Flipping my Living Well with Chronic Pain; A Hard Look at My Aging Parents

Hello Peers,

Life doesn’t stop because we have pain, it marches on.  Yesterday I happened to be at my parents home during a trying moment.  My journaling, adapting my activities of daily living, learning about calming methods and alternative medicines, listening to my limits ( and applying them), work and academics in this and related human needs fields, all served me well. I read my email to my husband this morning and he suggested I put it in my blog.

A side note before the email posted below;  I have not been attending to this blog for quite a while now; I am sorry for that as I know, as you know, we all are looking for our Peers to assist one another. However, as I stated in my last few months of blogging before this,  I knew I needed time to assist myself before I could continue to assist others. Don’t we all.

I am almost finished with one small project. It’s a project that would have taken a person not in constant pain about two months; it’s taken me almost eight months. Still, I have the pleasure of knowing I did it! My second “project” will be advertised here in about two months. I have been slowly trying to put together a “Well Living With Chronic Pain” program for several years. I will offer it in person in the area I live in, and online via pre-made video webinars.  Both will not accept insurance but will be inexpensive with options for us, financially challenged Peers. I created this out of need. Books are out there in the dozens, pain clinics, advice, support chat rooms, but I could never find one easy to follow, and adapt for my needs, program that allowed contemplation and practice with advice from Peers. This is not a money maker, rather it is a act of love.

Hello my parents

Today was a good day for my observations. It was hard for me to watch (…) in pain but it was also a good thing. I was able to step in and use my skills without having the emotional components of a marriage. I knew tricks of dealing with bad pain that I instantly began applying.

(…),
I observed you having little patience with assisting (…) I know you had a very difficult time when you were young; suffering with asthma and your parents virtually ignored you. I believe you learned to keep it all in as no help was going to come to your aid. This, combined with your easily upset emotional equilibrium, makes it hard to be patient when a loved one is moaning out loud. I understand that. The suggestion I have is to put yourself in their shoes, not yours, and practice acceptance of this new part of your daily life. Also important, find ways to remove yourself and talk with (…) about needs versus wants. (some wants are actually needs, this can actually be tricky and has to be figured out by him but without no ability for you to continue living)
I could do a presentation for you both if it would help.

(…),
I know from your childhood that you suffered for many months with a debilitating illness; any intrusion like this one brings back fear. You learned that you had others there helping you and voicing pain was a safe thing. You also became in control of your illness, through having that support.

There is nothing wrong with either of these childhood experiences helping you in your adult lives except that they now serve to interfere with your marriage as you both age.

(…),
Be kinder. Also, don’t ask what (.) wants, think about what (.) needs. (.) needed looser pants. Period. Roll up the socks. Have (.) sit to dress or stand but don’t inquire too much. (.) has his rights but needs to let go a lot more.

(…),
Don’t demand every little thing. If your helper says you don’t need your wallet, you don’t. Practice releasing some control. Believe me it will serve you and future caregivers.

Both of you are going to need to practice asking for help. Being private is great. Nothing wrong with it. However, if an illness or aging issue is too much your going to need to speak up and trust that I am a competent adult who can, and will, be there for both of you. Your other children are far across the country and can’t come stay with you for a few days or weeks.

I love you both very much. I am sad to see your pain but I think, and hope, my words might help here. My future actions as well. I am a trained Social Worker, Independent Living Specialist, and Chronic Pain Peer who has lived well with many syndromes for decades.

***Living Well doesn’t mean one lives perfectly or fully in a typical eight hour day, it means as little stress as one can create by mindfully creating ones life.
💜🦋💜

Lucinda Tart, ILS, Chronic Pain Peer, MSW

The Longest Fibromyalgia Flare in Years; New Chronic Neck Pain

Three years ago I was rear ended while stopped at a red light. The van totaled my cars rear, subsequently totaling the car. It, and me, were shoved by the impact to the end of a large intersection. I have suffered through numerous physical and mental issues due to this, lately it’s my neck that’s wreaking the havoc I’m enduring every day, every minute.

The impact inuded whiplash, I was “out” during my trip across the streets, but know my head was bobbing away. I tried to see a specialist about my neck pain but with all my other injuries, the process got started and then I dropped the ball. I was overwhelmed with so many doctors appointments. My family helped me with virtually everything for two and a half years, I was really in bad shape. Today, I am in medium shape.

