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 Arthritis, Chronic lower back pain, Fatigue, Fibromyalgia, Health Care, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis

Patients Like Me

Hello, and I hope you are enjoying a low pain or pain-free day!

Finally, after weeks of inflammation and burning pain in all my joints, I have started on the generic brand of Celebrex! (I took this medication years ago when it first came on the market and then was taken off the market due to symptoms of heart problems in patients.) My PA explained Celebrex was doing a great job now and thought I would have good results with it. And she was right! Within 24 hours my inflammation was down and the pain level in my joints was as low as a 2 or 3. I believe it may be helping my lower back, where I have arthritis because my back pain level has been lower, also!

Isn’t it great when you try a medicine and it actually works? There are several medications I’m on that make me wonder if they are doing anything for me. My doctors usually answer that if I were off of the medicines I would see how they are helping me. And although I consider taking myself off those meds, I don’t believe I want to go through the process of getting back on them. So far now, I’ll stick to my medication list.

Today I want to introduce you to a great site I found called Patients Like Me. I came upon this website by accident. After reading the synopsis of PLM I decided to join and see what it could do for me. Bottom line…this is a great site for anyone with hidden illnesses and any illness that impairs you with pain, discomfort, or wishing you knew somebody with the same problems.

PLM claims over 500,000 patients with over 2700 conditions on the single mission of putting patients first! And when you join you’ll understand this statement more thoroughly. PatientsLikeMe is the brainchild of Jamie Heywood, whose brother, Stephen, age 29 was diagnosed with ALS in 1998. Together with brother, Ben, Jamie tried treating his brother’s symptoms and slowing the disease even though it progressed rapidly. Jamie and Ben realized that researching for information and answers to help their brother and his disease was time-consuming and difficult.

Along with another friend, Jeff Cole, the brothers initially launched PatientsLikeMe to connect ALS patients, but it quickly expanded, and in 2011, [they] opened the website to all patients and all conditions¹. Fortunately, for us, we have the opportunity to be a part of PLM and contribute to the research of our diseases while forming relationships with patients, listing our medications, taking forms to our doctor visits, and reporting our daily symptoms. All of these items contribute to the goal of PLM: “a free website where persons share their health data to track their progress, help others, and change medicine for good!²”

I’ve been a member since March of this year and have already met so many new friends through this wonderful site. Not only do you enter your medications for your own needs, but you learn how many PLM patients are on the same medication, encounter similar symptoms, and give advice on taking the medication and how they alleviate their symptoms.

Each day you receive an email asking “how are you feeling today?” PLM is not looking for sugar-coated answers to this question. You tell it like it is. Log in, mark the face you feel at the time you log in (Very Bad, Bad, Neutral, Good, Very Good) and then you can give an explanation of your feeling. This is optional but this piece of information gives you insight into other patients’ symptoms and how their pain is affected by the weather, stress, and frustration.

Because I don’t want to bore you, I’m going to stop for now. But in a couple of days, I’ll post a follow-up to this note with more information on PatientsLikeMe. If you join, please let me know so I can start following you! My username is CNRobin62 and I believe you can search for me and follow me. Then just send me a note that you joined per my blog post. We’ll chat and before you know it you’ll have an arsenal of like disease friends who understand your feelings and frustrations.

For now, enjoy the rest of your day and I hope you have a wonderful week ahead. Thank for reading and I look forward to our next meeting!

Hugs,

Carolyn

 

 

 

Posted in aches, Arthritis, chiropractor, chronic pain, Fatigue, Fibromyalgia, Knee pain, Muscle and joint stiffness, Rheumatoid Arthritis, Surgeries, U.S. Pain Foundation, Uncategorized

Chronic Pain is a Pain in the ***

Good morning!

So far nobody has found my blog post and I really haven’t shared it with anyone yet, but hoping the keywords will bring visitors sooner than later.

Chronic Pain is a Pain in the (fill in the blank on the title) or fill in YOUR Chronic Pain area! It’s in your lower back, upper back, travels down your legs, is in your legs, your feet, your hands, shoulders, neck, head…you name it and most people will share the same pain you do.

So, what do you do about your Chronic Pain? We mentioned chiropractors, pain medicines, and therapy. But I have another option for you. There is a pain organization that helps almost every type of pain a person may have. It’s the U.S. Pain Foundation. If you go to the site (http://www.IntheFaceofPain.com) you will find a ton of information, resources, and help with your pain.

Write your story for them and they will send you information to help you in the form of resources, options for pain relief, and many more interesting and informative pamphlets for you, the pain sufferer. You’ll also receive a “Pain Warrior” bracelet to wear and let people know you are a Chronic Pain sufferer. Who knows, it may catch the attention of a fellow pain sufferer and you can share this information with them.

And if for some reason, you are not able to get on the computer to check out the website, but have a question, comment to me (below this post) and I will look up the answer for you. I joined the Advocacy Group for US Pain to help others with Chronic Pain find ways to deal with their pain every day. It would be my pleasure to help you or guide you to the right person for help.

It isn’t necessary to live with Chronic Pain all by yourself. You have people, support groups, and me, who will help you find a doctor for coping with pain. Plus I’ve thought of starting a Chronic Pain group to meet once a week or once a month so we can get to know each other and share our stories about pain and how we cope with it. You never know what other pain sufferers share that you will benefit from!

Those meetings will begin when it stays lighter in the evenings. I’m not crazy about driving in the dark and some of you may feel the same way. But keep a look out on my blog page for the date of the first meeting, place, and time. We may have several meetings in different locations so you wont’ have to drive so far.

I didn’t get to write my blog yesterday, but I hope you will check it out today. We are beginning a journey with fellow pain sufferers to stamp pain out and learn to live with it.

Until tomorrow, thanks for stopping by and I hope you have a “dry” day in the flood of water pouring down out there!

Take care,

Carolyn