Fibromyalgia: One of the Most Misunderstood Illnesses

Fibromyalgia: One of the Most Misunderstood Illnesses


A girlfriend of mine said she overheard a couple of her coworkers comment about another who had fainted from side effects from a new medication to treat her fibromyalgia (most likely post-orthostatic hypotension or light-headedness upon standing too quickly, sometimes caused by certain antidepressants such as Cymbalta). As she was being led out on a stretcher their response was, “Nobody could be that sick.”

In what seemed like validation for my plight, a supervisor began his comments by informing me he “knew a lot about my illness, for he and his wife had a close friend with it.” The remaining comments became a kick in the stomach when he continued, “so you can go ahead and quit. I have found two students to take your place for the summer.”

Recently, we had our patio resurfaced. The contractor mentioned to my husband that his wife was on disability. When my husband responded that he understood because I was too, the contractor was quick to say, “Yeah, but your wife looks in much better shape than mine.” My husband eloquently replied, “Looks can be deceiving.”

When I was frustrated and disappointed by the prospect of potential rain at the (now postponed) baseball game a couple of weeks ago, I vented on Facebook only to have a relative, who also has a chronic illness, reply, “Don’t let your illness rule your life.” Not only was I stunned, but I also had expected this relative, of all people, to understand. Sadly, I was mistaken.

I know that those without certain chronic and debilitating illnesses cannot fully grasp what it entails, but I still am amazed at the level of difficulty people have in understanding. Granted, we also have difficulty grasping the culmination of symptoms and how our level of functioning can vary day-to-day (even hour-by-hour), but it still can be emotionally upsetting to encounter those who seem unwilling to listen and learn. No, I cannot fully grasp some of the daily trials and tribulations that, for example, a cancer survivor encounters, but I am not going to downplay or ridicule another.

As a child, I recall visiting elderly relatives in nursing homes and hospitals. Nursing was the second most prominent profession among many of my mother’s relatives; I even recall as a young teen sitting in our hallway reading (with much enthusiasm) our medical encyclopedias.

Most important to me was that my mother and grandmother explained the impact the illness had on the person, focusing on the person first and foremost. To encounter those who are emotionless to others makes me dumbfounded. Yes, I suppose I am quick to judge them, as they judge others. I realize not everyone reacts the same way to illnesses; some may even respond out of fear and naïveté.

Probably the hardest factor for many of us is when we find those closest to us making curt or thoughtless remarks. Suddenly we have to defend ourselves. This is hard to contend with, especially if we are still struggling with inner conflicts over our health situation. Why is it that many believe that self-control or a hardened will can miraculously cure us? Why is this particular illness viewed by some as self-determined?

When a person lacks empathy and makes insensitive remarks, it make me wish they could live my life for just one day. They would kiss the ground and be thankful to return to their own body afterward. I have no choice.

***

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

45 comments

  1. Em says:

    Does anyone with a chronic illness/pain truly believe that if another were to experience what some do on a temporary basis that the person would have have more empathy and understanding? If someone stubs their toe it hurts, even though, the person knows the pain will subside at the time only that individual knows how much it hurts.

    I have been reading a lot about how no one understands and it comes across to this reader in a negative way.

    It is like saying a man does not know what it feels like to give birth to a baby…

    Not being critical as I read this a lot…no one understands. From one w/ fibro and other chronic pain to ask this of others seems unrealistic…my thought.

    Why there are online support groups so some of us w/ similar illnesses can exchange ideas and vent.

    Thanks for sharing your thoughts.

    • Lori Galpeer says:

      Maybe I am being naive, but yes, I do think that some would truly be empathetic to understanding our illness if they experienced it firsthand. There are some, like politicians, who take on a cause when someone they love is enduring a chronic illness. You make a good point in the example that even though some have felt the pain of stubbing their toe, each person’s experience differs that is part of the issue in that when someone hears the word ‘pain’ they make the connection of what they themselves have experienced in their lives – so if for example someone has never had a migraine, they can’t fully grasp all that this form of pain (and related symptoms) entail. The issue I have is that even so, every one has had some type of pain yet why is it so hard to try and listen instead of dismiss in one way or another. No, I can not know all the types of pain, such as due to cancer, but at the same time I am not going to be curt or unkind when someone tells me they have this condition. When someone you care about has shared an experience that you can not relate to, do you respond by saying ‘it’s all in (your) head’; ‘wouldn’t bother me they it does you’; ‘what’s the big deal’? I would think you would provide a listening ear or some form of concern/solace/support just simply because you love the person. Yes there are support groups out there – it is not just for sharing and ways of coping among others with the same condition, but because there are so few in our society that want to provide unconditional support.

