I just wanted to ask if this is just the Fibromyalgia progressing or if it could be something else that they are missing?

Hi, I’ve just want to say  👋 to everyone ☺️

 

I was hoping for some advice/support… sorry it’s a long one!

 

I was diagnosed with Fibromyalgia 12 years ago, I am pretty sure giving birth to my last child caused it to start at is was very physically traumatic.

I was on gabapentin, max dose for around 5-6 years, but it actually stopped helping me and so it was stopped. I’ve recently gone back to the GP and I am now on Prgabalin (low dose to start, although it’s not doing a thing).

 

The last 2-3 years the fatigue has got so bad that I can’t do more than a couple of hours work at my job before needing to rest (very to make it just 20-30 mins, but can be anything upto a couple of hours.

 

Bloods are all fine and I’m having a sleep studio rule out any sleep apnea or other disturbances as I have had non restorative sleep for around 20 years now and quite frankly I’ve getting to the end of the road with this.

 

I also have other progressive things going on, which I have made my doctor aware of, like, can’t walk very far anymore before my legs are so painful, achy and fatigued I have to stop, can’t bear having anything weighty touching me feet or knees while sleeping, headaches, face pain, dizziness and PEM. I’ve also had a wrey neck for some considerable years too, which goes into spasm and I can’t move it, which no physio etc has helped. I suspect I also have ME but open to the doctor’s investigations.

 

My job is flexible working and only 2 days a week in the office, they are very understanding.

 

The thing is, I am struggling to do my job, I’ve done it for nearly 26 years yet I can’t remember legislation or specifications (I am needing to look it up constantly). I forget what I am working on despite putting it in my diary and post it notes.

 

I am very worried that work will ‘find out’ and I’ll be out of a job. I am a single mum of 3 and this would be devastating as I just wouldn’t manage financially.

 

I’ve been quite strong and carried on through things for a long time, but with everything that’s going on at the moment I feel very tearful and frustrated. I have considered PIP so I can drop some hours but I’m not convinced it will help as it doesn’t seem to matter how much rest I get.

 

I go to a PA for 30 mins twice a week to keep my muscles and bones moving (nothing too strenuous, just functional stuff). I don’t eat processed things and otherwise have a healthy lifestyle.

 

I feel very alone with all this as nobody has any idea how much pain I am in or how unwell I feel at the moment 😢

 

I guess I just wanted to ask if this is just the Fibromyalgia progressing or if it could be something else that they are missing?

 

I do pace myself as I’ve learnt to do that, but even that at the moment is flooring me 🤷‍♀️

 

Any other advice/tips or just support is very welcome. Thank you xx