Just diagnosed: hello, my name is... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just diagnosed

sara80 profile image
6 Replies

hello,

my name is sara. I'm 32 and I just got diagnosed with fibromyalgia, my GP gave me an information sheet on it, and I've read most of the things on the website, but i'm still really confused. I suppose its nice to know what I have, but the dr wasn't hopeful about me getting well again. is this true, a lot of the stuff on the website seems to say you can get better. im going to talk to him about some of the drugs. do they work?

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sara80 profile image
sara80
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6 Replies

Umm don't want to depress you but fibro is not curable ... But it can be manageable. You will read lots of claims about miracle cures but it's the same as wrinkles .... They appear however many facelifts you have.

Pain management is the key... Finding what works for you be it meds and gentle exercise but there will be flare ups and bad days I have had fibro since I was 25 am now 47 and until arthritis hit me four years ago my fibro was controlled by the occasional tablet on bad days ... Very rare and exercise helped... I was cycling swimming and doing yoga until 4 years ago..... Loss of mobility has made my fibro much worse ..... Not that I am suggesting you rush out and enrol at a gym or run yourself into the ground. We are all different with good and bad times you may find out that your fibro will settle down and you can get by with few meds and keeping as active as you can.... If it does hit you hard and fast just know however bad a day seems come on here and rant ...... We all do at times.... I have been off here for a few days with bad flare up. Am in the middle of stopping old tablets and trying osteopath. That has helped but I have an appt next week with my dr to see if they can provide me with better pain relief. It's not an easy thing to be diagnosed with and when it hits hard you do grieve for the old you but support groups like this one are a great help and if there is a group in real life near you that might be a good thing

Take care Helen x

julieevh profile image
julieevh

I was diagnosed with Fibro a couple of weeks ago (on top of a load of other things sadly) and have found this group to be a real lifeline

Julie xx

Hello and welcome Sara, great to have you here! I was diagnosed with Fibromyalgia almost 4 years ago now. It takes a while to get used to the idea, but it's not all bad. We have good days and not so good days. It is possible still to have a good life, be reasonably active. Each case tends to be different. Some people manage better than others.

It is possible to feel better, this does happen to some people. However, once you have been diagnosed with Fibromyalgia you have the condition and it can evolve with some people or stay quite consistent with others. Some become more active, some don't. That's it in a nutshell. The secret is really to get medications that help you manage your pain and to pace yourself, don't overdo it, so you don't get too exhausted, because then it can become a bit of a battle. By pacing yourself with regular rest periods, you will still hopefully be able to be quite active and enjoy your life.

There are so many medications, it would be impossible to list them all here. It's a bit trial and error at the beginning as your GP or Consultant has to try to find a balance between managing your pain and not making you too tired for example. If you take a look at some of our tags, which are listed on the right or at the top, there is lots of info on Fibro, meds etc. Please bear in mind that we are all different and can react differently to different meds, what works for one person doesn't necessarily work so well for someone else. It is possible to manage your pain well and your fatigue too.

It does feel a bit mind boggling at the beginning, but you will benefit greatly from being part of our forum. There is a wealth of info on here and experiences from members. You will also find everyone friendly and supportive which is worth its weight in gold. We are all in the same boat, we all understand.

If you have any questions or you don't understand anything, please feel free to ask at any time. We are always happy to help and support you wherever we are able to. If you prefer to private message you can do that to.

Take care and see you around the forum! :D

(Please complete your Profile as it helps us get to know you better. We are trying to encourage everyone to do this at the moment. Also if you could please read our Guidelines at the top right, we would appreciate this too. Thank you Sara :) )

fibrodave profile image
fibrodave

Hi Sara

You may get well, you may not, I have had this illness for over 8 years, I have tried all the medications, been for hydrotherapy, physiotherapy, CBT, reiki, pilates, relaxation therapy and lots of other stuff to numerous to mention, unfortunately I am still suffering with Fibromyalgia. It is very confusing because you will look well but inside you will feel pain, lots of pain this will come anywhere in your body, it may be all over you from your head to toe's. or it may just be in the form of a very bad headache that wont shift for days. My advice is to pace yourself, do a little bit of activity then rest do some more activity then rest again, recognise the word NO, and use it as often as possible especially when someone wants you to go the extra mile, finally, smile as often as possible. Hope this has helped, Fibrodave

hi and welcome

as many of us on this sight are awair fms is not curable but it can disapear for a while and for some people they can have normal lifes .. not having any major symptoms ..

Medication can be a bit hit and miss as what works for one does not work for others ... However this web page can be great and welcome

dont dispair I have a Job and 4 kids so i manage . sometimes better than others its learning like many things how and what is best for you

you will learn new skills and ways of doing things and i hope

gentle dyslexic hugs

ingart profile image
ingart

Hi Sara

I Aquired fibro when I was 35 in 1992. It was extremely sever and took about 3 years to get diagnosed at that time. It was also a very grey area in the UK at that time with many doctors and DHS. After about 4 years I started to improve a llittle but still with good and bad phases & days and went once a week to an art group. As the years went by I improved sufficient to do a degree in art - it wasn't easy. I have always had pain , aches ,brain fog,throughout the years but it is mainly learning your limitations and self -management and finding the right medications that work for you. Stress will increase or bring on a bad phase. Since 2012 I've had a lot of stress and again back to an extremely severe phase. along with liver disease and cervical spondylosis & nerve impingement. At your worst just try to remember Sara to have hope - your life will improve eventually and can still be very worthwhile- don't get wound up about the housework and above all look after yourself because only you know the real pain your in.My heart goes out to you .

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