The last month or so, instead of experiencing neck pain several times a week and when I lay down to sleep, I am having chronic pain in the neck! Those of us with fibromyalgia know that our neck and shoulder area is already a tender area. My neck pain is increasing the trigger point pain in this area due to tight muscles or something else that I haven’t had diagnosed yet. All I know is it hurts! This combination has kept me on my coach, or in bed, for almost two weeks now. At first I was accepting of living with increased pain; thinking it would calm down. It’s not.

I am not feeling very calm about it today. I am feeling angry. And, that’s ok. But, it’s not going to be alright if it screams pain that stops me from all activities of living, except walking my dog, for much longer. The only thing I am accepting right now is that it’s time for me to go back to the specialist, and I need comfort food. Chocolate sounds really good right about now.

THE Continuing Question; Opioids Use for Chronic Pain

One-third of long-term users say they’re hooked on prescription opioids – The Washington Post
https://apple.news/ASaZtPbh5QxepZLsdPPEaXg

Its been several months since I’ve posted anything in my blog, but this news piece warrants my response. This is only my opinion on this subject, as someone who has chronic pain and as one  who uses opiates for the relief of that pain, I have something to say that’s important on the subject. The very first thing I noted in this article was the use of the words words, “addicted or dependent”.  After 16 years of use for my chronic pain I am dependent on opiates. This is very different from someone who becomes an addict, and until this difference has been statistically weeded out we need to stop blaming people with pain and they are doctors for the epidemic of addiction.blaming people with pain and they are doctors for the epidemic of addiction.

 

I have stated in previous blogs that the other medications that have been developed in the last decade don’t work for me, that doesn’t rule out that they work for other people because they do. One of the main tenants of getting rid of using opioids for chronic pain is that there are other medications out there, does this meanthis mean that everyone needs to stop using pain medication because there is the chance of addiction?  No. The reason is exactly as I stated above the other medications don’t work for everyone. Does this mean that doctor should be very clear about trying other medications first, yes I believe they should.  Does this also mean that doctors should be very clear about what opiates are and how they can affect your body, how one can become dependent on them, yes they should. However, I for one am not am not willing to take the blame for people who become addicted. If anyone should take on this  plane game, it should be the doctors who don’t monitor their patients use closely.

When,http://www.prescriberesponsibly.com/articles/urine-drug-testing

In addition to using opiates, I use alternative methods of self-care as well. I’ve written and lot here about having a tool kit of methods to help one deal with their chronic pain. Any responsible doctor would offer these tools to their patients . But as the doctor and patient relationship develops over time, each patient will be able to use different tools differently at different times and the doctor needs to understand that. I’m not sure that it this point in time  doctors really understand this clearly. In the end I think it comes down to doctors being better educated about chronic pain in general and the different ways in which patient can help themselves, doctors can help patients and the different ways that patients may or may not respond to different methods.  The relationship between patient and doctor is always a two-way street. If you don’t have a comfortable give-and-take relationship with your doctor I suggest that you find a new doctor, one who is willing to explore over the years with you different ways that work at different times without judgment.

What do you think about this subject what do you think about this subject?

New Research using FMRI to “View” Brain Functions in Fibromyalgia Patients May Hold Hope for Future Treatment and Diagnosis

A respected fellow blogger posted this study today. I read through it,  having a background in reading research studies, I found this one to contain some real merit. There is still much more to study; this is sound imagery, seemingly combined with sound testing to achieve the results, however, it is a first step in many needed to actually assist us chronic pain peers at the doctors office.

I don’t have full access to this journal study in “Pain” and would feel more hope for future medical help if I knew the exact procedures used, duration, and patients symptoms combined with length of suffering. That stated, I in no way feel the research should be discounted, it should be used as the building block for continued tracking of our brain and central nervous system signals.

How the medical community will apply these findings to our treatment remains a huge unknown as well. But, a first step is always better then not stepping!

With Hope Today,

http://www.neuroscientistnews.com/clinical-updates/neural-signature-fibromyalgia-may-aid-diagnosis-treatment

Change in Weather, it’s Fall, Here Comes the Rain and Wind; Adjusting My Goals

Well it’s the time of year I always try not to think about. The temperatures drop, the wind sneaks under my jacket, and water flows from the dark clouds as the barometric pressure drops. Despite keeping up my positive expectations for my life with fibro, the start of this change in our weather patterns brings a sense of fear in. Each year I believe I will do better when it hits, and each year I learn again that this is simply not how my body reacts.

