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

 

 

 

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Author:

After training for copywriting, I am currently blogging for a living! So far working with a company that outsources for other companies and I've become the "preferred writer" for two companies!!! I'm very excited about having my own blog site and look forward to adding interesting info for you!

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