Coming to terms with having Fibro

Afternoon and hello all. Need some advice and guidance if possible on embracing the new me for what I can do.

In February 2023 I was diagnosed with Fibromyalgia, after 3years of hospital trips for tests etc, I am finding it very tough to comes to terms with this and that I feel like I have gone from a fit man doing 6hrs of gardening/manual work to now hardly being able to do 20 mins of sit down gardening due to shortness of breath and exhaustion. I have constant pain all over, mainly lower back and groin, fatigue/brain fog and have the smallest bladder it would seem.

On the plus side I'm still working, (going part time soon) and have a very supportive partner with 3 lovely dogs and a cat.

[Welshcatlady]

Welcome to our group, I'm sure you will find we're a friendly lot. Having read your post I'm a bit concerned about your comment regarding your 'small' bladder, have you had it checked out by your GP as I don't think it would be Fibromyalgia related, and neither would your shortness of breath. I'm not medically trained but just saying from experience. The other issues I can relate to and it's they're a nuisance if nothing more! I hope you don't mind me saying about talking to your GP.

[Diy2]

Hi, l suffered the symptoms of fibromyalgia eg: pain in back, arms, neck & severe cluster headaches for 8 years before finally being diagnosed with it. To be honest l had never heard of it until my doctor hinted that it could be fibro during lockdown. On one hand l was glad that l finally knew what it was but on the other being told that it was for life was a blow. I spiralled into a full on downer, my mind into overdrive . I was going to end up in a wheelchair, would l be able to work ? , won't go to any functions etc etc. Having a good doctor helps and a great family support. After 2 failed attempts with medication & perseverance l am now on 60mg of duloxetine. I was told yoga was good for me so l gave that a go & it is the best thing l have ever done. Only 10 mins a few times a week at home. I have also had 10 weekly sessions with a therapist that specialises in pain management using your mind. It has been so so beneficial. I am back working 3 full days a week now , on my feet 8 hours a day. Don't get me wrong l have flares that knock me off my feet but l have an amazing boss & work colleagues that understand my health problem. I hope that my story gives you a bit of hope & l wish you all the best .😊

[Leeannet]

Hi Hidden, Yeah it is the new you, you sound like a positive person which will help. I would get the dr to look into your needing the toilet more and shortness of breath.

I was diagnosed about 20 years ago and given amitripiline and co codamel . With all meds I had side effects and came off amitripiline because of heart palpitations.

I have found trying to stay active, talking pain killers when I absolutely need them and working part time. I had counselling and did a course with versus arthritis . I rest everyday even when I don’t need to and listen to meditation. I do need to push myself quite a lot but you got to stay positive.

Get in touch with versus arthritis, they do courses on line or face to face which are free.

I work 10 hours a week my work place is very good as I am off work quite a lot. I also do pain management class with occupational health which has helped. Waiting on an access to work appointment for a chair to see if that’ll help.

I hope this has helped. Take care 😊

[SarahJaneW]

Hi, so pleased to hear you have a supportive partner, it’s helps so much doesn’t it. I can’t help but feel so guilty all the time though. I was planning on stepping my game and moving up within my career so that my husband could cut his hours. However, this has all changed in the last few months as I’ve had to cut down to working 30 hours a week.

I suppose we just have to keep doing what we can when we can!

Take caee

[hazelcats in reply to SarahJaneW]

I agree, we do need to try to stay positive but thats hard sometimes. Best thing I found was to try to accept living with fibromyalgia ( and chronic fatigue syndrome, and inflammatory arthritis!) If I try to 'fight it' then I waste precious energy.Definitely need to learn to listen to your body and try not to push yourself too hard. Rest often.

Be kind to yourself - learn to enjoy the things you can do rather than the things you cannot do. And dont get me wrong thats not easy all the time.

Having a loving supportive partner helps so much - but I totally understand the feelings of guilt when we feel we are letting our partners down. Thats very hard for me.

And come on a forum like this if you are having a bad day! Whilst not everyone we know understands how hard it can be, anyone here with fibromyalgia does, and can help support one another.

I hope everyone is having the best day they can

[Yassytina FMA UK Volunteer]

Hello and welcome, glad you have a supportive partner. Having pets is rewarding as well as they bring such happiness. Glad you are going part/time soon as hopefully you can pace yourself more, as for the gardening I’m in the same boat , when I can I get too do a small task and have too rest, grrrrrr having Fibro /Cfs has slowed me up ,I keep trying though, I’m glad it’s going too warm up as warmth does encourage me too go outside I agree just speak too your doctor about the bladder for a piece of mind , I hope you find the forum helpful .

[Pcan]

Hi, sorry you've had a such a hard time. My experience of fibro for nearly 2 years ( but more bouts of it b4 that) . its great thatyou have great support from yr partner, I have also appreciated hubby n people so much more since it all began... I wld say read the fibro survivor guide on fibro action uk which was helpful to me to have some control over things, accepting where I'm at but realising things can improve as you try different things that help like pacing myself, trying docs medication they prescribe, routine And trying to appreciate n live in the moment, warm swims n saunas if u can, getting pain relief, trusting that things/ pain can change. Relationships may change but some for the better. Different new slow hobbies rather than strenuous ones. .. anyway always more to say but I'll stop there. Also, some meds can make you pee a lot if yr on any, just a thought.