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Roxanne
(@roxanne)
Admin Admin
Joined: 2 years ago
Posts: 40
September 26, 2017 1:44 am  

Hi, everyone! My name is a Roxanne, I live in LA and have full body CRPS. I'm excited to launch this new & improved forum, and look forward to reading your posts. 


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wbrianiii
(@wbrianiii)
Member
Joined: 2 years ago
Posts: 1
September 28, 2017 4:35 am  

I am Weaver T. Brian. I suffered from CRPS type 2 for several years. Am I the only one in this forum that has had type 2? It always seems like everybody has type 1, and the only similarities between the two are the symptoms. 


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admp666
(@admp666)
Member
Joined: 2 years ago
Posts: 1
October 6, 2017 10:56 am  

Hello all, new to the forum here. Nice forum to join up..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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jolandac
(@jolanda)
Member
Joined: 2 years ago
Posts: 2
October 11, 2017 7:49 pm  

Hi to everyone! My name is Jolanda and I‘m from Switzerland, so sorry for my english! 😀

I suffer from CRPS since 2008... First it was only my foot but earlier this year it „spread“ to my hand, but I‘ll never give up! I have a SCS implanted since 2014 and I don‘t want to miss it even I have some problems with it. 

So I‘m looking forward to chat with you guys! 

Greetings from Switzerland!:)


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spcdono
(@spcdono)
Member
Joined: 2 years ago
Posts: 1
October 19, 2017 2:36 am  

Hello everyone! Just signed up and wanted to introduce myself and share with you guys a little bit. I've had CRPS in my right leg since January 2010 and recently had it spread to my right arm and the right side of my face and skull. I do have an SCS in to help with the leg at least, so that is a plus. Stay strong everyone and keep fighting forward!


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Tigerdragon
(@tigerdragon)
Member
Joined: 2 years ago
Posts: 3
October 19, 2017 10:03 am  

Hi!  It’s 5am and I have been up with pain since 3 so I thought what better way to occupy my time than join this forum. I am a 71/2 year survivor of CRPS affecting my lower back down my left leg into my foot.   I am looking forward to having the extra support and learning from others.  I just received the option of Ketamine Infusion.  I have pretty much tried everything else available in my area so they are saying this is my last option.  I am still unsure of this type of treatment, however, I am curious if anyone has tried it and what there experience was?

Heres to hoping for a Happy, Positive Pain Free Day!


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Family Man
(@fm)
Member
Joined: 2 years ago
Posts: 2
November 3, 2017 2:26 pm  

Hi everyone! I have CRPS Type 1. My lower back, both legs and both feet are affected. I was diagnosed early last year. 

My doctor prescribed a wheelchair, but I don't use it. I'm stubborn. I should use it though as walking is excruciating. I walk with forearm crutches to help with balance, but I still fall from time to time. 

I'm an artist and my arms/hands are not affected so CRPS hasn't stopped me from making a good living. 🙂 

Hoping everyone here is having a pain free, productive day! 

Tough Times Don't Last. Tough People Do.


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Angie J. Hernandez, C.Ht.
(@angie-h)
Member
Joined: 2 years ago
Posts: 7
November 4, 2017 11:54 am  

Hi, everyone, I'm Angie J. Hernandez, Certified Hypnotherapist.  I am conducting my own study on extreme pain relief with hypnosis.  I'm looking for volunteers to work with me in person, if possible, but more likely on webcam.  I am offering this free in exchange for the rights to use the video on my website and my social media and training.  I have worked with one person already.  We lowered her pain significantly.  You can see her video on my Youtube channel, Indiana Hypnosis Center. If you allow yourself to be hypnotized along with her, I would think even that would help your pain.
   It's already proven that hypnosis relieves CRPS symptoms so I'm not doing anything new.  What I would like to do is streamline the process and teach this to other hypnotists so that there are more practitioners out there.  Pain issues are epidemic in our nation and hypnosis is a great, non-narcotic antidote.
  When you would like to experience pain relief and help others, contact me here and I will reply.  www.IndianaHypnosisCenter.com

 


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CatJonz
(@catjonz)
Member
Joined: 2 years ago
Posts: 4
November 16, 2017 3:02 pm  

Hi. My name is Catrina. I have a 14 year old daughter that was diagnosed just over a year ago.  We live in Fresno, CA.  We are still trying to find the right treatment and are hopeful for remission. We keep being told this is possible because she’s young and was diagnosed and treated early. Along with CRPS, she has intermittently suffered from conversion disorder where temporary paralysis sets in. She’s been part of a pediatric pain program at Stanford and although it didn’t relieve her of pain, it did give her great insight into fighting this disorder.  She is an amazing kid. She still attends school and church. She spends time with family and friends, too, but I know she’s constantly in pain. I’m happy to find a place for support as we continue to go forward fighting CRPS. 


