Life in Pain:  Hope

Life in Pain: Hope

(Editor’s note: In her last column, Amanda wrote about her first week of treatment with Calmare therapy at Pain Relief of Oregon in West Linn, OR. Calmare uses electricity to block pain signals in people with chronic neuropathic pain, including Complex Regional Pain Syndrome (CRPS), which Amanda has suffered from over the last two years.)

One thing that I’ve learned through this whole process is that what works today to help with the pain, may not help tomorrow. A treatment may takes days or weeks to take effect. Medications need to be constantly increased to maintain effectiveness, if they’re effective at all. Treatments and therapies that work for one person may not work for someone else.

image (5)I guess that’s why I’ve waited so long to write the follow up to my Calmare treatment.

I’ve been waiting for the effectiveness to go away. To wake up one morning in pain again. That is something that has happened to me with every procedure and medication thus far — either they aren’t effective, have too many side effects, or the results don’t last.

It’s part of the reason that I’ve been so conservative about writing how well I’m doing. I feel like I might jinx it. The fact that Calmare therapy worked so quickly and so effectively seemed too good to be true.

It has been about a month since I finished my initial 14-day treatment. So far, I’ve woken up free of neuropathic pain almost everyday. I’ve had one flare with a one-hour booster on the Calmare device, but other than that I’ve been doing great.

That does not mean that other things don’t hurt. I still have a collapsed arch on my left foot, a lot of muscle and joint atrophy which has lead to some of my joints being painful (mostly my ankles), and my teeth have decayed because of all the medications that I’ve been on over the last few years. But those are “normal” pains. Pain that can be taken care of with some ibuprofen and ice. It’s a huge change.

Amanda and Dobby 2There is no doubt in my mind that Calmare has changed my life for the better. Talking to others with neuropathic pain that have had the treatment, they’ve had the same story as mine. Each day waking up expecting that relentless, mind-numbing pain to return. But it hasn’t.

I know that it’s going to and that I’m going to need boosters to keep the pain at bay, but that is manageable and a small inconvenience compared to the gains.

I feel like I’ve my life back. Like there is hope for a future where pain doesn’t control my life, which is something that I’ve been missing the last few years. There is excitement as I look to the future; something that I didn’t think would happen again.

The ability to look forward with hope is something that I thought I lost forever — something that many who suffer from debilitating chronic pain lose. Finding a treatment that works not only heals the body, but also the soul.

My relationship with my husband has gotten better, but it still takes work. At least now he looks at me like I’m his wife, not his burden or his patient.

Since becoming more mobile and active I’ve lost twenty pounds. I feel more like my old self, my pre-CRPS self, than I have in years. It’s a great feeling.

Amanda Siebe

Amanda Siebe

Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her battle with chronic pain and Complex Regional Pain Syndrome (CRPS) in her blog “Life in Pain.”

Amanda’s Calmare treatments at Pain Relief of Oregon are being provided at no cost to her. In exchange, Amanda has attended open houses at the clinic to talk about CRPS, how it has affected her life, and the various treatments she has received.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Melinda Harris

That is great that people are progressing. Everyone should not be afraid to hide be hind the past pain because that is the past. Being worried about “jinx” ing “it”, keeps you in the past. Time to move forward and for you of those who have had positive outcome; whether it would be ketiimine. calmare, or any other treatments. Time to embrace the future and not hide behind. Some have chosen to be in the public eye to write the life and pain and how it impact themselves and everyone around them. This inckudes some of us have lost more than ourselves, dear friends, aquaintances, or anyone else in oour lives: especially family. Our disease{s} have not just put us in constant pain, but it has also over taken our personalities who we once were, our individualism, values, remorse, anger, resentment towards others, grief because we think others are judging us, pulling away, times not giving attention when we demand it and the list can go on. We go through the same emotional tendencies just like loosing a loved one from death, break ups, devorces, depression. Either way my point it is the same steps of the cycle. you receive the news, the sadden at first kicks in, we become angry, blaming, sad again, then we start judging ourselves,but mainly the family or the people around them because we think they don’t understand, or we give them time to understand so we become angier than we have ever been and believe they are out to get us and some time paranoid and make haste decisions and they are always end up bad. I believe the term since I been following a few individual blogs and appears to always be ending result that in many cases cannot be repaired. Some of the bloggers with the diease have called their friends/family which has cost them the loss of relationship and sometimes irrepairable. (If I remember here it was always called “Naysayer.” } However, when I rxplore the term, “Naysayer,” I look back at my own personal view when I was first diagnosed and my own personal blogs. As I read through my blog,I realized it more belonged in a person memior or a diary, because was the myself who belonged in that definition not the people around me, but myselfand because of that cycle of grief we have to deal with on our own personally because there is no manual how to deal with a diease, death, living life, loving, marriagehaving and raising children, or how to feel and what to feel/when. So ladies, and anyother readers of blogs, don’t be feel like is will be “jinxed” if you do or don’ t talk about it, but what you can do is provide valuable infomation to others that are struggling just like you were in the beginning when you were initially diagnosed or started having symptoms you didn’t understand. Newbies are going through this emotional cycle, everyone couple of minutes of every… Read more »

Mary M

I know how you feel. While calmare didn’t end up working out (long story) i have had moments of great relief from ketamine. I am going in for another outpatient infusion tomorrow in fact! I go about every 6 weeks. It’s not a CURE for me- but it lets me tolerate a sheet over me at least 6 out of 7 nights and i can def tell it’s been 7 weeks since my last! Sometimes the first day or two i can feel as low as a ZERO. It feels UNREAL, but I have been there and then the pain has come back. so for me it is about not getting my hopes WAY HIGH that this will be permanent (the pain relief) in such a way that the VERY SECOND I feel a flare i FREAK- because that will just make it WORSE- it could just be a FLARE or it could be coming back- but for sure if i am anxious about it it wont help. HOWEVER, I dont want to live a life where when i have relief i’m afraid to do anything to “jinx it”. For me i use the moments i have of relief where i’m able to get out of the house- hang out with friends and family- be almost “normal” (even if a day or two i have to rest in between) I remember those moments as “fuel for hope” for my bad days- I know that i will likely ALWAYS have bad days- but years ago I thought the only way i’d ever feel a “ZERO out of ten” pain or EVEN a “TWO” out of ten would be if I was DEAD! So yes i’d LOVE to be in a ZERO (even a TWO) 24/7 but it’s not my reality at this time, but since i’ve had these moments now- i feel i’m getting closer to maybe this becoming a reality- where more days i can have this! ANd yes there are other types of pain too. And i know that for me having had RSD for SO LONG (for me almost 9 years) yes i have some atrophy from not being able to keep too active- and I have pain from tension and muslce spasms because when im in an RSD flare i TENSE UP as a reaction- so even when the RSD pain settles some i have spasms and muscle tightness- so im working on getting accupunture and physical manipulation with a Physical medicine/rehab dr but he is VERY KNOWLEDGEABLE about RSD (he knows how to help me stretch and stuff without super aggravating the RSD)

Mellissa Rose

I just got back from a 10-day Calmare treatment. I had mine in Ruthersford, NJ.

I feel the same way – I don’t want to jinx it. I went in with a pain level of 9 on pain pills. I was diagnosed with RSD in my left knee in December.

I am now on just two Percocet (a huge decrease for me and I am hoping to do away with those soon!) and I am walking without a cane.

Thank you for your blog. Calmare also helped me and I am hoping it lasts 🙂