While my body reacts with an increase in my pain levels, my mind  begins the internal struggle of acceptance. I find my thoughts at war.  The flares of pain put me back in bed making one part of my emotions lean towards hopeless. The mindful self jumps in and begins planning how to accept living well doing less. It’s interesting to observe.

I know my friends and family probably feel that I should be used to these increased pain changes and continue to get on with life. I could buy into this belief and get upset with myself, but to what end goal? Being angry at myself only serves to increase my pain by creating additional emotional stress.

Today I am in bed. I am observing these thoughts right now. I am not angry at my pain. Disappointed, yes. Tomorrow I will regroup my plans for my expectations of how much and where I can work, do household chores, and continue my exercise routine (one I just created). Today, I accept the need for rest.

Follow up to Blog on FDA Ban of Kratom

I got this news, from a FB site I find very useful, today; Important enough to pass on.

Update:

BREAKING NEWS: The U.S. Drug Enforcement Agency (DEA) has announced that a ban on Kratom will now NOT go into effect today as planned.

Fibromyalgia Awareness, Facebook

Weight and Pain

http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/obesity-fibromyalgia.php

I recently wrote a blog piece about my lowered pain levels, or remission state, from my fibromyalgia pain. In that piece, I concluded that a year-long illness I went through, which resulted in a large weight loss was the contributing factor, so I have decided to follow it up with some actual research into this connection. And indeed, losing weight has had medical validity in pain intensity for many years now (see above link). My doctors always told me to lose weight, and to exercise. The discussion of  exercise also been a popular thread among my peers in online support rooms. Most stating it as helpful, if not with weight, at least with a healthier, happier state of mind.

I was always conflicted about this idea. I would come away from the doctors or the thread feeling shame and anger. It’s easy to tell someone with constant pain that they should get out there and walk, or swim, but it’s not so easy for that person to do. I know that just walking the dog could trigger pain for the entire next day; a very large price to pay! I want to interject here that while that is “not” occurring for me right now, it is apples to apples that it will start happening again soon (I have never experienced a remission of pain for this long, not in all my 17 years of living with fibromyalgia). Another point, in my current relief condition, is that I do still have medium pain every several days and a flare-up of pain large enough to send me to bed for the day every 7-9 days, so as I write this I am clear that this piece on weight and exercise applies to me as well as my peers. I felt shamed because I simply couldn’t create a routine of regular exercise, not with the pain threshold I live with. Anger followed because it was easier to project this feeling onto the doctors and my peers then it was to look deep inside myself and take personal responsibilty for my choices.

After losing all the weight and feeling the relief of waking up everyday at a pain level of 4 instead of the years of 5-6, I now feel ashamed that I didn’t try harder a long time ago. Lately I walk my dog farther every day then I did before, even when my pain level is at a raging 8. I make time to walk a slow three miles at least once a week. I am getting a donated recumbent exercise bike for the winter and will be applying for a low-income monthly membership to my local YMCA where I intend to use the swimming pool, take water aerobic classes, and indulge in some gentle and light weight lifting.  I am also looking into finding a free, local Tai Chi group.

I have not turned into an overnight super athlete, far from it. With the evidence of research and my own, personal experience it is obvious that the adage, “no pain, no gain” is true.  I certainly can not do all of these items weekly, but I can integrate them into an alternating monthly schedule. I will need to start slowly! My upper body is triggered very easily, simply driving the car for more than hour creates triggers in my shoulders, neck, and then head muscles (just typing this is aggravating my trapveious muscles). I am planning to begin exercising in chunks and in no more than 20 minute intervals. I will track what I actually do in my journal and then track how I feel immeaditely after, that night, and the next day. After a month or two of alternating exercising styles and journaling the resulting pain or no pain increase, I should be able to create a program that is tailored to my needs. Losing weight has definitely helped both my pain and my attitude, I am sure my seretonin levels are higher than they were, what a blessing it is for any of us to gain this important nuerotransmitter back. Despite the gift of this gain, losing so much weight has left me with wasted muscle mass (as we age we “useit or lose it”). I am keenly aware  that if I don’t start now, I may never start.

I try to share healthy, successful, positive living ideas in this blog. It would be hypocritical for me to share them and not live them myself. Besides, I love the hope of staying in a state of less pain! Try to find your weight loss path. Decide which exercise routine fits for you. Then, start tomorrow. XX