Hello fans and those who have supported through thick and thin!
This weekend, my daughter, who has a number of dragons 🐉 that she fights including CRPS, ran a chip-timed race and PR’ed (post diagnosis) by 4 minutes! That’s a very big deal because she used to a university athlete before CRPS and there are no known elite athletes to return to play post-diagnosis. It’s nice to win one once in a while. That also means our protocol is working so far.
Second, I am finally coming out of my flare (after two months) and was able to run .80 miles + .28 miles (I walked a tenth of a mile in between) on Saturday in some new “zero drop” shoes (Altra Rivera) that have made a big difference in my balance ability. I had originally set my goals at the beginning of the year to walk a 5k for Shamrock ☘️ and Run the Hop Hop listed above as a virtual. Because of my flare, I couldn’t even walk the Shamrock last month. So,🤞🏼🤞🏼I’ll be able to do 5K in the next two weeks to make my goal. Gosh, it felt so good to run even just a little bit. I’ve been doing it for 44 years. To not do it is torture!🤯
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DRunnerchick
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Thank you so much! I am so proud of all her hard work. She has run 493 days in a row. She has struggled to add mileage but she gets out there every. single. day. 🌧☀️❄️🌬🌤🌈D🏃🏽♀️
So good to hear of someone coming out of a flare. I've been stuck in one since Feb triggered by a vaccine (not covid).Do you know what triggered yours? When you are on a flare it feels like it will never end. That's how I'm feeling now anyway.
I’ll see if I can post a pic here after I complete my race. Although, I’m not sure why you want to see a picture of a pudgy old, slow woman in stretchy pants.👳🏻♀️🐌
HT-Best guess on what triggered my flare is combination of being anemic and having a severe reaction to the Shingrix vaccine in January (I posted about that earlier). For an unknown reason 2 months earlier I was iron deficient and my ferritin was down to 4. It was definitely the vaccine that pushed me over the edge though. Then I had to go off a medication 💊 which increased my neuropathy. Fortunately, I have a Wizard who is attentive and doesn’t let these things stay for long.
That's so interesting that a vaccine caused your flare, it gives me hope that my flare will pass. I'm currently so nauseated I feel seasick just moving. As soon as I'd had the vaccine my appetite just nosedived.
It makes me really nervous about having a covid jab!
it really is so good to hear that you are on the mend.
Shingles vaccines (the previous and the current) are both known to provoke a robust immune reaction. Most people do just fine and have minor discomfort at the injection site etc and a day or two later it’s over. My reaction lasted 3 weeks and triggered a flare that lasted 2 months. I won’t be getting the second one. I’m not so worried about the COVID but I’m also not in a rush to get one since my disease (SPS) is so rare and nobody seems to know what we should do as a whole (recommendations are split), and also, I don’t want to get one until I am fully managed. I’m almost there again.
Besides, our abominable excuse for public rollout of vaccines 💉 has left me out until this week and even now, I haven’t been able to get through the online questionnaire to get to make an appointment. Somehow, it always tells me I am not qualified yet. I’m sure I could lie about being obese or diabetic and jump in the line...instead I am punished for being a “healthy 🦓🦄” but they don’t have questions for that. 🙆♀️🤦🏽♀️🤷♀️
Thanks Stiff! I appreciate my “fan club” here. Really, I’m the least likely to be out there about stuff but I am VERY about giving credit where credit is due. I could not keep moving forward without all you fine people here, yourself included.
I do notice certain blips on the radar after runs, training or otherwise. I will have to keep good notes and decipher later. I just notice I am been back to taking naps again, and still having an uptick in spasms over the last couple of days. I’ve added magnesium glycinate to perhaps help without having to increase the baclofen. Not all magnesium supplements are created equal. Most are junk and don’t even contain what they say (can only speak for U.S.) because supplements are an unregulated industry and what is thrown into them is the cheapest form and sometimes your body can’t even absorb it. So, education...then trial and error...then education of the medics.🤷♀️
That’s nice but it’s just the wheel going full circle ⭕️, I feel the same yourself included 🙏
Pleased you are keeping on track with notes, I try to but few blips, I have a few questions for dermy next time. Yes I often wonder on some of the supplements, as you say there can be a question mark overhanging.
The trick to supplements is making sure they are certified by a third party laboratory. In the U.S., if you see the GMP certification (Good Manufacturing Practices) you can be assured it has met all guidelines for potency, quality, purity etc as labeled. GMP has under its umbrella NSF (anti-doping, thereby guaranteeing clean sport), NPA, and USP laboratories. All of these are voluntary testing and costs on the part of the manufacturing party. I’m sure there is something similar elsewhere but am not familiar.
It is sad that they don’t have to list things like fillers or coloring in so many instances. This is a bugaboo of mine related to generic medicines that are manufactured by different companies. As long as they have the active compound, they figure it should be okay. But, for 🦓 like some of us, it can have dire consequences. How many of you have had you tablets changed? The name is the same but the results sure aren’t.
Consumer Labs, LLC isn’t actually a lab. It is a watchdog group as you state and conducts testing on health related products through a third party laboratory. The corporate structure is run by mainly physician educated/biochemistry professionals. They refuse products from manufacturers and only take them from retail sources to ensure accurate results.
I just thought I would expound with a bit more info for those wanting to know about CL. They finance their operations mainly through subscriptions.
Thanks for posting such good news drunnerchick. Gives us all hope and heart. Like mother like daughter then!. It must have felt wonderful for you both. Do hope there will be many more. Keep safe and well. Xx
Thank you 😊! I’m running my 5K this week. It will be more of a run/walk, but hopefully I can complete the distance without breaking myself 👍🏻. I’m really trying to keep my cardiovascular 🫀 system in good working order for as long as I can. I’m not going down without a fight 💪🏽👊🤛🏼
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Has anyone else had flare up due to winter weather?
Agh, back to back posts! Will ad an update to this one after I get my CT results 
Kidding Myself
Finally been to a specialist 
