Fibromyalgia and Gastroparesis are Related; Why is This not Discussed by Our Doctors

When the Waves get Rough Find the Beauty

2 Page PDF on Connection Between Fibromyalgia and Gastroparesis

Good Afternoon Peers,

I had my endoscope two days ago and the first finding is probable Gastroparesis. My attacks since July have been severe, landing me in the ER 3 times, requiring every test they could do of my abdomen, epigastric cocktails and injections of morphine to calm the pain that screamed through my upper back from my sternum. A pain chart taken during these attacks was a 10+.  I have also had four additional attacks where I managed to stay at home during this time frame. Additionally, I am waiting for results of seven biopsies, thankfully I have learned to take scary medical problems one day at a time. A quote I am reminded of here is, “Suffering is optional”. I am not able to keep up this attitude every day but, I try very hard to do so.

After getting this initial diagnosis, another test will be performed in hospital in a month. Being a self advocate, and advocate for chronic pain/illnesses in general, as soon as I recovered to a state of medium flaring, I began researching about what this new development in my stomach was. As I moved along through the empirical research, I was shocked to discover that it is correlated to Fibromyalgia! This does not mean that if you have one you will have the other, so don’t panic. However, it  raises yet another huge issue in our invisible illness world of medical care.

As there is empirical evidence that the two are related why are our doctors not describing the symptoms to us; isn’t it better to be forewarned in order to be forearmed? I am a Peer who has always advocated for myself with doctors. When I began having the painful symptoms of Fibromyalgia, my self advocating ramped way up. I found every forum, book and Peer I could in order to understand what I was dealing with. I asked my doctors more questions than they liked, without caring if I took five minutes longer than my appointment time. Yet never in the 16 years of living life as fully as I can each day, with health, hope and wellness, has a doctor discussed this relationship of diseases and what potential symptomology I should know. This would then allow me to discuss them at my next appointment.

I am bringing it to your attention. I have no idea that it I had known about this relationship that I could have changed anything, but, then I never knew about Fibromyalgia before my chronic pain began. Knowing there was perhaps more medical relationships involved with my pain should be my right. I am not pleased to share this with you, but firmly believe that the more knowledge we have of our syndromes and dis-ease, the more empowered we are to create a Well lifestyle, filling our toolkit with every item potentially needed; in this case nutritional (I actually have very good nutrition but Gastroparesis requires a different approach than what I though was healthy).  Understanding the nutritional needs might have assisted me earlier on, or perhaps caused a less severe outcome over the years.

Again, please note that this is not a common correlation to chronic pain. The information is being given so you can be informed about the possibility. Please don’t panic and rush into your doctors office; just research and keep the information in your binder in case you develop symptoms.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

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Reblogging a Article from “Pyschology Today” on Dealing with Trauma

resillence

Words to Live By when you Live with Fibromyalgia

I have reblogged Toni Bernard’s posts here, this is a guest post from her. It has wonderful, reassuring words for those of us who are dealing with the feeling of being wounded by living with Fibromyalgia. I am considering purchasing this book! A slight deviation is called for here; I do have PTSD currently, not from chronic pain, but from my rear-end experience that I feel ruined my future plans. This book describes that I may be quite wrong about that. 🙂

Wonderful news.

Today, Reblogging Others Posts and A bit of Research; I have a Surgical Procedure Tomorrow, No Posts Again Until Next Week

Healing Words and Vision

Surgery Reactions in Fibromyalgia Survivors

The above link was created by the doctor whose book was the only one available when I was diagnosed, written by Staryl and Copeland. Copeland later went on to found a wonderful new method of Wellness, WRAP, for persons suffering from life-long mental illnesses. Her program has grown to include persons who have been trained in her method using it for other populations. I use her general advice for my chronic pain and have used it in running groups for persons experiencing mental illness in the past. Her full name is, Mary Ellen Copeland, and all Peers should take a look at her “Red Book” and adapt it to themselves.

