Take Control of Your Journey

Published on May 5, 2021 under RSDS General Info

Written by Joshua Borg for the RSDSA blog.

How and when did you develop CRPS/RSD?

In July of 2019 I slightly hit my shin against a piece of lawn equipment. Later that day I could tell something was wrong based on how it felt. In the following weeks and months, I visited with multiple doctors who ran multiple tests, yet none of them could explain my pain. After an EMG around February 2020, doctors noticed nerve damage in both legs. After ruling out almost everything else, they determined that I have CRPS.

What has daily life been like since your diagnosis?

In the simplest terms… different. Having had this for a little over 18 months now, I feel as though I have been on multiple journeys during that time. The first 9 months were full of a lot of confusion and frustration. Having this pain but no answer to what was causing it just did not make sense to me. Usually you have something wrong, you visit a doctor, and then they tell you how to fix it. I just kept getting “I don’t knows” from doctors. Through all this, the pain just kept fluctuating from day to day. My leg would swell and bruise at times, then go away days later. I felt very defeated most days since I had no answers or solutions.

I will always remember the day my doctor felt confident in diagnosing me with CRPS. I was hit with a rollercoaster of emotions within a matter of minutes. First was a sense of relief to finally have some kind of answer, but that quickly shifted to fear and sadness as I started to think about what this diagnosis now meant. I knew a little bit about CRPS by that time because a doctor had suggested it as a possibility, so I had already done some researching. I was flooded with emotion for what this meant for my life moving forward. It is quite an interesting feeling when you realize that your life, in that moment, has changed. 

With guidance from my doctors, we quickly shifted into action mode as I have been told one motto of CPRS is “move it or lose it.” I immediately started PT and was very nervous at the onset. Worried that a movement here or a tweak there would cause some kind of setback. In the coming weeks I began to grow more confident and started pushing myself more and more during my PT sessions. I then bought all the equipment so I could begin doing these sessions on my own time. Finding that line of pushing yourself to improve, but not pushing too hard was a struggle at first, but I’ve grown more comfortable with it as time has gone on. Outside of that I have focused a lot more on my spatial awareness. Seeing as how I have had negative responses from pretty minor injuries, I’m just much more aware now about removing potential hazards around me.

What is one thing you wish those without CRPS/RSD could understand?

The mental toll this takes on us. There is so much to find out and so many changes to make to our lifestyle, all of that can seem a bit overwhelming. More than anything I have noticed it creates a tremendous amount of brain fatigue. I have learned to give myself time to say “I’m tired, I’m not going to search for any answers today,” and then be ok with that decision. Because so much of CRPS is not visible, it can be really difficult for those who are unaffected to have an understanding of the total effects. A therapist explained to me that those with CRPS are often grieving the loss of their former selves. Almost everyone has had to grieve the loss of a loved one at some point in their lives, but it is a very unique experience to grieve the loss of the self that you once knew.

What advice would you give to newly diagnosed Warriors?

Be diligent and be your own advocate with doctors. Take control of your journey. And almost as important, try to build a great support system. I’m extremely fortunate in that my family and friends have been my rock through this journey. I have heard of circumstances where tensions can build because our symptoms are often “invisible” and it’s really tough for others to understand. My circle has been an incredible support to me throughout all of this.

The other thing I have learned is that it is ok to rest… both physically and emotionally. Sometimes I may be too sore to exercise, so I don’t. And some days my brain may be too tired to work on my emotional well-being, so I opt to watch a movie or give myself other distractions. It is ok to give yourself a break from all of it. The key thing is to make sure you eventually get back to working on yourself so you keep moving forward.

What activities or treatments have helped you find temporary or long term relief?

Physical therapy helped me a lot. I started about one year after my onset of CRPS. Initially I was pretty scared to let a doctor touch my leg or push too hard during an exercise. But they built a program that eased me into it at my own pace. My wife and I also adopted a dog and I truly believe he has been great emotional therapy. He has given me another thing to focus on instead of the pain.

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  1. Stephen M. Dorian

    Thank you,

    I am now a member of RSDS.org (RSDSA)!!!

    FYI – I was a Clinical Data Manager at DuPont Pharmaceuticals back in 1982. We studied various naltrexone neurological treatments in clinical trials back then. It would be amazing if new clinical trials indicate “low dose naltrexone” helps future RSD patients!!!

  2. Stephen M. Dorian

    When my RSD was starting (~10 years ago), I could actually sense (feel) the RSD traveling throughout my body…the upper extremities first, then the mid-section, followed by the lower extremities.

    I am now a member of RSDS.org (RSDSA)!!!Thank You for existing…

    FYI – I was a Clinical Data Manager at DuPont Pharmaceuticals back in 1982. We studied naltrexone. It would be amazing if new clinical trials indicate “low dose naltrexone” helps RSD!!!

