My CRPS Story: Painted into a Corner – a Follow up

My CRPS Story: Painted into a Corner – a Follow up

By Konnie Parke. 

In May of 2016 I wrote an article entitled Painted into a Corner. In that piece, I describe the dilemma I faced following my decision to wean from opiate medications used to treat the pain of Complex Regional Pain Syndrome (CRPS) in the hope that my doctor would support my desire to try low dose naltrexone (LDN).

Two and a half years later I wish to continue the story. I was given the LDN by my physician. It had to be specially compounded because the dosage was so low and therefore not covered by my insurance. Within two weeks I started to feel some pain relief. I also used a biofeedback technique called “Tapping” otherwise known as Emotional Freedom Technique (EFT). This technique not only helped me address my pain, it helped me to address the emotional dynamics of dealing with chronic, irretraceable pain.

Konnie Parke

I decided I had to find a way to exercise. Rather than focus on exercises I could not do, I considered what I could do. I had always loved to swim. However, water colder than 90 degrees caused the capillaries in my leg to shut down and my leg turned blue and cold. I had tried a warmer pool at a physical therapy practice, but I had to fit my pool time into their schedule. I started to research swim spas as an option. It took almost two years to save enough to buy one – and we sacrificed one half of our garage to put it in. In January of this year, we installed my new swim spa in our garage and I set out for my first swim.

It lasted a total of 2 minutes.

So, yea, I was clearly out of shape. I swam daily and tracked my progress. I slowly started to gain stamina. More importantly, I found that the warm water and movement helped when the pain became unbearable. The water displaced 90% of my body weight so movement did not cause stress on my joints or muscles. Not only did I gain strength in my body, but I began to heal in other ways. I felt stronger psychologically each time I added a minute to my swim time. I felt like interacting with people more and slowly became more active. I felt a sense of well-being that I hadn’t felt for a very long time.

With each swim I came to understand that aqua therapy was a viable way of managing pain with added physical and psychological benefits. I wondered why alternate therapies, such as aqua therapy, were not promoted by doctors or paid for by insurance companies. Then I started to think about upcoming RSDSA fundraisers and how they not only raised funds for worthy causes, but raise awareness of issues surrounding chronic pain.

One day following a swim, I was joking with my husband that I would love to participate in a walk-a-thon if only I could swim it. The idea of a swim-a-thon was born. I decided to raise funds for RSDSA.org, as they were a lifeline for information when I was newly diagnosed with CRPS. We decided upon November as the month to hold it because it was CRPS awareness month. It would swim for seven hours to commemorate the seventh anniversary of when I developed CRPS. The date was set for November 17, 2018.

A seven hour swim was a far cry from my first two minute swim, but once the idea took root, it was there to stay. My husband and I spoke with our children and older grandchildren and gained their support. I contacted RSDSA and they got on board. A clever writer and fellow CRPS warrior came up with the name Swimming Against the Current which reflected my desire to push back against the status quo of treatment options for pain management. In addition the way I was fundraising was completely outside the realm of what is considered normal.

I believe that anyone who suffers with chronic pain eventually comes to understand that they must swim against the current in order to adapt. Perhaps that means coming to terms with using medications, including opiates, in spite of the demonization we’ve seen these past few years. Perhaps that means exploring alternative/complementary treatments such as biofeedback, bariatric treatments, aqua therapy, or any number of options. Unfortunately, most of the above mentioned are not covered by insurance and are therefore cost prohibitive.

Herein lies my ulterior motive.

It is said that money talks. Before I started my swimming program I had a complete physical including blood tests. My blood sugar was borderline diabetic. My triglycerides were high and I was 45 lbs. heavier. Subsequent tests have show my blood sugar within normal limits and a lower resting pulse rate indicating improved cardiovascular health. I’ve had fewer injections for pain, and I’ve lowered my dose of Lyrica from 300mg. /day to 25 mg. /day. I will submit a cost-savings analysis as evidence when I contact my insurance company to show that my efforts in the swim spa has saved them money. I plan to invite them to swim against the current, and to consider paying for alternative/complementary therapies on a trial basis for select individuals in hopes of seeing the value on their terms – saving money.

As of this writing, I have 5 days until the fundraiser. I think I am ready. I have found support by way of donations from people and companies who see the value of RSDSA’s mission and who support alternate/complementary therapies for pain management. The company I bought my swim spa from sees the value by refurbishing trade-in hot tubs and donating them to local disabled veterans. Perhaps others can as well.

In my opinion, unexpected consequences of this “war on opiates” has left a huge, gaping hole for those suffering chronic pain…a hole many are falling into without hope of rescue. A viable tool has been restricted or made unavailable for many without offering a different tool to help. Perhaps this is the time to plant in the minds of healthcare providers and insurers alike the idea that treatment options not previously considered may be cost-effective for them and beneficial to the recipient.

For more information on the fundraiser called Swimming Against the Current, go to https://www.firstgiving.com/fundraiser/konnie-parke/SwimmingAgainsttheCurrent

Or go to swimspalady.com.

