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?

In-depth Research Information for Fibromyalgia Survivors

Hello Peers,

I felt that this informative piece should be posted for a overview of everything associated with our pain syndrome. It addresses all the nuts and bolts.

http://umm.edu/health/medical/reports/articles/fibromyalgia

XX

Patterns, Light, and Fibromyalgia; A Symptom Often Unknown or Overlooked by Physicians

http://www.fibromyalgia-symptoms.org/vision-and-fibromyalgia.html

I went to my doctor’s office last week to deal with a sinus infection I obtained from the flu. I already felt incredibly tired just getting to the office and was not prepared for what I felt next; it’s not something I consciously notice that often anymore. I was ushered into a room that was on the 10th floor with a great view overlooking our hills and the city. I was asked to take a seat on the patient table, which I did. I looked up as the nurse assistant closed the door and my eyes went bonkers. There on the wall in front of me was a bright yellow paint and a chair with bright yellow circles centered in the middle. The entire bank of windows, on two sides of the room, were covered in blinds that were open with slats, but not raised.

I tried to stay seated on the table but got up after only two minutes. I felt dizzy and my head was now aching. The circles and slats were jumping up at me! When my doctor came in, I explained why this was not a great room for fibromyalgia patients. He said he thought it was a nice room. When I explained about patterns and my perception, along with the consequences, he reacted as if he had never heard of this before. Overwhelmed with being ill for some time and the new infection, I let it go. However, it struck me that most general physicians do not know about this symptom, despite the reality that for us, it is a very important symptom.

The manner in which certain patterns effect my pain and create a sense of being overwhelmed is something that I deal with every time I go out. I have learned to take in visual information in pieces, I have also learned that when I already feel flared it is time to create a boundary when shopping.

Department stores are at the top of my list for pattern overwhelm. Whenever I enter one, I quickly go to the area I wish to look in and ignore the rest. If I plan on being inside one of these overwhelming areas for longer than a half hour, I already know I won’t be doing much else. Patterns create headaches for me. They also literally make my eyeballs feel like they are bouncing to a disco beat. This makes it next to impossible to make a decision about what to purchase or even which way I want to turn next. They make me feel uncomfortable, they make me feel like I am losing my balance. In short, they make me feel horrible.

Any task that I need to do when my pain is higher than a level 3 is increased in its difficulty when it involves stacked, colorful, patterned objects. Groceries, driving (especially at night), department stores, walking, even sitting all become twice as hard or even simply unbearable. As I stated, I have learned to compensate. However, considering how much it effects me, why doesn’t my physician know about this symptom? This question leads me down another path of exploration. My cognition issues after being rear-ended.

I still have cognitive issues, three years after being rear-ended. It mostly involves multi-tasking, multiple “things” going on at the same time that demand my attention, and problem solving. I can solve problems but I need additional time. Sometimes, until the next day or longer. Getting back to the patterns exploration, I have been told that my PTSD caused my cognitive issues, but never that my fibromyalgia might also play a part as my eyes already struggled not feel overwhelmed. For the majority of the last three years being overwhelmed was a 24 hour a day feeling. Of course this was not all my eyes, not at all, but what if they played a part that I could have managed? It would have been good to have a doctor talk to me about this symptom of my existing fibro and direct me to create a tool to help manage it.  Ah, doctors. I just have to smile.

Lyrica and Lawsuits; Off-label uses, fines, and Research Empirically Showing the Drug Inhibits New Brain Cell Growth

Dear Peers

Please research this! I received a informative article in my FB account and wouldn’t you know it, my phone is acting up and won’t copy any of the valid research sites I have gone ti in order to verify the tale. Type in the keywords above and get ready. I have been personally speaking out against this and other “black label” medicines since I began my blog.

Did you know in 1994 the Pitfizer company used this for migraines and bi- polar issues? Did you know they had the largest ever fine levied against them for their black market label usage?

I encourage you to do your homework and make an informed decision about your health tools. Whatever you decide, at least you will be aware.

Important Conversation Last Week With my Primary Care Physician and Opioids

http://blogs.fda.gov/fdavoice/index.php/2016/02/changing-course-a-new-approach-to-opioid-pain-medication-at-fda/

My treatments for chronic pain are changing. This is a personal decision I chose after several years of thought and a trial run varied products in the Medical Marijuana dispensaries. Every person who lives with constant pain must decide their own paths, we are each unique with unique pain patterns and life styles. Previously, I have tried the SSRI’s, the anti-seizure meds, and over-the-counter medications. They all failed to work for me. Either they didn’t touch my pain or they fogged up my brain more than it already gets fogged. I have been left with opioid use. Opioid use as prescribed is still very hard on our entire system and causes physical dependency. This creates a slight need to increase the dosage every few years to achieve the same relief.

In order to address my overall health and decrease my dosage, I began trying CBD first, then added in a low dose of THC at night and during flares. After doing this for the last three months, I am seeing a decrease in my opioids; not dramatic but by two pills on “normal” days and more on flare days! I blog about honest relationships and taking personal responsibility with your doctor. Last week, I informed my PCP about my use and my intention to radically decrease my opioid use over a period of several months.

