There still is very little known about RSD/CRPS. It is and has been proven to now be a progressive, Autoimmune disease and one of the most painful chronic pain diseases according to many thorough studies. You can find information regarding these studies at the two main places of information for this debilitating disease. They are at http://www.rsdhope.org and http://www.rsdsa.org. Another good place which is involved in Non-profit works for RSD/CRPS & they have support and information at their website is run by my friend Barby Ingle & her husband, Ken their non profit is called “IPain” or aka International Pain Foundation, and it’s at: https://Powerofpain.org website with much support & information.
I will tell you a bit of my RSD Journey and give you my websites, CAUSE group site, and support groups online, in just a moment. I want to be clear on a few things first. Unless someone is a true Physician and has much experience in dealing with this horrible & very painful Neurological disease, then you need to NOT just believe what everyone writes on all of the blogs and personal websites. I’ve seen and heard people say that “RSD/CRPS” is not only the most painful of all chronic pain diseases but also I’ve seen people misquote the McGill pain scale! I’ve witnessed some persons stating that “Complex Regional Pain Syndrome is more painful than getting a LIMB amputated without anesthesia”! That is an exaggeration and the true written research (which is found on any of the top websites for this disease , which I stated above) says that “RSD/CRPS Is about as painful as amputation of a “DIGIT”, without anesthesia! A finger being amputated and a whole arm or a whole leg is a huge difference! Also people have put that “RSD is as painful as a woman in labor, or more!” Whoever wrote that, never had a child without any medication! What it truly says in RSDHOPE, & the McGill pain scale, as I have pictured below is that this kind of pain can be compared to a woman who is “unprepared” and going through labor! Lastly, at least for now, for today… The McGill pain scale states or shows The pain of RSD/CRPS to be #43 out of a highest of 50 on their pain scale. This nerve pain has also been compared to Cancer pain; but NOT to be confused with “terminal” cancer pain.
I sometimes feel that in some patients the “pain” of not feeling listened to by multiple Dr’s, family and friends etc. leads them to plead the case of this pain and go above and beyond what is researched and written about it! I am lucky in the sense that I was diagnosed right away by my surgeon, 8 weeks later, at my post-op appointment following a foot surgery in 2007-April! By 2010, three years later, I was diagnosed with “full body RSD/CRPS”! By 2013, after a heart surgery, my CRPS was considered to be systemic,
People who are in pain can get so tired of going from Dr to Dr and trying to explain everything again and again without validation at times! Mostly because this is considered to be one of the “invisible” diseases. During a flare you may see mottled skin, and blueish/purple shiny and swollen limbs. Some sufferers have spouses, friends and family who don’t believe them either!!
I do believe that people should only claim information to be true on their websites or blogs while using real research and proof to back up what they are saying!
That being said, I want to let you know that much of my information comes from 6 years experience with a diagnosis from 4 separate Physicians of “CRPSII” (which is the type of RSD/CRPS that happens from not a regular trauma (CRPSI) or injury but from a nerve being cut or damaged, as mine was in a right foot surgery in April 2007. The information on any of my support groups, blogs, websites & CAUSE **(I have 3 Support groups on Facebook: “R.A.S.E. & Hope for Invisible Diseases”, Invisible Diseases (Esp. Chronic Pain & CRPS & Michigan CRPS Fighters) … I also have a Google discussion group “Be Aware & Care” & a Facebook public page for a group I founded in 2011 called RASE For CRPS (it stand for R= research, A= awareness, S= support & E= Educate). I make jewelry for awareness etc. & I also have a Jewelry ordering/viewing page on Facebook called “Support In Jewelry”..any money or donations goes directly to one of the RSD/CRPS non-profits. The information that I write comes from the documented research that I already mentioned above. I am not a Dr.; nor do I claim-to have the knowledge of a medical Doctor, in any way, shape or form. I tell everyone this up front . I only know what I know from my own experience and my personal & group reading and Research. If I am wrong, I will admit it freely and fix my mistake. I Just wanted to make sure everything is clear so there will be no misunderstandings.
