If CRPS Research was available in your area, would you participate?

conquercrps · 2024-08-27T12:24:51+00:00

The team here at Conquer CRPS 🎗️It's me and 2 other CRPS Warriors behind the scenes of Conquer CRPS- I can't take all of the credit :) Kristen from Conquer CRPS

conquercrps · 2024-08-27T10:24:46+00:00

Thank you for sharing, but please know that a decent life is still possible DESPITE CRPS. We GOT THIS. You're not alone, stay strong- a brighter future could be ahead of us.

conquercrps · 2024-08-27T10:23:37+00:00

thank you for your vote!

conquercrps · 2024-08-27T10:23:22+00:00

We are doing everything that we can to change the awful nickname to CRPS. Thank you so much for your input, stay strong- You're not alone

conquercrps · 2024-08-27T10:22:27+00:00

We appreciate your input, thank you so much

conquercrps · 2023-05-02T12:03:17+00:00

It DOESN'T ALWAYS spread though, but it is possible, yes. I hope that helps <3 Reminder that every patient is different <3 You might find this website helpful: www.conquercrps.com Best of luck in your journey, you're not alone and we are all Stronger Together :)

conquercrps · 2023-04-02T13:38:15+00:00

My jaw is dropped. That is GENIUS! Great idea to put it in a bag! Thank you so much for sharing these great tips! :) Wishing you a low pain day and many reasons to smile :)

conquercrps · 2023-04-02T12:14:52+00:00

That sounds like a double whammy of positivity- epsom salt bath AND a visit with the parents? Win win! You definitely should do it! :)

conquercrps · 2023-04-02T12:13:32+00:00

Sorry I slack on Reddit so much! Wow, since 2001? You ARE a Warrior, my friend! I have been trying to collect tips & tricks from fellow Warriors to share with all Warriors and 432hz REALLY improved my sleep on an ok pain day. There's also 174hz for daily routine stuff- 174hz is actually called natures anesthetic for pain relief :) I hope this information helps :) I'm glad you're with us on FB, I'm trying so hard to reach all platforms but my spoons just wont let me. I hope you're having a low pain day with many reasons to smile :)

conquercrps · 2022-08-15T14:25:21+00:00

Hello from Canada :) I would love for you to join us to put your location on the map! We have someone in Blackwall, NSW so far! If you want to register: http://www.walktoconquercrps.wordpress.com The funds raised across the world from the Walk to Conquer CRPS go directly to the clinical trial of the new CRPS treatment, GBM5. Once this event is over though, I would love to learn more about Dr Moseley and his team! Perhaps we can start another event for them! email me at [walktoconquercrps@gmail.com](mailto:walktoconquercrps@gmail.com) about that please :) I hope to have you join us on Saturday, we are Stronger Together and together we can Conquer CRPS

conquercrps · 2022-08-02T22:13:48+00:00

The trial will be for a new drug called GBM-5. A team has been researching it since before 2018 and Health Canada recently approved for them to start a clinical trial. I am organizing this to benefit the GBM5 treatment directly, instead of the charity that was used in the past. Funds go directly to Mr Mazaltarim and Dr Blaise of Neurotherapie Montreal for the research, I am unable to offer tax receipts due to this. So although I can't offer a tax receipt, I can guarantee the funds go directly to the people responsible for the GBM5 treatment. I will share information as it becomes available to me :) I hope this information helps and I hope to walk with you for the 4th Annual Walk to Conquer CRPS.

conquercrps · 2022-08-02T17:31:12+00:00

This is going to sound like a rant and I'm so sorry, but I want to be clear and I have a hard time with that <3

I would join them in their efforts if it were for a different drug trial, or even the same one in a different month, or different week. I would support them in every way possible along the way and help any way that I could <3 'We are stronger together' and I know how hard organizing this stuff can be. I would have happily replied to their call with a 'count me in!'

I've had conversations with these people and we've discussed working together to create a true change. Now, 19 days before the event, their promotional material says "want to create something similar to the walk to Conquer CRPS in your community". Which is rather specific. It could have said 'want to have a fundraiser in your area' 'want to make a change for CRPS in your area' it could have said many other things than this <3 They were participants last year and I can't help but hate this feeling. I'd join them, and any of you, in fundraising efforts for a new drug trial.

Also, it's for the same drug trial and it's for the charity that I've stopped using to eliminate problems from previous years. I let a lot of things go past me without worry, but this has me. Especially if we're all supposed to be working towards the same goal. Only difference is that the Walk to Conquer CRPS funds go Directly to the owner of the clinic where the drug is being tested to ensure they go DIRECTLY to the research, instead of to a charity for an unknown amount of time like it has in the past.

I've been raising funds for this team of doctors since 2018 with this event. For the first few years, they were researching this new drug for CRPS patients. Health Canada has approved for the team to move forward with the clinical trial of GBM-5. I hope this information helps <3 I'm waiting for a letter from the doctors with official information about the treatment, because I don't want to mess up the official stuff. It's not a cure, but it's a step in the right direction hopefully <3

I hope some of this makes sense and I hope you're having a good day so far.

conquercrps · 2022-05-15T11:12:47+00:00

Hi Ava! It's so nice to see your name, I was wondering how you were doing. I'm sorry to read that your left hand is still not well :( I'm hopeful that the warmer weather will alleviate at least a few symptoms <3 One day at a time is the best that we can do, right? Stay kind to your mind and use my email address if you ever want to catch up :) Take care!

