Hi everyone, I’m Paul. I live in the UK and I have Fibromyalgia. This is Ravyn’s Doll, and she’s pictured with me and my cat Arthur who is also a great caregiver. He knows when I’m not great and stays by my side or on my lap to make sure I’m ok. (I’m not too sure what he’d do if he needed to do anything but it’s the thought that counts right?)
My story and photos.
Fibromyalgia affects my life on a daily basis. It’s not just the the constant chronic widespread pain, it’s all the other things that come with it too. The chronic fatigue can often be worse than the pain itself. The lack of focus and concentration and the fog that leaves you unable to grasp known words, to forget what you were talking about mid sentence and putting the cereal box in the refrigerator and the milk in the cupboard.
When asked “How are you?”
Most fibromites will say “I’m fine, thank you!”
What I’d like people that don’t have fibromyalgia or other chronic, visible and invisible illnesses to know is that ‘I’m fine” generally means – I’m in a great amount of pain as I am most days. The medication, my tolerance to pain and my positive attitude allows me to get through the day. At this moment in time, although the pain is high and would normally bring any other well person to their knees screaming for an ambulance, I’m able to tolerate it at present. But thank you for asking!
Unfortunately people would get sick of hearing the same thing day in day out. Imagine having to live it rather than just hearing about it.
Fibromyalgia is the hardest when pain levels are too high to cope with and even morphine doesn’t take it all away. Add to that immense fatigue and any sleep that you might get is generally non-restorative. When everything is at its worst and you’re in a fibro-flare, that’s when it’s the hardest.
The things that help me cope with fibromyalgia are; The medications.
Having a positive attitude.
Having good friends.
Having a good support network.
The thing I’d most like to change in the medical field regarding fibromyalgia is the process, the length of time to get an actual diagnosis. Either your doctor or yourself may suggest you have fibromyalgia. Everyone knows what tests are to be carried out. To look for other things it might be and if everything else is ruled out then it’s likely you have fibromyalgia. So why does it take years to have these tests done? Why can’t they be done at once? Why can’t you have the scans and X-rays done there and then?
Why aren’t you referred to a rheumatologist straightaway?
All these questions need to be answered and acted on. If fibromyalgia is suspected the do everything you need to do to prove it. Please don’t have us trying this medication and that medication and waiting five years to say I’ve been treating you for fibromyalgia but the rheumatologist is the one to diagnose it! So now you have to wait another six months to see the rheumatologist that will most likely do what the GP did for the last five years. Delay. Postpone. Whatever it seems they need to do to look like something is happening. Surely it would be much more cost effective to diagnose and treat ASAP that to assume its one thing for several years when it could be another. Wasting money on the incorrect medication and damaging your body too.
Being a caregiver is a very difficult task at times. Particularly if the caregiver is a loved one, a family member or partner/spouse. Fibromyalgia doesn’t just affect the person that has it, it affects everyone in their life too. There isn’t much support in the way of online support groups for caregivers. They may not feel your pain but the hurt can be felt.
I myself created several Facebook support groups and pages for people with chronic and invisible illnesses. I co-run several and admin in many others. I like to think I can share what I’ve found has helped me with pain and coping skills etc. I love helping others as it can make such a difference to them. It also is helpful for me too. Doing all this keeps me distracted from pain, depression and anxiety. That’s just a bonus side effect and not the reason I do it. I do it because I care, because I want to help and because that’s just who I am.