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…


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.”

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.

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

green onion for RSD?

OK who knows.  But recently I’ve noticed circulation changes in my legs and feet as well as a change in how I sweat.   The only thing I’ve been doing differently is eating green onions nearly every day for a month or so in fairly large amounts. I’ve been eating at least one green onion but sometimes two a day.

Granted, it’s been extra warm here so I imagine perhaps some perspiration and circulation credit might belong to the sun.  But it’s been warm here all summer and for other years that RSD has been with me.  I still couldn’t sweat properly and my circulation has never been what it once was.  So, being the obsessive googler that I am, I looked up the health benefits of green onions.  Initially I was eating them for anti-fungal/anti-viral benefits to build my immunity and clear my digestive tract.  That was the extent of my motivation and knowledge of the potentials of what i now feel may be the most underrated onion out there.

I found this:

“Many other advantages of the green onions in medicine include that it clears out the respiratory tract and expels sputum or phlegm. It also stimulates our sweat glands and promotes sweating which is important for our existence. Many people suffering from perspiring disorders may use it for their betterment…It has vitamins like A and C in the stem and calcium in the white part. Lastly it speeds up blood circulation and helps in the absorption of vitamin B1.”   See link below to article.

Again, I am not a doctor. I don’t know if too much green onion would have a negative reaction for anyone on certain meds or blood thinners.  People do not always appreciate that foods can alter the effect of medication so always check with your doctor to be sure there’s no conflict.

it’s expired. do i still take it?

I think whether you’re staring at (and let’s admit it, sniffing) a condiment that’s been in your fridge for eons or holding a bottle of prescription meds that’s just out of date, it seems like a fairly universal quandary:  is it safe to consume a product after the date stamp of expiration?  At least my morning half & half that’s straddling the line has a questionable smell to tip me off.   With medication, how can we be sure?

Here’s an article about this topic (link below).  The title of the story seems a tad misleading given that they say the chances of poisoning oneself are slim.  It appears that, more often than not, the drugs lose potency.  It certainly seems that one could assume a drug is not working, take more and then be faced with too much in the system kicking in simultaneously. Obviously that could get sketchy real fast.

“When in doubt, throw it out” still seems like the way to go. Or, better yet, perhaps your local police or fire station has a lock box drop off to prevent pills from getting into the wrong hands.

qi gong for late-stage rsd: a small study

The blog I am linking to below is well worth the read for anyone with RSD/CRPS or chronic pain of any kind. This study is what caught my eye:

“In a block-random placebo-controlled clinical trial, researchers studied the effect of qigong on treatment resistant patients with late-stage complex regional pain syndrome type 1.  It consisted of 26 adult patients between the ages of 18-65.  The experimental group received qi emission and qigong instruction (including home exercise) by a qigong master.

The control group received a similar set of instructions from a sham master.  22 completed the protocol.  Among the genuine qigong group, 82% reported less pain by the end of the first training session compared to 45% of control patients.  By the last training session, 91% of the qigong patients reported analgesia compared to 36% of control patients. The study concluded that qigong training was found to result in transient pain reduction and long-term anxiety reduction.

hope and healing

I love this. The entire CNN article is linked below.   Hope might just have healing effects on motor function, circulation and pain.

“How hope can help you heal”

“Few things are more ethereal than hope. It isn’t tangible, easily measurable or available in pill form. That’s likely why the idea that hope may wield a significant influence on healing — and even survival — may be tough to take for our bean-counter brains, hardwired by evolution to seek certainty at any cost…The positive physiological effects of hope are well-documented, most eloquently in Jerome Groopman’s “The Anatomy of Hope,” where he writes: “Researchers are learning that a change in mind-set has the power to alter neurochemistry. “Belief and expectation — the key elements of hope — can block pain by releasing the brain’s endorphins and enkephalins, mimicking the effects of morphine. In some cases, hope can also have important effects on fundamental physiological processes like respiration, circulation and motor function.”

having hope in the new year

The best part of a new year: it’s the best time to consider the possibilities. And I hope that anyone reading this is blessed with all good things in 2015 and especially those of us who have daily pain or struggle with our health. The possibility that this is the year you overcome is strong. And why not? Hope is a pretty amazing and magical thing. Read this blog entry below about how hope HAS healed. I have posted this before and it never gets old (for me).

This is my favorite from this blog post:

“As described by Dr. Bernie Siegel in Love, Medicine & Miracles, a chemotherapy regimen called “EPOH” was being studied in a research protocol for efficacy. Most of the study centers were reporting consistent results—some benefit from the chemotherapy, but nothing earth-shattering. But one study center was getting dramatically better results, so the research team investigated. What were they doing differently?

Turns out the doctor in the center with better results had renamed the chemotherapy regimen. Instead of telling his patients they were getting EPOH, he rearranged the letters and dosed them with HOPE.”


The caregivers, the family members and the friends of those who are depressed often feel helpless (or so I was told). I know the reality of chronic pain and it’s often a short, dark road to depression. Not being able to do things on ones own can strip a person of their pride. It shouldn’t. But it often does. There’s all the conscious things one might feel they have lost or can’t do. And maybe they really can’t do some things they did before. They might regain them and they might gain new insight and skills. But often that is hard to see. Then there’s the chemical aspect of pain. It can be a lot. The possibility of overcoming can seem so remote.

This is by no means going to cure anyone of depression but I saw this blog and wanted to share it because maybe it can help someone to help someone. I am not a doctor, not a psychologist..nada. So please do not interpret this as any kind of medical advice (like the rest of this blog). I am posting the Lifeline Hotline page here just in case someone is feeling super remote and reading this.

“So what should you do, when someone you love is suffering so much?

I’m not a mental health professional, but from the perspective of someone intimately familiar with the darkness of depression, here are six ways I’d suggest you can support someone you love:

1. Be there.

Be there unequivocally, without judgment or opinion. Don’t offer unsolicited advice or try to fix everything. Don’t criticize. Just be present, through the sadness and discomfort. Let them know they’re not alone. Your compassionate presence can mean the world to someone in the depths of despair.

2. Show them how much they have to live for.

Don’t dictate to someone how they should or shouldn’t feel — don’t tell them that they should be grateful or positive or anything other than how they are. Instead, let them know how wonderful, valuable and important they are to you, and to others.

3. Help them help themselves.

Show them that there are a wealth of options for people suffering from depression, from support groups to psychiatrists to counselors. Do some specific research — make a list of phone numbers, email addresses, websites. With depression comes a serious lack of motivation, so make it as easy as possible for your loved one to seek help.

4. Know your stuff.

There’s a lot of misinformation and stigma surrounding depression. Educate yourself on the ins and outs of the illness, and you’ll be a much greater asset to the person you love.

5. Go easy on yourself.

You can’t solve someone’s problems or heal them of their ills. You’re not their doctor or therapist, and even if you were, medical professionals aren’t miracle workers, either. People have to participate in their own healing — they have to want to help themselves. What you can do is be there. Show them support and love and acceptance. You can offer a helping hand and a shoulder to lean on. Otherwise, be realistic about your role.

6. Never give up.

Dealing with someone who’s depressed can be frustrating and exhausting. Always tend to your own needs and don’t burn yourself out, but try not to give up on them, even if they do their best to push you away. Stick it out. Your love could be their life preserver.”