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Blog

Ask As Many Questions as Possible. No Question Is a Bad Question.

Published on July 16, 2021 under RSDS General Info

Written by Stephen M. Dorian for the RSDSA blog.

How and when did you develop CRPS/RSD?
I have had CRPS/RSD for over 10 years. My CRPS/RSD started after my right wrist was smashed by a revolving door at my downtown Philadelphia cancer research office building. As I was walking into the office building complex, my attention was momentarily distracted by a co-worker asking me a question. As I verbally responded to her, without looking forward, I stupidly re-extended my arm to continue to push the revolving door. Suddenly, my right wrist was smashed by the revolving door. My wrist made the huge revolving door suddenly stop in its place. The instant pain I felt was the most sudden and extreme pain I have ever felt in my entire life. I almost immediately passed out from the sharp pain. Some kind person grabbed me and helped me to the side. Unknowingly, I had extended my arm through the side opening of the revolving door [NOTE: The design of all revolving doors, if possible, needs to be revised to prevent this same occurrence from happening to others in the future.] As soon as I could get to my local Delaware hospital (with an ice bag on my wrist), I was examined. No broken bones. Great, I had thought.
I would later find out, not so great. In fact, my wrist was painful, almost continuously. Eventually, my Philadelphia surgeon, suggested surgery to stretch my right wrist’s tendon. My second mistake.
During my right wrist surgery, my left arm/hand IV needle size (too small, I believe) and location were problematic. The IV site burned significantly during the procedure (and afterwards). At home, the IV site was red and swollen and painful. My Primary Care Physician treated me eventually.
To summarize, my CRPS/RSD was caused by my stupidity, a revolving door, wrist surgery, and an IV.
What has daily life been like since your diagnosis?
Firstly, getting a diagnosis of CRPS/RSD is something most Doctors still try to avoid like the plague. Many Doctors will never believe you. For example, early on during my CRPS/RSD saga, I remember being required to see someone’s “Doctor” (not mine) to try to prove or more accurately disprove that I have CRPS/RSD. This “Doctor” repeatedly tried to get me to say that “I did not have CRPS/RSD”. Of course, I never did agree with his nonsensical assertion. Many other “Doctors” throughout my depressing CRPS/RSD saga have also had similar opinions about CRPS/RSD. In fact, more recently (in 2015), I was hospitalized locally in Delaware for adrenal insufficiency (abnormally low Vitamin D). Another “Doctor” (not mine) approached my hospital bed and declared to me, “You are lying (about RSD)”. I immediately forcibly responded, “Who are you? You do NOT know me or my medical history! Please get out!” Unfortunately, please be prepared for this type of behavior from some “Medical Professionals”. However, please be assured that most Doctors are truly Public Health Professionals and are trying their best to help you.
As far as an actual diagnosis of CRPS/RSD, an “incomplete” EMG (electromyography) diagnosed poor nerve conduction and neuropathy; the EMG was “incomplete”, however, only because it caused me extreme excruciating pain and the researcher did not wish to continue to torture me. Thankfully, he discontinued the EMG study early. Additionally, you will soon discover that using various Diagnostic Imaging Techniques, some Doctors diagnose possible/probable CRPS/RSD; others fail to even mention CRPS/RSD.
As far as my daily life is concerned… Unfortunately, I am disabled, unable to work, and on Medicare. I currently deal with no hair on my arms or legs (Yes, I have CRPS/RSD in both my upper and lower extremities.); dying finger nails; toe nails which for years have been barely growing (with other peculiar toe nail bleeding issues); my teeth losing their enamel and life (regardless of my fluoride gargling, 6-month dental cleanings, and brushing up to 10X/day at one point); constant severe pain, tingling and numbness (with occasional swelling) in my hands and feet; various haphazard muscle spasms/cramps and pain in my arms, legs, back and neck; off and on generalized and localized redness in both arms (and hands) and legs (and feet); constant temperature changes throughout my body (e.g., fingers, hands, toes, feet); diarrhea every 2-3+ weeks; sleeping is impossible without zolpidem (even with zolpidem, approximately 3-4 hours per night, and NOTE: zolpidem is a long-term life-saver; indeed, without zolpidem, my lack of sleep would have surely killed me), and on and on. Unfortunately, my CRPS/RSD continues to worsen. I just hope one day future CRPS/RSD patients will have at least one highly effective treatment. So far, in my opinion, we have failed miserably in understanding and treating CRPS/RSD.
My son and daughter-in-law have been kind enough to help me and allow me to live in their home for much of my time dealing with CRPS/RSD. Today, I continue to try my best to help around the house (e.g., cleaning dishes, dusting, some grocery shopping, and helping with my Grandchildren).
I also enjoy listening to music, reading, watching TV, and using my computer to review reputable websites and data (especially scientific and newsworthy sites).
What is one thing you wish those without CRPS/RSD could understand?
Those without CRPS/RSD need to think to themselves, “Why would he be making up this CRPS/RSD story (see above and below)?” And “No, it is not because I want pain-killing or mind-altering drugs!” And “No, it is not because I am lazy and do not want to work!” (In fact, I loved my >30 years of Public Health Service and Clinical Research. I miss it dearly and feel totally incomplete because of not being able to continue to work in my field of expertise.)
What advice would you give to newly diagnosed Warriors?
Try your best to gather as much scientifically accurate medical information as possible. Please, please use reputable Public Health Sites ONLY (e.g., CDC, NIH, FDA, WHO, RSDSA) and your own local, reputable Public Health Doctors and Nurses. Ask as many questions as possible. No question is a bad question.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?

