what a pain…

dSavannah note: Hello, dear readers and people who have stumbled across this blog by accident. This is my post for September 2019, which as I promised back in ye olden days of January, is being published on the 15th 16th. Yup, this post is late.

Also, this post is a bit different. You see, typically, I have an idea, and I write a few words here and there over a long period of time. (For instance, I’ve already written some for December’s blog post.)

I’ve had my topic for a couple months, but… when I’ve had a moment when I could focus on my blog, nothing has come to me. Not one word. I’d open my laptop to work on the post, and… my mind would go blank. And the rest of the time, I’d have to focus on other things going on in my life right now which take priority over my blog. Or, I’d be completely crashed in bed, unable to do anything at all, which accounts for 15 of the days since my last post. I also had seven doctors’ appointments, and when I have to see a doctor, that’s all I can do that day, which leaves me with very little usable hours for my blog. All that means: I basically wrote the vast majority of this post in three days, which I never ever do anymore. I can’t. It’s too hard on my body.

This post is also different, because I was chosen by an app, called Pathways, to write about pain and their app, which is supposed to help people with chronic pain. (Their tagline: “Created by pain patients. Backed by decades of pain science”.)

In fact, Pathways gifted me access to the app for one year in exchange for featuring on my site. Which hooray! They like my reviews and how I write, but Oh geez. What if I don’t do it well or right? Typically, I’ve worked best under pressure (like my whole career), but for some reason (probably the other giant stressors in my life right now) (which I can’t really talk about, but which had to take priority), my brain just ain’t working right. But we’ll soldier on (please forgive me for use of cliché!), and please forgive me if this ain’t the best post you’ve ever read.

And to my fellow #MEeps and other chronic illness patients who have trouble reading, my voice is gone again, so I can’t record this post (or the other ones I haven’t recorded yet). When I get my voice back, if I use it “too much” (tho who knows how to quantify that!), it goes away again. Even with speech therapy sessions and doing my speech therapy exercises and taking my GERD medication.

And to those of you who are reading this: somehow this has turned into what is probably the longest blog post I’ve ever written. Sorry! Feel free to read a section at a time and come back to it. Also, if you see any wacky typos, please please let me know so I can fix them!

Before we get to the important part of my post, which is about pain and ways to cope with it, and my thoughts on the Pathway app, I have to share:

In my January post, not only did I say I planned to publish a blog post every month on the 15th, I also said “I’m going to consciously practice gratitude.” And to do that, “my goal this year is to write in [my gratitude journal] every single day, right before I go to bed.”

And guess what? I did it! Some days, it was really hard to come up with anything at all. And some days, I needed more than one page to list things I was grateful for. But I managed to write every.single.day this year.

I used the last page in my Gratitude Journal on September 7, 2019, at exactly 250 days of practicing gratitude. YAY ME! (For the rest of the year, I’m using a mini Moleskin notebook someone gave me a long time ago. I’m hoping someone will gift me another Gratitude Journal from my Amazon wishlist for 2020.) (For which I will be very grateful!)

So, here we go, on to the post:

Living with Pain

I live with pain. I wake up in pain, I go to bed in pain. My day is spent in pain. It never ever ever ends. Sometimes it eases up, and sometimes it’s excruciating, but it’s never not there.

The Merriam-Webster definition of pain.

Health Conditions

My pain is caused by a number of debilitating, chronic conditions. The biggest culprits are Myalgic Encephalomyelitis (MEcfs), fibromyalgia, and hypermobility syndrome, which is a subset of Ehlers-Danlos Syndrome, a group of connective tissue disorders.

I also have a myriad of spinal issues, including osteo arthritis, spondylosis, disc compression and degeneration, scoliosis, stenosis, and nerve damage. My neck/shoulders and lower back are often screaming at me! (And those aren’t the only things I have that cause me pain, but this post is probably already long enough!)

Everyone experiences pain a bit differently, even if they have the same condition. As the CDC says on their page about MEcfs and its symptoms, “Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

• “Muscle pain and aches
• “Joint pain without swelling or redness
• “Headaches, either new or worsening”

Check, check, check. Yup, got those all.