  2. Ann Flynn says:

    Dear Lori As a Fibromyalgia sufferer myself I can totally relate to almost everything you have said… and I actually feel guilty now when on occasions I feel well enough to attend family functions.. I think you have summed it all up in your last paragraph that at times you wish the people who judge us could live our lives just for one day and I 100% agree they would kiss the ground and be thankful to return to their own bodies afterwards.. However we have no choice!

    • Lori Galpeer says:

      It is interesting that you mentioned feeling guilty on good days; I feel the same way sometimes!! I know of others with FMS and/or other conditions and know that I am fortunate to have good days sometimes. On those days, relish in the time and enjoy it to the fullest. 🙂 It is hard when others have harsh, insensitive commentary on our illness. Like you said, they can walk away . .we have don’t have that ability.

  3. Denise Bault says:

    GREAT article! Thank you so much for expressing what I deal with on a daily basis. Those that don’t have it would ball themselves up in a corner and cry like a little baby if they had to endure one tenth of what we go through on a daily basis. Physically, mentally and emotionally! It’s like our “outsides” look great, but our “insides” are all haywire!
    I’m already tired enough. Now I’m also sick and tired of the ignorant comments.

    • Lori Galpeer says:

      It can definitely be exhausting trying to function as best we can with all that is going on inside our bodies, having to deal with others’ comments and being put on the defensive to explain ourselves is draining and frustrating. I am glad that I was able to put into words what we have to endure on a regular basis. Take care!

  4. Kitty Gibbs says:

    WOW! Well said, Lori. Great article! I’m sure all of us feel the same way. I know I do, as did my mother and her mother before me who both had it. Whenever I get comments like this I try to use the opportunity to gently educate people about the illness and the latest research about fibromyalgia being a condition of the brain and central nervous system. That our brains look different on a PET scan from normal brains.That our bodies process pain signals differently and cause the relentless pain and fatigue. That we’re in a constant state of hypervigilence like a soldier in battle with PTSD. And that we’re hypersensitive to noise, light and temperature. I find the facts shut down the ignorance and make people reconsider their understanding of what it’s like to live with chronic illness.

    • Lori Galpeer says:

      It is a shame that we have to ‘back up’our explanations for our illness with latest research to be taken seriously. I am glad that some are willing to listen (or at least suppress their negative commentary) when you present this information. I hope that you have many supporters too! I am sorry that your mom and grandmother have (had) to endure this illness too; as my husband’s aunt (who was diagnosed back in late 70s/early 80s when it was still considered a psychiatric condition – more a byproduct of symptoms due to depression), I am sure the explanations went on deaf ears or was even harder to get others to understand.

  5. Julie says:

    “Do not criticize another man or woman unless you have walked a mile in their shoes” is a powerful quote. As a Christian (I am one) I am to care about others and to show compassion. Frankly, some days and depending on the situation, it’s tough in my humanness. I desire for others to return the same courtesy of listening and caring. But it is so true that only those who are willing to walk side by side with you living in the ‘as if’ does it work. It is also true that only others who truly ‘live it’ will get it. Knowing that most likely you won’t die from these chronic illnesses does not diminish the severity in our minds. However, in some circles and in some people’s minds it does. Chronic is extremely difficult. But our society doesn’t like difficult or long term anything. So it is up to us to educate those who are interested and to dust our feet off in front of others who do not care to understand our story. It’s taken me 20 years to even get my own family to understand. So no wonder the general public and even some medical people are skeptical or dismiss. It’s painful and wrong. However, again, we live in a very fallen world. I appreciated your article and it was well-written.

    • Lori Galpeer says:

      Thank you for kind comments and support. Without getting on my soapbox, I agree wholeheartedly that our society does not know how to deal with persons who have chronic illness that impairs our functioning to the point we are unable to ‘do’; it is always ‘what have you done for me lately’ ‘actions speak louder than words (or sentiments). We can not do and be as we once were and yet our plan existance in the world is simply not enough for many.

      • Julie Shenk says:

        It does take a new mindset for ourselves and for others. Maybe some day. Thankfully, I am a God pleaser now instead of a people pleaser. Oh, what a relief it is. I know He understands me and knows my heart. You are welcome!

  6. Janet strahan says:

    I am impressed by your husband. He sounds like a wonderful man.
    Yes, I have also experienced unkind words from friends. thats why having some one who supports and understands you is so important.
    (Like your husband)

    • Julie says:

      Janet, I believe husbands who do so will receive a big crown in glory. It’s not easy and I believe can only be done consistently with the Lord’s help.

