Fibromyalgia; Just add in any New Pain and it’s Through the Roof for Us

Dear Peers,

I had my last injection of synovial fluid into my chondra patella cavity today. It hurts like a wasp is sitting between the femur and patella. It hurt like this during and after the first of three injections also. The second was fine. I am thoroughly puzzled; but, no, I am not. I suspect the culprit is Fibromyalgia.

I have no proof of this as truth. I do know that everything that happens that causes additional pain reactions in Fibromyalgia, along with other invisible illnesses, these injuries and procedures tend to cause us much more pain than those who don’t fit somewhere in the spectrum. I must say I am glad these shots are over and done with. Being angry and frustrated with this pain is far from over. As I sit here, blogging to you all, I know I have to get up and accomplish a very few errands. I have too. But, I can barely consider the thought of driving, walking and tackling the steps outside my front door; let alone using the leg with the knee pain to drive.

I inform my doctors about this reaction we have/I have. I informed him today. It did not do me any good. I doubt there actually is anything they could do in this particular situation. With surgery they can and should do things to assist us (use the search box for prior posts) but how can they stop our central pain dysfunction when we have to get something like an injection? If I had put on my thinking cap and used my toolkit, I would never have planned my day like this.

I would have known to stay home or do the chores prior to the injection. I am posting this today to reminder my Peers to use their Well living toolkits, to pre-plan for necessary medical procedures. Don’t be hopeful, be realistic. There are many things we can choose to assist ourselves with and others that we can plan for. If you have not yet started your daily journal for triggers, important information that you need and your support team need, do it today. Or tomorrow as it is late in the day now.

I am going to start posting a step by step plan for all of us to create a small, carry in hand, journal. This pain in my knee is causing my entire body to tense, which is causing me to not breath deeply, which is causing more pain from my friendly co-host, Fibromyalgia. So, I am going to breath; in, out, repeat. And go do what needs to be done. Afterwards I will not do my dishes or make chicken soup. I will rest, go to bed early and ice, ice, ice! Remember, I always say that despite our planned daily chores, they can always be pushed into the next day.

Silver lining to the moment :()

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

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Fibromyalgia, Nature or Nuture, or Both? Hotly Debated Topic Among Peers

Source: Fibromyalgia, Nature or Nuture, or Both? Hotly Debated Topic Among Peers

Dear Peers,

I am re-blogging this post I wrote earlier this month. I am still pondering what your thoughts are on this important and provocative discussion about how we obtained our syndrome. I believe these thoughts are being hidden when we speak about  how we acquired our syndrome to our Peers. I  wish we could feel safe discussing both sides of this debate and hope that one day we will.

I will look forward to reading your comments left below, if you dare. I expect that with the large rain storm coming my way tonight and tomorrow; Monday, November 11th, 2015, I will be resting with increased pain brought on by the lowered barometric pressure. I learned early in my years spent living with Fibromyalgia that this drop in pressure is a huge trigger for my pain. I live Well by accepting this, not by fighting it.

Compassionate Goodnights,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

 

Examples of Posts using “Search”; Images for Assistance with Fibromyalgia

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Hello Peers,

I know I have posted about using the “Search” box for older posts. But, today I thought I would take these pictures to illustrate exactly what is archived and how to find items that may be of use to you. If you click on the picture it will enlarge; great for those of us who just can’t read that tiny print 🙂

Happy Pain Free Day Peers

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Reblog of News; Music Assists with Pain During and After Surgery

Music and Surgery Connection; Positive

listening to music relaxes youAdditional Reading About Music and Guidelines for how to Relax

(the above picture is taken from the “Additional Reading” link)

I want to share this with you as I have had two surgeries in the past nine months; both times I brought my own Ipod and listened to my own music. The second time I did this, one week ago, I answered all the pre-surgery questions, then made it clear, three times, that I would be listening to my music from here on. If they really needed me for anything, to lightly touch me and I would assist with the need, but then close my eyes and return to my own world. I emphasized that I would like my ear buds in throughout the procedure, if they came out to put them back in my ears. I woke up and thought the song was on the same lyric! No discomfort at all.

Additionally, music is relaxing in general. I often put one ear bud in the ear not on the pillow and doze off to music. It relaxes me and my pain. Try it and see how it works for you.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Oh My Fibromyalgia, Why did you Decide my Body Would be a Good Host for You?

https://thebonelantern.files.wordpress.com/2015/10/dancingfinalpostcard.jpg
https://thebonelantern.files.wordpress.com/2015/10/dancingfinalpostcard.jpg

I understand I have to live with you forever from now on. What I don’t understand is why I must  be the one that informs everyone, family and friends, and doctors about how I feel while living with you. Why it is my job to tell others about the latest research that might assist me in accommodating you? You, my  host who lives and thrives inside my body, shouldn’t you take some responsibility since you entered me? I am exhausted just from learning how to join our lives into one entity.

You entered my brain, joining in my cognitive abilities. You live within my central nervous system and inhabit my muscles and connective tissues. Despite entering into all three of these areas, you choose not to speak. Not to offer up a clue about what I should do with you. My relationships don’t know you so they can’t offer me anything except their support. The longer you conjoin with me, the less support many of my friends and family are willing to offer. Leaving me to suffer and speak for you by myself.

