I had to do it. I had to start prednisone again. The pain and limited mobility just got to be too much. But, I was given the choice to start it, in fact I had 2 prescriptions: I filled one and had it ready just in case, the other is on hold at the pharmacy and I can fill later if I need it again. Sad but true., I always have one on back-up! The one I had already filled I sometimes carried with me when my pain got to be an "8" on my pain scale. I was tempted to start it many times before today but I resisted as much as I could. I've been holding out for 2 weeks. I really, really did not want to have to take it! Another reason I waited was that my pain varied, it would get really intense several times a day but with the muscle relaxers, rest and ice, would come back down to a "5". However, because I was compensating with the rest of my body for the pain in my shoulder, everything else got affected: biceps, triceps, trapezium, and wrists. I'm having to wear wrist splints so I don't continue injuring them, but when I use them in puts the strain back in my arm and shoulders. I am so exhausted at the end of the day! In the end, EDS won over my will power. I'll be seeing the pain management doc in 1 month exactly and we'll talk about trigger point injections and cervical facet numbing at that time. Right now I need some relief...there are no brownie points for suffering.
I visited the new migraine doctor. He's actually an internist but has a specialty in treating migraines related to Ehlers-Danlos. He recently co-authored a paper on the subject with Dr. Tinkle, who is world-renowned on EDS. The doc, tested and confirmed the seriousness of my postural orthostatic tachycardic syndrome (POTS). He took my blood pressure lying down: 112/88 (I'm pretty sure) and when he stood me up it dropped to 92/66. I was so dizzy I had to hold on to a table and my chest was hurting! He said it was no wonder I was always fatigued and the significant drop put me at risk of passing out, in fact, he was surprised that I haven't passed out yet. I said it happened all the time, even while walking. He prescribe Fluorinef to help retain water (great, as if I weren't already) and raise blood pressure. Guess what Fluorinef is???? Yep, cortisone! Gatorade isn't cutting it, but I told him I noticed the difference when I did and didn't take it; when I take it the auras are not present. This confirmed it for him.
I guess all roads lead to prednisone. Could it be any more obvious? Even the trigger point injections have cortisone in the them. I know there will always be some well wisher or just someone who believes they have found the fountain of youth and cure to all ailments: vegetarians, vegan, organics, hydroponics, vitamins C, B, D, Calcium, Magnesium, Potassium, Fish oil and Omega 3's, CoQ10, ginger, honey, cinnamon, high protein, low carb, no carb....I have been there and I have done that! I still do some, many of these. But, there is no magic bullet. There is no cure. There is management. Part of that management is a healthy lifestyle and that is where these fall. I love my family and friends. I am tired of advice. Please understand, being tired of advice does not make me resistant to being helped. It also does not mean that I do not want to feel better. It means I must be careful with what I put in my body, because even seemingly harmless things can cause devastation. For example, TENS and massage have been harmful, so accupuncture is contraindicated; please do not insist! It also means that if it had any hope of making me feel better, LEGITIMATELY, I would have looked at it, and/or so would my team of doctors. But, please don't stop caring, I still need love :) that doesn't hurt.
As always trusting and listening...
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