Our friend Amy Allen from MomAdvice.com has been battling chronic pain for many years. Though some of her coping skills are specific to her condition, many are not and she has given us permission to share her tips as a support and strength to you.
It’s been five months since my adventure with POTS Syndrome, after a viral sinus infection and, whoa, this has not been fun at all. Since this time, sooo many people have messaged that have been battling this as a COVID long-hauler and asking if I had any experience to share.
For those that don’t know what this is, postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response).
Common symptoms include blood pressure issues, increased heart rate (an increase over 30 bpm when changing positions), blurred vision, dizziness, fainting, and temperature deregulation.
I wanted a place to point people because I’m not exaggerating that someone has reached out weekly after battling this virus. Every day requires planning for a well-thought battle for normalcy, but these are the things that have helped the most.
- Cognitive behavioral therapy has been the single best investment, once again. The Curable app (and community) have helped guide me through calmer responses and the meditations, honestly, have saved me from many an ER visit. The tool offers a smart emergency button that I have called on to calm down my nervous system more times than I can count. I continue to meet weekly with my support group that I now consider my family.
- Slow down the morning routine if you can. Sit up slowly, hydrate, put on compression socks, and let your body ease into the higher heart rate. Then transition slowly to standing. It’s a production to get out of bed, but slowing down makes a significant difference in my heart rate increase.
- Move as much as you can. Google the Levine Protocol and start small and work your way up. The protocol is based on the research of working with astronauts who battle similar issues when returning from space. I started with 5-minute walks and a 170 heart rate (scared the shiz out of me) and now I can walk for an hour with a lot less chaos. At this point, I’m averaging 25 miles of walking a week which is wild when I think I could only walk for five minutes.
- My doctor encouraged me to workout in the morning to get the adrenaline dumps out. Timing does seem to make a difference so if I can’t squeeze it in, I will still try later in the day, but I usually have a harder morning.
- I did have to take a medication and it took 4 weeks to work, but it helps a lot. It’s called Florinef and my hope is to just take it temporarily. It can deplete potassium so I get monthly checks now and restore order as much as I can with coconut water and electrolytes. Nuun is the best brand for electrolytes (lower in sugar than others) and are great to pop in your purse to add when you are out and not feeling your best.
- Involve helpers if you can. My three best helpers are my physical therapist, my GP, and a chiropractor that does small and careful adjustments (if you have EDS, please only work with someone who is knowledgeable and if you are local I can make a recommendation).
- If you don’t have a physician that can help, see if anyone in town is offering DPC (direct patient care) and go that route, if possible. It has been more cost-effective to pay an annual rate and when I’m having trouble navigating flares, I have someone to help me.
This has been so hard and scary and depressing for all of us. Having the glorified trifecta of fun with EDS, Mast Cell Activation Disease, and POTS brings daily challenges. That said, I’m so proud of the progress I’m making.
Having a chronic illness is not a linear path, but there is so much to fight for. I’m still doing the work every damn day. We are the luckiest to have so many people who have loved us through all of this.