Fibromyalgia Update - #1

 

 

It's feels like forever since I have spoken about my fibro so I thought I'd do a little post to let you all know how I'm getting on.

 

 

I am "managing" my pain most days. When I say managing, I mean pushing through it and not crying and making a scene when in reality all I want to do is scream it out, curl up in my duvet and sleep for the next 12 months.
As for the depression side of Fibro, I've been having a tough time keeping it together. My head is constantly spinning. Accepting to live with a disability is much harder than I thought it ever would be. Thankfully I have a great network of people to help me through these dark times.

 

 

My medication still seems to be doing nothing for me. I've given up on paracetamol/ibuprofen during the day as when I'm in pain it barely touches the sides and because I don't want my body to become resistant to it, just in case I may need it for other reasons in the future.

I choose to take a dose of all my mediation before I go to bed as there's nothing worse than being tired and not being able to sleep due to the pain.

 

 

After much consideration, I applied for PIP. For those who don't know what PIP is, in brief it's a benefit for disabled people (and it's extremely difficult to get).

It's a long and draining process. It involves a fairly long telephone call to get the ball rolling, filling out a very long questionnaire and finally an hour long face to face assessment with a medical assessor. All of these stages have weeks in-between.

 

After reading and hearing about other people's stories, I was 100% sure I wouldn't be awarded it. The PIP process is extremely flawed and is unfair in so many ways. Thankfully I was awarded standard mobility and care. My report was still filled with lies and contradicting information however I was so drained by the process I didn't chose to get a reconsideration which could lead me to lose what I'd been granted.

 

From start to finish, I waited 17 weeks to be awarded my PIP.

 

 

I have now finished my course of Physiotherapy. I started physio back in around April time and had a session every 5-6 weeks So I actually only had around 5 sessions in total.

Did it help? Not really. I felt like I was wasting everybody's time by the 3rd/4th appointment.

Although my physio therapist was lovely and wanted to do the best for me, there were only so many stretches and exercises she could give me. Some exercises felt as though I was strengthening muscles for a while however when I hit a bad pain day/week, I went straight back to the weakness I had before.

 

She has now referred me to do a disability type course with a personal trainer at my local gym. It's completely free for 6 months so I might as well give it a try. The worst that can happen is that the exercises don't help me at all, but I won't have lost out on anything.
The main idea behind it is to keep me moving. With Fibro, if you stop moving and using your body, you end up stiffening up and muscle starts to wear down over time.

 

 

 

That's all for this update. I plan on doing another when I've started the personal training to let you all know how that's going. I'll also update if there's any other big news or changes.