The Mayo Clinic’s page on fibromyalgia says: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” (And lucky me: a rheumatologist said I’m in the top 1% of worst fibro cases.)

Genetics

Gene snipping icon made by dDara from www.flaticon.com

In addition to all of that (as if it isn’t enough!), I have homozygous (+/+) / double mutations in two of my genes: COMT V158M and COMT H62H.

I know this information, thanks to a DNA test called “DNA Methylation Pathway Profile“, which I had done in 2015 when I was first trying to figure out what was wrong with me. (Many of you donated to my gofundme campaign that helped me pay for it, for which I am forever grateful.) I have a total of eleven genetic mutations out of the 30 genes tested, three of which are double mutations.

According to my genetic report, the COMT genes in particular are “found in nerve cells, and in the liver, kidneys and red blood cells. In the brain, COMT functions to break down catecholamine neurotransmitters such as dopamine, epinephrine, and norepinephrine.”

They say that the possible health implications of these genes being mutated “may affect neurologic processes (particularly prefrontal processing), including mood and pain tolerance”, and one mutation in particular “is associated with deviations in thought processes”. In addition, “There is a decrease in enzyme function” … “with up to a four-fold decrease in enzyme function” for one of my mutations!

To summarize all that in laymanspeak, and as my doctor explained it to me, I feel more pain and anxiety than other people, specifically because my genetic makeup is written that way. An article I found while researching this blog – “A pack of smart, hedonistic creative types with a lot of anxiety and high brain dopamine: A case history of a family homozygous for the COMT Val158Met mutation.” – really made me think, because it sounds soooo much like me!

Thus, when you add in my fibromyalgia, which, according to the Mayo Clinic – “Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” – I’m just a hot mess!

(If you want to learn more about genes and whatnot, explained much better than I can, check out this article Heterozygous vs. Homozygous Differences on the site VeryWellHealth. An article specifically about the COMT Gene, Worriers and Warriors, on the website for the company Advanced Genomic Solutions (AGS) Ltd., explains it even more specifically. [Note: they also offer genetic testing, but I have no experience with them.])

Dealing with Pain

Now, obviously, there is not one thing I or anyone else can do about my genetics. There is no procedure to go into my genes and un-mutate them.

However, knowing about them helps me understand what is going on with my body. As the The Great Plains Laboratory, Inc. says in a post about the DNA test I had: “The risks [due to the genetic mutations] may be reduced by lifestyle changes, and inefficient biochemical processes can be supported by diet and nutritional supplements to maximize the functions of metabolic pathways.”

As for my health conditions, in addition to the gluten-free/low sugar diet I’m on and the supplements that I take, there are different types of physical therapy and exercise that can help manage pain.

Of course, everyone in the world will tell you that you should do yoga or other exercise and you’ll get better. It’s actually a big joke to some of us in the chronic illness community, especially one of my support groups – if someone says they’re experiencing a particular symptom, someone else will chime in and tell them they need to do yoga. Or eat kale. Like we haven’t heard that a jillion times before.

The thing is, exercise is actually good for many many health conditions, including depression and fibromyalgia, which I have, as well as diabetes, heart disease, cancer, ADHD, and asthma, which I don’t.

Unfortunately, exercise is contra-indicated for people with MEcfs, which means they’ll get worse. As I’ve written many, many times, if I do any sort of exertion, whether mental or physical, it will cause me post-exertional malaise (PEM), i.e., I’m gonna feel really awful and be in bed and unable to do anything but barely stumble to the bathroom for a few days – just from writing and publishing this blog post.

However, not exercising can cause muscle deconditioning and weakness. So what do you do if you have a disease that means exercise makes you worse?

Well, in my case, I do a lot of very gentle stretching, a little at a time. (Seriously. Like five reps and then rest.) I’ve done physical therapy three separate times (until insurance decided not to pay for it anymore), and I do the exercises they taught me at home. I’ve also found some good exercises on the site mindbodygreen, such as 5 Exercises You Can Do While Stuck in Bed.

