do you need people to understand your condition?


Then you might want to give this article a read.

Seeking to be Understood: The Need for Approval

“…The truth is, many of us are looking for the approval of those closest to us on some level or another. And often this is disguised by the desire to have someone understand what we are talking about or going through, anything important to us about ourselves. I always thought I just wanted them to “get it.” In reality, I wanted them to get it so that they would be okay with me.

Let’s take another example. I once was dealing with a bad physical illness but it was not being diagnosed by doctors. I felt afraid that those around me would think it wasn’t so bad and I was imagining it. And I was very upset when they would get frustrated with me for my fatigue when I couldn’t stop it myself and was trying everything. I began doing research online and explaining to my loved ones what i was finding that I knew was applicable. But sometimes they would believe what I knew, and sometimes they wouldn’t, no matter how I explained it.

I realized that I needed to begin changing this focus on other people in order to feel peace in myself. And I knew that I had to begin letting myself know that I am my own person, and if I know something myself, that is enough…


Pain and Imagery

Lately I have been looking around online to see what new things people might be trying in order to help ease their RSD pain. One thing I can’t help but notice: the overwhelming amount of fire imagery. Everywhere you look there are pictures of flames. I am guessing the idea is to bring more attention and awareness of the pain to those without RSD. But is it bringing more attention and awareness of the pain in those with RSD? And is the unintended consequence more pain?

I can feel my body respond to those images and it’s not pleasant. If I see the burning, I feel it. Obviously that’s my experience. We are all different.  But since guided imagery and visualization is part of pain management, why are we passing around pictures that might exacerbate pain?  Maybe we could trade those in for cooling, more calm-inducing images.  I wonder if there would be a collective benefit overall in reducing pain for RSD patients who spend a lot of time on line. It certainly seems like the RSD community online is overwhelmingly supportive and positive. Maybe the online community can also be a catalyst for pain reduction based solely on what we are looking at.

From an article posted below from

“Visualization, often called guided imagery (link is external), or creative visualization, is a powerful, natural way to deal with chronic pain. It involves imagining, in great detail, an ideal situation while experiencing the emotions that would emerge from that best-case-scenario. So, if you’re feeling locked up in pain, you would imagine a vibrant, healthy, comfortable body and allow yourself to feel what that would be like. Stressed out about work? You could visualize your day flowing with ease…According to one study published in Alternative Therapies in Health and Medicine, levels of cortisol, the so-called stress hormone, drop significantly in people who participate in a guided imagery session. Other research has shown that when stressful, anxiety-producing experiences (link is external) are replaced with healthier, happier, positive mental images people relax significantly and that helps folks feel better, especially since stress can often cause pain to flair.”

Relaxation-response techniques could reduce the need for health care services by 43 percent

I love seeing a study like this out of a respected hospital such as Massachusetts General Hospital.

“Relaxation-response techniques, such as meditation, yoga, and prayer, could reduce the need for health care services by 43 percent, according to a study at Harvard-affiliated Massachusetts General Hospital (MGH) that looked at participants in a relaxation-response-focused training program…The relaxation response was first described more than 40 years ago by Harvard Medical School Professor Herbert Benson, founder and director emeritus of the BHI and a co-author of the current study. The physiologic opposite of the well-documented fight-or-flight response, the relaxation response is elicited by practices including meditation, deep breathing, and prayer, and has been shown to be helpful in the treatment of stress-related disorders ranging from anxiety to hypertension”

“I think of it this way: There are many gates to wellness, but not everyone is ready to walk through a particular gate at a given time. From a public health perspective, it is better to be prepared to offer these tools to people in their customary settings than to wait for them to seek out these interventions. For that reason, we feel that mind-body interventions — which are both low-cost and essentially risk-free — should perhaps be incorporated into regular preventive care.”

Advice and Pain

Everywhere you click now you read things like: “10 things not to say to someone with (insert affliction here).” Sometimes it’s just 5 things. There are lists upon lists of things not to say to people. And definitely do not give unsolicited advice. That’s apparently a big no-no. But what if this perceived protection and (what feels like) rehearsed empathy are actually hurting us?

As someone who has put her foot in her mouth as a matter of routine her entire life, I think I can understand the nice idea behind the daily deluge of “what not to dos” out there. Trust me when I say, I am sure I could use a filter. But I think, at some level, we might be losing out. What happens when people are too shy to offer their words of advice, love and support in a natural, unfiltered state? I don’t know the answer to that. That’s rhetorical…

If the people who impacted my health had abided by some of these new social rules, I wouldn’t have improved as much as I have. I am certain of that. If I only accept advice that I seek out, how am I getting to information beyond the scope of my every day thinking? The best pieces of advice that helped my health, I never asked for them. That’s probably most likely because I didn’t know to ask. I can tell you the odds of me asking about qi gong before I ever heard the term qi gong, are probably slim to none.

Perhaps you’re one of those people who believe we meet others for a reason. What if those others feel muzzled by social norms about what is appropriate to say? And in a world that has become less and less connected personally, maybe causing people to overthink their genuine words of support and assistance is doing even more damage.

Of course, I want to always be kind but I know periodically I hurt people’s feelings. Hopefully motives shine through.  I can’t help but think that this sudden intolerance for the words of others might just cause us to miss out on that thing, some new information that could help us overcome pain. I am thankful that certain people in my life didn’t adhere to these lists. I would not be where I am now.

