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 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

 

 

 

 

 

 

 

 

Posted in chronic pain

Part 1 Depression and Chronic Pain

Most Chronic Pain sufferers experience depression along with their Chronic Pain for a variety of reasons:

  • the pain meds interrupt their daily lives
  • their social life comes to a halt
  • they don’t feel like doing anything, but staying indoors
  • their friends stop calling to check on them
  • they can’t accept their life as it is
  • they’re in denial
  • the pain is more than they can bare.

Personally, I’ve experienced all of these reasons and I bet most of you have too. It’s hard to go outdoors and try to act normal when your insides are screaming in pain. But, most of us give it the old college try and go out, even if it’s to do nothing other than purchase groceries.

Going to your doctor’s appointment is one step outside, but how many of you truck it back home immediately afterward? Or do so right after you go by the pharmacy first?

I find it hard to go out because I begin to hurt withing 30 minutes after I’ve been walking around the store, even when I have grandiose ideas of stopping by other shops while Rick and I are out and about. We may stop for lunch, but by that time, I’m ready to go home.

By the time I get home, I’m on the heating pad and feeling down because I can’t get out and do the things I use to do years ago before the Chronic Back Pain and Fibromyalgia stepped up their game. So, I plan to see a psychologist to talk about my depression and how to handle my problems with social activity. But if you are seeing a therapist now, how do you know he or she is a reputable therapist? And do they have YOUR best interest in mind?

One place to start is GoodTherapy.org and its article “50 Warning Signs of Questionable Therapy and Counseling.” This article lists the red flags that may warn you to change your therapist immediately. However, Good Therapy suggests that you talk with your therapist first before jumping ship. If your therapist listens to your concerns, she should be open and willing to understand. However, if she isn’t willing to accept your comments, then for your best interest, seek another therapist.

Here are the first 18 red flags (I’ve rewritten them but the meaning is the same):

  1. Counselor does not  have the training to address your issues and/or attempts to treat problems anyway.
  2. Therapist has no interest in your goals or changes you need to make in your life.
  3. Counselor does not give clear information on how they can help you with your issue or concern.
  4. Therapist doesn’t let you know when your therapy will be done.
  5. Counselor isn’t in the habit of seeing a therapist herself.
  6. Therapist will make you promises or guarantees regarding your therapy.
  7. There are unresolved complaints against your therapist with a licensing board.
  8. Your rights as a client, confidentiality, office policies, and fees are not given to you so you can decide to go forward with your treatment.
  9. Your behavior, lifestyle, or problems are criticized or judged by the counselor.
  10. You are treated as inferior by the therapist in subtle or not so subtle ways.
  11. Your family, friends, or partner are blamed for your problems by your therapist.
  12. You are encouraged to blame your family, friends, or partner for your problems by your therapist.
  13. At the expense of focusing on you and your therapy, therapist gets personal psychological needs met. This could be knowingly or unknowingly.
  14. Your counselor tries to be your friend.
  15. Without your consent, your therapist initiates touch (hugs, etc.).
  16. Your counselor may try to have a romantic or sexual relationship with you.
  17. Rather than focusing on your problems, your counselor talks excessively about her personal issues or self-discloses personal info. This has no therapeutic purpose for you.
  18. Counselor tries, although not related to your therapy, to enlist your help with something.

To get the word for word “red flag” of these 18 warnings, be sure to check out the link above. The next two parts will continue with the rest of the warnings. Then we’ll talk about how to find a reputable therapist or counselor!

I hope you have found this helpful, especially if you are in therapy now and not receiving the results you hoped for.

Take care of yourselves and do something for me today. Go outside. Just walk around your house or look at your flowers. But get out of the house. It will help you so much.

With care,

Carolyn

 

Posted in chronic pain

Off by a few days!

Well, there goes my theory or my action plan to blog every single day for 30 days and turn it into a habit. Some weeks go by great and getting everything in the way you want to works out…other weeks turn into a crazy topsy-turvy mess and before you know it you’ve forgotten the write.

Still talking about Chronic Pain and that is the main reason I neglected my daily posts. My own chronic pain threw me a curve ball and I missed it. But this morning I’m feeling better and “on game” so I give you some more info regarding chronic pain.

I looked up chronic pain and came up with “chronic illness” at http://www.encyclopedia.com/topic/Chronic_Illness.aspx. This article gives the history of the sickness and the rise of death in the early years. In developed countries, “epidemiological transition” was experienced and “a shift in the disease burden from high rates of death from acute, parasitic, infectious diseases, and short life expectancy to longer life expectancy and high rates of chronic diseases.

Modern scientific medicine was developed due to the use of antiseptic surgery, the development of accurate diagnostic technologies — all advances in medical science. The basis of medical practice and medical approach to dealing with disease came from the “germ theory of sickness.” Reducing infectious disease generated enthusiasm for a cure that would be found for all diseases. The focus of medical science  turned to the pursuit of “magic bullets” of medicine or drugs that would miraculously heal diseases.

The medical model of disease concludes there is a sharp and clear distinction between illness and health, based on the belief that sickness can be identified by diagnostic tests and proved by physicians. Acute, infectious diseases’ basis assumes diseases have specific causes and clearly distinguishing characteristics…they can be healed by medical therapies (Mishler 1981).

This report continues with the development with modern medicine and the rise of chronic illness. For just a taste of what this report is about, I’ve written the previous paragraphs for you. However, I’m hoping to have an article on here within the next few days that give detail to the onset of chronic illness up to today’s living with chronic illness.

Chronic pain can put you down in seconds and I believe that is what happened to me these last few days. Another factor of Chronic pain is lack of sleep. I would fall asleep while someone was talking to me and realized it was time for “rest!”

Share your experiences with pain and how you deal with the days of needed rest. Until next time, I hope your pain does not control you, but that you control your pain.

 

 

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