Battling Complex Regional Pain Syndrome (CRPS).

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  • เผยแพร่เมื่อ 21 พ.ย. 2024

ความคิดเห็น • 62

  • @yvonnekneeshaw2784
    @yvonnekneeshaw2784 8 หลายเดือนก่อน +3

    This was a huge encouragement to me … possibly have CRPS after ankle fracture … I had never heard of it before. Jeremiah 29:11 🇨🇦 ❤

  • @dadtype2339
    @dadtype2339 3 ปีที่แล้ว +19

    Thank you Molly for your story, I'm glad to know I wasn't the only one who kept telling medical professionals there's something wrong. Back in 2018 I had two jobs on with a pest company and a Firefighter. One day at a big box store a mess of wood feel out and struck my ankle, my foot went numb for a sec but when the feeling returned I couldn't feel the tip of my great toe and pain slowly crept in. I told doctors something isn't right, instead of an MRI I was sent to physical therapy, which later I found out made things worse. At first I was told I had cellulitis which was very painful, but after the infection went away I started to have a burn that just wouldn't go away. At the time I was very active, worked out at the gym 3 times a week, hiked 10 miles with 100lbs of logging chain in a backpack. I'm 6'5" tall weighed 210 muscle I was a stomping tough tree lol, but I kept telling myself I'll get better it will go away, just push through it, as I have a high pain tolerance I thought if I could just ignore it I can still be a Firefighter. I worked so hard and all the training and certification we have to do to be able to be a firefighter is life long really and training and testing never ends. Being a firefighter was my life calling it's the only job I had were I felt whole complete it's where I was meant to be. As time went on I couldn't ignore it the pain is so intense, people can't imagine, I did go to a different pain management doctor who had a great main degrees under is belt and I explained it started in my ankle and it's slowly moving up the calf and back of my knee. He looked me over and touched my leg I jerked back he saw the color swelling the shine of my leg the hair that's missing and ask me some questions did an x-ray and he told me I have a very rare form of CRPS Type 2, rare because mine spreads. He said I'm sorry but it would be a great risk to your life if you went back into a burning house having this in your leg, I can no longer be a firefighter. That was a very dark period in my life, I understand how everything for you went black, I lost everything, had to force retire from the fire department, I did nothing wrong but turning in my gear and cleaning out my locker felt like I was fired for misconduct or something. A shameful feeling. I did after several months and therapy finally accepted it's not my fault, the years I was a firefighter God put me there for that time to help people and I helped a lot of people on their worst day. I got to do things others only dream about I was very lucky, but still I hear the sirens of my engine from the station that's 3 blocks away from my house head out and I know their missing a guy, I pray for their safety. Like a frog who dreamed of being a man to wake up and realize he isn't even a frog! Lol I still have my sense of humor. Speaking things up I was unable to work in 2019, haven't since as I'm disabled. It finally spread to both legs waist down. And it's spreading upwards to where I have pain in my organs I can actually feel my intestines on some days it's shooting it's burn and stabbing pains off and on here and there through my arms face and hands. It's hard for me to walk or even stand long. I now weigh 300 lbs, and that's do to not being able to exercise and the type of pain meds I'm on that slows the metabolism way down. I can eat once a day and be satisfied I actually have very low to no appetite, I know when people look at me and see my shirt that I'm a firefighter as see how big I am and unable to walk well and lol all the sweating pouring off my face they are thinking I just need to exercise, and when I tell them what's wrong they change they're look so I know they were judging me. I keep moving, I even tried the spinal cord stimulator trial but it barely touch the pain. I'm told eventually I'll be in a wheelchair. I no longer fear death, but I have a great family wife kids and support structure that I'll not be another CRPS suicide statistic. It's really a terrible disease, many times I can't even take a shower because the water coming out from the head that hits my legs and body hurts. And the one bathtub we have is a joke when you're 6'5" tall.
    I pray you keep your head up Molly, and I mean that, it could be worse you could have the variant that spreads like me. But I keep going, and if I can, I know you can too! And to anyone who reads this, you are not alone, my prayers do include others who have CRPS, I may not know your name, But God does, I am accepting hugs, just be gentle. Thank you for reading.

    • @jamichanelshyalyx6582
      @jamichanelshyalyx6582 2 ปีที่แล้ว +1

      I’ve also got CRPS-type 2. I have in in all 4 limbs and now in my spine. It’s been a long 8 years for me.

