Hello ….I’m sitting up at 2:00 am Sat night/Sunday morning! I feel sickened in my stomach. I am unable to sleep…..again, tonight. One reason for my insomnia is due to the fact at I suffer from a horribly painful, progressive, degenerative, Autoimmune Nerve Disease. It is called “RSD/CRPSII” or it is known also by “Complex Regional Pain Syndrome (mine is Type II, meaning that it started in my body during a pretty routine foot surgery, and a nerve was injured or/and cut). It is sometimes called “Reflex Sympathetic Dystrophy” also; though this last term is being phased out because it’s not a “syndrome”. It’s actually a real, most painful, burning on-fire, #42 on the “McGill pain scale,”kind of disease, with no cure and not many treatment options for those who suffer with it.
There are some who’ve not actually been “cured”; but they’ve either been very lucky to have someone fund some of the very very expensive treatment options, or possibly they just have money? Maybe they sold heir home and many of their belongings in order to try “anything” as a last resort that they hope will bring them so comfort from this unrelenting, burning nerve pain, that is numbered right up there with Cancer (not terminal) or at the same #42, for amputation of a digit without anesthesia! on the pain scale.When worse comes to worst, there have been people who had their loved one flown to Monterey, Mexico (a place where the “Ketamine Coma’s-are no longer legal, but they had been for awhile) or to Germany, where they may or may not be legal any longer? The Ketamine coma seems to “reset” the pain patients'(or RSD-CRPS patients) pain centers, in the brain. These methods proved to help some; others have died during the “coma” period or just afterwards; and still some others were fortunate in that they woke up from the “Ketamine Coma “, in remission of sorts. There is no cure as of this time, for this very painful, disabling disease. Some people are not even eligible for the less invasive treatment of the K-infusion treatment (which is legal here in the USA) because the infusion isn’t quite as harsh as the coma on the body & brain, though still not offered everywhere. Some people have gone into periods of remission; yet till there have been some who have also died from these infusions. It usually involves a monthly Ketamine infusion and then support infusions every so often to keep them in remission! A friend of mine was at the hospital getting a Ketamine infusion, when a woman she’d been chatting with just a little while earlier, before their simultaneous K-infusions, slumped over. Later she found that the woman had died during her treatment! How scary it must’ve been for the other patients to continue on with their own infusions, after witnessing this! An accomplished author,Wendy Weckstein, whose son suffers from RSD/CRPS (*and she has several testimonials re: her book, from several M.D. ‘S in Neurology, Psychiatry and Internal medicine) states this about Ketamine, in her book “”The Burning Truth About Complex Regional pain Syndrome (CRPS)”:
Ketamine is a Hallucinogenic drug presently being used by Physicians around the world to treat the agonizing pain of CRPS……When given a low dose 5 day infusion, one must be monitored closely in the I.C.U. for levels of consciousness, hallucinations, cognitive functioning, extreme nausea,, blood levels, vital signs etc. Most receiving the procedure in the I.C.U. manage just fine with close supervision, have some degree of pain relief -however short lived-and have no known long term side effects.” Her son, however, was not so fortunate! After 3 weeks of oral Ketamine and 2 low-dose infusions, “Devin” developed seizures and a condition called “HPPD”. It is a life changing rare disorder aka “Hallucinogen Persisting Perceptual Disorder”. It is a severe life long problem where the person perceives or actually experiences the feeling as if they are on the hallucinogen, like we might see in someone who abuses LSD , for example! The person affected with “HPPD”, also has constant visual perceptual changes, hallucinations, depersonalization and altered cognition! While this is very rare, it is worse for a young, still developing brain. I am NOT. trying to scare anyone but just giving my reasons for not being able to get this form of treatment, which has also worked so well for many CRPS patients! * you can find Wendy’s journey with her son on her Facebook page or her books website at:http://bit.ly/TheBurningTruth. (I do not endorse or reject her book, it was just some information that I came across and wanted to share with you).
