & you shall decide what it tries to do! You may pay for it tomorrow pain wise, but your mind will feel so much better to have achieved something you wanted to do.

Pain management gets your "head sorted" ( for want of a better term!) You have to learn to accept your old carefree life has gone, & I've found that the hardest part. Concentrate on what you can still do,even occasionally, don't rule stuff out yet just coz someone says you must. It has to be YOUR decision. Keep pestering your GP, say you are getting depressed & need help coming to terms with your illnesses. You need pain management NOW!

As for those people who shout at you, say in a gentle calm voice (even though at that moment you could strangle them!) that it is your body, your life & you will do what you can, with or without their approval! You are no longer a child, & have no desire to be treated like one.You may wish to add "with knobs on!" but not sure that's adult behaviour!

You have enough to put up with, without negative moans from your bf. Tell him to stay awake for 48hrs & see how tired he feels! That's what you battle with every day!

Good luck, I hope you get the medical help & advice you need soon, in the meantime come on here & rant & hopefully we can help!

Gentle hugs xx