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williamrock
(@williamrock)
CRPS Since 1997
Joined: 2 years ago
Posts: 1
March 4, 2018 5:25 am  

Hello, My name is William Rock and have been Living Through the Pain since 1997 when I was first injured as a ski instructor going to school for fire technology and working as a wildland firefighter and training to become a paramedic. Back in 1997 I was injured saving a child as a ski instructor from hitting trees and in the process blew out both of my knees and have had 2 surgeries on my right knee and suffered from pain ever since. I moved out to Kansas City from California back in 2005 for work and was diagnosed at KU Medical Center with RSD / CRPS and starting in 2008 I had my first install of a Medtronic Spinal Cord Stimulator and since had 3 other installs since it never seemed to work but still have it installed and charged.

I have had just about every medication they could give me all the way up to Ketimine as well Pain Patches and more. Back in 2012, the Chronic Pain had overwhelmed me and I decided that I could no longer work a full-time job due to the amount of pain as well medication I was taking. 

I was able to pickup work through a local marketing agency for Search Engine Optimization and was able to work on my computer at home and was not able to walk more that 1,000 steps per day without being in crazy pain.

The only way I could explain my pain to others was: imagine you hit your finger with a hammer and consider that pain through your entire body 24/7  that is the #PAIN I have lived through for over 20 years.

Fast forward a few years and because I was a chronic faller as my knees would give out at any given moment as well the constant tremors from my muscles twitching was overwhelming, I walked with a cane everywhere I went and still had times where I fell.  One day my doctor gave me a walker and said to walk to the door and back so I did then started to write up a prescription for a walker. At that point my life changed, I had always worried that I would go with the cane, to the walker and then to a wheelchair and from that point on decided I am going to fight a lot harder and see if I can somehow get healthy but did not know exactly what I was going to do in order to achieve that goal.

I ended up working with a chiropractor and was super afraid especially since it was hard for any doctor to touch me let alone my wife sometimes could not even touch my skin without putting me into a pain attack. Dr Woodle from Advanced Sports & Family Chiropractic and Acupuncture he introduced me to light adjustments with a special tool called an activator as well used a treatment called Cold Laser Therapy and started with the most painful spots a few times per week and then we started using cold laser on my entire nervous system starting from my neck and down my spine to my arms and then down to my feed.  

After a few months, I was able to start feeling a little better and challenged myself to walk every day outside on the sidewalk and would not allow anyone with me as I was in so much pain with tears falling from my eyes and just pushed through the pain.

Around 2014 I was doing a lot of volunteering for Google online in their help forums and one of my friends suggested I join a program called the Google Top Contributor program and have the opportunity to fly down to the GooglePlex their headquarters down in Mountainview California. It was like a dream but knew my pain would not allow me to attend especially when the next event was September 2015 and this is where my motivation really started to kick in full blast where I was able to push even harder just like I was training for a marathon. 

The great part of the story is that I was able to bring my pain down a lot and walk further and further, and was able to walk down to the street light and decided that I could go further and soon enough I was able to walk down to the store and pick up a sweet tea or Gatorade and then site on the bench for an hour and then walk back. Working from home gave me that opportunity to be able to get most of my work done in the morning and then take a walk around lunchtime and then take a nap and get back to work.

I was able to attend the Google Top Contributor Summit and can't say my pain was gone because it was very much still there but had learned how to control it with mediation and breathing exercises and knowing when to take a break. I had so much fun and could not wait until next year, and learned about another Google Program that I got involved with called the Google Local Guides program working with Google Maps.

They needed help from local guides to take photos of businesses in their area so I decided to take these photos of stores on my walks and after a while, I had taken each photo in my area and added it to the maps. It was my new challenge especially since I was so focused on taking high-quality photos and not missing a thing. I found myself doing this more each week and started to drive again allowing me to take my daughter to work on the weekends at 7am and then decided I was going to take more photos of businesses in the area that I could not walk to and would park the car and walk around the shopping center taking photos of each business and then going home when everyone started showing up around 10 am and upload those images to Google Maps. The best part was I had received a smartwatch while I was down at the Google event and it was tracking my steps, I found that after a while without realizing it I would walk an extra 2k in steps and after a while it became a game to see if I could make it to 3k in steps and eventually 10k in steps. I ended up taking a total of 4 thousand photos and had mapped over 1,700 companies within a 11-mile radius within 2 years.

Going ahead to today, I have been able to go back to a full time job and work 8 to 5 Monday through Friday at the office and work for an infrared sauna manufacturer that has also allowed me to have a portable infrared sauna at my home as well get to use their large saunas at work every other day during my lunch break.

I have increased my healing with infrared going from using it at the chiropractor with cold laser all the way to getting a much more concentrated amount of infrared throughout my entire body helping me to supercharge my life and allow me to get back to a normal life. 

I still have my pain flare-ups especially in the evenings but blessed to have had such an awesome support system with my family and friends during some very challenging years.

 

I am excited to be a part of this community as most of my interactions with this group have been through Facebook and Instagram but very interested in spending some time on the forums. That is my story in a shortened version and plan on building out a website devoted to resources and information along with a further in a more detailed version of my journey through pain.