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Authored by: Konnie Parke

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Toni

Therapies and pools cost money. I have lived in chronic pain for 32 years now and this past 10 has almost done me in. Being told that you need to go to three drs a month including a therapist to treat chronic pain with actual pain meds and being told you must pay $702 for a drug test monthly makes my choices gone. I cannot do this and now I struggle each day just to make it through. No one cares and I have actually been told to my face I need to get used to it like I haven’t lived this way for decades. Drs don’t care. No one does. Tests cost me $400 out of pocket and it has taken years just to be able to afford them and get actually diagnosed with DDD, Osteo, Fibro and Peripheral Neuropathy. I feel like terrorists at Gitmo get treated better then we do now since I am being sentenced to a life of horrid pain with no help for it.

Maureen M.

Konnie, I too have RSD/CRPS but it is limited to my left leg and right hip/thigh…post spine surgery.
Great story and the best of all to you on ‘swim day’! Wow! 7hours! I cannot even fathom doing that! After my last spine surgery (have had 4) and while living in CT. my doctor sent me to a physical therapy place with a heated pool for therapy. I also can only be in water 90+ and I loved it! Of all the therapies I’ve experienced, this was the best! The very warm water and buoyancy felt great to my body.
Four years ago I moved to Fla. and cannot find a therapeutic pool in my area. The water at my Y is too cold for me. My body craves it though!
I’m wondering how you weaned off of your meds and how long it took you?
Good luck and God bless you fine efforts! Maureen M.

Much of the unfortunate confusion stems from the fact that the only unit of the National Institutes of Health that is visible in media coverage on opioid issues, is the CDC. In reality, the CDC is the infectious-disease arm of NIH. The units of NIH with genuine expertise relatating to opioids are the NIMH and the NIDA, who’ve researched the human endogenous morphine system for decades.

The human body secretes it’s own morphine, as part of a biological clock that regulates sleep. Exercise stimulates production of morphine from dopamine.

So this clock system of which the CDC is ignorant, uses dopamine to wake us up and turns it into morphine that puts us back to sleep. This is why exercise can improve pain control for some people.

It also explains why a disabling illness that stops us from exercising, causes symptoms similar to morphine withdrawal. When we get a disease or injury that knocks us into bed for several days, we’ve stopped producing morphine and we become irritable.

The CDC needs to step aside and follow the lead of NIDA and NIMH. By ignoring decades of NIDA and NIMH research to ignorantly produce some Opioid Prescribing Guidleines, the CDC did much damage to patients while the Overdose Crisis continues to escalate. Pain treatment never caused the Overdose Crisis. And CDCs ignorance has done vastly more damage, than good.

Cindy

To the author and editors –

Great column, and I also just read the original one from 2016. BUT, please don’t use acronyms and assume that readers know what they mean.

For this column, I googled RSDSA and found what it meant. But for the 2016 column, I could find no definition of PMP. Maybe it’s Pain Manager Provider? But that doesn’t make sense to me. The one acronym from 2016 was explained, was the only one I knew — NP is Nurse Practitioner.

These columns are so important. I learn so much from them. But I dont’ and can’t learn as much as I would have if terms were defined.

I would never have known to consider Low Dose naltrexone as an opioid alternative (oh, thank you for defining LDN). And so I really do appreciate your columns.

HOUSE

Wow! Such drive and determination! Great story..

Laurie

Great job and very inspiring!
I tried many treatment modalities as I could find when diagnosed with Dystonia nealry half my life ago.
You go, girl!
I, unfortunately, am stuck (literally) with Botox injections into my spasming muscles and also fighting for the opiates that the gov is making increasingly difficult to get.
I used to be in great shape too! Yoga, weightlifting, walking, eating well.
It’s hard to do when your own muscles are tearing your body apart.
All I gots to say is “Bless the child who can”

Victim left suffering...

Fortunately, the Y offers anyone who would like to use their pool facilities the option of submitting an application to determine financial need for membership. Not only is it possible to receive a significant discount, it is possible for many ppl to become a member at no charge. My Y has an indoor and an outdoor pool.

State parks with pool facilities offer season passes much less expensively than per diem costs. For 77.00, I bought a season pass valid from Memorial Day- Labor Day.

For those with a “Silver Sneakers” insurance benefit, there are many participating providers which have pools. No co-payments required.

Alex

Konnie I applaud you! How awesome it is to hear a story about another CRPS warrier who chose to “Swim against the Current”. I too took that path, in many of the same ways but I was not able to find a place to swim so my physical hardening took longer. But again, like you each day, each milestone no matter how small was incredibly rewarding and it did help me both physically and psychologically. And like you I have a Doctor who thinks outside the box and supported my doing it myself when PT failed. I too have CRPS, mine is Stage 2 (of 3) and it is full body, Cold Type so I could really relate to your comment about your leg turning blue and cold. That something I deal with as well. I think that your idea of a way to promote awareness and to help fund RDSDS is terrific, and thank you for doing so. For me my goal of getting out of the wheel chair and actually going back to work was realized it was a long and painful process and every day is a victory. Even on days like today with the weather being awful and my pain level very high I’m here, on time, doing my job and feeling very proud of myself. Konnie, thanks so much for both of your articles – in the volunteer work that I do it is rare to here such a success story. Well done!