How did you enter me? Why don’t my doctors understand you instead of asking me questions and more questions about how I feel with you living in my body. My host. You have changed me. You have created a new mind and body, without asking me if I desired it. Your like a tale out of a horror story, a vampire, a viral pathogen or zombie who sucks my old life out of me, creating something unwanted. The difference between you and these tales of unrequested body snatching, is their always some cure or perhaps a perverse joy the person invaded feels. Quite often the changed person eventually figures out what they have become, and, often someone who loves them finds a cure; allowing them a way out of their new host virus.

In my reality based, nonfiction world life, no one has a way out. No one has a cure. We are left with putting bandages on unseen wounds. Bandages that fall away as we continue to morph through different stages of your invasion each day. I already stated that I never agreed to allow you inside, but as you have entered me, consider leaving a trail of breadcrumbs that will help me to find the path back to my old world.

Please Fibromyalgia, can you leave these clues soon. I just can not always seem to find my own way anymore. Words escape me at the wrong times; doctors visits are too often one of these times. Words fail for my family, my friends, and the people staring at me as I lumber through my day shielding my eyes from the glare of stares. Stares of strangers who ponder if I am an abnormal creature or a creative liar. I desire to share with them that I live with my host, Fibromyalgia, but have learned that it is a waste of time. All because you remain hidden from their eyes while winding through my insides.

This exhaustion has become frustration. You make me sad. You make me hurt. I don’t sleep well and then I have to keep carrying you around while exhausted. Your weight is heavy. I did not choose you, but I will learn have to learn how to best continue carrying you. You can be very sure that I will search for the magic spell to compel you to show me my breadcrumbs.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

Thiamine and Thyroid Fatigue Reblogged from a Peer. UPDATED

Well, an update, again from FB and the same friend;

This is a fascinating look at what I believe may hold many clues for medical research. It just ties all the spectrum of similar illnesses and syndromes together in a manner I have never thought about. As you look the site over, ask yourself this question, “do I have Hashimotos?” .  I found out two weeks ago that I do! Why? Only because prior to my surgical procedure the assistant asked me if I still had it. I was insistent that my chart was wrong because I was never told that. Well, the answer is within this page on FB; most of us are not told, therefor we can do nothing to change it.

Thyroid Pharmacist, Dr. Izabella Wentz on Facebook.

Thiamine and Thyroid Fatigue Common in Fibromyalgia

I am in a rush today but a Peer posted this on FB yesterday. I found it to be very informative and potentially useful for Fibromyalgia and Chronic Fatigue. I don’t have time to do further research on the role of thiamine and the three dysfunctions that have been found to correlate to our condition; the HPA, central nervous system and muscle function (and, rarely stomach muscle paresis). I encourage all of you to look into this area further, google thiamine and the specific actions that happen, like substance P, ect.

Too many doctors, bank, pharmacy, and more appointments today to give you all more assistance. I hope my toolkit of remaining Well is with me today, and, with all of you 🙂

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Barometric Pressure; Rain has Arrived and I am Preparing for a Huge Life Change This Winter

el Nino 2015

The fall rain has arrived, yeah. Last night’s rain contributed to my overuse of my body and mind for the two Halloween events I attended Saturday. The events were short and simple; taking my dog to a parade in a pumpkin cover-up costume and several hours later an hour and a half visit to a haunting event. I only go out on this eve every decade, so I took the day to enjoy all the positive fun I had outside of my four walls. You all know what’s coming next, my brain began to become overwhelmed a half hour into the second event. Full flare by the middle of Saturday night. I was just coming out of the flare in the middle of Sunday night and here comes the rain.

I live in California and a “Godzilla El Nino” is forecast for this Fall and Winter, yeah. Thunderstorm clouds are still outside my window and my brain is moving a bit slow. This combined with my PCS and being overwhelmed at the”haunting event” is adding to my inability to find words to post for my Peers today. Oh, and did I mention that I am still in a medium flare this afternoon? Ok. I want to discuss how and if I can prepare in any way for this Godzilla of rain.

I don’t think so. In all the areas of my life that I can at least try to create Well health, controlling nature is not one I have figured out. I do know that if I pay attention to the daily forecast, I can have advance warning of whether there is a good chance that I will flare in increased pain the next day or later in the week. But, not always. Take today. When I got up it was sunny and it appeared that the rain was over. Now that afternoon has arrived, the thunder bumpers are beginning to increase my pain flare, again. So, what, if anything can be done about this weather; put simply, knowing and planning ahead.

This drastic change in my normal winter weather is a heads up to create a page in my daily reminder book to always stock up on those foods easily consumed in bed. Gather up my favorite books and DVD’s. Fluff the warm comforters and medium firm pillows. Buy a few extra ice packs for my neck pain. Remember to get up and walk my dog early in the day, because my pain will grow as the pressure drops. Do as much work on my small chores and projects on days when the sun is out. Lastly, buy myself two new comfy pajama outfits for the winter months.

As always, keep a positive attitude and remind my clients that weather effects my health so  expect me to cancel or move appointments. Anyone who knows how to help the effects of barometric pressure drop, leave me a comment. Sometimes I think of crazy things like covering my house in tinfoil 🙂

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach