Not all chronic illnesses cause pain but it’s my experience and may be yours too. Each person’s pain threshold is different but living with it can be draining.

These are how my conditions affect my comfort level.

  • Ehlers Danlos syndrome (EDS) causes daily subluxations (partial dislocations) and dislocations. I have unstable joints from ligaments and muscles that don’t function correctly due to the collagen defect, causing muscle spasms and tendonitis.
  • Rheumatoid arthritis (RA) causes joint pain and stiffness.
  • Sjogren’s syndrome causes muscle pain as well as secondary dysautonomia symptoms such as headaches, small fiber neuropathy (SFN) and GI pain.
  • Either EDS or dysautonomia causes migraines.

Managing your comfort level requires a toolbox of specific techniques, products, and modalities trialed over time. We are all unique in our approach, but I’ll share what is working for me now.

1. Prescribed meds.
Treating the underlying condition is most important since it often contributes to the discomfort.

2. Arthritis strength acetaminophen.
They are 650mg each tablet. I take 2 tablets twice a day as needed. It works much better than extra strength. I cannot take any NSAIDS due to chronic kidney disease, so acetaminophen is my option. Staying within the daily recommended parameters is important.

3. Physical and occupational therapy.
These two specialties are so important to guide you. I still go to PT twice a month for ongoing treatment and have a daily home program, since EDS causes instability in joints, muscles and ligaments.

4. Cannabis products.
I use cannabis cream on my joints, CBN for sleep and have tried other products with varying degrees of success.

5. Lidocaine cream.
For muscle pain or times when I don’t use cannabis cream, I use this cream:
https://www.bengay.com/products/lidocaine-ginger-citrus-cream

6. OSKA unit.
This Pulsed Electromagnetic Field (PEMF) pain unit with good clinical data really helps:
https://www.oskawellness.com

7. Myofascial tools.
Tennis balls, trigger point massage tools, Thera Cane and roller stick are the mainstay of my home toolbox. Releasing tight fascia can be the difference between extreme pain and manageable discomfort.

8. Ice/heat.
I mostly use heat on my sore, tight muscles but if my joints are swollen, I use ice packs wrapped in a towel.

9. Exercise.
This is critical for me to function. There was a time that I could barely walk across a room but with the assistance of my PT plus starting very slowly, I now do isometric, TheraBand strengthening, recumbent bike and walking.

10. Epsom salt baths.
When I’m sore all over, have muscle spasms or just need to relax, I take a warm Epsom salt soak. The magnesium is absorbed by your muscles and relaxes them.

11. Leg pumps.
Although we have not found the definitive cause, I have significant leg swelling that causes discomfort, especially with my leg braces. Twice a day, I use electric leg pumps, from foot to thighs. This is something to be discussed with your physician, so I did not add the link.

12. Compression garments.
For both my RA and EDS, I use compression. In EDS, compression not only provides better joint stability, but improves proprioception. In RA, the gloves help decrease the swelling and provide comfort. I love these gloves:
https://www.graceandable.com
and I wear compression leggings every day. The brand I am presently wearing is CRZ Yoga Hugged Feeling:
https://us.crzyoga.com/collections/leggings/products/r448pu10

13. Braces.
I wear custom made leg braces due to my dislocating knees and ankles. They allow me to walk without falling. I also occasionally wear wrist braces when my RA is flaring. I like the wrist braces from Grace and Able:
https://www.graceandable.com

14. Meditation and deep breathing.
I have been meditating for many years, long before my added diagnoses. I have used several types of mediation: guided, mindfulness, walking, focused breathing, and mantra. There is no one way to meditate and no one is perfect doing it, but the rewards are worth it. I also use different types of breathing techniques since they shift our nervous system from sympathetic (fight or flight) to parasympathetic (rest and digest).

15. Pacing activities and rest periods.
Pacing my activities and taking rest breaks has been one of the most difficult lessons for me to learn. I have always been high energy with a lot of stamina so having a body that needed to slow down was a mind shift for me. The benefits have certainly outweighed my desire to constantly move. It has allowed me more comfort.

16. Hydration and healthy eating.
I focus on anti-inflammatory, non-processed- foods, plus eating small meals more frequently. Being even a little dehydrated can cause headaches and fatigue, so I fill a 64 oz. container each morning to keep track.

17. Distraction.
Anything that brings you joy and distracts you from discomfort is effective. For me it is music, movies, cooking and family.

18. Making sleep a priority.
I’m notorious for staying up late. My favorite shift when I worked in the hospital was evenings. Plus, I dislike getting up in the morning. Now that I’m retired, I do go to bed later and sleep later, but I ensure 7.5-8 hours of sleep each night. I have a bedtime routine each night that signals my body to shut down and prep for sleep.

19. 10% rule.
No one thing in my toolbox takes away all my pain, but if I add a few or even several of these together, 10% of each one I use, can add up to a lot of pain relief.

20. Support.
On those days when you have used every tool in your toolbox and still hurt, reach out to someone for support. Reach out to me here on my blog, a support group, or a therapist. I firmly believe every chronic illness patient should have a therapist, someone to talk to who is not in your family or emotionally vested in your care.

 About Author Jan Hempstead

My name is Jan Hempstead and I’m an RN, although I medically retired sooner than I would have liked because of my multiple diagnoses. I’m also a mom, wife, sister and friend.

This blog is my story about living well with Ehlers Danlos syndrome (EDS), rheumatoid arthritis (RA), mast cell activation syndrome (MCAS), chronic kidney disease (CKD), hereditary alpha tryptasemia (HaT), dysautonomia and Sjogren’s Syndrome (SS).

I started out with EDS and one by one, another diagnosis kept getting added on. Come follow me as I share my journey with multiple specialists, what has worked and has not, and where I’m going next.

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