Help!

[Kellyybearr]

Hi, I am new here. I am 28 years old and have had my diagnosis of Fibro for about a year now and I am still struggling to come to terms with it. I still don’t feel my Fibro is well controlled and I am struggling with getting to grips with not being the strong, independent woman I once was! Any tips with dealing with this on a daily basis would be great and also how people get around working as I love to work but I am struggling to function enough to even manage a long stint in the office at the minute! Thanks in advance.

[YASMINTINA FMA UK Volunteer]

healthunlocked.com/fibromya..., Hello and welcome, it is hard to adjust life with this condition, I wish there was a button I could press and take me back to the days before fibro to be the same w0man I was before but unfortunately working with fibro and not pushing as hard as before is the key, pacing yourself if possible as much as you can but holding down a job must be extra hard , do you work partime/full, either way it is harder doing this with fibro, we are still strong in our minds as we find ways to keep going forward and every day can be different and challenging. You will read lots of helpful posts here , members experiences , tips and advice. Xx

[Kellyybearr in reply to YASMINTINA]

Hi, I reduced my hours from full time (5 days) to part time (4 days) when I was diagnosed. I don’t really feel I’ve had much control over my fibro and my flare ups seem so frequent. I’ve yet again been just signed off for 2 weeks to rest and I just feel like the condition is slowly taking everything from me!

[YASMINTINA FMA UK Volunteer in reply to Kellyybearr]

Yes totally get it , I tend to go day to day and sometimes even looking forward to an invite it literally can be on the morning if you go or not. I still plan in my head what I am going to do and sometime it’s nice to tick that box and another day I go too get up and fibro/cfs wins so total rest ,glad you are having time out, please don’t feel quilty about what you can and cannot do, I am teaching myself gradually that life has changed and not too over think things( well most of the time) I won’t lie and say I don’t get cross/frustrated that the conditions take away what I can achieve but I know that won’t get me anywhere. Like nursegladys has said it is hard looking back or standing on the sidelines more but if you can pace yourself more it does tend to help, some lovely people here to chat with and genuinely know what it’s like .

[Hidden]

Hui hun- pacing is the issue with fibro, slowing down is very hard when you have had an active life, as Strictly starts up again I get doom n gloom as I used to teach people to dance twice a week and then hold a friday night social dance. I can only sit there and watch now and shout at the judges for being so mean to beginers, I do put my very comfy Equity dance shoes on whilst I watch--just a bit of madness . Workplace- you need to reduce working hours, speak to your g.p to get this started , you can apply for ESA help and PIP to supplement your income.. if you find yourself going down this road lots of help and a great advisor on here called Janet to help,. stay with us nice people on here and we sometimes have a giggle with each other,.

[YASMINTINA FMA UK Volunteer in reply to Hidden]

I miss just dancing , loved nothing more than a boogie but now Im out of breath in seconds and it hurts (i still try a few moves with the young grandboys but that does not last long) yes looking forward to watching strictly, not a lover of Craig but enjoys playing the villain.

[RayB]

Kellyybearr,

Welcome along and listen to NurseGladys123 and YASMINTINA.

From experiance, you push things,,your repaid with a flare. Learning to manage things is key which also means learning to stand up for yourself and being able to say NO and not having to repeat yourself with out a big stick in your hand!

I preach the three stresses!

Mental the one that everybody and their wife knows about.

Physical the one that your just learning about.

Systemic the one that your yet to think off.

This is everything that goes into your body,,everything you breath,, getting enough fluids, getting regular rest, eating undigestable things,,, like gluten,,, eating at inappropiate times,,, digesting while you should be resting is not resting it's working while lieing down,, in fact the list is endless.

Ray

[Sarah-Jane]

Hi, I found that I grieved for my old self for about a year so don’t be hard on yourself hunni. May I suggest getting the book Fibromyalgia for Dummies? It helped me a lot and helped with people who said it was not real. Medication is talked about too.

It helps to change your mindset whenever you can. Any negative thoughts are counter productive and will only pull you down. Try ‘well at least I have done that ‘ for anything you can no longer do. I miss dancing too, but with pacing and getting medication right, the right mindset too, life will seem less bleak.

I am now a Reiki Practitioner and although it took a long time, things are a lot better.

Use all the equipment you need to, being stubborn only hurts you and it allows you to do more in the long run.

If you are in the UK, get the mobility allowance. The higher one allows you to have a car or scooter. But you have a lot of paperwork too. Get a good friend to help. Tell them absolutely everything. Every inch of pain and what you can’t do on your worst day!

Come back here for further help. Big hugs xx