Kayla's Fight For Her Life With CRPS
My name is Kayla Hansen and a year and a half ago my life was changed forever. For those that know me you know that I love to work and have a ton of passion for my career of managing restaurants. Dec. 27th 2015 I went in to work just like every other day not knowing my life as I knew it was soon to be over. I unfortunately got my hand slammed in between two doors and initially just thought my hand was broken. After 2 months of the swelling not going down, and my arm feeling like it was on fire I was given the diagnosis that I had complex regional pain syndrome also known as CRPS. It is extremely rare and is literally rated the most painful thing In the world. More painful than childbirth, amputation, or any cancer there is. It is an autoimmune disease that effects every single part of your body including organs. Your body can no longer control temperature and it literally feels like you are being burned alive 24/7. Along with the burning there are a million other symptoms, your brain tells every part of your body that it is hurting. It affects your bones,muscles,every nerve in your body, body tissue and all organs. Some people are lucky and the disease stays contained In just one limb. However I am very unlucky and mine has spread from my head to my toes in just over a year. I have seen over 50 doctors and they all say mine is the worst case they've ever seen. My condition is so bad that I'm literally being burned alive. Both of my arms from my shoulders down to my hands are covered in serious burns that start from the inside out. The burns are so serious that I have been hospitalized numerous times because if I were to get an infection I'd easily lose my arms. I am starting this go fund me for numerous reasons.... the first being the costs of all my treatments. In a little over a year I've had over 40 surgeries and procedures. I am already so far in debt but still fighting and refuse to give up. I leave april 8th to travel to arkansas to see a specialty doctor in my disease. There are only 4 doctors in the world that do what she does. I have to stay there for up to 14 weeks.. Between room and board and treatments it will costs thousands a week. There is no cure for this disease but I am hoping that I can at least get some relief. I went from living on my own being a hardworking 28 year old, to now I have to live with my parents and I'm completely dependent on them. I can't drive, I can't work, I can't even take a bath or wash my hair by myself. The other reason I am starting this account is I DESPERATELY WANT TO SPREAD THE WORD OF THIS AWFUL DISEASE. Although it is very rare we need to spread the word and make it so the whole world is informed of this condition.. It can happen to anyone at anytime. It is brought on by a trauma or a surgery. It is known as the suicide disease because up to 40% of people with this disease kill themselves because the pain is so incredibly unbearable most cannot live with it. I understand everyone has their own issues and money problems but even if you cannot donate PLEASE PLEASE SHARE THIS ACCOUNT SO THE WORLD CAN BE INFORMED OF THIS TERRIBLE DISEASE AND MAYBE ONE DAY FIND A CURE.
I caught this awful disease in 2010. Every operation it gets worse. I can so relate to your pain and frustration. I've never seen a case as bad as yours. I am so terribly sorry for your suffering. I wish I could donate but I am on disability alone with 2 kids. I hope you reach your goal and soon. Godspeed.
Your story is so similar to mineand many other, but it took me a year and three months to get diagnosis, spread to full body, and onset was July 16th 2006. I do not have money to give but my prayers are with you as well as the hearts of so many in the RSD/CRPS community.
I also have RSD/CRPS. It's the so horrible words cannot describe. I have had 38 authors and counting. It's a fight every single day. I pray everyday for a cure for this diesease. I had worked since the day I could until this disease attacked my body all over then I had to quit working and get on disability it was the hardest thing I have ever had to do. Just keep fighting and I will pray for you. We all just have to spread awareness and fight like hell. God Bless.
She must get admitted in Ayurveda Detoxification center . Sarvangdhara with Chandan bala tail + Kumkumadi tail + Jatyadi tail ..This Dhara will cool the skin and heal the wounds .The rest treatment per protocol . DeepanPachanVirechan ....Panchtikta ghrit orally will cool the superficial skin and penetration of oil will heal and Soothe.
I got this awful disease in 1996 and it did burn out around 2007 or 2008. I cant believe I lived through the pain but after moving to AZ and with the help of God and a good doctor it started going away and one morning my hand started to work a little better and now 10 years later you cant tell I had it. I pray that everyone that has this crap gets the same results i did. KEEP FIGHTING!!!
I have been battling this disease since 2002, it takes your life away and all you really ever want is relief, to be any part of "normal", it took 3 years to finally get a diagnosis, after 13 surgeries, therapy and being treated like some one looking for pain pills, it was validating to have someone say "your not crazy, your pain is real". I will be praying for you, don't give up or give in to the pain!!
I'm so sorry I cannot donate at this time. I live on a very limited income and struggle just to get through each month. Your story has saddened me so much and I will be following for updates. Please know I will have you in my prayers each night. Having severe chronic pain myself, I can't even imagine the severity of yours. I just recently read a FB post about a little boy with this condition or one similar. I will see if I can find it. Don't ever give up! I will share your story on FB and also with the Benedictine nuns to add you to their prayer list. God bless and heal you.