Red Book and WRAP

Further Information on WRAP for your Personal Interest

Useful Tips on Items to Discuss Prior to Surgery

This is a great link to print out and keep in your binder or daily reminder book. I have not personally used any of these tips, however, I had arthroscopic surgery on my right knee eight months ago and wish I had. I was in bed for longer than the average person, my knee hurt very intensely (not a normal reaction), and, for a very long time after. In fact, it still is not finished healing, has pain, and has developed further problems. I can not state that all is due to the surgery, but quite a lot of it is. I did discuss pain management prior to the surgery, this helped me quite a bit. Interestingly, I have read that receiving anenestia can temporarily stop the central pain sensitization, and for me, it did stop my overall pain for about two days :).

I will be back next week, “God willing and the crick don’t rise!”

Chronic pain and freedom of art

Another inspiration to do art while you are in pain.

KellyHortonfineart

I live with chronic pain, and have done for many years, Iv been passed from doctor to doctor and being prescribed pain killers for years in hopes I would just “go away”. I never did as I know that living in this amount of pain is not normal. The catalyst for my own diagnosis was when my daughter 11 at the time became very poorly and after a few years of battles and living with my daughter who had changed from an outgoing , active happy child to a tired, depressed child in constant pain. It turned out she has CFS and fibromyalgia. I myself have fibromyalgia. We are so similar in our hobbies, the way we spend our time, and the things we enjoy, she is also a budding artist and is very good.

I feel very strongly that having a passion like painting, drawing helps with not only…

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

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A Link to a Scientific Discussion of how Genes, epigenetics, are at Play in All of Us

This post is inspired by a link shared by a FB friend on my home page today. I studied epigenetics for several years while attending university to obtain my MSW degree. What caught my attention about this article is the relationship epigenetics have to the heated debate among, my Peers with invisible illnesses, about whether long-term stress or genetics are the cause of Fibromyalgia. No matter what forum or blog I log on to, my Peers will likely admit to having lived through medium to intense stress in their lives. Yet, when the topic is introduced that our stress response, or our HPA (hypothamulas pituatrary axis), has burned out it’s ability to stop releasing the HPA stress hormones, leaving our bodies in a state chronic tension, there is a onslaught of denial that stress plays any real role in the syndrome. The forum or blog comments quickly shift to a focus on the cause as unknown, toxins, or perhaps being related to a virus. Today, I want to ponder why we shy away from the concept that stress can cause or play a part in aqcuirring our syndrome.

I am a Peer who freely admits to a lifetime of great stressors. I have always felt that my HPA response got stuck on stress mode by the time I became a young adult. Stress creates shallow breathing, heightened fight or flight, tensing of muscles, inability to rest, and a flooding of hormones and endorphins that ready our body to flee or fight. A working HPA cycle begins to counteract this release within 30 minutes, allowing our bodies to return to a state without heightened stress levels. When you follow this complicated bouncing system,  it appears likely that our bodies are stuck in a heightened stress state, perhaps causing at some of the deficiencies outlined in current research of the chronic pain syndrome,(http://www.hindawi.com/journals/prt/2012/741746/).

This  stuck-on-stress, or over-reactive axis could perhaps be the result of either nature or nuture, combined with genetics or, the underlying epigenetics. Epigenetics are a newer science used in neurobiology research that are able to that track correlations of inherited genetics that allow researchers to track genetic behaviors beyond just our mother or father, all the way back to our grandmothers and grandfathers. In this  particular article the grandmother is discussed. Nature is generally considered by science to be genetics. In this example it may not be that it was only your mother who carried altered stress genes before your conception, but that she inherited them from her mother.  This then creates an ongoing cycle of altered and malfunctioning genes that continue being passed on to their infants.  There is a saving grace in this topic. Many people inherit genes that can cause varying physical or mental health issues, but if their environment is highly nurturing the inherited genes may not manifest.

