Hoping for some tips or advice

[Angiewigy]

Hi my name is Angie

I have been struggling to control my fibromyalgia in the last few years and have come on here mainly to find any tips or advise to help myself lead a life that even vaguely resembles what I used to have

[Dizzytwo Moderator]

Hello Angie, let me wish you a very warm welcome to our group.

We have a wonderful group who are always happy to share what works for them and what doesn't.

There are many members and thousands of topics and helpful posts based on personal experiences. Hopefully you may find something you find helpful to you.

May I give you the heads up on locking your posts for privacy reasons . If you wish to lock your post this link will show you how.

healthunlocked.com/fibromya...

Also locked posts tend to get more replies xx

Momo

[saluhouse]

Hello Angiewigy. Welcome to the club nobody wanted to join. We are all a bit bewildered as to how we ended up with this diagnosis.

But stay calm. There is a lot you can do to help yourself. Keep reading the posts - the experts on here will point you in the right direction - whether it is medication/diet/pacing/stretching.

And should you need advice on claiming benefits or adapting your workplace - somebody on here knows how to go about it.

All I can say at this point is - stay as positive as you can. You might not get back to your old life but you can cobble together a new life that you will appreciate. And you will have lots of new friends who will be cheering you on.

Best wishes xxx

[Angiewigy in reply to saluhouse]

Thank you so much x

[Hidden]

One of the best things i can recommend is a decent bed with real quality cotton bedding not poly cotton you will find a better nights sleep and feel better

[WWFboys22]

Hiya I also have the same condition and like you life has changed a lot but for me pacing life and routine are the best thing for me so if I do say food shopping i then rest the rest of the day try not to do to much when you have days that feel better as sometimes this can catch up on us xx I try to go to bed not overly late as late nights seem to play havoc. I don’t think there is an easy answer I have had to reduce work hours and just waiting to hear back from work for retirement through I’ll health as I cannot do what I used to xx and most of all and the hardest thing really keep yourself as positive as ya can which is not easy some days but positive thinking comforts your mental health xx

[LoneEra]

Hi Angie. What are you struggling with most? The pain? The fatigue? The fibro fog? Or all of it? And are you on any medications? Sorry for all the questions but it will help me answer better x

[Angiewigy in reply to LoneEra]

Hi loneEraAt the moment it’s the frequency of my flare ups it’s playing havoc with work/ life

I constantly feel like I have the aches of flu, I can’t string a sentence together and I’m exhausted all the time

I seem to have a flare up every time I arrange anything nice to do ie. have a weekend break etc

I take Co codemol daily have done for at least 7 years I am also on 200mg of Setraline I’ve just started to take ibuprofen daily as well

To be honest I can’t get any real help off my GP I think they have no idea about the condition

[LoneEra in reply to Angiewigy]

How rubbish for you. It’s the pits when you’re in a constant flare.

It does sound to me like you could do with a medication review. And since your GP has no idea, maybe get an info pack from FMA UK for them. Tagging desquinn here as I hope he can give you the details for that!

As you’re in constant flare territory, I’d start keeping a daily journal of what you’re doing and eating to try to identify potential triggers. So if you notice a pattern of you being really bad after a stressful day, for example, you can then look for ways to minimise stress or learn techniques to cope with it.

I’d also highly recommend activity pacing: painhealth.csse.uwa.edu.au/...

Also, a gentle stretching routine every day can actually make a massive difference (I know that sounds silly but give it a go just for a few days!) Have a look: m.youtube.com/watch?v=fONfo...(Not working as expected?)

Feel free to come back to me if you want to ask more or have different challenges from the ones I’ve addressed xx

[Angiewigy in reply to LoneEra]

Thank you for the advice I shall certainly try your suggestions

[desquinn Partner Volunteer FMAUK Trustee in reply to Angiewigy]

publications can be found at fmauk.org/publications

Thanks LoneEra