AACIPM: Resources For People With Pain

These have been trying times for everyone, and anxious times for many of us living with conditions that cause chronic pain and illness.  Everything I write about, being with people to avoid feelings of isolation, focusing on what we can do, and finding coping mechanisms that promote mental, physical, emotional, spiritual balance has been helpful to me, and I hope our readers. 

When I wrote my last blog, I talked about how we have a leg up on this staying in isolation thing. A lot has happened since then. We know more about COVID, we have better treatments and some options, all the things people living with intractable pain hope to have. However, the virus is not gone and neither is our chronic pain.

 

Though I have cut way back on the computer and social media time in an effort to manage my own pain issues, I cannot let September roll by without expressing the importance of accessing our resources. Therefore, when I got my monthly email from my wonderful group at PAINS-KC with a link to the updated resources at AACIPM, I was excited to highlight this valuable resource for my fellow fibro and chronic pain survivors.

 

WHAT IS AACIPM?

 

"The Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) is the first-of-its-kind multi-stakeholder collaborative, comprised of people living with pain, public and private insurers, government agencies, patient and caregiver advocates, researchers, purchasers of healthcare, policy experts, and the spectrum of healthcare providers involved in the delivery of comprehensive integrative pain management.” Read on…

 

RESOURCES

 

The AACIPM website offers many helpful resources and useful tools for those of us living with chronic pain, such as:

 

• Apps to help manage pain, track pain, deal with flares, etc.
• Books written by friends and fellow authors, Toni Bernhard, Dr. Lynn Webster, and more that I look forward to reading.
• Videos offering summaries and visual aids for understanding pain.
• A short summary of various websites and the support or information they offer.

 

THE ALLIANCE

 

The patient and pain care providers are the two most important stakeholders for guiding and participating in important research to learn more about chronic pain as a society.  The Alliance to Advance Comprehensive Integrative Pain Management brings the stakeholders together with a united force. You can read about the history, here.

The AACIPM offers a plethora of additional information on symposiums, advocacy, who is participating, and more from those I have had the pleasure of working with in the past. I suspect you will find something that piques your interest.

 

“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.”

- Albert Schweitzer

Additional Reading:

Pain Justice: A Resource For Chronic Pain Survivors (Posted March 1, 2020)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Exercise and Fibro by Celeste Cooper

Because we are all unique individuals with varying comorbid or co-existing conditions, you will want to experiment with different types of what I like to call “movement therapies.” For instance, a person with lung disease will not have the same abilities as someone who is able to swim and jog without an increase in their

symptoms. A fibromyalgia patient who also has myofascial pain syndrome will want to make sure their myofascial trigger points are being successfully treated before exercising a shortened and weakened muscle. 

Exercise that keeps your muscles from wasting and keeps them from becoming stiff is the one that will help you most. Try not to become so afraid of pain that you stop moving all together, because research tells us a static or sedentary lifestyle is not good for the FM patient, and non movement can contribute to pain not to mention add other health complications.  If you have other physical limitations, try rocking in a rocking chair. If you have difficulty with balance or you have severe joint disease, you may want to try Yoga that incorporates the use of bolsters. T’ai Chi is also a good movement therapy because it requires focus and slow movement. If you choose to swim, do so in a warm water pool to avoid putting your muscles under any undue stress. Aerobic exercise is important too unless you fall into a subgroup of fibromyalgia patients that has heart rate and blood pressure drops, in which case the autonomic nervous system isn’t working quite right and aerobic exercise could be harmful. In other words, let your body be your guide.

"Keep a “Movement Report Card”

As with all things fibro, our bodies don’t respond normally, so soreness may not occur until several days later. A mild increase in muscle tenderness will occur in anyone so don’t let this stop you. However, if you find the tenderness is extraordinary, back off, change your movements, or rest for a few days before beginning again. Check your records to see if there is anything in particular you added that might be causing more problems. This might include a new yoga position or an increase in your time walking. Always be respectful of any other conditions you have in addition to fibromyalgia, and unless your doctor tells you otherwise, drink plenty of water.

