Fibromyalgia and Chronic Fatigue:Medically Unexplained Symptoms (MUS)

“Open your heart to your suffering”, Toni Bernhard

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There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become  functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.

Reading the comments that are posted in the 99 blogs (this is number 100!) I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be cured of the pain, fatigue, intense itching,  depression, anxiety, nausea, flu-like symptoms and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard :” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.

I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think the thought I am having at that moment then I consciously drop it. I live with the focussed anxiety of having a flare up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and  worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful. I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, like I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment’, or ‘mindfulness meditation’. I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a lifetime that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have now.

There are many of us living with medically unexplained symptoms, such as those with  fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness,  and post traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many  health professionals. As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity- directing the sublime state at yourself” (p.170). This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (p.2 Wherever You Go There You Are). There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to myself and open my damaged heart to my suffering, without reproach or wishing for what cannot be!

On  lighter note:

HAPPY HALLOWEEN! BOO!'08 005

 

 

 

15 Responses to “Fibromyalgia and Chronic Fatigue:Medically Unexplained Symptoms (MUS)”

  1. Kelly says:

    Thanks for the post, from a “newbie”. It has been four years but I was just diagnosed two weeks ago after an (episode) as the Dr. called it, put in bed for a week. It is nice to read a positive post!

  2. Welcome to the site Kelly. It is not surprising that it took four years for your diagnosis. Try not to stay in bed as mild exercise is necessary for those tight muscles. I realize that the pain is difficult to work through but movement is key with fibromyalgia. I hope you find other positive blogs on this website that will encourage you.
    Best wishes,
    Barbara

  3. Valda Garner says:

    Hi Barbara, Great pumpkin! It made me smile . . . thank you. I enjoyed your post and I have never thought about the connection between sensitive people and the hypersensitive central nervous system; it makes perfect sense. Your post is so beneficial and supportive of your readers. Thanks again for making me smile, Valda

  4. My view is that highly sensitive persons are the ones with fibromyalgia due to a lifetime of an overstimulated nervous system. I also write about the tendency of the HSP to over-empathize with others’ real or perceived needs. Have you read the (now) vast amount of literature on highly sensitive persons? Elaine Aron’s work is the best place to start! Thanks for checking in!
    Barbara

  5. Karen says:

    I was diagnosed with Multiple Sclerosis in 1999. Now my current neurologist says I never had MS, I only have fibromyalgia. Doesn’t seem right. Do you see fibromyalgia more in nurses, or people with type A personalities?

  6. Dear Karen: This must be very shocking for you! Oftentimes a diagnosis of MS was given only guardedly for awhile but in your case telling you that you had it 15 years ago so definitely must have been a huge blunder. I don’t know what to say about this of course, since I don’t know the details. Obviously there is a big difference between the two conditions, only one of which is an actual disease.
    It is true that there seems to be an inordinate amount of people who are in the health professions who write to me with fibromyalgia. Again, I point out that fibromyalgia is found in those who are highly sensitive and have a great deal of empathy for others. It would follow therefore that nurses fit that category.
    I am still struck by the misdiagnosis. Was there not a follow-up to the MS diagnosis? The ways in which MS can now be diagnosed is so much more sophisticated than it was 15 years ago so I am dismayed for you that you were living with this misinformation if it was inaccurate.
    Kind regards,
    Barbara

  7. Karen says:

    Thank you, Barbara. In 1999, on Christmas Eve, my left leg gave out totally. I had been having strange symptoms for quite a while. They originally thought I stroked, but my MRI was fine. I could not walk well for many months, and in April, the neurologist decided to do another MRI which showed multiple lesions and the spinal tap showed an increasin the oligobands. That is why I struggle with a possible dual diagnosis vs a misdiagnosis. In the last few years, the fatigue, brain fog, sleep disruption, and pain made me think that these symptoms were not from MS. Luckily, I have a wonderful sleep specialist MD and neurologist. Don’t know what comes next with the insurance changes. Thanks again for your thoughts.

  8. Ahh! Now I understand! I believe that most people with chronic illnesses also develop fibromyalgia as the nervous system becomes less resilient. This is my educated guess but I don’t have any proof.
    A colleague, neurologist who is an MS expert had a huge poster in his office of fibromyalgia trigger points, one of his patients told me.
    I suspect your own neurologist might confirm that the dual diagnosis is common. Maybe you can get back to me on this point.
    Several MS readers have sent me comments saying they had MS first and eventually fibro developed and it became impossible to know which symptom belonged to which diagnosis. My own sister has both and it has been impossible for her to differentiate.
    Kind regards,
    Barbara

  9. Danielle says:

    Hello!