    • @dadtype2339
      @dadtype2339 2 ปีที่แล้ว +1

      @@jamichanelshyalyx6582 thank you for the response, and believe me I'm so sorry to hear it. I've been getting that stab or pin prick in tiny spot random places and once in a blue moon in my hands arms neck and face so I hope mine stops at my legs but it started in just my left foot then those pains began to creep up and over into the other leg and right foot, so believe me when I say I understand, I'll be praying for you, when I'm in my baseline pain levels I call those good days. I get so tired of lying to people when they ask how I am... I'm now honest, "Well, I'm able to leave my bed today, first time in 4 days - a month depending on what I've done or flare ups. Or lol, Well, the pains not too bad today," Or, How am I, well, to say my legs are burning is an understatement and all I want to do is go home and get out of my clothes and lay still on the bed. Going on 4 years for me and it's been tough on my wife. Hard at night when I'm unable to sleep or try to when in pain and she's a bit of a restless sleeper every movement in bed is painful. It's really as I'm sure you know, absolutely a horrid thing to live with. Again my prayers are with you!

    • @ja_lil
      @ja_lil ปีที่แล้ว +1

      Its literally the worst pain imaginable, then I had doctors telling me I was just trying to get pain meds and I was lying. I literary have PTSD from this horrible disease

  • @darrenhardy3751
    @darrenhardy3751 9 หลายเดือนก่อน +1

    thank you for sharing your story as its brought the light into a dark loney place right now..

    • @MylesMatsuno
      @MylesMatsuno  9 หลายเดือนก่อน

      I'm so glad that Molly's story brought some light into a dark place. I hope more light keeps shining through through this. Thank you for sharing.

  • @nataliekhalilrealtor
    @nataliekhalilrealtor 3 ปีที่แล้ว +10

    Molly... thanks for sharing your story. I’m a fellow CRPS er. God bless you. AMEN. You just said what I’ve realized. God brought me back to him and all glory to God and the kingdom

  • @roxastherogue
    @roxastherogue 2 ปีที่แล้ว +6

    I've had it since I was 17. 5 years down the road it's a unbelievable struggle .I Physically becoming weaker each week. I met people who had RSD but I'd really love the time to speak to someone else with crps. I can't even imagine what life is like without constant pain and maintenance. This sounds so much like me and others I couldn't even finish watching it.
    It took them 6 months to find a bone floating around in my ankle. They told me forever I should be walking. Trust the Lord.

  • @davidwright9550
    @davidwright9550 ปีที่แล้ว +2

    Thank you for sharing your story Molly. I was diagnosed yesterday, and my DR said our goal was to get me to the point where I had some quality of life. Going to do all that I can and pray a lot!

  • @Daffodil729
    @Daffodil729 2 ปีที่แล้ว +3

    I am presently dealing with crps after a wrist fracture. I am a 72 yr old lady.
    In 2010 I was in the same situation and doctors told me that there was no cure. I refused to accept that and though it took many months I slowly recovered. Proof that with belief and determination anything is possible. Back to the present- my hand and fingers are frozen and off the scale painful. Don't get me wrong- I have felt despair and depressed, but I have full belief that I will recover . I honestly wish that for you- don't give up hope.

    • @MylesMatsuno
      @MylesMatsuno  2 ปีที่แล้ว

      Thanks for you sharing, your support and kind words for Molly 🙏🏼

  • @whitneymatsuno3460
    @whitneymatsuno3460 3 ปีที่แล้ว +8

    Thank you for telling your story, Molly. You are an amazing person. I can’t imagine the pain you endure everyday. Myles - thank you for capturing this story, telling it so beautifully, and putting awareness out there.

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว

      You're welcome! Grateful to tell Molly's story 🙏🏽

  • @yayascreations
    @yayascreations 2 ปีที่แล้ว +3

    I was just very recently diagnosed with CRPS, after undergoing ankle fusion surgery! This knocked me on my butt, out of my mind and in so much constant pain. I’ve found a great team of pain management doctors, physical therapists and behavioral health specialist that I feel confident that I will get at least some relief. 🤞
    Thank you for sharing your story!

    • @MylesMatsuno
      @MylesMatsuno  2 ปีที่แล้ว +1

      Thanks for sharing your story as well. I'm glad have found a team that you feel comfortable with!

  • @martvic21
    @martvic21 4 ปีที่แล้ว +5

    Cant help the tears watching these >_

    • @MylesMatsuno
      @MylesMatsuno  4 ปีที่แล้ว

      Thanks, man! I appreciate you for watching them and always encouraging me!

  • @vichagen4781
    @vichagen4781 3 ปีที่แล้ว +4

    Have been battling RND, a form of CRPS since 2015. The level of pain across my whole body is agonizing. I hate my new limitations, but received quite a bit of relief by balancing life and medical marijuana. It opened my life to more freedom and despite still having a lot physical challenges, I'm making it through college with accommodations. When you get a chronic illness everything changes and slows down, but I know I'll still find a way to live a fulfilling life.

  • @flynnfriend
    @flynnfriend 4 ปีที่แล้ว +4

    Very touching and inspirational, and also beautifully put together. Great work.