This makes the environment in which we are raised and, later the social interactions we have as adults, another very important player in the odds game. This is a topic that is taken into account during mental illness, so why not with syndromes like Fibromyalgia? I know young adults whose parents have Fibromyalgia but they are living without it; and living well. I also know firsthand that I have this chronic pain and so does my young adult daughter. If I bring epigenetics into my story, I know my mother experienced a poor and stressful childhood from parents who were emotionally absent, but she does not have chronic pain. My mother inherited a higher stress level that showed for most of her adult life, including during the time I was being raised. I already discussed that I had a high stress life, yet during the time I raised my infant to adulthood I was much calmer, still this idea of epigenetics makes sense to me (I will add here, just to confuse the issue further, that I later began experiencing higher stress loads again and then lower stress).

In discussing the genetic arena, the first place to begin is with neurotransmitters.  We are lacking in normal levels of serotonin, which are responsible for both psychological and physical needs in our body (please see this link in WebMD for more; http://www.webmd.com/depression/features/serotonin). These links that are not functioning correctly, while relating to depression, also overlap with our chronic pain symptoms (see older posts using “Search” for more on this relationship). While there are more areas involved than what follows later, perhaps this has caused the other issues our bodies experience at biological level? Despite this empirical evidence that we may carry these epi’s, Peers are quick to attack the theory that stress caused our Fibromyalgia.

My own thought process about why Peers are quick to refute stress as the reason we develop chronic pain goes back to the old, and still prevalent idea is many doctors belief that we are simply depressed. That “it is all in our heads” because it is invisible. We have fought very hard to become recognized as having a real medical condition. Science has finally done enough research to find the areas in our bodies that aren’t working correctly, including the HPA (see research link at bottom of paragraph discussing this system). So, while we will discuss our stress, we will discuss our triggers that often have to do with stress loads, we do not want to give the scientific community any ammunition to go backwards. I know I don’t want that.

So, how can we talk about inheriting epigenetics or having them activated in adulthood due to experiencing the opposite of nuture without fear? I will leave you with this question as I do not claim to have the answer. We already live with the fear of stigma, misunderstanding and constant pain, making this discussion another topic that is one we would, understandably,  rather leave on alone. But, should we?

Today I Pay for my Joy

Today I am paying for my gifted wrapped day of joy this last Monday. Actually, I have been paying for it for a few days. I wouldn’t take it back for all the pain Fibromyalgia can give me! I knew that the pain would flare up that day, but, that is a part of my life. I accept it. Fighting against it only creates sadness and anger. That creates a cycle of pain and emotions, then emotions and then pain. I rarely allow myself to do this anymore, where is the positive in this cycle? Nowhere.

I treasure my little joys. I look for them. My hope for my Peers is that they can do the same. It is too easy to fall into the trap of that negative loop. Lets make an agreement. Once a week, together, we will post about a day or moment when we had a good time 🙂

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Everyday I Wake up in a Medium Flare of Pain; I get up anyway

2 year old fibro throwing  a tantrum in my body

Good Evening Friends and Peers,

I have had a permanent increase in the amount of pain I experience from my Fibromyalgia. It increased after I was rear-ended two years ago by 40%! I did not recognize that is was my chronic pain, along with a few other new physical pains for quite a while. I simply hurt so much in places that I never hurt before for over a year and my right knee was in such excruciating pain, I had no way to separate the pains. I also have post concussion syndrome now (PCS), which in addition to causing migraine like headaches, light sensitivity and being easily overwhelmed and over-wrought by being out in any situation that involves too much sensory input, causes me to experience cognitive issues in both short and some long-term memory and word usage. Because PCS also causes pain in my head and neck area (overlapping with fibro pain areas), I believed the new pains were generally related to these other issues. My numerous doctors finally helped me to sort out all the different aches and chronic pains. Now that I am capable of sorting pains out, the PCS pain is a different feeling from old friend Fibromyalgia. My doctor who treats my chronic pain, was finally able to determine that my  Fibromyalgia had increased from the whiplash almost 50%.

For many months, after the first year when it was all mixed together, I felt like it was a big flare up of my chronic pain and stayed in bed all day, feeling the burning, aching, nagging pain. My family became concerned about how often I flared and was staying in bed. We talked about it in detail. It was decided that I should try to get up, move slowly and wait to see what happened. This is also similar to what you are told to do with PCS, rest your brain daily as and when needed. I was very reluctant to do this, I just did not see the point in sitting in my armchair, suffering while sitting up instead of taking more medications and sleeping it off. Finally, I tried their plan. The result, everyday I wake up in a medium state of pain from Fibromyalgia (the pain scale is about a 6). I slowly make my tea and put on a simple, but humorous show, sit down and wait. After about two and half hours, the pain usually goes down to a 4.