RSDS.org (RSDSA) is real and is not a figment of your imagination. You are NOT alone! And I promise, with more funding and clinical research, we will indeed, someday soon, understand CRPS/RSD better AND one day, someday soon, all CRPS/RSD patients will have at least one highly effective treatment. In fact, one day, someday soon, all CRPS/RSD patients will be able to return to work (if currently disabled), too.

And, on the lighter side of things, I am hoping that someday soon we will all know which acronym to use for our disorder (CRPS-1 and CRPS-2 v. RSD, for example).
What activities or treatments have helped you find temporary or long term relief?
Firstly, for years I have unsuccessfully tried every “known” therapy. Several years of daily physical therapy (including pool therapy) without much success, acupuncture (painful and did not reduce my pain), back surgery (ketamine was used during the surgery; my pain was reduced for a few weeks but then returned), and finally, several years of pain management with morphine and oxycodone. Unfortunately, nothing really worked.
Several years ago, I had tried to receive experimental IV ketamine. My insurance, however, would not approve experimental IV ketamine. Recently, I investigated a spinal implant for pain control. However, I decided against having a spinal implant due to various reasons (e.g., possible bleeding complications, avoid another surgery episode).
While the morphine and oxycodone initially helped to reduce my pain somewhat, eventually they both seemed to reduce my pain less effectively. In fact, at times, my pain seemed to be exacerbated by the oxycodone.
During the pandemic, however, I weaned myself off of the morphine and oxycodone. Luckily, eventually, my Primary Care Physician was able to prescribe medical marijuana. Undoubtedly, for me at least, medical marijuana treats CRPS/RSD much better than either long-term morphine and/or long-term oxycodone. While not perfect, medical marijuana has significantly helped my mental status, as well as reduce my pain somewhat.
In addition to currently using medical marijuana, I continue to require ibuprofen, baclofen, zolpidem, loperamide, and sertraline to help various CRPS/RSD symptoms somewhat.
Without a doubt, the best therapy for CRPS/RSD (or anything else for that matter) is spending time with my grandchildren. I have been lucky enough to live with two (2) of my four (4) grandchildren for their entire lives (16 months old and 6 years old).
Lastly, listening to music is also extremely beneficial and therapeutic.
Anything else you would like to add?
Please stay safe and healthy. And please get vaccinated.

5 Comments

  1. Barbara Schaffer

    You have found that grandchildren, music , and being helpful have been the best therapies for you as I believe it is for all of us but I want to give you 2 suggestions that might help:1) Stop blaming yourself for any of this because you do not control the course of your disease. As my doctor said to me…Positive thoughts can help it be easier to live with this monster but it is a systemic disease which we cannot control
    2). Do not just miss your career in Public Health…get involved. We can use all of the knowledge that you can read and understand. I have had RSD(Really Stupid Disease) for 33 years. I have been through so much but that story isn’t needed for this point. For many years, I ran a support group and part of what we did was interpret medical studies so that everyone could understand them. Dr Schwartzman gave me a few of them and he approved of my interpretation. This was between 1987 and 1993. Yes before there was much of an internet. Join a group and help get the truth and the questions in front of as many people as possible, who live with this disease and their medical team.
    My grand sons are 16, 24 and 25. I was lucky with my husband to care for them from birth to college and besides raising their mother, it has been the joy of my life. Without RSD? Who know how close we would have been.

  2. Reggie G

    My daughter has had CRPS for just over 4 years and of course we have tried almost everything. About 7 weeks ago we did Dr Traci’s program and it worked. She has been pain free for 6 weeks and she is able to eat dairy and protein again. She is off almost all her pain meds. She is in the 90 day follow up period right now so she is weaning off all of her pain meds. Here is Dr. Traci’s web site. I know everything doesn’t work for everybody but it’s definitely worth a look.
    https://holisticcenteredtreatment.com/

  3. Reggie

    My daughter has had CRPS for just over 4 years and of course we have tried almost everything. About 7 weeks ago we did Dr Traci’s program and it worked. She has been pain free for 6 weeks and she is able to eat dairy and protein again. She is off almost all her pain meds. She is in the 90 day follow up period right now so she is weaning off all of her pain meds. Here is Dr. Traci’s web site. I know everything doesn’t work for everybody but it’s definitely worth a look.
    https://holisticcenteredtreatment.com/

  4. Nancy

    I have found learning to do a Sphnoid block myself with 4% liquid lidocaine. That with Klonopin to get the acetylcholine to flow down the mylan sheath stops the pain. The pain is also related to inflammation, so Paractin supplement is a natural anti inflammatory.

  5. Winnie Danielsen

    I am Danish, live in Copenhagen Denmark.
    I have talked to 4 patients with severe CRPS, they got in touch with an anesthetist named Christian Gerlif, at Vejle hospital (Denmark). He uses his lunch break at the hospital to receive patients with CRPS, he injects 2 ml of Robivacain into the affected area, then he trains the patient to inject Robivacain into the affected area when the pain returns, it can be up to 5-6 times a day. But as the days go by and the brain has registered that now it is everyday, you inject fewer and fewer times. The 4 people I have talked to are now in remission and are no longer using Robivacain. He has participated in an interview on Danish TV. This is extremely interesting for us who suffer. You may find these patient on the Danish https://www.facebook.com/groups/154909228507755/?__tn__=%2CdFB group

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