Hobbies that require physical movement, such as gardening or chasing butterflies around with a camera are good movement therapies too. Use caution, and control movements so you don’t put undue stress on the same muscle groups, your spine, or your joints. Hobbies that require you to move and get outside not only helps physically, it helps us spiritually too. 

“Musical ideas sprang to my mind like a flight of butterflies, 

and all I had to do was to stretch out my hand to catch them.”

~Charles Gounod

Don’t forget to stretch. You don’t have to go overboard, be gentle with yourself. You might try incorporating a stretch while in the shower and then use your towel as an exercise tool while drying off. Put frequently used items at a level where it will provide a mild stretch to reach them. When up an about in the house, try bending over and touching your toes several times a day. Speaking from experience, come back up slowly so you don’t topple over. When you are not in a flare, try parking further away when you are on an outing. Try walking backwards from time to time, supposedly, it burns more calories and exercises the mind. Unrealized exercise works the same as a movement routine.

Always start low and go slow.

Use as much of your battery as possible without completely draining it.  If you expend all your energy in one day, it can set you back several. Whatever you choose, do it wisely and document your symptoms and tolerance. Always start low and go slow. Your best choice is a type of movement that you like to do.

You can read more about many different types of exercise, therapies, and precautions in 

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome,and Myofascial Pain: The Mind-Body Connection.

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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Who is Fibro Warriors ~ Living Life? Guest blog by Melissa Swanson

Who is Fibro Warriors ~ Living Life?

Melissa Swanson started Fibro Warriors~Living Life Facebook page in September of 2012. In her quest for understanding and supporting fibromyalgia, she joined various online groups and Facebook pages. Quickly she learned how important it is to be able to talk with others who have been there/done that! More importantly, she believes in sharing information from verified credible sources. Fibromyalgia is real. Melissa also believes in the value of surrounding one's self with positive people in order to create an environment for healthy coping and energy conservation.

Who is Fibro Warriors ~ Living Life?

My name is Melissa. I am a full-time working married sports mom of a very active 14-year-old daughter and a one-year-old Border Collie.

Throughout my childhood, I experienced many symptoms of fibromyalgia and myofascial pain syndrome. I had muscle knots, leg cramps, and sensitivity to light and touch. I bruise easily suffer from high anxiety, panic attacks, and depression.

In 2009, my family experienced a family loss that led to an emotionally stressful year of traveling. The extraordinary physical work also caused more health issues to develop.

I spent 2010 going from doctor to doctor taking every test. Finally, a thorough exam led to the diagnosis of fibromyalgia and other syndromes/diseases that I call evil sidekicks. This is when I began searching the internet to find others who could help me understand what it was like to live life with fibromyalgia. What I found was—having fibromyalgia is like riding a roller coaster with many unpredictable ups-and-downs.

It is important to be your own health advocate. I have found the combination of keeping a daily routine, using prescription medications, finding helpful supplements, stretching, participating in light warm water exercise, maintaining good sleep hygiene, having a positive attitude, and putting together a good team keeps my pain and my health manageable, most days.

My "Fibro Team” consists of my Rheumatologist, Neurologist, primary care provider, Acupuncturist, Chiropractor, Psychologist, a pain management doctor, and a wonderful, positive support group.

Along my journey, I have made wonderful friends and fellow advocates. One of those is Celeste Cooper. I am proud to call her my friend and mentor. Celeste Cooper, RN, BSN, is an Author, pain patient/advocate and fibromyalgia expert at Sharecare.com and thesethree.com.

Through my networks, I share motivational images, helpful hints, questions, and my own experiences. Celeste brings her medical expertise and experience as a patient, registered nurse, educator, legal nurse consultant, and member of the Pain Action Alliance to Implement a National Strategy. She considers herself a conduit of information by sharing what she learns regarding current studies, associated conditions, and so much more.

Fibro Warriors ~ Living Life strives to help others living life with "Fibromyalgia."

The key words are “LIVE LIFE.”

We have made it our mission to tell other Fibromites that they can still live their lives.

We believe through education, positive affirmation & a great support team that we can all be a

Fibro Warrior ~ Living Life.

Read more @ http://survivingwithfibro.wordpress.com.

I am a freelance writer for the online magazine, Living Well with Fibromyalgia (subscribe@http://fibromodem.com)