Fibro Baggage (#fibromyalgia)

I was going to post last night, but the mother of all headaches arrived at 4pm. I left work after 6 and just wanted to switch my head off. It then got me thinking about all the other junk that comes with fibromyalgia. It got me thinking about all the various specialists I’ve seen. Then it made me realise how so disjointed they all are, I don’t feel they do this on purpose, I just know that they don’t fully understand that fibromyalgia is more than what it’s described as.

I attended the chronic pain service and they focused on pain.
I attended the dental clinic and they focused on my dry mouth and TMD.
I attended dermatology and they focused on my prurigo, dry skin and adult acne.
I attended the optician and they focused on my dry eyes and blurred vision.
I attended neurology and they focused on my neuropathic pain.
I attended the lymphodema clinic and they focused on the swelling in my left arm and hand.
I attended orthopaedics and they focused on my bone scan which showed ostopenia.
I’ve attended various other complementary places and continue to see my GP for my prescriptions. I also found out by pure luck that I was severely lacking in Vitamin D.

Despite all this, which kinda looks a bit desperate, not one of them communicated with each other, not one of them asked about the other people I’d seen. They made no references or even considered linking them together. When it came to treatment they were all considered individually. This meant that when it came to suggesting management ideas there wasn’t a hope in hell they were going to work the same way as just treating one symptom or condition.

This was the point where I knew there were no services that could support and help me. I’ve not bothered seeing anyone other than my GP for a while now. My symptoms bother me a great deal, artificially supported by medication, pain patches, ice packs and Mindfulness. I accept that that is the way it is, but it doesn’t mean I accept it should be this way. The one biggest problem in medical care today is communication and yet we have pretty much instant communication technologies.

There are no answers to fibromyalgia, I know that, but it’s very odd to try and help someone with this condition if you deal with all the symptoms separately and it makes me feel a time waster.

No wonder this condition is so isolating.


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