William Rock- Kansas City /// Living through the Pain from CRPS injured back in 1997 - Diagnosed in 2006


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debj
 debj
(@bratchild226)
Member
Joined: 2 years ago
Posts: 8
March 21, 2018 1:12 am  

Hi, My name is Deb and I have full body CRPS. I developed mine through a foot fracture I received on the job a little over 3 years ago. I currently live in Temecula and have been a member of this group since December 2017. I really enjoy this group and look forward to meeting all of you. Have a great day!


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juliettedominique
(@juliettedominique)
Member
Joined: 2 years ago
Posts: 1
March 22, 2018 9:54 pm  

Hello everyone! My name is Juliette and I live in Northern California. I’ve had CRPS type 1 for 9 months now. It originated in my right leg and now I also have it in my right arm. I recently went and had the neridronate treatments done in Italy. They have changed my life! I’m excited to talk to fellow warriors on here and hopefully meet some of you at the RSDSA convention in San Jose this weekend!


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Dannyzee
(@dannyzee)
Member
Joined: 7 months ago
Posts: 3
May 7, 2019 8:04 am  

Hi my names danny, and i just wanted to thank whoever created this forum “assuming roxanne”, ive had crps for ten years now as of a few days ago and i felt like i was at the point where i just wanted to Literately give up and stop fighting. A few monthes ago i had broken up with a girl i was with for years and years and she was like a best friend to me, my guy best friend “who i see maybe once a week” is bi polar and gets into severe depressions and i wont hear from him a lot of weeks, so lately ive felt a little bit alone. My pain has been very rough lately because i just moved from my sisters back in with my parents and brother in northern california and its hot with no air conditioner. For me heat is a very bad thing, when it gets like 90 or hotter it definitely gets more painful. I cook for my hobby/income, but not food. Cook is a term for people who “cop” which basically means buying and reselling limited and hard to obtain designer brand shoes or clothes, or basically anything thats guaranteed profit. I have crps in both legs so most jobs just are not realistic that id be able to do, it was the only thing that made sense that i could actually do. To be honest this forum is exactly what i needed, since ive had crps ive not once heard about how it effects others and how other people live with it, ive never had a support group, and never heard about how other people treat it. Just seeing that im not the only one going through this and even that others have had it longer really just made me feel like im not in this alone, cause thats how i have felt for years now.

This post was modified 7 months ago by Dannyzee

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Tyrathial
(@tyrathial)
Member
Joined: 7 months ago
Posts: 2
May 17, 2019 10:25 pm  

Hello, everyone.  My name is Joe and I was diagnosed with CRPS type 2 back in January of 2015.  Before that time, I was very active in the gym, biking, playing with my dog outside, just enjoying life.  I was at a point, at age 37, where I was encouraged to do amateur body building competitions.  Then just days before my 40th bday, I had an accident at work that changed my entire life.  Not aware of it, a 4-wheel dolly had started rolling down the sidewalk and, as I turned around to take a step, struck me under my left kneecap.  I ended up having to go home and immediately set up a doctor's appt for the next day.  The general doctor had no idea what was wrong and referred me to a knee and foot specialist.  After initial testing was completely, it showed that my entire nerve had been crushed with part of it severed.  It was from that time on that I have been a guinea pig for all sorts of trials and treatments to alleviate pain.  I did have a DRG stimulator implanted in by back with 2 leads attached to 2 nerve clusters to help with some pain.  That was done between 2-3 years ago.  I have to go back in to have the fields adjusted as the electric signals are not relieving the pain like it use to.  He also wanted me to try Iovera injections.  That turned out to be a bad idea.  It caused many more problems and now my symptoms have spread from my hip down through my foot.  **Note:  Unless you have very high pain tolerance, I would not recommend these injections.  Mine is quite high and out of the 8 injections, I started to see black spots after #6.  A month or so ago, he said he wanted to try a 3rd sympathetic nerve block to see if that will help at all.  The first 2 did nothing.  I get the feeling I am almost at M.M.I.  Before the symptoms spread throughout my entire left leg, I asked if he could just amputate So I could get a prosthetic and start to have a better quality of life.  I was advised against it as it had been too long and I would just experience phantom pains. 

So what has this condition done to my life?  I am now relegated to a wheelchair (or crutches if the area is too tight for my wheelchair), in pain 24/7 with no real relief, dealing with people that have no idea what I am going through and thinking it is all in my head, cannot work because of the pain and medication I am on, seeing a therapist because it has caused me to have stress, anxiety and depression, and am now dealing with a divorce because my soon-to-be-ex said she can no longer deal with my disability and that I am no longer the "help partner" she married. 

My advice to those whose CRPS type 2 is not getting much relief is to talk to a pain therapist.  They will help teach you coping techniques and allow you to let out all your pent up emotions from the pain.  I hope and pray that those who are married have a spouse that loves you unconditionally and gives you all the support you need.  That, right there, will help with a lot of the stress, anxiety and depression.  For any who enjoy church-related activities, please continue to go and be around others who love you and support you through friendship.  Find hobbies and activities that allow your mind to escape the realm of pain and focus on something else for a time.  


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