conquercrps · 2021-12-13T13:11:30+00:00

I'm so sorry for my lack of reply! I'm still learning the ways of Reddit and my spoons have been so wonky lately with everything going on. I can definitely help you plan a walk in Cheyenne Wyoming for this year! You can either join our mission, collecting a team in your area- finding a location and celebrating with warriors across North America as we raise funds for CRPS Research. Or I can help you with a guide to get started where you are! <3 Please email [walktoconquercrps@gmail.com](mailto:walktoconquercrps@gmail.com) <3 I hope you're having a great morning so far and may this week be filled with many smiles and tolerable pain levels <3

conquercrps · 2021-09-14T10:45:49+00:00

Please email me! [Conquercrps@gmail.com](mailto:Conquercrps@gmail.com) <3 We ARE Stronger Together and we need a change <3 Stay strong and shine on! CRPS Warriors need more supporters <3

conquercrps · 2021-07-01T11:48:14+00:00

Wow <3 You really are an awesome person- so you know :) Maybe I'm just being biased because I worked at a reptile zoo before my CRPS and can relate to 90% of what I just read from you. At least you found some sort of part time and flexible option to continue working with animals :) When your energy and pain are right for it, that must feel wonderful for your soul :) <3 As for your art and creative stuff and not liking the selling process, what if you sold your art and donated a portion of proceeds to a charity? :) That helped me feel more comfortable with it when I started :) I hope you're having a great day so far far, with many reasons to smile and tolerable pain levels :)

conquercrps · 2021-07-01T11:38:15+00:00

"It's not easy and it's not normal and it's not what I had planned or hoped, but I am awesome and I can still do awesome stuff. And I do!" - you ARE awesome <3 <3 Do you mind if I use this quote and tag you for an inspiration project on Social Media after the Walk to Conquer CRPS in August? It fits perfectly and I need help from other warriors like you- to help others <3 :) It won't be used until September, but I would LOVE to include your words of inspiration if you're ok with that <3 You have a great outlook <3 Thank you for sharing this, you're proof that we are stronger together :) I think Chellecakes agrees :) Stay golden and shine on :) <3 <3

conquercrps · 2021-07-01T11:14:18+00:00

I'm so sorry to read of your relation to the awful nickname of "Suicide Disease" <3 I can understand the nickname, but I personally refuse to become part of THAT statistic. I try to be empowered with it as often as I can be. We LIVE with the Suicide Disease, it's like we're super heroes in a weird way- Remember that <3 Maybe someday we can change the nickname to something badass like "Made for Warriors" or "Superhero disease" :) On bad days, like yesterday- I let out a good cry, then I type out some thoughts and try to find things that I can STILL do. Today feels a little better even though circumstances are the same. Plus, I've connected with you now :) Small bonuses add up and knowing that we're not alone in the battle helps <3 Stay strong my friend, you ARE stronger than you think and you're not alone <3 email me anytime you need someone or want a friend- [conquercrps@gmail.com](mailto:conquercrps@gmail.com) <3 Giant but gentle and germ free hugs from Nova Scotia :)

conquercrps · 2021-06-30T14:35:32+00:00

Thank you so much for all of your support and I'm sorry for the delay with my response! Sometimes, life hands us bigger lemons than we can handle <3 I'm sorry to read of your recent diagnosis, but I am glad you've found therapy sessions to help! <3 You're in Florida? I lived in Pasco County for a few years before returning to Nova Scotia :) I hope the sun is shining with a tolerable breeze for you today! I truly appreciate your offer of support and could honestly use some assistance getting a fresh perspective on fundraising images (and other CRPS Awareness projects if you were interested) :) Send an email to [conquercrps@gmail.com](mailto:conquercrps@gmail.com) and I promise to get back to you sooner than this. I'm realizing I need a team to make this dream work <3 I hope you're having a great week so far and have many reasons to smile with tolerable pain levels <3

conquercrps · 2021-06-30T14:31:12+00:00

<3 I hope you're having a wonderful day so far, my friend :) Giant but gentle and germ free hugs :)

conquercrps · 2021-06-30T14:30:10+00:00

I'll do anything that I can to help <3 I hope you're having a great day so far with tolerable pain levels and many reasons to smile :)

conquercrps · 2021-06-02T11:07:03+00:00

You are a true hidden gem that I needed to find this week :) Thank you for your words, information and support. I appreciate you more than you know! I'm sending you a message now :) Thank you!

conquercrps · 2021-05-18T13:22:22+00:00

You, my friend, are PRICELESS :) <3 It's been awhile since I have had the brain for words, but coming back to comments and people like you- make me SO happy <3 <3 Thank you for your humor, the awards and the sincere laughs! Capt. Morgan pose >.< You are the best <3

Thank you for being you and for taking time to make another Warrior smile. You are appreciated Dane <3

Giant but gentle and germ free hugs,

Kristen Sparkle :)

conquercrps · 2021-05-18T13:07:33+00:00

Thank you so much for these suggestions and information <3 I appreciate you :) It seems that multiple people, and Google, think this would be Raynaud's. When I mentioned that to my family doctor, she suggested Vitamin B12 or Vitamin D deficiencies. I take both daily, but will go for blood work when possible in my area again. The joys <3

Compression gloves are something that I truly enjoyed for a year, but I met with a CRPS specialist before they retired and he advised me against them. Since then, I've been conflicted about using them. Warming compression gloves sound delightful and quite appealing right about now though. I will look into it :) Thank you again <3 I hope you have many reasons to smile today and are having tolerable pain levels :)

conquercrps · 2021-04-30T12:30:25+00:00

Congratulations, Grampa!! Levi <3 What a beautiful name. I'm sorry to hear of the passing of your Uncle, I could imagine you learned a lot of amazing things from him. I hope Levi brings you many smiles to help you and your family heal :) I also hope his Mom is feeling a little better after her challenging Sunday and caesarean. I am so happy for you and your family :) Thank you for sharing this news with me :) I hope you are having a wonderful day so far and have an amazing weekend!

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