  • @3lfruler
    @3lfruler 11 หลายเดือนก่อน +1

    "every plan I had for my life was just done."
    So true and so painful.
    At 26 i had a failed radiofrequency ablation, resulting in crps. It's been three and a half years and it's just getting worse. I know a lot of the time disease comes around at some point in life. but I wish I could have gone through my twenties ans thirty's.

    • @MylesMatsuno
      @MylesMatsuno  11 หลายเดือนก่อน

      Thank you for your comment and sharing some of your heartfelt story.

  • @rondacooper1043
    @rondacooper1043 4 ปีที่แล้ว +4

    Well, that made my cry. I can't imagine all the emotions that you've gone through dealing with this. I'm glad that you have finally found some answers, even if they were not the ones you were hoping for. Way to come out at the end of this still being the fun positive person you are!

    • @MylesMatsuno
      @MylesMatsuno  4 ปีที่แล้ว

      She's such a strong and wonderful person. Thanks for watching her story!

  • @leahgracelove
    @leahgracelove 3 ปีที่แล้ว +2

    She truly is an encourager. She encourages and inspires me and so many others. Thanks for sharing her story! Great video!

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว

      She really is! Thank you for watching and leaving a wonderful comment.

  • @drewbressel242
    @drewbressel242 2 ปีที่แล้ว +1

    I was diagnosed with crps. I was in a car accident in 2002 where I broke my femur in 4 places. But, I ended up spraining my right ankle. I ended up on crutches for 17 weeks. It took me 6 months to get a diagnosis because it was showing up as a leg infection.

  • @belindaconarty797
    @belindaconarty797 3 ปีที่แล้ว +3

    Beautiful story fellow warrior

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว

      Thank you for watching and the nice compliment for Molly 😃

    • @belindaconarty797
      @belindaconarty797 3 ปีที่แล้ว +1

      @@MylesMatsuno us warriors have to stick together

  • @ja_lil
    @ja_lil ปีที่แล้ว +1

    Its the most painful unbearable thing I've ever experienced... I think I have PTSD even watching this video

  • @Willow_and_Sage
    @Willow_and_Sage 3 ปีที่แล้ว +3

    Husband was just diagnosed. I want to understand everything I can about what he is going through.

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว

      So sorry to hear. Molly might be willing to answer any of your questions. There's also the clinic she is at (Spero Clinic) that would have more information for you as well.

  • @vickiwaatti1076
    @vickiwaatti1076 8 หลายเดือนก่อน

    I have CRPS type 2. I have had to have my right leg amputated below the knee. I had CRPS before (it was due to shattering my right leg and ankle by falling in my kitchen) and it is worse after along with having phantom pains.

  • @catelewis7223
    @catelewis7223 11 หลายเดือนก่อน +2

    CRPS is so intense. Ketamine is the only thing that has helped me.

  • @nicopaolo
    @nicopaolo 2 ปีที่แล้ว +1

    Molly! And also anyone with CRPS or EDS!
    Please look up the Spero Clinic in Arkansas! They are doing pretty amazing things to help improve significantly or even heal from these conditions !
    Dr Katinka also has a podcast that’s pretty great too! “Hope for chronic pain” (definitely check it out, it helps give a better understanding of what they’re doing at the clinic)
    Overall they help calm down the central nervous system and what they’ve seen is people with random conditions especially CRPS really improve because you’re nervous system is not hyper focusing on the pain as much and because the nervous system is calmed down your body starts becoming more efficient at healing itself again even with things like EDS
    Keep going and keep hope ❤️

    • @MylesMatsuno
      @MylesMatsuno  2 ปีที่แล้ว +1

      Hey Nico! Thanks for your comment. Molly is currently at the Spero Clinic! The clinic has been wonderful so far. Thank you for your comment.

    • @b3rkolas235
      @b3rkolas235 2 ปีที่แล้ว

      I have also hEDS and CRPS.

  • @bonniegriffith740
    @bonniegriffith740 2 ปีที่แล้ว +1

    This is kind of nuts to come across this in the wild. You probably don't remember me as we only met a couple of times. My name is Bonnie, and my family/members and the Armstrongs have been in and out of each other's lives for almost as long as I've been alive. More out in the last several years, seeing everything that has been going on. I just wanted to comment, ultimately, to say that my heart goes out to you, dearly. I do not have the same conditions as you, but I grew up with several undiagnosed illnesses, a few genetic in nature, and I, too, thought that being alive just meant being in pain. Always "sucking it up" because the people around you say so. Walking through injuries. Continuing to do so because then you have doctors, even with your lengthy medical charts, telling you you're wrong about the the things that you feel every moment of every day. I am horrified each time I see another human being experience this. I see endless demonstrations that a compassionate response is created from blood. My own body collects diseases like they're pokemon. It all finally decided to crash and burn when I turned 19. It's endless pain, endless therapy, endless new treatments, endless treatments that you just can't afford, endless working and searching except for those few moments of escape. Usually with our "person." The one human being that loves you so much that you find true respite. You're strong. You're not a failure. Your pain is real, and your thoughts and feelings are valid. You're right every time you stick up for yourself, and it's okay that you've had moments that you couldn't. Our own agency is borne out of these moments, though I know you do not need me to tell you. I am not a religious person so I can't offer prayers. I can only extend my own love and humanity to you, and express my sincerest hope that you intersect with the medical advances that you certainly deserve. All my best to you, Ben, and your families.

