How Do You Deal With Your Chronic Pain?

One of the most common questions asked is, “how on earth do you handle your chronic pain every day?”

chronic pain solution
Prior to having back fusion, I would use crutches to walk around the mall because the pain was so intense.

I often get this question when someone has just experienced the unrelenting, piercing, discomfort from a pinched nerve, herniated disk, or heaven forbid the monster of them all….sciatica!

For the sake of information overload, I would like to tackle this question in 4 parts. I believe it takes 4 parts of the body to get through the struggle of chronic pain. The 4 parts I will be sharing are these: 1-Physical, 2-Emotional, 3-Spiritual, and 4-Mental.  Don’t worry, I won’t be tackling all four parts in this blog.  I will dedicate a blog to each category.  For today I would like to give you an overview then be more specific in the next blog or blogs.  This way you will get to know me and that I am speaking from a life of experiences.

(Sidenote: To help the reader understand my background and why I am so familiar with the issues of daily chronic pain I need to share my personal experiences. Please do not take my story as a cry for sympathy or a platform for complaining. It’s not that at all. I am a firm believer that if we want to help others or make changes in this world sharing what we have gone through, what we have learned, what works and what doesn’t, just may make it easier for others that are behind us on this journey. Learning from others is a good way to find resources and avoid making the same mistakes. However, everyone is different. What works for one person may not work for another and for that reason have an open mind, talk to your Physician or Therapist before trying any of my suggestions. I take NO responsibility for any injury or damage to you or your property. Basically, try at your own risk.)

I dislocated knee-cap on my right knee, 2 inguinal hernia repair 1 on the right side, the other on the left, herniated disks in my neck, mid-back, and lower back, torn rotator cuffs in both shoulders, bone on bone in both knees, tares in both elbows and I was not in charge of my body. I had many surgeries to fix most of these issues. Inguinal hernia repair x 2, low back fusion from L4-T1, Neck fusion C3-C7, then a few years later I fainted, hit the back of my head which broke my neck fusion and 4 titanium screws, which I didn’t think was possible, and then had a second neck fusion from C2 down. (I might be off on the level numbers, so forgive me. I just know that all but the 1st level have been fused), Right shoulder repair, and then breast cancer with a double mastectomy and failed reconstruction. All of this plus don’t forget about the injections and physical therapy sessions in between all the surgeries. It’s like a full-time job. Thank Gd, I have good insurance. But Insurance doesn’t cover everything and I will talk about that later.

Believe me when I tell you I have tried everything. Acupuncture, Physical Therapy, Anti Inflammation Diets, Supplements, Injections, Yoga, etc. I would get some relief but not anything of real significance. After having so many issues throughout my body I did my research and started asking questions like, “there might be some a connection to all of this that we’re missing”. It’s so strange to me that patients sometimes need to educate their doctors.

I came across some articles and started reading about something called Ehlers-Danlos Syndrome. I printed the page, highlighted by many symptoms and took it into my Orthopedic Surgeon. It was like a light went on. He was able to refer me to another Physician who then gave me the physical exam and I was finally diagnosed with EDS type 3. That’s when things began to change. doctors and therapists treated me better. Having the correct diagnosis is key. If you don’t know what the issue is, how can you work on it properly?

pre-surgery for breast cancer
Pre-surgery, one of the 13 I’ve had so far.

Having the correct diagnosis is also important for yourself. Not only did having the EDS diagnosis help the medical people treat me correctly, but it also helped them understand why I had such widespread problems. For myself, knowing that I wasn’t crazy, that I wasn’t just complaining or lazy, but that this was real, difficult and required specific attention gave me some peace of mind. Having family, friends, doctors, and physical therapists treat me negatively would often compound the pain. Once the diagnosis was given and we understood what was happening to my body everything changed, the clouds parted and the sun was shining on me.

Here’s a list of things that I learned to do that have been helpful…

  1. LISTEN to the body! Something I rarely did. I usually would just push through the pain. No more.
  2. Plan activities based on the current energy level OR the amount of energy the activity needs.  People with Ehlers Danlos Syndrome have issues with the Adrenal glands. We don’t feel tired until we’re exhausted and our poor adrenals are negatively affected which leads to adrenal fatigue.
  3. Don’t beat yourself up…love yourself.
  4. Find alternative exercises so I could stay fit and to stay out of the operating room.
  5. Make sure to communicate to my medical team about any pain even if I thought it wasn’t a big deal.
  6. Accept that my body cannot do the things it used to and find other activities that I could do.
  7. Use a walker or wheelchair with no shame. Why should I be in pain just to avoid looks from others?
  8. Break up a workout. If a video I wanted to do was an hour-long and I couldn’t get through it, I would hit pause after 20 min, take a break, if I felt up to it I would start where I left off. I would do this throughout the day until I had completed the workout.
  9. Move slowly, I love that YouTube allows you to control the speed of the video. Moving from one position to the next, especially while doing Yoga or Pilates can cause damage so I slow these videos down if I think they are going to fast for my level.
  10. Epsom salt baths and other tools to help relieve muscle soreness…(I use a great tool that works on the fascia and really helps relieve muscle soreness, fatigue and increases blood flow. 
  11. Cut down of foods that would increase pain and fatigue.
  12. qigong It’s a great way to get the blood moving and is easy on the joints. Here’s a great 
  13. Modify, modifymodify……always modify. If it’s a video or class I would modify or let the instructor know my issues so they could give me alternatives to what everyone else was doing.
  14. Don’t let the comments of others get to you.  You take care of yourself.

I hope this information is helpful to you or someone you may know. Just remember, don’t beat yourself up, feel guilty about your inability to do what you once could, or be ashamed to need what you need or set boundaries. You are important and it’s okay. Take care of yourself first. Speak up and above all tell yourself this, “I love you, you are enough”.

Thanks for reading, keep a lookout for upcoming blog’s that will go into more details about each category!

Stay healthy & never give up!