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 lower back pain

Decision Reached – Spinal Cord Stimulator

I’m back! And I made a major decision two weeks ago with my pain management doctor. I told him I wanted the Spinal Cord Stimulator removed from my back. He looked at me intently and asked, “Why?”

Then I went through my list of prepared reasons:
1- it doesn’t work
2- my pain has increased and the SCS isn’t even touching the pain
3- the battery bothers me
4- little strikes of pain are felt along my spine

He smiled and said, “Okay.” The reason for his question, he explained, was most patients begin to give reasons for wanting the Stimulator removed and realize they don’t have a valid reason. The SCS helps them at some percentage (the best results say 50% pain is removed) and they decide to leave it in.

However, with me it’s a different story. The trial for the SCS went great. One lead was inserted in my right side and left in my back for 5 days. I had no pain on my right side. But my left side hurt continuously.

When the right lead was removed, all my pain returned and I knew this was the product for me! Finally, quality of life would return and I would dance again.

Unfortunately, after the implantation of three leads and the battery pack, and numerous reprogramming… my pain has been with me every day since the surgery. In fact, it has increased. I didn’t enjoy the relief I received from the trial. Why? Nobody knows. But it would have saved a heck of a lot of money and discomfort if that darn trial hadn’t work.

I’m not saying it doesn’t work for everybody. Just me. It works for my husband. His SCS gives him about 30% decrease in his back pain with medication. (Yes, even with the SCS most patients take medication to manage their pain.)

I’ve read countless reports of how the SCS “gave me my life back” and I did my research prior to the trial. I didn’t go into this without thorough information. Yet, it didn’t work.

How do you know if the SCS will work for you? First, I would suggest you have the same doctor perform the trial and the actual implant. (It took half a dozen doctors before I found one who agreed to do the surgery due to the instrumentation in my back.) If you have the same doctor do both procedures, and I believe in most cases that is the correct approach, then you’re ahead of the game I played.

Secondly, research, research, research! Talk to other patients who have had the SCS implanted. Try to find people with similar back problems, and ask them a ton of questions.

And lastly, depending upon the Spinal Cord Stimulator Company your doctor uses, go to their website and read the reviews, find out what to expect, and ask questions on their site. Most companies have a patient forum but if you can’t find one, Google – Spinal Cord Stimulator Patient Forums.  These are the ones I found:

http://www.spine-health.com/forum/categories/spinal-cord-stimulation

http://www.mdjunction.com/forums/spinal-cord-stimulator-discussions/general-support

forums.webmd.com/3/pain-management-exchange/forum/2961

http://www.healingwell.com/community/default.aspx?f=16&m=2687933   —  this one came up when I clicked on Boston Scientific Spinal Cord Stimulator/Right Leg
And there are many more forums listed…
As with any medication you are prescribed, you look it up, check out the side effects, and read the reviews before taking the medicine. With the proposal of a Spinal Cord Stimulator, treat it as you would a new medication.
RESEARCH IT!
I’m having the battery pack removed, not the leads because they have adhered to my spine. But when I talk to the surgeon and have the surgery, I’ll let you know how it went. Until then….
Here’s hoping you feel better today than yesterday and even better tomorrow!
God bless,
Carolyn
Posted in Uncategorized

Part 3 – Chronic Pain and Depression

First, an apology. This third part of the series, “Chronic Pain and Depression,” should have been written and posted a long time ago. Unfortunately, LIFE got in the way and I’m just now writing and posting it! There are so many events coming up that have kept me from posting on this blog in the professional manner that I should. Therefore, I’m committing to writing something on this blog at least weekly and then move it up to every day. The next post will give more details about what is going on and how it is affecting my Chronic Pain.

But now, let’s finish our series on Chronic Pain and Depression…

As you begin your relationship with your therapist these are items to consider after your meeting(s). If there is ever a question in your mind about the therapy you are receiving, stop and seek out a new therapist – for peace of mind if nothing more. Your mind will give you warning signals if:

37.  During the session, your therapist answers his phone. (Not professional! This is time you are paying for!)

38.  As you talk about your culture or religion, your therapist throws insensitivity comments your way.

39.  Denying or ignoring the importance of your spirituality is another warning signal from your counselor.

40.  Your therapist tries to push her thoughts or convictions regarding spirituality or religion onto you.

41.  You find your therapist doesn’t empathize at all.

42.  Or, your therapist empathizes too much.

43.  As you talk about your problems, your counselor appears overwhelmed. You begin to feel like you are abnormal with so many problems. Not true! It’s time to start looking elsewhere.

44.  Your feelings or issues make your therapist overly emotional, affected or triggered. 

45.  Against your wishes, you are pushed into highly vulnerable feelings or memories.

46.  Or, you find your therapist avoids exploring your emotional or vulnerable feelings.

47.  Your permission is not asked when your therapist begins using various psychotherapeutic techniques with you.

48.  Without helping you to appreciate and resolve the underlying causes, your counselor tries to get you to exert overt control over your impulses, compulsions, or addictions.

49.  Instead of teaching you coping skills to manage your impulses, your therapist prematurely or exclusively focuses appreciating and resolving the underlying causes you have with an issue or compulsion.

50.  Your therapist is consistently late for your appointment. Signs of canceling or missing your appointment on a consistent basis is another warning sign.

Those conclude the 50 Warning Signs to look out for during your first few appointments with a therapist. Some of these signs may not show up until you are well into a therapy program. When you feel uncomfortable with the lack of progress or the overt pressure you receive from your therapist, ask your doctor for another recommendation. There is no time limit on switching therapists.

It is better to adhere to the warning signs your brain picks up on rather than do nothing and become trapped within your therapist’s expectations or program. You should not be forced into doing anything you don’t feel comfortable doing.

