Newly diagnosed: I was diagnosed... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Newly diagnosed

vickylou01
vickylou01

I was diagnosed officially Wednesday and feel a sense of relief and dread. At least I know why I am having all these symptoms but worried about the future and what it is going to mean in terms of work/family/life.

10 Replies
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Can empathise with the feeling of relief once the answer for the symptoms is given. A lot to get your head around, some time trying to absorb where that puts you now before setting out on the future which can not be known with any degree of certainty for any case.

One positive of the diagnosis is you are not alone your now part of an understanding supportive community.

clare_hart
clare_hart in reply to Ian123

No degree of certainty is so true. But you are not alone as Ian says. You can get understanding and information here.

So here is my opinion of what you might do and what you can expect. But just my opinion; pleanty more input to come!

Just let yourself go through those phases of grief if you need to, then help your family and friends understand fibro as you are learning about it yourself.

FM affects all of us in verying degrees and with a myriad of symptoms There are ways to cope and treat and you will probably have "good and great days," where you wonder if you really have fibro. Don't worry, if you overextend youself, the next day you'll know you have it!

So never overdo it. Don't give in to others who want you to push yourself beyond your limit. It is just a matter of finding your own limits.

Well, that's enough out of me for now. You WILL find your way and members of this forum will help you along and they'll keep you smiling as they do.

Just take it one day at a time and accept that life will be different but can still be full and enjoyable. The most important thing (in my opinion) is pacing.

Thank you so much for your replies. Although my symptoms started 2 years ago initially with what was diagnosed as carpal tunnel and then migraines and trapped nerves in my thoracic outlet it is only in since April that what i now know as a full flare of fibromyalgia has come crashing down on me. Every week I seem to gain a new symptoms. Ive gone from being a energetic owrking mum and wife to being hit with fatigue and pain like nothing I have ever experienced (at least after child birth I had something wonderful at the end of it!). I feel so terrible that I can't do all then things I was doing with my 5 year old 6 months ago. I used to take him to forests with his bike and walk for hours/miles now ome days it hurts too much to walk up the stairs - I want the old me back!

I have been very confused in my diagnosis as my Rheumatologist told me that the majority of patients with fibromyalgia recover and the patients you meet in the self help groups are the unfortunate ones that don't. I have read a lot of papers on fibromyalgia and everyone says there is no cure/that it is a life long disease. I hope this flare will end and I can have life as close to normality as possible again. How long can a flare last? I am being referred for a course for people with fibromyalgia but have no idea what to expect?

I am currently taking dosulepin (for the past 6 years) and my Rheumatologist said this is the best of the neuro meds so will not prescribe any other medication as suggest that others either don't work or only work for a short time and will not prescribe any stronger painkillers (already prescribed naproxen as I have urticarial vasculitis) as they do not work. I feel like I am now stuck with little way forward.

Hi vickylou01

I sincerely hope that you are feeling as well as you possibly can be today? It is wonderful to make your acquaintance and I genuinely hope that you find the forum useful, informative and loads of fun!

As with all things in life, we are all unique individuals and therefore we all react differently to both our illness and our medications. So it is impossible to say how things will go for you on this front? It is always useful however, to keep your GP and / or Medical Specialist up to date with how you are feeling both pain wise and emotionally and let them know if your medications are not working for you as there are plenty of others that you could try?

I have pasted you a link to our mother site FibroAction which has loads of useful Fibro information.

fibroaction.org

I want to wish you all the best of luck and I genuinely look forward to bumping into you around the forum.

All my hopes and dreams for you

Ken x

Welcome to the forum. I was only diagnosed at the ends of August and still finding my feet really. It sounds like your rheumatologist us trying to helo you. Mine just said you have fibro and thanks for coming. No follow up care. I feel I've been left in the dark but this forum helps and people make his suggestions.

Interesting you've been refers for a course. Can you tell us what area of the UK you live in as I'm interested in whether my Dr can refer me for such a course if your aren't s millions miles away.?

Sorry for the waffle. Be rest assured life does change and I am the same as you. Six months ago u was doing 6-8 now hikes thenI June I was don't a walk and my hips gave up. I haven't done a long Walk since as my hips hurt too much. Even though life changes you can change with it. Choosing different activities that give you pleasure instead I'd what you used to do but remember to pace yourself. If I see for too long it triggers my symptoms it do anything for too long. The key is to figure it what is your too long. I still figuring out my limits.

Let us know about your course I'd be interested to hear how it goes.

Chin up and keep going. Life will be Ok. Xxx

Sorry lots of spelling mistakesin that but I hope you get the gistfof it. Blooming auto spell

Hidden
Hidden

Hi and welcome to the forum.

I have been diagnoseddiagnosed for just over a year and asks the same question as you :) The answer is simple and very true. Each and every one of us is different and what works for one may nor work for another. You nay be one of the lucky ones and it will go away or you may not. I am trying to tailor my life as to how I feel each day. Some days are really good and some not so. Pacing yourself us something I find difficult to do, but I definitely know that I am unable to do what I did before. Life is still good and who knows, maybe I will be on a of those lucky people. :)

Now you know what you have, arm yourself with information and enjoy you life :)

I hope we see you about the forum as there are a lot of fun and knowledgeable people about :)

Big hugs for now :)

I know the feeling I got diagnosed a week ago. But what is helping me is getting a good network of support and talking about how I feel. Ive also got an appointment on monday for couciling so im hooing that is going to help. Ive had alot of advice and good tips off the guys on here. Together we can get through it. It is nice to meet you just shame it was not better circumstances.

Warm soft hugs. Xxx

Thank you all, yes I am very grateful to my Rheumatologist as before him no-one had mentioned fibromyalgia and I had never heard of it before. If he hadn't have accepted my referral I could have been without a diagnosis for years longer.

I guess like us it must be frustrating for the physicians as there is so little in terms of medication that can been offered that works. Hopefully there will be more research into fibromyalgia to make this possible.

I live in Surrey, when I find out where the course is I will let you know.

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