Md55

Hi I'm marylen. Was diagnosed with fibro 14months ago. Since then seem to be going downhill fast. Am finding it hard to come to terms with what it is doing to me physically and emotionally. This site is giving me hope advice and a giggle. Ta.

[Tea1234]

Hi MD55

I know what you mean I have to wait until September for mine to be diagnosed, however the letter the Rheumatologist did say it's more likely 98% that I have Fibro!

Coming to terms with it like being on a rollacoaster With your emotions.

Anyway good luck with everything. Xx 😊 Tea1234

[Hidden in reply to Tea1234]

Good luck to you too. Seems like its a case of finding right meds to help with sleep and pain. Not got there with either yet! Md55(marylen).

[Peace2014]

Welcome aboard. I was only diagnosed last August. Like you I have not come to terms with it yet. I wake up with what feels like a 70 year old body, hea straight for the bathroom and put my hands in hot water since I do not have much movement in them first thing (I do crafts so this annoys me the most) and then spend the rest of the day ignoring it as much as possible. My family don't understand, but two of my work colleagues also have Fibro which makes it easier. I love pic of the day and I log on before breakfast just to what todays pic is.

Take care.

[Hidden in reply to Peace2014]

PIC of day is fun. Shame your family don't understand. My husband is a star, cooking and cleaning but others don't always "get it". Work ing is tiring but they are supportive. I know what you mean about mornings. Feel for you about your hands. It must be frustrating. My ankles and head do me in! Marylen.

[magnetta]

Hi Marylen,

Sorry about your diagnosis, but I'm glad you are on the forum, I certainly find it useful

If it helps, you are not alone, I was diagnosed 6 months ago and I'm struggling to come to terms with it too. It is getting worse so quickly. I'm starting to realise that I might not be able to work full time or even have a baby etc. Scary isn't it?

But with time we will hopefully learn to manage our condition. This is possible!

If you have a local support group that is worth trying. My new one gets me free hydrotherapy every week.

I find keeping active helps (I say this after 4 days stuck on the sofa though...) But walking, Thai chi and pilates all help me. This morning I spent 5 minutes stretching and it made me feel a little better

Take care of yourself x

[Hidden in reply to magnetta]

Thanks. I hope you find a way to become a mother. It must be a worrying time for you. I try to go for walks when my feet let me! My rheumi is organising physio and suggested hydro so will look into it. Ta. X

[Hidden]

Welcome to the forum, it is a great place for support, information and fun.

Coming to terms with the diagnosis can be difficult, especially if you have people around you that do not understand. Learning to do things differently is the part I find hardest and do tend to push myself more than maybe I should, but life goes on and you will find your way of coping for you.

Hope to see you around the forum

[Hidden in reply to Hidden]

Hi. I also do more than I should then suffer for it. Reading the tips and advice on this forum has been very helpful though.

[Hidden in reply to Hidden]

Totally agree with that, I have learnt so much from the folk on here and have made some lovely friends

[Matrix]

I have had Fibro for over forty years and its a grieving time for those of you who are newly diagnosed .This will pass once you get your head around it .Just look at the things you can do ,don't focus on the negative that will do no good.

Just say ,right I have this ,its not going away what can I do .Take up a new hobby one you can pick up and put down when its a bad day .I remember back ,I was 12years old when I started with the pains .It was horrendous sometimes and I managed to have 3lovely children .When I look back I see how far I have come .One day you will too .x

[Hidden in reply to Matrix]

Thanks for advice.x

[Reykua]

Hi md55,

This forum is the absolutely best thing about having Fibro. It helps you to keep things in perspective when it all gets too much, as you said, you can have a good giggle - especially when you see the pic of the day and some of the other interesting posts that members put up.

As good as this all is, you can't help but feel that someone somewhere is Not telling the TRUTH about this condition because I still don't know why we're no closer to finding some sort of cure after all these years. I know I've only been diagnosed in the last four years but I was told the condition WAS NOT PROGRESSIVE but hey, guess what, it turns out it is, IT REALLY IS!!!

Everything you need is here, information about the condition, experienced members who've seen and experienced it all as well as news and updates on research, findings and other linked conditions such as IBS.

Glad you're here - it's great being part of this very large family. My enduring hope and wish is that a 'cure' will soon be found as many of us are losing the best years of our lives. My motto is; FIGHT THE FIBRO!!

Best wishes going forward and do post again soon.

[Hidden in reply to Reykua]

Hi Reykua.

Yes I've found the forum full of good advice and useful tips. I'm defo hoping to fight for my mobility and sanity for as long as poss.

[Fibroman]

Fibro is not progressive. 11 years and its pretty much stayed the same.

It was worse in the beginning because you worry and stress amplifies the condition. If anything it becomes easier to live with over time. You get better pain relief and have a better understanding of the condition.

We are all getting older and along with Fibro we may develop other conditions which will also add to your pain. Back issues or arthritis for example.

They cant cure you so just accept you will have to live with it.

As one Doctor told me its all in my head. Which is so true.

[Matrix]

Mine did not stay the same and I have it for over forty years . It has progressed and so have the other things IBS and all the other things that attach to fibro. It's not the same for everyone , some people have only a few of the tense points I have all 18'of them . I'm happy that you have stayed in the same way . I do agree coping with it is very hard in the start and I still have regular bad flares and they are the pits but now I know that with the right meds in place that after a couple of days the pain will ease .

[solowheelie]

My fibro has definitely been progressive I was diagnosed 16yrs ago and have been in a wheelchair duto it which enabled me to keep working, until 4yrs ago when my body very clearly said "no". Not working enables me to make sure I have sufficient rest whilst still doing the things I want to do.

[Hidden in reply to solowheelie]

Hi. I think some there's been some mix up as to who posted what. I didn't post about fibro not bring progressive. Don't have enough experience or knowledge of it yet. Just pleased to be getting supportive advice on forum as recently felt overwhelmed by symptoms.

[solowheelie]

sorry I was just commenting on the stream of people saying it is not progressive - for some it is and others its not x

[Hidden in reply to solowheelie]

Oh I get it! Soz this is first time I've been on a site so not sure what am doing half the time! Not very computer literate and don't do Facebook/twitter only email--just! Will get there eventually.x