    I am hoping to get some feedback and/or advice regarding fibromyalgia. On March 16, 2013, I was rushed to the hospital because I thought I was having a heart attack. I weighed 352 pounds and assumed it was my heart. I was falling asleep on the couch and a warm sensation came over my entire body. I felt as though I wet my pants. Then I had warmth in my chest and pain. Since March, I have had every test performed on my heart including a cardiac cathertization and all tests are normal. I have lost over 90 pounds and watch my diet and exercise daily. I have been to the ER over 15 times with these episodes of chest pain and warm feeling and sometimes tingling all over my body. I am not convinced it’s not my heart. Besides these symptoms I have the following symptoms daily: dizzy/lightheaded, headaches, back of neck pain, shoulder pain, arm pain, upper and lower back pain, hip pain, leg and feet and toe pain, numbness in arms, hands, legs, feet and toes amd tingling in these areas too. I have trouble walking and keeping my balance. I have
    bowel accidents often. MS has been ruled out. I am always so tired. I don’t stay asleep at night. I am emotional. I don’t want to be alone. I worry that the doctors have missed something. I have RA, sleep apnea, underactive thyroid, panic, anxiety, GERD, pre-diabetes and PCOS. I am begging for someone to tell me if what I am experiencing is fibromyalgia. I get warm feelings in my chest and pain. Any assistance is greatly appreciated! Thank you.

  10. Danielle says:

    I wanted to add additional items: while I walk I feel like I’m going to lose my balance and fall. My legs get a crawly feeling after walking. I feel like I am getting sick all the time because I have body aches all over. I ahbe pain in my arm pits and breasts. Thank you for takiing the time to read this. I really need help.

  11. Dear Danielle:
    Your two comments are greatly appreciated. I know many of the readers can relate to most of the issues you address.
    The problems are multifaceted. On the one hand it seems to you that there is a heart issue (in my case there is!) and yet it is so indicative of fibromyalgia (in my case it is!) that you tend towards that diagnosis.
    For me with those double challenges are a source of continuous struggles. The fibromyalgia symptoms you describe (if in fact, you do have fibromyalgia)are ones that many of us with fibromyalgia suffer from daily.
    I refer you to http://www.myheartsisters.org for valuable information regarding women and heart disease as it is often not taken as seriously as it needs to be. In your case it seems as though you have been checked out carefully for a heart attack. Do keep following up on it though. Fibromyalgia is a huge issue to be dealing with but not life threatening. Yet, our daily lives are so often plagued with frightening symptoms.
    I hope you are at least trying very hard to keep moving as much as possible in spite of your bad balance and wonder if you can spend a few minutes each day with mindfulness meditation to help with anxiety and depression? Most of us with fibromyalgia suffer from both.
    Very best wishes,
    Barbara

  12. Danielle says:

    Thank you so much for responding! I have myself very upset thinking something is wrong withy heart. I am 32 years old. I push myself each day to exercise despite the pain. Since you have heart problems, based on my previous comments, do you think I have heart problems too? I was told I have no blockages. I have seen four different cardiologists and have been told the same thing ” your heart is fine. Your cathertization was clean.” I don’t understand why I have chest pain if it’s nit ny heart. I have been told it’s my RA and/or fibro. What is your opinion? I’m going to visiyt the heart sisters web site you suggested. Any info or advice is greatly appreciated. Happy holidays.

  13. Dear Danielle: If you have seen 4 cardiologists and they concur it seems likely they are right, but I am not a physician so could never give advice in that regard. Chest pain is very common in fibromyalgia and if you read other comments from many of the 100 blogs on this site you will see how often people complain about that. The problem is that fibro chest pains mimic heart attacks and can be very distressing.
    I hope you can find some ways to relieve your anxiety such as meditation and exercise (in spite of the pain).
    It is wonderful that you lost so much weight. Keep up the good work!
    Regards,
    Barbara

  14. Danielle says:

    Thank you, Barbara. I am so glad I found a place to talk about what I am experiencing with people that can relate. I wish you the best in health and happiness. Thank you for taking the time to read my comments.

  15. Danielle: If it is any consolation I too have most of the symptoms you are experiencing on a daily basis. One trick to help distinguish between heart attack chest pain and fibro chest pain is to change positions when the pain occurs. If the pain subsides even for a moment it is likely fibro. Heart pain is usually more insistent and of a different nature. I have had both but I need to remind myself often.
    Secondly, when I am ruminating with a thought such as “pain!”, I do as Toni Bernhard suggests and say out loud: “Drop it”, then I focus on something that attracts one of my senses- it could be anything like a plant, picture, sunset etc. It works well.
    All this takes practice, good luck!
    Barbara

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