I hope this three-part series has given you some enlightenment and permission to move to another therapist. When I read this article online at GoodTherapy.org it helped me to understand the reasoning behind a family member’s actions. The problem is if your loved one has succumbed to questionable therapy, there isn’t anything you can do about it. It is the person’s choice to continue with the therapist and all you can do is hope he/she will eventually see the therapy given was incorrect.

Thanks for reading and if you know of other “warning signs,” please be sure to let the author know them at the link for Good Therapy.

Carolyn

Posted in Health Care

Customer Relations Management (CRM)

Customer relations management (CRM) is software that uses information technology to help organizations build customer relationships and increase the value of the goods and/or services it provides.  The advantages of CRM include tracking and documenting customer history with instant access to those records, determining the best-selling practices for the organization and analyzing reasons behind customer complaints.

A medical office benefits from the CRM techniques in a variety of ways.  First, gathering complete patient history along with recording every subsequent office, lab and radiology visit allows CRM to track, document and monitor the patient’s information.   Physicians access patient information instantly, enabling effective health care for the patient.  Correct diagnoses facilitate prescriptions, tests and/or procedures for the patient’s care.

Secondly, future occasions of communication with the patient, including phone calls, visits and surveys, are documented and recorded in the CRM.  The CRM monitors the information and suggests support and service practices for the medical office to consider for improving patient relations.  In addition, by responding to the patient’s needs and creating improvements with business practices and services, the medical office effectively attains its performance goals.

Although CRM helps the medical office staff improve patient relationships, ultimately, effective communication is required for formulating the correct diagnoses and care.

Ineffective communication within a medical office however, creates a number of dangers for the medical office and its patients.  CRM offers recommendations based on the input of complete and detailed patient history.  The patient needs to feel he can disclose all pertinent information to the nurse or physician, without judgment.  In addition, the physician needs to create an atmosphere where the patient has no inhibitions expressing his concerns, problems and symptoms.  If the patient feels embarrassed or ashamed of disclosing all information, the physician is unable to properly treat his problem.  Ineffective communication results in the possibility of the patient being misdiagnosed and/or receiving incorrect medication.

Problems occur with ineffective communication among the office staff also.  If an administrative assistant receives incorrect information from a nurse regarding future appointments, the patient may be scheduled for a follow-up rather than a procedure with the physician.  The nurse gives the patient specific instructions, for example, stopping blood pressure medication ten days prior to the procedure.  Because being off the blood pressure medicine is dangerous for the patient, he waits several weeks until he is able to go off the medication again and further delays the procedure.  In addition, the appointment, certified incorrectly for a follow-up with his insurance requires additional time to re-certify the procedure.  The certification process takes hours or days depending upon the type of procedure and insurance coverage. These problems, due to ineffective communication, cause the patient to suffer longer than necessary and cost the medical office in wasted time and money.

The CRM is an important and effective tool for the medical office.  However, it relies on effective communication among the medical staff members and patients in order to offer the medical office assistance with improving patient relationships as well as the value of its services.

Posted in Uncategorized

Part 2 – Depression and Chronic Pain

Welcome Back!!!

As many Chronic Pain Sufferers know, depression attaches itself to the excruciating pain you already suffer through. This occurs for a variety of reasons:

  • you just don’t feel well
  • you don’t feel like going out with friends
  • you may feel abandoned by your friends
  • you can’t do the things you did before the pain became “chronic”

And I’m sure there are many other reasons to spark your depression, but I found these to be the top four that hit me wth depression faster than my pain meds took effect.

We talked about the warning signs of questionable therapy and counseling to look for when you decide to go to a counselor or therapist in Part 1 and we’re going to continue with the next 18 items:

19. Without authorization, your therapist discloses your identifying information.

20. Your therapist begins to tell you the identity of another client.

21. You learn your therapist has never participated in personal therapy work.

22.You find you therapist cannot admit mistakes or accept feedback.

23.Without helping you to change, your therapist focuses extensively on diagnosing.

24.Counselor talks way too much, without giving you a chance to speak.

25.Or, your therapist doesn’t talk at all.

26.Leaving you confused, your therapist speaks in “psychobabble.”

27.Without considering your feelings and somatic experiences, your therapist focuses on thoughts and cognition at your expense.

28. At the exclusion of thoughts, insight, and cognitive processing, counselor focuses on feelings and somatic experience.

29. Acting as if they have the answers/solutions to everything, therapists spend time telling you how to best fix or change things in your life.

30. Your Counselor gives frequent unsolicited advice, makes decisions for you, or tells you what to do.

31.Your dependency is encouraged by your therapist by allowing you to get your emotional needs met from the therapist.

32. Against your will, your therapist attempts to keep you in therapy.

33.The belief factor of the therapist is that only her counseling works and she ridicules the approaches of other therapists.

34.Making you feel uncomfortable, your therapist is contentious with you or may be confrontational.

35.Your counselor doesn’t remember your name or your interactions from one session to the next.

36. Appearing to be in her own little world, your therapist doesn’t pay attention to you, listen to you, or understand you.

I’m sure you will agree these are powerful factors to take into consideration when you are paying your hard earned money to see a therapist for help and guidance. Be sure to print these items out here or go to GoodTherapy.org for the full article. Part 3 is the last blog regarding the warning signs of questionable therapy. After that blog, we will look into the positive signs of therapy.

I hope these series are helping you with your therapy if you are going to a therapist or counselor or if you are considering going to a therapist. And hopefully, you are not seeing any of these negative factors with your therapist.

Take care of YOU, and I look forward to hearing from you,

Taking pain one day at a time,

Carolyn