When the weather becomes colder and damper, for a reason I, nor any doctor, can explain, the symptoms get worse.
No need to walk to cause pain, so, my pain management technique of not walking much to keep pain levels down, is not useful. From morning till evening, the right leg and arm burn, sometimes, its feels like someone has put spikes in both sides of my right leg, and the blood flow slows leaving the sensation of the leg asleep at the very right side of the right leg.
These are the symptoms I try to keep at bay while trying to focus myself on working. I have an exhibit coming up, and I am glad that I planned the walk through sooner rather than later as stress can bring on the worst symptoms. I use meditation and faith thinking to beat back a panic as the right arm spasms with shooting pain, and numbness and swelling on the edge of my right arm increases Then, I have to remind myself to let it be o.k. when I can’t work, to not add frustration upon stress.
I push back to retain my center base of strength: faith, love, forgiveness, service. As the real change in my life rears its head again, I find myself wandering back to the cause of this change. I am pulling myself out of that form of thinking, and at the same time, increasing my courage to write to people who can help change policy for CPRS patients. To share my experience so that, hopefully, – and granting its an imperfect world – we can try to still make things better – without anger, with respect, of course, but also letting people know what happens when one is diagnosed with CPRS.
Since patients are not the ones making the diagnosis, its important that doctors begin to understand what happens when they do. My doctors told me the day I was diagnosed not to read the literature on the internet because I would become too afraid and they felt this injury would resolve. I listened to them because I did not want to hear bad things, I trusted I would get better.
When the pain came on so badly, I became afraid.
At night, when I tried to stop myself from howling like a bear in pain to not wake those in the house, I sought out information because I was terrified, what was this thing in my body that was causing so much pain? I didn’t pour over information, instead, like a whiz of a microfiche slider, my mind kept settling down on “spontaneous healing” – that is exactly where I was headed I told myself. I don’t need to read the rest.
When the symptoms hit my leg, and the resulting unbearable pain in walking, I became terrified beyond belief, what was happening to me? I could not get an earlier appointment, so I turned to the internet again. I read that this disease traveled and the symptoms I had were those commonly experienced. But, that was the web, and not a doctor, so I went to my doctor. She said the internet was wrong. I said I had not just been reading patients experiences, but, reputable CPRS organizations and studies in respectable journals. I mean, hey, I know how to do research. I asked to see a specialist in CPRS. I never did get to see that specialist. There was never any doubt or dispute of having CPRS in my arm, just in my leg. Still, I was never seen by a CPRS specialist, even though I asked, and, when I continued to ask, I was ushered into a pain specialist who asked whether I had filed a lawsuit, who then, without talking to me or asking me anything or even answering a question said, ‘you don’t have CPRS.’ Apparently, she was the doctor to ‘ban’ me. Oh, and I was told to take a prescription from her from a year prior.
O.k. What do I have then, and what are you testing for? MRI, Bone Density of bones unrelated to the areas affected, i.e. not my arm and leg, but, my pelvic bone? Vit. D. Vitamin D is causing this? Every time my GP said we could not look at CPRS any longer as a possible cause, I was told it was “political.’ I demanded to know what that meant, and why, if I potentially had CPRS given we had searched every possible cause besides CPRS for two years, was I not being seen by neurology and pain management? That’s when I asked for a new written diagnosis, and I was told in the letter, that I had been ‘banned.’ In my last appointment, my GP pretty much said the whole place was ‘off-limits.’ Great. Lovely.
When pain is highest, I often have a hard time eating because of the nausea. Soups and liquids often help. My weight goes up and down 10 pounds between each cycle of pain. I have recently switched to eating as much organic food as I can. I was already on that road, which is why my GP said there wasn’t much else to change, but now, I find, my stomach reacts differently to foods, like…heck no!
One trick I found to be a life-saver – especially in those moments the nausea takes over to the degree that I am dizzy – is HONEY! Yes, honey. I can’t tell you how grateful I am to this golden elixir. Truthfully. I knew all the various miraculous benefits of honey and bee pollen, for so many purposes. Yet, wow, now I really understand.
So, enough soapbox for today – Tip: Take a tablespoon of honey as needed for nausea. Try it and let me know the results.
This site is a site for people like me who have complex medical issues in which the medical field is still in the research phase itself or for people who do not have access to health care and need a different way. I do believe together patients and the medical field can be great partners.