Well, we all know pain is not a new feeling, experience or event for me. So here I am again. But, this time it's a little different, I can't raise my arms and my shoulders and neck hurt to even touch. I wondered if it was because of the TENS unit or Methotrexate withdrawal, but I searched information on these subjects and neither of them had contraindications. The closest I came to my question was that the TENS can cause muscle soreness if used all day or too long the same day. However, it should not cause pain to this extent. TENS should feel soothing, even in its muscle soreness; it should be a "good" soreness, like after working out and getting in a hot tub. I understand that with the EDS my response to any treatment will be different, apparently, even the response I have to "soothing" treatments. Sheesh!
I called the pain management clinic to get trigger point injections as they had said. After all, I can't use medication so I figured they could get me right in. Nope. The soonest they could get me in....17 days!!!!!!! I have pain NOW!!! In 17 days I'll be in AGONY!!! I will have gone to the ER! Not to mention I'll be in recovery from surgery so I may not even be able to make that appointment. Surgery + Agony from Muscle Pain - Pain Medication = I don't even want to think about it!!!! Really??? 17 days is the earliest you can get me in??? You're a pain clinic!!!
I decided to put in a call to the Orthopedic Surgeon and go the route I did not want to go...Prednisone. Yes, it's THAT BAD! The Physical Therapist had spoken to him about the cervical instability and radiating shoulder so the doc had a heads up. He said the doc said to just to call and he'd call a prescription for the prednisone and/or get me in to see him. I let the nurse know that I couldn't raise my arms and that it was painful to touch. I also let them know about the trigger point injections (maybe he'll do them?) and that the pain management center couldn't see me for 17 days. However, my biggest worry? That C-3 has gotten worse since it was already starting to bulge. Problems in C-3 and C-8 present as muscle and weakness in shoulder and neck area. It is not unusually for vertebrae above and below fused vertebrae to become herniated as they have to compensate in flexibility for the fused vertebrae that are no longer as flexible. In EDS this is exacerbated even more, especially in those with hypermobility of the spine (like me) because the spine is supposed to be even more flexible.
It feels as if one thing gets fixed, or at least it seems as if I'm getting a step-up on things, another thing breaks. I recently explained it better as feeling like I'm in a hamster wheel. I'm running, spinning, putting forth all this effort and getting nowhere. I'm exhausted! Of course, I'm not literally in a hamster wheel, that would be silly! What I mean is, it may be time to get off the wheel and accept that Prednisone is not my enemy. It may allow me to live with little (or no) pain, do physical therapy, do pilates, go grocery store.. in other words live a semi-normal life. But I admit, I'm scared, terrified, about the weight gain. People are so judgmental! I can never go back to Puerto Rico, talk about judgemental people, where the first thing out of people's mouths is: "you used to be so pretty, what happened to you? too much ice cream?" They have no idea: 3 surgeries in 7 months and many more looming in my future, a minimum pain level of 5 everyday. But, can I blame them when I judge myself so harshly? It's hard for me to look in the mirror and remember the girl that looked back used to be a size 0, then she turned into a size 14, and sometimes she becomes a size 16 if she's been on prednisone for a month (did you notice that I went from 1st person to 3rd person?). It's hard and sad for me, because being on prednisone means there's no chance I'll ever get back there again. And those people for Puerto Rico are right, she used to be so beautiful.
As always, leaning on faith to lead me down the right path. Trusting that God, Doctor of doctors, will lead my doctors down the right path towards my healing. Believing that the Universe has conspired for my greatest good. Listening for answers...
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