Anticlimax

I feel I'm in an anticlimax bubble. I think after fighting so long and hard for answers to finally have something pretty concrete is both amazing and disheartening.
Like the evening of Christmas day, you've waited all of December for this day. When it comes its over quickly and the bump is quite odd.
I'm thrilled to have something I can label myself under, if people ask what is wrong rather than say 'bad back' which 90% of people joke "back oh yeah me too....." Almost belittling your pain. Or I say my foot forgot how to foot. Its fallen out with my brain. I try and make it lighthearted as a) its not morbid or terminal,in the grand scale of things its rather trivial in terms of the medical field. Although its had a huge impact on my life and of those around me. But b) I have to keep it jovial or I'll be sucked in and never feel I can climb that mountain. I'll never conquer it.

I said to the physio yesterday something which summed it up perfectly.
My pain controls me, my pain is managing me and limiting me in what I can and can't do. I avoid certain things like sitting in the cinema watching a film. A huge no no for me currently, going out for a meal, I can't sit comfortably at a table. Or I wont go somewhere as I know I'll hurt and pay for it in the following days.
I said I want to manage my pain, I want to control it.. I need to take back my body. She agreed that summed it up perfectly.
Hence the pain clinic needing to be involved. As she agrees my current pain management isnt working and my gp hasn't followed through on the Neurologist report in regards to upping my amitriptyline from the current 10mg to 100mg a day. yeah not a small increase, a large one yet gp won't sanction it!
I'm going to write gp a letter just outlining the above from my physio, I dont need to see her face to face for this. Its a waste of her time, an appointment slot and means I sit for up to an hour on uncomfortable chairs in the waiting room.
My gp is never ever on time. The longest ive waited to go in is 1hr 10 minutes! Infuriating when you've grabbed an appointment between work calls and u are now running late. Plus I dont think I can face talking out loud about all this. In here I can say what I want. If I get upset I can close the page for a bit, walk away or google something funny. In the surgery I'm stuck. The thoughts in my head get louder and I get so anxious.

I also can't fully agree that this functional symptoms'disorder' is what I have.
It doesnt explain the long term symptoms ive had. The flare ups of pins and needles in arms, weakness in the arms brushing hair/teeth. The spongy foot feeling. All this goes back about 6 years give or take.
The back pain has always been there in the background. It only ever really plagued me if I was over doing it. Like a shopping trip round town. Lots of walking as hills (our town high street goes up a v steep hill and is cobbled. Nightmare!) And standing about hurt my spine. The pressure would build as that sharp pinch would almost wind me.

In those 6 years I've seen 3 osteopaths. 2 chiropractor's and the pain clinic man for my knees. All told me to seek referral for ortho team as my backs wrong/causing problems.

CFS or fibromyalgia also fits perfectly. The flare ups, the symptoms.

So I can't decide if I fall into this labelling or continue searching for the correct diagnosis (if this one is indeed incorrect)
Its just all to inconsistent. The letters being different between neurologist and me and neurologist and physio. Being told several different causes and often the we dont really know aspect of things.....

I just want everyone to agree on the same diagnosis, formulate a plan of action and to manage this. As I said earlier I'm not life limited in the time aspect, but I am limited in what I can now do.
This time 2 years ago we did a 14 mile walk for the Royal Marsden Hospital. Counting in the walking to and from the event in London we walked 17 miles according to my fitbit stepometer thingy.
This time almost last year (well June) I drove the 400+ miles to Cornwall and back for a weeks holiday. I walked the headlands, stomped around on the beaches and ran around with my dogs. Less than 3 months later I could hardly move my left leg let alone walk properly.

The more I think in terms of that, the angrier I get with my body and myself. At 34 this isnt the lifestyle I wanted. I miss my job so very much. The interaction with people constantly, the aspect of care tasks, being able to do things for people and not give anything a second thought. I miss the busyness I had. The constant on the go element. From 6am til I finished work at 10pm. Now my brain and body just rots doing nothing. Eurgh.

So on that gloomy moany note, I'm going to have a doze. Yesterday has caused a lot of pain in hips and thighs. My legs shake like a wobbly jelly and mum was shocked at the state of them. My back is also killing. So I didnt sleep well at all as I couldn't get comfortable. So the usual black and dark circles I have under my eyes to the last few months have grown larger and more noticeable. I look like a extra in a Tim Burton film!!! :')

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