Posted in Arthritis, Chronic lower back pain, Coping with Chronic Pain, Fatigue, Fibromyalgia, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

More Info About “Patients Like Me”

Good morning!

If you haven’t signed up for “Patients Like Me” this post will give you more in-depth information about this unique website. As a patient with chronic back pain, Fibromyalgia, and joint inflammation and pain I have found Patients Like Me (PLM) offers a way to track my daily symptoms, conditions, and treatments. Let me explain.

The goal of PLM is to help patients become involved in the care of their conditions – Fibromyalgia, chronic pain, Rheumatoid Arthritis, Lupus, Bipolar, or any health condition that involves symptoms that the patient may be dealing with. You (the patient) gives data to PLM and they (PLM) gets that data and processes it into information for You.

You (the patient) give data (your conditions, symptoms, treatments) to PLM and (PLM) gets your data, processing your information into “data points” These data points are combined with all the conditions, symptoms, and treatments of patients in their system. This information is then available for YOU to see and explore.

If you have chronic back pain you can look up how many patients have your chronic back pain, their symptoms of chronic back pain, what medications they take for chronic back pain, and how they cope.

  1. Click on CONDITIONS at the top of your dashboard
  2. If you have listed chronic back pain in the system you can find your condition from “My Conditions” at the right of the form. Or you can “look up” chronic back pain in the space provided.
  3. Type in Chronic Back Pain.
  4. You will find Chronic Idiopathic Back Pain which is pain that lasts for 3 months or more.
  5. Below Chronic Idiopathic Back Pain are an Overview of the patients in PLM by age, sex, and the start date of this condition.
  6. Look at the table on the left and you’ll find sections on “How it affects people,” “How people treat it,” and “Compare treatments.”
  7. Click on “how people treat it”
  8. As of the date of this post, there are 79 treatments for Chronic Idiopathic Back Pain listed by patients.
  9. You can shorten the list by the “Top 10 treatments”
  10. Click on Hydrocodone (for example) and you’ll find an overview of the drug. Below is a chart of the reported purpose and perceived effectiveness
  11. 1166 patients take Hydrocodone for pain. As you scan through the chart you’ll see the other conditions Hydrocodone is taken and how effective it is for patients

You can look up your conditions and symptoms in the same manner. This information may not seem relevant, but once you are able to compare the evaluations of other patients you find you aren’t alone is this battle to cope with your condition. You can even find info about how other patients take a medication, with food or without food.

Explore the site to see if it is the right fit for you. I’ve found it’s a great way to track my progress by submitting my daily info. Charts show me if a medication is working, how my symptoms change, and a detailed chart I can take to my next appointment with my pain management doctor.

I was amazed that she wanted the info to put in my chart. She found it interesting and a great tool for her to see how I progress. Take a moment to check out PLM. It might be a good fit for you or you may feel you just don’t have the time to submit your information. But look at it this way. If you submit your information you are contributing to PLM’s research and their commitment to sharing people’s information to clinical trials, the FDA, AstraZenaca, Takeda Pharmaceuticals, and M2GEN (cancer patients research team.)

Thanks for reading and let me know if you join PLM. I wish you a day with very little pain so you can enjoy doing the things you love to do!

Warmly,

Carolyn

 

Posted in Coping with Chronic Pain

Does Your Environment Increase your Chronic Pain?

Good morning!

It’s Friday, March 10th and one week from today we’ll be in our new home. It seems as though this journey has taken forever since we first moved to the NC mountains on December 1, 2016. But that is because our environment was less than normal. Living in my brother-in-law’s home was full of tension, irritation, and bad vibes. A very stressful four months.

Another aspect of tension and worry has been the present President and his administration. Whether you voted for him or not, it is clear that corruption, instability, and overspending are evident in this administration.

As a chronic pain and fibromyalgia sufferer, I’ve found that almost everything I read about the current administration inflames my pain throughout the day. Why would this person and his proposals affect me in this way?

