Independence Redefined

Written by Elisa Friedlander for the RSDSA blog.

Hello dear readers! This post below is from an article I wrote a few months ago. It was published in the Inner Peace Column of our local newspaper, the Ashland Tidings. Enjoy, and please pass on! Click here for the link to her article.

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it’s been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, “Great! You can finally be independent!” There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My “response” came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don’t think so.

“I did it myself!” It’s ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we’ve fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?

In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn’t even help myself. If I couldn’t cut my own food at dinner; if I no longer had my work and I wasn’t able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that’s what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf’s mind wasn’t really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they’re meant to become therapists and help people get perspective on their inner-s (elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means–and what it doesn’t. I realized independence isn’t driving to an appointment. That’s convenience. It’s not lifting a bag or walking. That’smobility. It isn’t hearing, or talking. Those are communication modalities.

Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we’re in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.

So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease…something we can all relate to (orwill relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing–always lending a helping hand along the way.

My L-Arginine Story

Written by Katrina Gould

I’ve had CRPS/RSD 25 plus years from a devastating injury to my left brachial plexus. I slipped and fell backwards in a parking lot and violently jammed my left arm underneath me.  As a result I have severe nerve pain in the upper left quadrant of my body, including my chest, neck, back, and especially my left shoulder, arm, and hand.

My neurologist is always working to find relief for the excruciating pain that his CRPS/RSD patients suffer, including me.  And I love him for it, because those of you that have it know how unrelenting this pain is.

Several months ago, Dr Neurologist’s latest experiment was to prescribe the over-the-counter amino acid L-Arginine to reduce my CRPS/RSD pain.  Dr Neurologist told me that L-Arginine increases blood flow in various areas of the body including the heart, head, and eyes, and it enhances vascular function.  He also told me that, to his knowledge, there are not any circumstances under which L-Arginine would be contraindicated and it would not interfere with any blood thinners.

Once Dr. Neurologist and I got my L- Arginine dosage high enough, the amino acid began to take the edge off the nerve pain.  It actually started to work!

As I took L-Arginine longer and more consistently, I got more relief.  Because I feel warm when it increases the blood flow in my body, it also helped me this winter with my extreme sensitivity to the cold weather.

Let me be clear that L-Arginine has not permanently healed my CRPS/RSD.  I do have to keep taking it to renew the relief effect.  But as those of you with CRPS/RSD know, taking a few pills every day is a small price to pay for any relief, let alone measurable relief.

I usually take 2000 mg per day, divided up into four doses of 500 mg each. I take more when I have a flare. My daily dosage is substantially more than the label recommends, but I take that amount with the approval of my neurologist.  I don’t experience any stomach upset when I take it which is a huge blessing.

I can buy 50 1000 mg caplets of L-Arginine at my local grocery story for about $5.50, for a cost of about $.11 per pill. They are easy to break in half.

Dr. Neurologist told me today during my recheck appointment that he has prescribed L-Arginine for all of his CRPS/RSD patients, and “all of them are saying the same thing you are saying:  that L-Arginine has been a miracle in their lives in terms of reducing their pain.”

I understand L-Arginine may not work for everyone.  I also know it is very easy to get evangelical about a treatment or medicine that works well for us individually because we are so excited about our own relief.  And also because we have such compassion for anyone else with our same diagnosis.

I am sending you my story of relief with L-Arginine as a beginning point for your own research and investigation if you are interested. You and your doctors know your bodies best.

Because each of us has a unique medical profile, you absolutely must consult with your physician before you consider making any changes, including taking L-Arginine.

This information and my story are only related as anecdotal and are not intended as medical advice in any way.

I do wish you complete and total relief and healing from the hideous pain of CRPS/RSD. If you do try L-Arginine please share your results with me.  I would love to be able to tell Dr. Neurologist about it and encourage him to share all the results with the medical community.

It would be a fine thing if we could determine if L-Arginine could bring even partial relief to a significant portion of CRPS/RSD patients.  I’m very interested to hear what you and your physicians have to say about this experiment and your results, if any.

Relief, healing, and peace be with you today and every day.

This blog is not intended to provide advice on personal medical matters or to substitute for consultation with a physician.

Reach out to Katrina Gould via [email protected].

Steroids for Pain Flare

Written by Steven Richeimer, MD Chief, Division of Pain Medicine
Professor of Anesthesiology & Psychiatry
Director, Online Master Degree in Pain Medicine
University of Southern California

Are steroids useful in the treatment of complex regional pain syndrome?

Steroids are one of the oldest treatments for complex regional pain syndrome. They appear to be most effective in the very early stages of the condition, or during acute flares.

How much steroid should be taken, and for how long?

For new onset of symptoms of complex regional pain syndrome, I typically treat patients with either a 12 day or an 18 day course. Methylprednisolone is available in blister packs (commonly referred to as Medrol dosepacks). Each dosepack is a six day treatment course. We will use two dosepacks in an alternating fashion so that the patient will get 24 mg of methylprednisolone on day one and on day two, then 20 mg on day three and four, and continuing to reduce the dose by 4 mg every two days. For more severe symptoms, we may use prednisone, starting at 60 milligrams per day for three days, decreasing the dose every three days until the course of treatment is completed after 18 days. For acute flares of CRPS, I will. Typically the limit usage to a six day course of methylprednisolone (a single dose pack).

Are there risks of using steroids?

The use of steroids is associated with multiple side effects and potential complications that is why we are so careful to limit their use to short time periods. Complications include increase blood sugar, increase blood pressure, osteoporosis, thinning of head hair, increased facial or bodily hair, increased weight especially in the face and abdomen, muscle atrophy, easy bruising, thinning of the skin, and effects on mood and cognition. Even this extensive list is not a comprehensive list of all tile potential problems with the use of steroids.

Given these risks, should a patient with complex regional pain syndrome still consider the use of steroids as a possible treatment?

In the vast majority of situations steroids are not appropriate for chronic treatment of CRPS. Nevertheless, they are potentially very useful for brief treatment of the acute symptoms that might be seen with new onset or flares. For brief treatment courses, the side effects are usually minimal to mild. For patients who have repetitive flares, I will limit the use of a six-day course of steroids to two to three times per year.

Why do steroids work?

This is far from clear, but steroids have several properties that seem to be helpful. Steroids reduce the abnormal firing of damaged or irritated nerves. In addition, steroids are powerful anti-inflammatory agents and also suppressors of immune function. At least one component of CRPS appears to be an autoimmune disorder: The anti-inflammatory and immunosuppressive properties of steroids appears to be very helpful for acute neuropathic pain conditions, including CRPS.