Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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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Comments on: "The Beast Rears It’s Head…" (5)

  1. samcharvey said:

    You will! We can. Be strong my lovely girl xx

  2. This is beautifully written Rebecca. And you are, as always, inspiring.

  3. You are such an insipration!! Keep going Beca!!! I am sure that you can do this and your journey will encourage others that are in a similar situation. xx

  4. You’re being so brave…! Just to say that specialists are allowed to prescribe above the “normal” limits reported in the British National Formulary (provided they can justify it), so there may be scope for you to have higher doses of, for example, gabapentin.

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