I'm struggling

[Jbell22]

I have been really struggling the past few months with growing discomfort from my fibro. For months now I have bees struggling more and more with muscle pain, it generally starts in my left hip and has been getting worse and spreading up and down my entire back. And now my insomnia has started to kick back in and I'm going from feeling exhausted to not being able to fall asleep. I have recently made the decision to go back to college x2 a week and still work full time and people keep telling me you need to cut down. But if I didn't have fibro nobody would think twice. So now I need some advice from people who know what I'm living with. I'm 21 years old and its getting harder for me to manage the pain at this time and I really don't enjoy taking painkillers if I can help it.... I'm not sure what to do?

Any advice?? Or even someone to talk to who understands would be seriously appreciated.

[Painny]

Hi Jbell

I totally get you and understand!

I know someone similar to your age who decided to abandon her first year at university and instead embarked on working part time. Even that one was an ordeal for her!

I agree you may need to cut down your activities and opt for pacing. I know it’s not easy for someone at such young age. I worked for 25 years and still grieve over it as I have years to go before retirement. But if you are doing things at the pace you described you will get worse

Compromise, it’s too late for me, damage has been done as I now realise health is more important than careers and education. I have not slept for 48 hours and my brain is wishy washy

Hope my experience gives you a perspective. All the best

[Dinkie]

Hi Jbell

Perhaps try for a referral to Guys & St Thomas’s fibro clinic if you can get to London. One time appointment to see several specialists from rheumatologists to physio to psychologists they would put together a plan of action addressing all issues. I found them very helpful as my GP was next to useless in understanding fibro. If you go down this route put your request for referral in writing and follow it up with telephone consult, that way it makes your notes whereas a verbal request can be missed off the notes.

In the meantime - Epsom salts in your bath can help with muscle pain. Have you had your vit D levels checked as this can cause muscle aches. Diet for me plays a part so no processed foods or refined sugars.

Gentle exercise - even a stroll down the garden makes a difference to me. Hot water bottles, weighted blankets, tens machines etc all have their uses. I also visit chiropractor and hypnotherapist when funds allow. Some will find Tai Chi, Mindfulness etc help.

Unfortunately it’s very much a trial and error thing to find out what works for you. I worked full time and studied for exams so it is possible but as I got older I did have to reduce my hours in 2017 but my then I was in my late 50s. I just accepted that sometimes, well most times, I had little energy for socialising but that’s not to say the payback of a flare isn’t worth it for something really special 😁

Wish you good luck in finding what works for you.

[Jbell22 in reply to Dinkie]

Thank you, I havent tried the tens machine before but sounds like a good idea . I use hot bean bags regularly for muscle aches as they help. My vit d was checked recently and was borderline but with some low does meds is back to normal . I appreciate the advice

[KateAL]

Hi, I’m really sorry to hear that your struggling but your friends are correct you need to pace yourself and only do what really needs to be done. Rest when you can, if you over do it this will make you Fibromyalgia flare up causing you the pain and other problems. Sending big hugs 🤗