It boils down to stress and the fact I allow my environment to stress me out. And because stress affects every aspect of our bodies – our sleep patterns, attitudes, and pain levels – it can be difficult to control.

But, I did find an article by Helen White, a contributor to the Huffington Post. Diagnosed with hypermobility syndrome of the joints (HMS), a condition that features joints that easily move beyond the normal range expected for a particular joint. It is a benign condition per medicinenet.com, Ms. White has first hand experience with chronic pain and learned ways to tolerate and cope with her pain. (You can read more about this illness when you click on the highlighted typing.)

Ms. White’s article, “5 Things Living with Chronic Pain has Taught Me”, provided me with tools to live my life a little more stress-free and I briefly share her tips here:

LISTEN to your body and PACE yourself!

Without a doubt this is the hardest thing to do! I’m getting better at it, but I’m still not at the point to stop when my body gently gives the warning signs. No, I wait until the pain is full blown. Then it takes twice as long to control the pain.

Ms. White suggests “taking frequent breaks for gentle exercise and try to take things a bit slower.” She has a morning and evening yoga routine and listens to meditation CDs.

2-Have EMPATHY for others                                                                                                                                            

If your friend suffers from a Chronic illness, please don’t make suggestions on treating their pain. This isn’t helpful because unless you experience a Chronic Illness, you have no idea what your friend is experiencing.

I went through this experience in 2013 when my world literally fell down around me. As one who loves to dance, I began walking with a cane to alleviate my back pain and help with my balance. It was devastating and my bitterness came across on FB and toward my friends and family. And especially when someone tried to give advice about my pain meds and what I should do.

Thoughts of suicide were entertained – not one of my finest moments. However, by the end of that year, I realized I didn’t like myself. I vowed in 2014 I would change my attitude about my present condition and begin accepting my “new normal.”

3-PATIENCE!

First, you know your episode of pain will eventually ease off with your pain meds. It takes my pain medicine up to 90 minutes to kick in if I’ve gone past the next recommended dosage. However, I stay on top of my pain if my medicine is taken as prescribed. Don’t be a hero! Because you are feeling better and believe you can work longer, your pain will sneak up on you. Don’t wait until it is full blown to rest and take your next dosage. It takes longer for your medicine to take effect and you’ll be miserable.

4-KINDNESS – to yourself and others

Don’t beat yourself up if you have to take a day of rest. The chores will be there tomorrow. Your body comes first and as normal humans, we feel selfish about taking rest periods throughout the day, or even taking a whole day to relax to rest our bodies. Being a “get it done” person, I throw thoughts of unpacked boxes and rooms in disarray out of my mind. I relax and stop worrying. There is no time limit on getting the house in order.

For your family and friends who experience chronic pain, surprise them with their favorite cookies, a small potted plant, or a bunch of flowers on their “low” days. All it takes is a visit to let them know you are thinking of them. When in my lowest mental state due to chronic pain and a friend stops by to visit or phones, it brings me up and helps me forget my pain for a while.

5-Live in the PRESENT

Fully enjoy the moments when your pain is under control or tolerable…while at work, home, or with others. Every second counts when you have these moments so live life to the fullest! Oh, but don’t “over-do!”

You can read Helen White’s full article by highlighting the article title above. She goes into a little more detail for each plan of action and I’m sure you’ll enjoy her writing. She writes “down to earth” and I love a writer who doesn’t infiltrate their articles with words I don’t understand!

Thank you for your patience with this blog post. Over the last few weeks I’ve had a respiratory infection and then to make things just hunky-dory, developed walking pneumonia last week (March 31st to be exact!) Our little house is coming together, but the small extra “bedroom/office” has become the holding station for any unopened box. Ms. White’s article put me to the test because I must rest to get better. Of course, every time I get up I’m back in the recliner because I’m out of breath. The extra room will get done, maybe not as quickly as I hoped, but it will!

Have a wonderful week and please contact me with ideas, suggestions, and questions on future blogs. I’d love to write what you are interested in about chronic pain.

Carolyn