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Fibromyalgia Action UK

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Butterfly785 profile image
8 Replies

Hi everyone I’m new here and kind of new to fibromyalgia and everything I’m 19 and never heard the word before until just after my daughter was born a couple years ago. I first went to the doctor in 2021 for it and went to hospital for x rays and they came back clear but they told my doctor that I had fibromyalgia so the doctors diagnosed me but I did not know that they diagnosed me. I’ve tried everything in the past two years to try and find out what was wrong with me. I went to the doctors more times then I ever have and it was only in the last two weeks that they actually told me it just I had been diagnosed with fibromyalgia 2 years ago but anyways sorry for rambling but I’m just wondering how any of you cope with day to day life and still doing the things you want to do. I’ve got a 2 year old and sometimes it’s hard to manage on my own. Thanks for reading

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Butterfly785 profile image
Butterfly785
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8 Replies
Dizzytwo profile image
Dizzytwo

Good morning and welcome to our group. Its not easy been unwell with a little one. I remember having 2 babies under the age of three and dealing with an unknown illness at the time. It's hard.

I am not sure who said you had fibro 2 years ago. Was it the person who took your x rays? I read your post as it were them that told your GP you had fibro?

The people taking X Rays would not be qualified to tell your GP you had fibro or anything else unrelated to what they see on an X-ray.

We have almost 66,000 posts many if not most ask the same as you. It can be very daunting that's for sure.

May I suggest when you have a few minutes to yourself. (Not easy with a toddler.) that you check out some of the posts and replies. I am sure you will find them very helpful.

If you have a specific question why not try out our search box.

You may also find our main formum of benifit to you it is packed with a great deal of fantastic information 😊

fmauk.org

Momo

Butterfly785 profile image
Butterfly785 in reply toDizzytwo

Hi thanks for replying. Sorry I didn’t mean to confuse you, the person giving the x ray didn’t tell me that I had it. The doctor or consultant (idk what he was my memories quite bad) looked and the X-rays and all my symptoms and said to my gp that there is a high possibility that it is fibromyalgia.

Thankyou so much I will find that helpful

Dizzytwo profile image
Dizzytwo in reply toButterfly785

Thank you for the clarification. I thought that may be the case. But I have learned never to assume anything these days lol

I am not the best person to advise on medications. I do not take any prescription meds myself. I have had fibro for over 40yrs and to be honest the meds on offer for fibro never worked for me.

But that's not the case for everyone. Have you spoken with your GP about what he/she can offer you in the way of pain management?

I found CBT a great help. But again it's not for everyone. And it does depend on who you take your sessions with.

Do you have any family help with your little one that would help you grab a few hours rest.

It is hard been young raising children and having fibro. But it can be done. I think looking back my biggest stumbling block was myself. Just way over thinking things. Worrying about all the what ifs and butts.

I now learn to take one day at a time and just deal with each symptom when and if it raises its ugly head.

And don't be too hard on yourself. I also found working with my fibro rather than fighting it all the time helps. I soon learnt there was only going to be one winner in that contest lol xx

Butterfly785 profile image
Butterfly785 in reply toDizzytwo

I’ve tried a handful of medications so far and none have worked for me but I know there’s a couple more to try. The doctors I’m at are not that helpful to be honest, trying to get an appointment as well is quite hard.

I do have family to help but they’re not around much as they work long hours and are quite busy so I don’t get much help during the week.

Thankyou so much for you advice it’s really helpful!!xxx😊

Dizzytwo profile image
Dizzytwo in reply toButterfly785

Hi, I don't know if your aware but you can self refer for CBT no GP needed. Just google CBT for your area and see if they have any self referrals where you live xx

Ladame profile image
Ladame

Welcome, this group is great for offering support and advice on all things fibromyalgia related. Sorry to hear you've been diagnosed at such a young age. The main thing I've learnt is that you need to pace yourself, which I'm not very good at! If you're having a good day you tend to try and do everything and then wham, next day shattered! Can't be easy with a two year old. Hugs xx

Butterfly785 profile image
Butterfly785 in reply toLadame

Thankyou for replying!

I find it quite hard to pace myself on my good days lol. I’m constantly running around after my daughter or cleaning and definitely pay the price for it the next day xx

Ladame profile image
Ladame

Snap! It's so easy to do! Enjoy your little daughter. We have two granddaughters aged 8 & 6 who are great fun but tiring! 😅

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