    • @MylesMatsuno
      @MylesMatsuno  2 ปีที่แล้ว

      Wow. Thank you for sharing. I'll tell Molly about this message.

  • @jerrylippert6667
    @jerrylippert6667 4 ปีที่แล้ว +4

    Thank you for sharing this, by doing so you are creating a legacy of help and hope just like your parents have done for so many people. It has been a difficult journey through that injury and pain. So glad you got a diagnosis, which helps make sense of what you were dealing with. Will pray for the Lord Jesus Christ to heal you and for the ministering to others that you do to bear even more fruit. Ephesians 3: 14 - 21: "For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith-that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.
    Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen."

    • @MylesMatsuno
      @MylesMatsuno  4 ปีที่แล้ว

      Thank you for watching and for your kind comment! 🙏🏽

  • @TheDimachaerus
    @TheDimachaerus 3 ปีที่แล้ว +2

    There is a clinic in Fayetteville, Arkansas called the Spero Clinic. I would recommend calling to see if they can help you. I have seen miracles performed there.

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว +1

      That’s where she’s at currently! She’s been seeing a lot of progress and seeing miracles happen everyday with others. Glad to hear that others, like yourself, know about the clinic. Thank you.

    • @TheDimachaerus
      @TheDimachaerus 3 ปีที่แล้ว

      @@MylesMatsuno She's young and female. Not sure how long she's been dealing with this but if she believes she can heal, she will. Although, not everyone gets better.

    • @TheDimachaerus
      @TheDimachaerus 3 ปีที่แล้ว +1

      @@MylesMatsuno Are you a film maker?

    • @MylesMatsuno
      @MylesMatsuno  3 ปีที่แล้ว

      I am! Yourself?

    • @TheDimachaerus
      @TheDimachaerus 3 ปีที่แล้ว

      @@MylesMatsuno I am not. I have a friend currently at the clinic who is.

  • @AntonioLiberato08
    @AntonioLiberato08 ปีที่แล้ว

    Wild story! Have you or anyone had a nuclear medicine bone scan done? If so results? I have been diagnosed with this and truly indescribable from hips to feet after being put in a cast and boot for Achilles tendonitis and plantar fac. 15 months now of the craziest symptoms and feelings…..

    • @MylesMatsuno
      @MylesMatsuno  ปีที่แล้ว

      Hey! Thanks for your comment. I'm not sure if Molly has, but I can ask her for you if you'd like.

    • @AntonioLiberato08
      @AntonioLiberato08 ปีที่แล้ว

      @@MylesMatsuno hi! Yes that would be great!
      Also, can I ask if you know where I can find a doctor/specialist to help me in the NJ/PA area? NJ is where I have insurance but I’m also close to PA. Thank you!
      Lastly, are there definitive test for RSD?
      Thanks again!

  • @FDSBusdriver-h6r
    @FDSBusdriver-h6r 9 วันที่ผ่านมา

    Have you ever tried Carnivore? I has seen 2 videos on TH-cam that it has put people in remission.
    Dr. Anthony Chaffee and Dr. Ken D. Berry are good ones to listen too!

  • @adrianasundari1689
    @adrianasundari1689 ปีที่แล้ว

    Try pain reprocessing therapy or somatic tracking

  • @timgray5763
    @timgray5763 10 หลายเดือนก่อน

    Same exact stuff happened to me but it was my ankle and then I became allergic to salt and then Glyphosate and then atrazine and the benzethonium and I had them completely out of me for months but coors light just changed there operations over to using glyphosate for the hops and barley and I’ve spent the last couple weeks trying to get it out and keep it out , I’m on Guinness now and shop with gloves for life ! Wine is next but I hate it . I had this and now I don’t due to not eating processed foods anymore especially the Cereals they don’t use natural gas anymore to cook they use chemicals now glyphosate ………… made in USA used to be a good thing , what you throw out after the meal is the is the garbage the food ! It would be better if you ate the carton it came in there less chemicals. Either you way you die from the food or the suicide disease from the chemicals in the food… y’all have a choice ? Food or pain I hope this finds you in the worst pain so you can listen to the content which is true and my experience and I’m free of pain now rice and bottled water changed my life back happy

  • @thermonuclear1828
    @thermonuclear1828 5 หลายเดือนก่อน +1

    Music ruined video.