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RSD/CRPS

Brain & Nervous System | Last Active: Sep 25 9:25pm | Replies (121)

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@rivermaya34

@plakermike88 Unfortunately, I can personally understand the widespread extent of your pain. My Drs explained to me that, often times, some type of trauma can trigger, or "jump start" the pain. The condition is there already in a dormant state, but sometimes (not always, every case is different) it gets suddenly put into motion, like at the start of a race when the sound is given. If that makes sense...I'll use my own life as an example here. Now, mind you, I have layers of conditions and symptoms that sometimes can be hard to distinguish from each other, but...I started noticing changes to my health/body in 2015. Initially, it was all subtle and I paid little to no attention to the signs because they weren't directly interfering yet. The next year, I got into a very bad car accident (a miracle I was spared, truly) and soon after that I started experiencing a plethora of symptoms that seemed to go from 0 to 10+ all at once, or so it seemed (perception, right?) Anyways, in 2018 everything changed again and went off the charts. In 2019, I had 4 surgeries in the span of 6 months that have left me physically devastated and worse than going into it all, but had I not, I can't even imagine that I'd still have any function. I had a major complication with one of my elbow surgeries, and developed a blood clot the size of a tennis ball (literally, no exaggeration, half of it was visible) and it ended up being covered in a massive infection. I woke up with a drain, and to this day I still have terrible post-operative pain in that arm and it feels like the drain is still there. Now, I have pain that makes me physically nauseous in both my arms and legs (not as severe there yet), no feeling in my limbs and not much strength left. And, I have to keep my arms compressed and covered at all times, or else the flow of air or any movement might make me vomit. I can't even touch my own arms in the shower or hold anything in my arms that touches my elbows. I can't rest my arm on the windowsil of my truck or on the arm of my couch. Laying my bed, my arms must be above my head. I have to keep a therapeutic level of Gaba in my system at all times just to be able to function, and sometimes that doesn't even touch my pain. But if I don't, it'll be a helluva lot worse! So, I'm very thankful. I say all this not to present a sob story or gain pity, but to offer hope and encouragement. I was a competitive athlete all my life til this stuff hit and even then, I fought the decrease in activities. But now, I have embraced a new way of life and I'm thankful that God slowed me down. He knew best about what I needed. Even though the days are hard and I can't do everything like I used to, or some things at all, I truly believe these things are a gift and a privilege to endure. Not everyone is strong enough to handle these things, but some are. With help, of course. And, if I wasn't experiencing such high levels of pain, then my pride could have taken hold or who knows what would have happened. How could I help and encourage other people if I wasn't wearing a similar pair of shoes? See, I have a whole new outlook on life and a deeper level of gratitude and appreciation for life itself and the people inside my circle. Though they may not understand, they are my support team. They are as long as I allow them to be, and I have to guide them along, just as they have to help me along many times, physically and emotionally. Those moments when you feel like you've been "put on the shelf" or sidelined, be grateful. For whatever reason, your body may need those moments to recover. Enjoy the breaks, even if only for a moment. Sometimes you have to keep the focus self-centered, and this is one of those times, when it comes to your health. When someone tells you that you're "not doing enough", depending on how receptive they are, remind them that your normal is not theirs. Your par is not theirs. You are now functioning at a different level and pace, and that is totally OK. Gently assure them that your body just needs a break or "can't do it" in that moment. I often get those notions too, because I am "too young for that." Well, there is no rule book and not one moment of my life has been textbook, according to society's standards, thus far. And that's the beauty of our lives being so individual and unique! If you are too discouraged in the moment to say anything back to them, just take a quiet moment to reflect and let your emotions settle. They will, I promise. Sometimes that might mean you physically have to get up and walk away, or say, "I can't have this conversation with you right now." And, as long as you are being totally respectful towards them, there is nothing they can do or say back that should rattle you. Remember, as long as you err on the side of humility, you will stay the higher ground. Keep doing what you mentioned above, that is, protecting your body and having a plan. Don't let anyone alter that. There will be ups and downs on this ride, so take each one as it comes and remember the moments are fleeting, they will not last forever! Everyday is brand new, and each hour has its own set of "unknowns." I pray you will find encouragement here, and remember you've got lots of people on your side, even if it doesn't always feel that way. No one is doing this thing called "life" alone. 🙂 Sending wishes for pain-free days and joy!

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Replies to "@plakermike88 Unfortunately, I can personally understand the widespread extent of your pain. My Drs explained to..."

Hi,@rivermaya34, I wanted to say thank you for your time. You gave me a lot to think about, and my doctor saying the same thing. I have been keeping notes from my doctor for years (WOW, it's been a long time), and I went back to look at some of them and there it was. What you said rang a bell in my head, "slow down, take your time and don't push it too much." . He been saying that to me for years, I was just too stubborn to listen. I started to map out a plan for me and it is not as easy as it sounds, but I am trying. So anyway, I just wanted to let people know that you can do it, all you have to do is keep moving forward. There's a light at the end of every tunnel, some tunnel are longer than others, but there's a light. Thank you for listening and have a wonderful pain free day.