Obviously, you can take over-the-counter pain medications, but you have to be super careful because they can cause liver damage. (I personally take two prescription pain meds, that are prescribed by my pain doctor, who I see each month.)

Other therapies are available, such as ice packs. I live on my ice packs. Truly. My current favorites are the FlexiKold Gel Ice Pack, the Cureve – Reusable Ice Packs with Wrap, and the Bucky Hot & Cold Therapeutic Travel Neck Wrap (which I keep in the freezer when I’m not using it). (That reminds me. I need to write reviews on these at some point…)

Another thing that I really love (and have reviewed) is the KT TAPE Recovery+ Ice/Heat Massage Ball, which is perfect for pressure point massage with either hot or cold.

Cover of the new album Rising Star by Griffin House.

Speaking of KT Tape, I’ve found that two strips of the Pro Kinesiology Sports Tape, one across the middle of my shoulders, and one across the middle of lumbar/lower back, really help support my muscles and reduce pain. (The tape is also on my Amazon wishlist; I don’t care about the color – I just purchase whichever one is cheapest at the time.) (And yes, the brand is important to me, personally – I have an allergy to some adhesives, and this brand and style doesn’t cause me any trouble.)

I also do things to distract myself when I’m in pain. If my brain will allow and it’s not being too sensitive to sensory stimuli, I watch stupid stuff on Netflix (don’t ask; it’s too embarrassing) and listen to music or relaxation tracks.

If I had an actual vinyl record instead of MP3s on my phone, I would have already worn out the grooves on Rising Star, the latest album from my favorite musician, Griffin House. (You can purchase it in various physical formats in his store, or MP3s on Amazon.)

I also have Amazon Prime Music, which allows me to listen to all kinds of music for free, including albums such as Sleep: 111 Pieces Of Classical Music For Bedtime, curated playlists like Classical for Sleep and Indie for Sleep, and binaural beats tracks like “4 Hours Sleep in 40 Minutes: Reducing the Length of Rest”, and also to create my own playlists with music I purchased in the past.

Pathways pain app

Pain is unavoidable. It’s just a part of life. Whether it’s mental pain, or physical pain, it’s part of being human. We can’t do anything about much of it, but we can change how we react to it.

I’ve written about pain on this here blog before. My last post on the topic was imagining pain away (or, it don’t work that way). (I think that’s pretty self explanatory.) I also wrote about pain during the 2016 #AtoZChallenge, specifically in the post “H is for … it’s all in your head“, where I discuss that your brain is the creator and the feeler of pain. Oh, and by the way, the signals that the brain receives from your nerves all go through the spinal cord – so if you think of all the damage I have in mine, it’s no wonder I have pain.

About the Pathways app

The Pathways pain app was created because the founder of Pathways, Sandip, suffered from Repetitive Strain Injury (RSI) and was desperate for relief from his pain. I don’t know how long he spent developing this app, but it must have been quite some time: it’s chock full of a variety of short sessions (ranging in length from one minute to 20) covering pain science, breathing, visualizations, exercise, trauma, relaxation, and meditation. As they said, it’s quite an intensive program.

The app works with the concept I wrote about in “H is for … it’s all in your head“, and it’s called neuroplasticity, which is “a new field in medicine, and … an umbrella term used to describe adaptation and changes to the brain.” (Quoted from How to Rewire Your Brain to Manage Chronic Pain on the A Chronic Voice blog.) Or, essentially, that the neural pathways in our brain can become stuck in firing in a certain direction, like constantly sending pain signals, but that we can change those pathways over time by thinking differently.

This notion isn’t a new one – the 2004 movie What the Bleep Do We Know!? explored the concept and used the idea of quantum physics and consciousness to explain why it’s so hard to break out of patterns. (It’s a really cool movie; you should watch it.)

This idea is also found in the saying “thoughts become things”. Now, this idea has been harmful to many in the chronic illness community, and used as a way to diminish and ignore symptoms, or to tell us we are imagining or over-exaggerating our pain.