Kayla please learn about Lipsomal Vitamn C and Lipsomal Glutithione. Less expensive than intravenous vitamin C and as effective. This repairs the body's cells. Vitamin C as you probably know, large doses, are given to burn patients, as Vitamin C is what the body needs to heal itself. You have nothing to lose and perhaps much to gain. Google, You Tube, offer info. You can even make it yourself. You'll want to drink it daily. God Bless and good luck in Arkansas. Please consider Lipsomal C!
You don't need to go to Italy. Gruenthal is doing trials for neridronic acid here in the US nationwide for free!
Your symptoms sound a lot like Gadolinium Poisoning. If you have had an MRI with contrast then you retained some of the Gadolinium, a heavy metal that can cause many of your symptoms. If I were you I would do a 24 hour urine test for Gadolinium to see if you are excreting gadolinium. A low count on the first test does not necessarily mean you aren't poisoned by Gadolinium. It might mean the heavy metal is deep in your tissues and is not being excreted. So, if you have had the MRI contrast and get a low count on the first test, you should run a second immediately after taking a chelation treatment that will remove some of the heavy metals. There is no known cure for Gadolinium Poisoning or Gadolinium Deposition Disease, but if this is part of your problem, it will be helpful to know.
Kayla, I know nothing I can say will ease your pain. That said, you must be an extremely resilient person, not to mention brave. I hope that your Dr.s can find some way of easing your torment. Hang in there.
My heart goes out to you. My wife was diagnosed with this disease when it was called RSD (Reflex Sympathetic Dystrophy), it was later changed to CRPS. There are more people than you realize with this terrible condition and there are several national organizations and many regional support groups in the US and abroad. My wife belonged to RSDHope.org where she found great support. They have support groups in many states. We were married for 33 years and she suffered for 30 of them with RSD. I hope you have found a good support group and that someone will find a cure for this horrible disease soon. God bless!
Why go to Italy? Same trials are now in U.S.: LabanDecember 30, 2016 at 5:10 PM There is another Neridronate trial starting in the US January 2017. This time it is an open label trial (=every body gets the drug) and they use the same protocol as in Italy (100 mg x 4 over 10 days). I have asked one of the trial researchers for the official contact information, if anybody is interested. AnonymousFebruary 15, 2017 at 4:24 PM Hello! I am a study coordinator with Clinical Trials of South Carolina. We are actually doing this study right now here in Charleston, SC. You or anyone else that is interested can call our recruitment line from 8am to 5pm Monday through Thursday at 843-789-3707 to learn more. It is open label (meaning no placebo) as the OP stated before. ---- Here is the official link to the trial: https://clinicaltrials.gov/ct2/show/NCT02972359?term=Complex+Regional+Pain+Syndrome&rank=24
Please consult with your treating physician about what I am about to suggest. This is information learned by spending more hours than I care to think about searching for answers to CRPS. My research found that many the symptoms of CRPS can be improved with a simple protocol that is oriented towards shutting down it's origin. Namely Neurogenic Inflammation or NI. NI can be mediated with anti NI agents. There are a lot of suggestions that have and will come your way. Most may be of some benefit to your general health. Unless a suggestion addresses NI, it isn't going to do much for CRPS. 1. Time release opioids . Opioids are anti NI agents. Short acting opioids tend to provide short term relief, but peak in concentration quickly then diminish in action. Long acting opioids tend to hold a certain level that stays constant and thus manages both pain and the NI as well. 2. Diazepam or more commonly known as Valium. Don't need much a low dose is often used . This is a very good anti NI agent. The other various related medication such as Lorazepam and others don't work very well as NI agents. 3. DL-Phenylalanine - This is an amino acid that has a strong anti NI and also pain relieving effect. Best effects are with large doses. One would start at one gram a day and slowly work up to around 4 grams a day. Capsules tend to work better for most than pills. 4. The OTC allergy medication - Zyrtec .This is a specific anti NI agent . 5. Boswellia - An herb that might be of some benefit and help with a lot of the general inflammatory effects your skin is suffering. Again, this is just information . There are other anti NI agents which are used in CRPS. Ketamine is one common one for example. Others with CRPS have used this information about managing NI to good benefit. Blessings to you in this difficult time.
I'm so sorry you are suffering from this horrible disease. Breaks my heart. Just donated a little something. And I will checking on you and donating what I can. Love, Khia
There is US trials of Neridronate that are free. They have a Facebook page. I went to Italy for the treatment & it totally saved my life! I had CRPS in both hands. Was unable to write, open doors - anything to do with hands/wrists. I was taking 4-5 Norco 10/325 a day. I can't remember the last time I took a pain pill. I've read about a lady who had it for 12 years who had a 90% recovery.
I hope it is reassuring to you to know that I have had multiple lectures regarding your disease in my medical program, Monk. It is finally getting the attention it deserves in the medical field. It is hard to witness seeing you being the most extreme case of the disease out there. I'm rooting for you every day amiga. Stay strong