When the Privilege Ends; 3 Keys to Pain Management in Lockdown
Is it pleasure or pain? Some moments I’m not entirely sure. Warm hands make their way across my naked body in a familiar way. Cresting over my knotted muscles, dipping into the hollows of de-conditioned space. One moment it is utter relieve - and the next a spasm is triggered. The soothing music and light smell of the oil mixed with gentle reminders to connect to my breath lull me into a relaxed state. Massage therapy is one of my pain management strategies. Like all interventionists; physical therapists, occupational therapists, orthotists, speech and language therapists... not all are created equal, and of course the good ones are typically reflected in their fee. I am among the privileged with private insurance, or at least I was until the massage benefit ran out.
Covid has relieved many Chronic Pain sufferers of their pain management interventions. Prior to lock downs and stay at home orders, I found great relief in the therapy pool program. I did the spinal program for the deleterious effects of Ehlers Danlos Syndrome (EDS)* I was experiencing and it helped immensely!!! In 2020 I went to a Pain Management Clinic. They clearly had no experience with the EDS trifecta (EDS + POTS + Mast Cell Disorder/ MCAD). They chastised me for the medications I was on, while not listening to me as to why I CANNOT take narcotics to manage pain. Despite telling them I couldn’t take certain medications, they prescribed them anyway. They were frustrated I wouldn’t just go get surgery for my joint issues - I tried to explain that is the surgeons decision to NOT operate on EDS patients, not mine. They were further annoyed I had adverse reactions to anesthetics, which was their primary treatment at that clinic. Over all not a great experience.
So, now what? No more glamorous massage. No pool therapy. No Physio therapy. Limited medications for pain management. Now I say the things that those of us with chronic health issues don’t want to hear. But when you are taking the meds you can take, and all your other options are out, we have to circle around to these, so please don’t hate on me too hard - there is valid research.
Let me start by saying there is a difference between pain and suffering. Pain is the sensation of discomfort. It may be sharp, dull, achy, pounding, cutting, deep... but it is the sensation we feel. Suffering is the emotion tied up with pain, and there is A LOT of emotion tied up in chronic pain. From anticipatory stress of when it may happen again, or touching the sore spot, or for me personally fear of what may trigger the pain, eg bright lights - wow they cause unbelievable lightening pain in my brain. Suffering may come to you in the form of anxiety (worry about how much it will hurt, how much it has hurt in the past), depression (I can’t do anything because of this pain), grief (I lost my job, livelihood and future dreams because of this pain). We may not be able to always control the pain effectively, but we can do something about the suffering.
3 Keys to Pain Management in Lockdown
Meditation There is a difference between pain and suffering. While we may not be able to do much to reduce the pain sometimes, we can reduce our suffering. Meditation can help reduce the suffering associated with pain. The most data on this is collected from Jon Kabit-Zinn’s Work: Mindfulness Based Stress Reduction (MBSR). His book “Full Catastrophe Living” is used in Hospitals and Pain Programs throughout North America to teach his program - I highly recommend it. Most libraries have it available for FREE download. Sometimes mediations looks an awful lot like laying in bed with your eyes closed. That’s ok. We have to start somewhere, and having an achievable goal will help us stick with it. What the research has shown is a reduction in stress and anxiety, (suffering) from a variety of patients. The first research article below specifically speaks to changes in the brain for anxiety sufferers. The second article discusses the change in perception of pain in chronic pain suffers for those who meditate on an on-going basis. The long term practitioners had a reduction of dwelling on the consequences of the pain (depressive thoughts), and worrying about the pain (anxious thoughts). Here is some science about it if you would like to dig a little deeper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004979/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4941786/#S9title
Exercise You don’t have to do Yoga if that is too cliche for you as a person in chronic pain. However, somewhere a long the line you may have been given some exercises from your PT/OT, start there. If walking isn’t too painful, and it is permitted in your area then getting outside, it will help lift mood, reduce suffering and the psychological experience of pain - again Pain and Suffering are two different things. We have more control over the amount of suffering we experience... once we learn how. For people with POTS, floor or bed exercise are a good place to start, then any recumbent exercises, but especially rowing machines - and weights (Not together, lol). There are a lot of videos on Youtube, you know your personal limits and I trust you know where you need to push to get any real gains. The goal of the exercise isn’t to stregthen an injured area, it is to release endorphins and improve mood to help tolerate and manage the pain in general... to manage our suffering.
Nutrition If we are only eating our comfort foods all day and night, meditation and exercise are going to feel extra hard. I can’t tell you what to eat, we all have such diverse needs, but I can tell you that when we experience chronic pain and chronic health conditions that comes with some mood issues. Mood issues often come with food issues. Too much, too little, too much of one thing and not enough of another. It may be time to take a look at what you are eating throughout the week and start with some SMALL changes. Large sweeping changes are hard to keep - and only make us suffer more. The point of this article is to reduce suffering, not make more. What foods will most nourish you on your journey from suffering?
This isn’t the first time you have seen these three suggestions, and they wont likely be the last. You may not be ready to do all three - so choose one. One item on this list. Chose the one that will be sustainable. It will start to yield some small helpful results, then you can add another when you are ready. I started with meditation because I could do it in bed for 1 minute at a time, laying down. It was the laziest option I could find. Now I do 10 minutes at a time sitting up, twice a day, daily. It took many weeks and months to build up to that though. None of this is easy, but neither is living with chronic pain. We have to chose our hard.
*Ehlers Danlos Syndrome (EDS) is a collagen disorder affecting the connective tissue throughout the entire body. It causes hypermobility of joints, lax ligaments, eye issues, heart issues, spinal issues, GI issues and respiratory issues - basically all the issues. Collagen is the building blocks for the body, and Connective Tissue holds the body together.
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