A 4 on the pain scale of 1-10 is still higher than before the MVA, but I’ll take it. I then begin my process of picking up a few items that were left out last night, pick out a simple outfit and get into a nice warm shower for five minutes to continue to soothe my aches. After that, I  tackle a few chores spread out over the day, plus one “big” chore, like getting a small load of laundry into the washer, adding soap and turning it on. I also walk my dog for about 20 minutes; all I can handle with my knee issues, PCS and the Fibro pain. I also work on this blog.

Working on this blog with both Fibro Fog and the cognitive issues of memory and forgetting words from PCS is very challenging for me. I have decided that despite needing to spellcheck every time I write, reread the post at least three times to correct it, and forgetting words that I want to use in the post, it is helping me to live my life. It is also allowing me to help my Peers and do what I set out to do with my academics, at least partially, by advocating. Short posts can take two hours, longer ones, four hours! It was only three years ago that I could work until late at night on research papers without missing a beat (rarely looking up how to spell a word, or what the word even was). Back then, my chronic pain was around 2-3 when I woke up and by the evening it would increase to around 5. Flares occurred about once a week, more in the winter of course; last winter was brutal but I was still in pain everywhere and did not have a gauge to judge what was what.

Yet, I get up. Every day. There are generally two days every week where getting up doesn’t help much. I wind up back in bed in a flare of 8 or higher. But the point here is I am continuing to try. I understand that I again lost my life plan. I need new tools in Well living kit to remain positive. But, I am not giving up. I am getting up. 🙂

I urge you all to do the same!

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Depression and Fibromyalgia; NCIH Research Link to Complimentary Alternative Therapies

Chart of Alternative Therapies and Medicines

http://nationalpainreport.com/marijuana-rated-most-effective-alternative-treatment-for-pain-8824875.html

(I added the image, but it is blurry. If you are interested in exploring this topic further, or being able to view the image without the blur, please visit this site. I am not endorsing it as I have not enough time to explore it thoroughly, still, I believe it discusses most complimentary/alternative therapies fairly well (based on this chart))

Alternative/Complimentary Medicines and Therapy

Good Afternoon Peers,

I am just about to leave and attend a therapy session for my recent depression, not due to Fibromyalgia alone. I have acquired this new syndrome due to a traumatic experience a few years back and need some outside help with it. I wanted to bring up, again, complimentary/alternative therapies for those of us who are experiencing depression. Although, my belief, based on interaction with many, many chronic pain survivors is that depression is generally felt mostly during the beginning phase of acquiring the diagnosis; not for our entire lifetimes.

I subscribe to the link above and found this in my email inbox today. I was actually disturbed by it. While the government agency that is conducts this evidence based research is completely reliable, I do not believe that this article is, at least not entirely. I think that if you read the article, not just the link above with the alternative therapies discussed, you will find a sentence that sums up my reasoning; needs larger and better studies than they currently have compleed.

Depression comes on a sliding scale, from mild to serious. *If yours falls into a moderate to severe category, then I would suggest strongly that you go to your doctor and begin treatment. Even if that treatment is only talk therapy with a qualified professional. There is a movement that has grown in size over the last decade among those who live with all types of mental illness; choosing to live using tools other than western medicines. I agree that this should be a choice.

When you read about this study, remember that many Peers do quite well taking or using these complementary therapies. I will add here that they may be used in addition to western medications, in which case, your doctor should know that as there is evidence based research that some, like St. John’s Wort can cause a serotonin problem in our brain. Considering that we already have problems with this neurotransmitter, we don’t want to have more issues.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

*As always, this information is provided for your consideration and is in no way my recommendation to you as a professional. Please see a professional for any medical condition. This information is only provided for your own personal research purposes.