My story of pain started on an early evening of August 11,2002. My husband & I were on way home from a Summer outdoor art fair and a man in a Dodge Dakota truck ran a red light! What followed for me is many years or most probably spending the rest of my life with chronic pain, multiple herniated & bulging discs (inoperable), C 5/6 & L 4/5 & S 1 Radiculopathies, Polyneuropathy in Collagen Vascular Disease, Autonomic Neuropathy, Coronary spasms or Prinzmetal Angina, OA, RA, Arnold Chiari Malformation I, CKDII, Sick Sinus Syndrome (a heart Arrythmia illness), Atrial fibrillation & a pacemaker, Dysautonomia/POTS,*(about 80% or more of person’s with RSD/CRPS, also have been found to have Autonomic Dysfunction, or Dysautonomia)… 8 surgeries (so far).. Including 2 screws into the bone of my left arm/shoulder & 2 pacemakers so far… Rt foot gnarled, patella/femoral pain syndrome, 8 yrs of PT,OT etc..a heart attack in ’05 & then a CVA (stroke) in ’06 & more but just too much to write it all down here and bore you with! Then after a surgery on my right foot in ’07, a nerve was accidentally cut.
I went back to the foot surgeon for my 6 week post-op checkup. I was telling and showing her hoe much worse it felt and appeared. I was telling her how it felt like “an ice cube on fire” and she knew exactly what it was. She told me that I have “RSD/CRPS most likely type II”(because a nerve must’ve been cut in surgery)! She offered me “Lyrica” & explained nothing ! I went home with my husband and we researched “Lyrica” and “RSD/CRPS”! I was frightened and did not want to take that medication after reading the horrible and long list of adverse side effects!
That was when I met the founder of RSDHOPE , Keith Orsini! He’s had Many years of pain with RSD/CRPS & his went on to be “full body RSD/CRPS”; just as mine has now done as well. I was given a Mentor with a history of RSD. I still know her today and could call or email if need be. Then I became a Mentor for newly diagnosed patients. I started a CAUSE group to raise money & awareness. It is on Facebook CAUSES & it’s called “R.A.S.E. for Invisible Diseases”( the letters stand for :Research,Awareness,Support & Education)…I started a Support group called “invisible Diseases, Especially chronic pain & RSD/CRPS”…it’s a closed group so the members can feel free to discuss. Also, I’ve initiated a new Google plus support group, an open group, called “Be aware & Care”!
I’ve visited several more Dr.’s for a second & third opinion and even got a 4th one! The 2nd Specialist that I saw, took one look at my foot from the doorway, and said “Oh …that’s classic RSD/CRPS”! They’ve all said the same thing about me having now “Full body RSD/CRPS”! I’ve resolved myself to having this but I’m trying to not focus on my own pain as much as possible . I try to help others with also a website that I started in 2007, called “Support in Jewelry”! I create and design support & awareness jewelry for ….but not limited to RSD/CRPS. I replenish my supplies first but the rest of the money will go to RSDHOPE or RSDSA. Also it goes to other non profit groups that help our CAUSE. I also donate to the”Chemo-Angels” program at http://www.chemoangels.com.
I have suffered a bit more than some but then there are always worse cases and better ones! I started out growing up in an abusive family (they still try to hurt me and they get pleasure from my pain!) …then abusive husbands until finally I met my soul mate, my husband, Craig 17 years ago!
But then one bad thing after another continued to happen to me in this life! I cannot go into all of it here and now… But just know that Ive had so many losses, so much abuse, meanness, cruelty …& it never seems to end! I try to keep in the now and never give up! I try to realize that Life will be what I make of it and what I choose for an attitude. I just do the best I can ..and try hard to not focus on myself (unless its necessary)…& focus on trying to inform and help others in pain! Thank you for reading and I hope you come away with something new and helpful. With Blessings and Love, Suzanne