Art provided by Pathways.

In addition, the app says, right up front, “Thoughts, feelings and beliefs can be enough to trigger debilitating pain.” However, the app is also very careful to point out that although the pain is in your head – because it’s caused by the brain – that it’s also very real and can be debilitating.

I have tried practically everything to feel better, so of course I was skeptical and even a little angry that an app claimed it could help me reduce my pain. But I wanted to try, especially since I was given the opportunity to do so.

When you download the app, which is available on the Apple App Store or Google Play, you first have to set up an account. (Note: it is not available on kindle.) All it requires is a name and email address, and then you can choose your diagnoses out of a long, very comprehensive list.

They say that they “tailor your program” based on the info you provide. Unfortunately, although there is a section called “Pain Diagnoses > Edit” in your profile, it doesn’t show the ones you’ve already chosen, or it didn’t save my list, I’m not sure which. You can add additional diagnoses, but if you’re like me, and can’t remember or see what you already submitted, it can be a little frustrating. (Also note: I am using the app on my iPhone 6S.)

The app starts with what they call a “consultation”, where they ask questions about your personal traits and life experience. Unfortunately, I don’t remember exactly what was asked, and once you go out of the consultations, you can’t go back. Supposedly, they also use these answers to help customize the sessions for you, but I have no way of knowing how true it is.

There are over 70 sessions narrated by Lisa, our “pain specialist”, and she has a very soothing voice that I like a lot. Besides claiming to be a way to literally change the neural pathways in your brain, the app is also like a path that leads you from one section to another, with new sessions “unlocking” as you complete some.

There is also a section they call “MeTime”, which includes almost 150 visualization and meditation sessions (I counted them, using excel!) in five categories: Relax, Wellbeing, Inspiration, Sounds, and Sleep. Quite a few of those sessions are also available before you pay for access to the app. (Note that not all of the sessions are narrated by Lisa. For instance, the “Pain Therapy Essentials” collection of five sessions is by Dr. Natalie Fienblatt. Although I adore her blue hair in her picture, I don’t really like her voice. Sorry, doctor.)

If there is a session that you particularly like, you can “favorite” it so you can easily find it again later. I have added the sessions “Sleep Relaxation”, “Recovery from Pain and Illness Meditation”, and “Relax and Heal from the Inside”, among others, to my favorites.

Many of the sessions mention research studies done on a variety of topics that ultimately led back to pain. The Pathways people cite a lot of sources, but they don’t make it easy for you to find them. They list some sources on their site, in a section called the Science Behind Pathways, but they don’t link to any of the actual studies they quote, nor even list the study name. I personally like to read the original source of studies (when my brain allows), so having to search them took extra time and caused me frustration.

Two screenshots of Sources from the Consultation portion (first part) of the app. I could never figure out how to go back to them, and there were quite a few more sources listed. They don’t link out, either.

I would call Pathways a chronic-pain-therapist-in-an-app. The vast majority of the concepts they share aren’t new to me – though they could be to you – and feel very much like the many many therapy sessions I’ve attended. Only, ya know, without being able to ask questions and get answers.

Oh yeah, and guess what? Part of the Pathways program works on gratitude – so every day I wrote in my Gratitude Journal, I was not only improving my mental health, I was helping reduce my focus on my pain – or at least, distracting myself from it. (There are scientific research studies out there, which I can’t find at the moment, that say that practicing gratitude and mindfulness can improve your mental and physical health.)

My thoughts

Of course, ironically, writing about an app that is supposed to help reduce stress and pain is actually increasing both for me.

Art provided by Pathways.

You can try 10 sessions for free before you hit the pay wall. The 10 sessions are full of stories of people who have used the app and supposedly gotten better, specifically in the sessions “Migraine Success Stories!”, “Fibromyalgia Success Stories”, and in others. Some people may be energized and reassured by these stories, but to me, they felt like a giant sales pitch, instead of true sessions to help with pain.