Am I turning into Andy Rooney?

Ego, Medicine and RSD

No, this isn’t a blog bashing your doctor’s sh*tty bedside manner. It’s also not about the doctor who makes you feel like you don’t understand your own condition (even though you have a feeling you “get it” maybe more than she does). I could blog about those things. I could blog about those ad nauseam. I will spare you my past frustration. The ego I am thinking of is ours: the patient’s.

I think in RSD we can hold ourselves back. And I think ego is the culprit.

Often we won’t entertain the idea that something we are doing or not doing just might impact our health. We believe in a pill but not healthy food. We believe in ketamine but not meditation. When we’ve worked out and lost weight, then we take credit. That we do.   But in terms of a medical condition like RSD, it seems that we believe someone else has to help us and that someone has to have many degrees and awards framed on the wall. And that we need drugs and shots – lots of drugs and shots. I say this because this is where I was coming from. It feels severe so the treatment needs to be powerful.

But what if treatment doesn’t need to be powerful drugs or shots?

Do our egos stop us from doing things that have the potential to change our health simply because the treatment doesn’t seem impressively dire enough? Is a pain experience somehow less intense if you treat it with qi gong instead of nerve blocks?

If the cure for Ebola turned out to be somewhat scientifically simple, would that imply the disease was never fatal to begin with?  No, that’s insane. It seems like in the world of pain and RSD we might be thinking that the treatment method is somehow indicative of the severity of ones experience. And that we are less accepting of alternative methods perhaps because we fear a downgrade of the perception of what we are going through.

“Cure for chronic pain found: World first as patient fitted with permanent spinal cord implant”

“Doctors perform world-first treatment for chronic pain, fitting an implant which could reduce reliance on painkillers and may help people with Parkinson’s disease”

“Doctors in Australia have carried out a pioneering procedure to treat chronic pain, fitting a permanent spinal cord implant which can record signals from the nervous system and adjust the strength of impulses sent to affected areas. The procedure has been hailed as a breakthrough for treatment of chronic pain and could help patients to avoid pain-killers, which can be extremely costly.”

“Human brain may be designed to give us hallucinations, scientists say”

Cool article…

“Visions and sounds that do not exist can be generated by the brain’s habit of predicting what it expects to experience, filling in missing gaps in reality, the research shows.   It is this ability that allows you to recognise a fast-moving black shape in your living room as the cat, even though it was little more than a blur. Professor Paul Fletcher, from the Department of Psychiatry at Cambridge University, said: “Having a predictive brain makes us efficient and adept at creating a coherent picture of an ambiguous and complex world. But it also means we are not very far away from perceiving things that aren’t actually there, which is the definition of a hallucination.

“The Cambridge team, together with colleagues from Cardiff University, set up an experiment to see if people with psychotic tendencies are better at mentally filling in missing parts of pictures…Those with very early signs of psychosis performed better than people with no mental illness.”

this is why I believe qi gong works for rsd

Chronic Pain May Be About Rewiring The Brain Instead Of Using Analgesics

“We now know that absolutely in acute pain, there’s some form of injury — some form of danger signal — and we can modify pain processing within the central nervous system to some extent using a drug like a morphine. But when it switches over to chronic pain, that’s when it becomes really difficult,” Hutchinson added.

When I clicked on this article and saw the date, my recent late night Art Bell youtube habits maybe jumped to a level of concern. I saw “posted 12/10/15” and instead of thinking “oh it’s from another country,” my first thought was “ooh a time traveler!”  Hahaha ahhhh oh boy.  If you ever listened to Art Bell, that oddly makes sense.

qi gong for fibromyalgia: a study

Before you say, “but I don’t have fibro, I have RSD,” read this anyway.  There’s a chance that if you’re in the midst of a gnarly pain cycle, you might have some fibro pain in there.  And qi gong just might be the thing to relieve it.

“Many subjects reported reductions in other FMS symptoms, and two reported they were completely symptom-free. Results from the 3-month follow-up indicated some slight rebound from the post-treatment measures, but still much better than those observed at baseline.”

How often do you read the words “completely symptom-free?”

This study is based on external qi gong.  That’s when a practitioner applies qi gong energy to you rather than you meditating and cultivating energy internally by yourself.  Think of it like getting acupuncture needles from an acupuncturist but there’s no needles.  In this particular study, the practitioner administered “acupressure, qi emission, qi balancing, and magnetic cupping on each individual.”  Below is a link to the study.  These results (listed below) are impressive.


Design:  Ten patients with FMS completed five to seven sessions of EQT over 3 weeks with pre- and posttreatment assessment and a 3-month follow-up. Each treatment lasted approximately 40 minutes.

Outcome Measures: Tender point count (TPC) and Fibromyalgia Impact Questionnaire (FIQ) were the primary measures. McGill Pain Questionnaire (MPQ), Beck Depression Inventory (BDI), anxiety, and self-efficacy were the secondary outcomes.

The results:

mean tender point count (TPC): reduced from 136.6 to 59.5

mean McGill Pain Questionnaire (MPQ): decreased from 27.0 to 7.2;

mean Fibromyalgia Impact Questionnaire (FIQ): reduced from 70.1 to 37.3

mean Beck Depression Inventory (BDI): decreased from 24.3 to 8.3