  3. Stephen M. Dorian

    Me, again. I had taken both morphine and oxycontin for years for my RSD. At first, my pain was reduced. However, my head was not clear frequently (oxycontin). Eventually, my pain was no longer reduced with morphine and oxycontin. In fact, eventually my pain was increased, in my opinion, by the oxycontin. I also seemed to have an allergic reaction to the oxycontin (skin rashes). Diphenhydramine seemed to have helped, somewhat. Because of the pandemic, I was obviously not going to return monthly to my pain management office (because they soon discontinued phone visits). Therefore, I weaned myself off of morphine and oxycontin (“Thank you Covid-19!!!). Thankfully, my Primary Care Doctor was able to prescribe medical marijuana for me around AUG/2020. Undoubtedly, for me, medical marijuana treats RSD much better than long-term morphine and/or long-term oxycontin. Previously, I indicated that medical marijuana was for my head, not for my pain. Upon further review, however, I can now (04JUN2021) honestly say that medical marijuana is good for both (my head and my pain). Obviously, not perfect. However, medical marijuana is the best RSD treatment I have been fortunate enough to be prescribed and fortunate enough to use.

  4. Stephen M. Dorian

    To supplement my previous two (2) comments regarding my RSD >10 years worsening history, I absolutely must never forget how much help my son, Paul, and my daughter-in-law, Amanda, have been to me. They have been kind enough to help me and allow me to live in their home for >10 years. Without a doubt, the best therapy for RSD (or anything else for that matter) is spending time with my Grandchildren. I love all four (4) of my Grandchildren (Cassidy, Georgie, Nicholas, and Alex). I have been lucky enough to live with Nicholas (6 years old) and Alex (15 months old) for their entire lives. Lastly, listening to music is extremely therapeutic. Again, thanks for listening.

  5. Stephen M. Dorian

    Yesterday, 03JUN2021, I wrote (for the first and only time) about my worsening and ongoing RSD (>10 years). Unfortunately, I forgot to mention how important zolpidem has been for me. Obviously, sleeping is almost impossible with RSD. For years, I even tried to “sleep” in a recliner. Nevertheless, in a bed or in a recliner, zolpidem was (and still is) the only way I can get any sleep (~3 hours/night). In fact, without zolpidem, I am certain that my lack of sleep would have killed me years ago. Another medication I forgot to mention yesterday was loperamide. I seem to have recurring diarrhea every 2 – 3 weeks for an unknown reason; using an appropriate dose, loperamide works almost immediately. I would like to end, however, on a good note. On 23APR2021, I had my yearly blood chemistry, hematology, and urinalyses tests completed; amazingly, the test results were ALL NORMAL (for the first time in my entire life, since childhood). In addition, my DEXA bone calcium scan done 01MAY2021, was ALSO NORMAL (w/in 1SD of a young person) for the first time ever. So, perhaps there is some hope…Lastly, please remember to get your Covid-19 vaccinations (to help yourself, your family, your neighbors, your country, and our world). For the record, I received my first Covid-19 vaccination on 28MAR2021; I received my second Covid-19 vaccination on 25APR2021. Again, thanks for listening and thanks for your efforts in better understanding RSD (CRPS) and, hopefully, one day developing at least one effective treatment for RSD (CRPS).

  6. Stephen M. Dorian

    I am a 64-year-old disabled/retired microbiologist. I have had RSD for over 10 years (started after my R wrist was smashed by a revolving door at my downtown Philadelphia office). The IV needle in my L arm (during surgery to repair tendon in my R wrist smashed by revolving door) was also a definite cause of my RSD. I have tried almost every “known” therapy, including several years of physical rehabilitation (including pool therapy), acupuncture, back surgery (ketamine worked, until it didn’t)
    several more years of pain management with morphine and oxycontin (both have since ceased to relieve my pain and I have weaned myself off of both, during the pandemic.) I now use medical marijuana (helps my head, not my pain). In the past, I had tried to be treated with IV Ketamine, however, Medicare would unfortunately not approve experimental Ketamine treatment for me. Recently, I investigated a spinal pain management implant; however, my platelets have been low for a few years (unknown reason). I currently also use ibuprofen, baclofen, and sertraline to help me somewhat. I currently deal with no hair on my arms or legs (Yes, I have RSD in both my upper and lower extremities.); dying finger nails; toe nails which are barely growing (with other bleeding issues); teeth losing their enamel and life; severe pain, tingling and numbness (with occasional swelling) in my hands and feet; muscle spasms and pain in my arms, legs, back and neck; off and on redness in both arms; temperature changes throughout my body (fingers, hands, toes, feet); and on and on. I just hope one day future RSD patients will have at least one effective treatment. So far we have failed in understanding and treating RSD (CRPS). Thank you, however, for listening. I am sure I have not included everything; however, I tried.

  7. Janet L Wysong

    Joshua Borg – I just read your RSDSA blog and found it very interesting and full of great information. I do not have RSDSA but have Multiple Sclerosis. I recently found out a good friend of mine was diagnosed with RSDSA and I wanted to learn more about this disease so I could understand what she was living with day to day. When you were speaking about “Because so much of CRPS is not visible, it can be really difficult for those who are unaffected to have an understanding of the total effects” it reminded me of a book that was written for the MS community called “But You Look So Good.” People really don’t understand what they can not see or feel. I understand and I thank you for your heartfelt explanations and helping me to understand what my friend is living with.

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