And I just couldn’t relate to those stories, because none of the situations they talked about were in any way what I deal with on a daily basis. (Well, minute-by-minute basis, actually.)

For instance, one lady discovered that her migraines were triggered by stress, and once she figured it out, she was able to not have migraines again.

This is great for her, but when you have chronic conditions, it’s not quite so easy. For instance, my migraines are triggered by weather changes, a fact I can’t do anything about.

Right now, I have a headache. Part of it is due to tension, because I am stressed about writing this post and the fact that I missed my deadline. (The other part is: I just live with a headache. Always.) I am tensing my shoulders and clenching my teeth. But by becoming aware of what I am doing, I can step away from the computer, take deep breaths, do some light stretches, jot a few notes, put ice on my neck, and tell myself positive affirmations, such as “I’m doing the best I can”, and it reduces the pain.

One of the concepts they share is that you have more and more pain because you are continually thinking about it, so those neural pathways become stronger and stronger.

As I mentioned, writing this blog post has greatly increased my pain, which just proves their theory that thinking about your pain makes it worse. Of course, that idea doesn’t take into account the effort required to sit at my computer, the movements I have to use to type and go back and forth between this page and others when I research, the strain on my eyes whilst looking at the screen, the pain caused by overuse of hands and arms to type, or the fact that sitting still for any length of time causes my muscles to seize up and produce lactic acid and get painful.

And that’s with my laptop on a stand so the screen is at eye level (to keep me from straining my neck down) and using an ergonomic keyboard while wearing my scoliosis brace, lumbar brace, having an ice pack underneath the lumbar brace, and wearing arthritis compression gloves! (The app suggested you shouldn’t use such things, as they believe it also causes more pain in the long run, but my pain would be far, far worse if I didn’t use them. Actually, I probably wouldn’t be able to write this post at all without them!)

In addition, the theory about pain increasing because you’re thinking about it all the time doesn’t completely ring true to me. I don’t actively think about pain unless the pain signals are screaming at me. For instance, I’ll often be going about my day when suddenly joints or nerves will start hurting. I’ll look at the time, and realize it’s way past when I should have taken my pain meds – I just didn’t think about it and forgot until my body reminded me.

They also suggest pushing through the pain. Again, this is helpful for some conditions, but definitely not for MEcfs. I firmly believe that my illness got so much worse, and I crashed so hard, because I kept pushing myself and working and ignoring my symptoms. Doing that made me become a full-time Sick Person. (Five years ago. How has it been FIVE YEARS?!??)

And, as another blogger said, “The focus on reducing coping mechanisms and pushing through is of no benefit when doing that can cause flares/more harm.”

In fact, the only thing that has really made a difference to me is a concept called pacing. As quoted on the MEpedia page about Pacing, “First described by health psychologist Ellen Goudsmit in 1989,^[1] it gives patients the advice to: “do as much as you can within your limits”.^[2]”

That means staying within my “energy envelope“, or the amount of energy I have in any given day. (Which changes. All the time.) It means listening to my body, resting way more than I think I should, and carefully deciding how to use my energy. Again, as mentioned many times, writing this blog post means I can’t do anything else. There is no doing this then doing another task, like laundry; I can do one or the other. It also means I’ve ignored all my social media and support groups and texts for the last few days; I just don’t have the mental bandwidth to do that too. (Sorry, everyone!)

But there are a lot of things that I found useful in the app. One of the concepts that really encouraged me was from a seven-minute visualization session (about 30 sessions in), called “Hurt does not equal Harm”. It reminds you that “pain is just a sensation”. It’s not easy to imagine “pain melting away and out of your body”, as it tells you to, but reminding myself that the pain doesn’t necessarily mean I’m getting worse has been a huge help.

I’ve also been using the “Sleep Relaxation” session every night to help with my chronic insomnia (as I mentioned, it’s one I favorited). Sometimes I have to listen to it two or three times before my mind shuts up enough to let me listen to one of my sleep playlists and actually drift off, but in general, I find it much more useful than other sleep meditations I’ve tried.