There are different options and treatments for RSD/CRPS, but if you have a number of health issues,like I do….your choices are limited ! I’m not eligible for any Ketamine infusion or otherwise. It’s been told to me by several Dr’s in the field, here in Michigan, in Toledo and at Cleveland clinic; thatI’m not eligible because of the trauma/abuse I endured much of my life, and the diagnosed PTSD or “Post Traumatic Stress Disorder”! You see, Ketamine can cause hallucinations at any unspecified time in the future. It happens to those of us with traumatic
Childhoods/experiences/upbringings because one can regress and go through the abuse again during a hallucination! This can be detrimental to some, and the “K” in any form is not allowed in those cases; also in some cases involving heart disease or/and heart issues! Either way, I am not allowed nor able To get the Ketamine. This is all from my own experiences, friendships, word of mouth and my own experiences in reading and speaking with people involved in these types of treatments. I am not a Dr. and you should always seek your own medical advice when looking for answers and treatments for your specific illness.
When I sat down to write tonight, I had no idea that I was going this way. I guess I’m just tired f the Opiods, and cannot imagine this forever! I try hard not to get too depressed and “think” too hard or too much about it. But having this CRPSII, along with : Sick Sinus Syndrome, A-Fib, Coronary Spasms, CKDII, MTBI, Dysautonomia/POTS/NCS, Degenerative Disc Disease, multiple herniated & bulging discs (inoperable), L-4/5 Radiculopathy, C5/6 Radiculopathy, Polyneuropathy, Chondromalacia Patella syndrome, a visual convergence insufficiency, moderate nerve (bi-neural) hearing loss (w-2 hearing aids), full body CRPSII (origintaed in right foot after surgery April 2007), Asthma, shoulder instability with right side winged scapula and right long thoracic nerve damage (8 inch span). I’ve had 9 surgeries since the MVA in August 2002, including 2 screws in my left shoulder, several other surgeries and a pacemaker twice now! The second heart surgery was just in February, this year! They had to have a plastic surgeon there to help rebuild my pectoral muscle; as the first pacemaker that was deep inside of that muscle, had worn right through it and had to be rebuilt! Luckily, that plastic surgeon had researched RSD/CRPS. she found that if she did an internal surgical “wash” of “Bipivacaine” injections, to last 72 hours; that it would not only help with the pain afterwards, but it would at least help to avoid an internal spread of the CRPSII to inside of my chest! So far, so good, because it has not spread to my internal body. Although the surgical area itself, on the outside, is a little worrisome because its very very sensitive in the skin and it burns to touch; along with the fact that the water from the shower cannot touch it at all! Usually after surgery, there is zero feeling in the skin around it, from my experiences! This time is different, but the jury is still out, as I will continue to wait and heal before I make a real statement about that!
It’s hard for me to believe that I was once a cheerleader for several years. I taught Aerobics and jump roping techniques at a fitness club or several years! I was a full time, working, single mother who made her children the #1 priority in life….always! Well…I still feel this way about my girls. I drove them everywhere and went to everything with them and/or or them! I never missed a swim meet or a dance function (except right away following that 2002 MVA)! I was the “fun mom” who allowed many sleepovers and read to my girls until they asked me to stop at different ages (about 11 & 12 yrs old)! I knew all of the “hayride” songs when we were in the YMCA “Indian Guides” program! I would leave my work in one town, drive 30 minutes home, to get my daughter’s forgotten homework; and then drive 20 minutes more, to her school,to make sure she had it . I would then drive another 30-35 minutes back to my job, forfeit my lunch time and return to work!
I was at every band concert and chorus show! I was “two parents” for several years! I tried my very best and I still “lost” my oldest daughter! Another story for another time! I’ll just tell you that after all of the health issues listed above, I then had a heart attack in 2005 & later in 2006, a stroke (CVA)!
I am so blessed to ave finally found my “soul-mate! We’ve been married for over 16 years, now! He is my “hero”! He is my one “real, true love forever”! I thank God for him and for my loving, lovely 24 year old youngest daughter! She is also my “hero” for what she’s done in her life and with her life…..and for still loving me when so many others just want to hurt and abuse me! Thank you God for them! I pray daily for my family. I do love theml! I forgive and love those who’ve hurt and abused me; because something horrible must have happened in their lives…to them.., or they would never have treated me, another human being, the way that they’ve treated me…