Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Archive for the ‘March 2015’ Category

The Beast Rears It’s Head…

and I don’t mean Beauty and the Beast style. This Beast of mine, is not going to transform into my Disney fairytale prince charming. Sitting in the Drs office earlier this afternoon, the Dr uttered words I had hoped I would never hear again. Complex Regional Pain Syndrome. The newest diagnosis to my add to my growing list, but not new to me. I have battled and conquered this hideous beast before. It took months and months in hospital. I never thought I would have to deal with this condition again. Last time it was in my leg. Now it is in my shoulder.

Emotionally I am numb, exhausted I know from the little sleep I have got due to pain. Part of me wants to draw the curtains, grab a pillow and just cry. But what good would that do me? It wouldn’t fix me, it wouldn’t take the physical pain away. I made the mistake last time round of avoiding everything that inflicted more pain, such as trousers (I lived in shorts), I couldn’t bear bed sheets, etc, anything touching me was agony. By avoiding touch I made the condition worse. I’m forcing myself to lie down on my back, to wear clothes that hurt, to put my handbag on shoulder even if only for a moment. By doing these things repeatedly hopefully my brain will relearn, again, that all is well.

The Dr went through my meds and was a bit stumped, as medication that he would have put me on to try to treat the condition, such as Gabapentin, I  am already on the maximum dose of. We therefore agreed to trial Sertraline on the lowest dose. It may or may not work, but I’ll try anything right now.

In the meantime I’m going to close my eyes, and breath. Things could be worse after all. I defeated this beast once before, and I’ll defeat it once more.

 

 

 

 

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Word Search

I’m the sort of person that words come easily to, whether that’s verbally or written. I may pause to search for a word once in a while if my brain fog is bad, but normally I’ll pluck another out to replace it. It’s an unusual scenario when I feel so completely stumped and unable to find one to suit my needs. Yet for the past week that’s exactly how I have felt. I’ve tested every word I can think of, yet none quite fit. Which makes trying to describe the situation I’m in now difficult.

When I saw my neurologist last Wednesday, he decided to add Botox injections to my shoulder to see if this would help control my twitches. This has helped beyond my wildest imagination. At first the pain that followed I put down to my body reacting to the injections, after all I do experience similar pain in my neck each time I get my injections. However unlike my neck, the pain has not improved, even lying down at night is painful. Consequently sleep is almost non-existent . Carrying things, anything touching my shoulder is extremely uncomfortable. I don’t feel like pain is the right descriptive word however, though it most definitively applys the majority of the time, I don’t know how to verbalize the sensation that I am experiencing. It is so uncomfortable and is setting my teeth on edge as it is constant. Hopefully it will ease off soon.

On a more positive note I have attached below the photo below that I promised of me standing.

Positive Neurology Appointment

Today I had my six weekly appointment with my Neurologist in London. As usual he was charming himself. He never fails to listen, which is a breath of fresh air after the experience I often receive at the hands of various other medical professionals. As many of you will know, recently my twitches have been worsening. This has been impacting on my day-to-day life. Some days I struggle just to dress myself and I worry about whether I will hit someone in the street or knock products over in a shop. These factors don’t stop me from going about my life, but they do prove to be rather big hurdles though, as I really would rather not apologise for twitching and hitting someone.

I explained this to my neurologist. Honestly I was expecting, at best, for him to up one of my many medications or add yet another one in to the cocktail. He surprised me however by offering to inject my shoulder to see if this helped bring me some relief. This was a treatment I had debated asking for, but I had wanted to listen to his suggestions first. After all, he’s kept my twitches fairly well controlled for the past two years. He injected my shoulder muscles three times, which in the moment didn’t bother me too much, but I am really feeling it now! I am keeping my fingers crossed that hopefully this will do the trick.

As usual he advised me not to over do it. I can’t help but laugh. I try to take this on board, I really do. Dystonia already holds me back so much though, I don’t plan on taking the easy option. Even if that would mean less pain. I would rather grasp every opportunity that life throw at me and live every second to the full.

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