He was completely supportive. He believes medical marijuana has many cross modalities benefits in pain control and much less toxic effects on our system. During this discussion he informed me that the FDA will be radically changing who is allowed opioids and who can prescribe it. This will occur within five years.

I feel that this is not common knowledge in our population and decided to inform my peers. I also decided to be transparent about my decisions in pain treatment. It won’t fit for everyone, it’s not simple for me! THC knocks me out cold, meaning it’s not an option if I go out or need to work. It could adversely effect me in job searches or closing a job offer. For me, natural, less toxic, pain relief is the first step to living better, the rest will sort itself out.

Please read, and research further, the above link.

 

 

My Encounter with a Health Professional: Practical Advocate Lesson

 

Chronic Pain Hint for Advocacy

Advocating with your various medical professionals can be daunting to those who are already worried that their invisible pain syndrome won’t be taken seriously. It can double in agony if you have found a doctor but are afraid to rock the boat of the relationship. I have, unfortunately, way too much experience in dealing with this double edged sword. After 17 years, I am no longer afraid. I am actually more than willing to find a medical professional who understands me, who listens, and who has the ability to understand that my syndrome affects me differently from others; translated, I am sorry doc but I do need different treatment from your “regular” patients.

I have blogged about being your own advocate many times before. In this blog, I am going to relate a real, and personal, story about my advocating with a new medical professional; one that I thought already understood my medical issue. As it turns out, I was not only completely wrong but was caught off-guard at the worst time. The professional is a therapist who is helping me with my PTSD from a rear end motor vehicle incident (MVA) that occurred two years ago now. A big piece of this emotional nightmare arouse because my fibromyalgia basically doubled, leaving me with a Master’s degree and no way to work.

When I first was diagnosed with our syndrome, I spent three years figuring out how to get my life back on track. It took a lot of hard work on my part, discovering my passion and, keeping a positive attitude. I went through my own, private, grief process over losing my life as it knew it before, but never anything close to PTSD. The MVA tore into my psyche, leaving me absolutely numb and left with the knowledge that my future as an independent therapist was probably never going to happen. I am now working on these feelings with my therapist, but on this day I almost walked out the therapists door five times. Instead of walking, I continuously re-gathered my thoughts and advocated the hell out of her problem.

Scene. I hadn’t been in for three weeks, two weeks of the holiday season and the last week, I had been doing just what we discussed, following the weather and cancelled my appointment two days in advance based on the forecast that we were in for a massive storm. I rescheduled for that same week, different day. Scene. I walked in and sat down, paid and waited to discuss how the heck I could get out of this mindful less issue  and start my life again. Instead, the therapist began a discussion, that lasted my entire fifty minute session, about how it was the Super El Nino winter, I could be put on a waiting list and if she had a opening she would call to see if I was available, or, we could just put off treatment until perhaps April! After-all, she had a waiting list of other people who would be consistent and when I signed the agreement I agreed to pay for any missed sessions. Never mind that I told her two weeks later that with the impending weather pattern this would not possible, and, she agreed.

The statement left me in shock. I have never had to pay for missing a doctors appointment, never. Somehow, they have all understood that I have pain in my body that is out of my control. I have had to call them as late as two hours prior to an appointment to cancel and never have I heard anything but, hope you feel better soon. Maybe you are thinking here that I have been lucky. Nope, I have advocated with all of them. So, back to scene. As soon as the initial shock wore off, I began. How exactly would it help me to wait another four months to begin healing? How is helping me to heal by coming in completely by chance? After-all, if she had new patients, odds are they would fill her time. How much have you actually done what I asked and researched fibromyalgia? How would you feel right now if you had fibromyalgia, add a screwed up right knee from the MVA, PTSD, doubled fibro, and gaestroparesis? Do you know how often peers with fibromyalgia get dismissed because our pain is invisible? Yes, I look all groomed; make-up on, jewelry, nice outfit, it all looks good on the outside, but that has nothing to do with how my body feels today, on one of my ok days. Oh, you wouldn’t want someone coming in with the flu, but if I have a medical condition that the barometric pressure affects, causing me intense pain and brain fog, that’s ok with you?

I am now 30 minutes in and the roles have reversed. I am now her counselor on medical issues. And, a bit on therapy. I asked her why she waited to take up my entire session on this after we already had an agreement? I asked her what she would do if she had a patient come in with a condition she was unfamiliar with, wouldn’t she spend time researching the best methods to help that person? And, the flu was understandable, but if someone had a heart problem, or diabetes, or, or, and couldn’t come in a few times, would that be alright? After all, those are also invisible medical conditions.

Scene. Roles switched, compliment given to me by her and agreement reached. I understood she had a business and if I missed two in a row, then I would pay my co-pay for one of the missed appointments. Apparently, although she did not admit it, she had the three weeks in a row in her mind; she cancelled one, and the other was “open” during the holidays, in consideration of which I cancelled four days ahead of time. Lets face it, the holiday season is hard on the medical profession. She agreed to do further, more in-depth research, on forums and blogs, to understand what we go through. She agreed she should have done more before. She agreed that she should have emailed me.

The question remains, do I feel a safe rapport with her now? Time will tell. I hope this personal glimpse into my story of polite, but pointed advocating for myself, will assist you to help yourself.