I personally had some issues listening to the sessions on trauma. I’ve done a lot of therapy work around the issues stemming from my trauma, but, if you are dealing with trauma and PTSD, you know it doesn’t just go away. I wasn’t able to get through those because they were just too triggering for me. (Maybe in the future…)

Another thing I want to point out about the app: sometimes, I (and other patients) have trouble with sound sensitivity, so I cannot always listen to the sessions. Thankfully, the sessions in the main program all have transcripts, so I can read them if I need to. (Or read them whilst listening to them.) The sessions in the MeTime do not have transcripts, which is a bit of a bummer. (Perhaps they can add those in an update of the app.)

One small annoyance about the sessions: The sound levels aren’t very consistent; I would have to increase or decrease the volume often when I’d go from one session to another. Also, when I’d switch to Pathways from listening to a music playlist, I’d have to increase the volume quite a lot to hear Lisa, and then the sound would blow my head off when I’d switch back to the music.

My recommendation

The app is not a cure for my pain, but it’s definitely a good tool to help me cope with it. If you suffer from chronic pain, I would definitely recommend getting the app and at least paying for one month to see how it works for you. If I had only listened to the free sessions, I probably would not have continued, but I’m glad I was given the use of the app and kept going through the program.

As stated earlier, you can download the app on the Apple App Store or Google Play. It costs $14.99 for a month’s access, $69.99 for a year’s access, or $299.99 for lifetime access. They also state on their website “If you don’t find hope for pain relief within 14 days, we’ll give you your money back”. I personally feel it’s worth the cost to at least try it for a month, especially considering all the things I’ve spent money on that didn’t help at all.

Again, access to the Pathways app for one year was gifted to me in exchange for featuring on my site. I never guarantee a positive review of gifted items, and all thoughts and opinions are my own. My thoughts and opinions on this app and pain are based on my years of dealing with pain – my whole life, really! – starting with TMJD and lockjaw as a kid, migraines, shoulder pain, and knee pain in high school, and all of the things I listed above.

Read more about it

Other chronic illness bloggers were also given the opportunity to try Pathways and talk about it and their own experiences with pain:

• Hospital Princess: Why Traditional Pain Scales Are Inaccurate for Long-Term Pain
• The Spoonie Mummy: Pain Management
• Collin’s IBD Chronicles: This app lets you track your chronic pain and learn about it
• A Chronic Voice: How to Rewire Your Brain to Manage Chronic Pain (& Resources to Help)
• Rockabilly Spoonie: Review | Pathways Pain Relief App

WEGO Health Awards

Last Friday (Sept 6), WEGO Health announced the list of finalists for the 2019 Health Awards. They had over 6,000 nominations, and after two rounds of judging, narrowed it down to 75 finalists.

Although I was not one of those finalists, I am very honored to have been nominated (truly!), and THANK YOU! to everyone who took the time to nominate or endorse me.

I’m also so pleased to say that two of my people are Finalists!

Fellow #MEep (person with ME) Brianne Benness of the chronic illness podcast No End In Sight is a Finalist in the Best In Show: Podcast category. Check out her profile on WEGO Health or her Twitter, which is where I discovered her. And, I literally just this second learned she has a cross-stitch company, Digital Artisanal, which is super cool even if I can’t cross-stitch anymore.

Jed Finley is a Finalist in the Best in Show: Twitter category. He has Ankylosing Spondylitis, a form of arthritis. I follow him on Twitter and you can also find more links on his WEGO profile.

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in almost five years, and I get no disability benefits – and my medications and supplements cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• by donating via paypal
• or sending me something from my Amazon wishlist.

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

Oh! And I completely forgot to say THANK YOU! to the Faerie Goatmother, who so very kindly sent me two bars of her heavenly hand-made Lavender Oatmeal soap for my birthday! Check out her stuff! Oh, and she was my last featured person for The Questions – be sure to read all about her!

Also, if you would like to help terribly ill #MEcfs patients like me, please consider donating to the Open Medicine Foundation or SolveMECFSInitiative, both of whom focus on research and looking for a cure; or #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!