      • Lori Galpeer says:

        He certainly has earned some medal of honor for unconditional love and acceptance. Like I replied to Janet’s comments, it has not been easy for him (us as a couple) but fortunately he has gone through the ‘grieving’ process and doesn’t blame me or wish to share his life with another. Because of this illness, I have been able to see how fortunate I am to have the loved ones’ support in my life and try not to take it for granted.

        • Julie Shenk says:

          Lori, I, too, say ‘thank you’ a whole lot more. I believe men desire to fix things and control things. However, this elephant in our lives cannot be handled with that attitude. It takes great compassion and understanding plus alleviating stress not adding on more. My husband enjoys being an emotional supporter now. I believe his major bout with cancer opened his eyes and changed him in perfect timing to salvage our marriage.

          • Lori Galpeer says:

            I am glad that your husband is very supportive! I am sorry that it required having to endure cancer, which btw I am assuming he is in remission now! Best to you both!!!

    • Lori Galpeer says:

      Thank you – I am impressed by him too! It took many, many years of talking and providing research articles to him (that he was willing to read) until he fully understood as best as one without the illness can. He is a treasure and I know that I am very very fortunate to have him. When I was initially diagnosed he had some concerns for he already had an aunt who had suffered from it (mainly lot of mistreatment from family considering her more of a psychiatric case than someone truly enduring all the physical symptoms) as well as a friend – he saw the personality transformations and was bit scared by it. I gave him the option to walk away from our relationship but he chose to stay! It has not been easy but we work hard at it.

  7. Heather says:

    Em,
    We value support that we can get from those who are important to us. When that support is absent, it’s hard to feel as valued. Our own illness is punishing enough!
    I see it as a matter of damaged trust. We trust that the people we love will try not to harm us. When hurtful comments are made (even unintentionally), it’s like having it amplified and on replay. There’s the “did they really say that?” then “Why would they say that?” and then the intense feeling that you’re alone.
    We are social animals. Social pain and physical pain are inter-related in the brain: https://www.psychologytoday.com/blog/neuroscience-in-everyday-life/201704/is-social-pain-real-pain
    Rejection (negative judgement) hurts… in a similar sense as physical pain hurts.
    Have you ever felt alone in a room of people? What if those people were your family members and friends? For me, there are things I cannot talk about with people I care for very much – sharing is a way that we connect with other people, and is mutually reassuring that a social bond is intact. In a way, I feel like I’m not being authentic — as if I’m sort of “deceptive” if I deflect topics. I can have lots of shallow relationships, but how rewarding are they? There’s a real, innate fear that if something happened to us, that we wouldn’t have that social safety net of having people who care to help us through. We’re deeply vulnerable in that sense! And… our pain reminds us that things CAN happen.
    While some folks may take for granted that their family loves them, their friends care about them… When chronic pain enters the picture and it becomes harder to relate to our loved ones, then our connection — our bond — is shaken. If nothing else, we need reassurance that even if someone doesn’t understand what we’re going through, that they at least CARE.
    People who have chronic pain have often faced limitations that have led them to give up activities and plans that are meaningful to us — things that not only used to bring us joy, but also are integrated into our identity/self-image. In that sense, when we feel like we “lose a piece of ourselves,” it can cause us to grieve very deeply. Sometimes when things change suddenly or dramatically, it can make us question what else we’ll lose because of the illness. Our sense of self-worth can take a hit. We can worry about becoming a burden on other people because we have to ask for help more. We may have difficulty asking, or may not have been good communicators to begin with (plus add brain-fog and fatigue that are common among many illnesses). It adds further strain to relationships.
    It’s not unfounded to have fears, either. I’ll share an article that says (quote): “Some numbers show that 75% of couples dealing with chronic disease end in divorce.” http://time.com/83486/divorce-is-more-likely-if-the-wife-not-the-husband-gets-sick/
    Social connections reinforce our own self-worth and they give us joy, they re-affirm us and make us feel secure. The connections that we make online (which is where many of us find support) don’t offer the same benefits as relationships with people we see face-to-face. While you can feel warmly toward someone online, it’s often more a sense of gratitude and mutual understanding. It’s not love. Being hurt by someone you love or feeling isolated from someone you love can negate the effects of sitting at the computer and typing at people.
    I hope this helps you understand. I can tell you that one of the best feelings ever is to be validated and to be cared about. “I don’t understand, but I care.” “I’m sorry you’re hurting, I wish I could help but I don’t know how” MAY be a conversation starter if you’re in a position where you truly can help and are truly willing. People can be a husband, or a wife, without ever truly being a PARTNER. Relationships and communication matter. Words matter. Let other people you care about know that THEY matter to you.

    Heather

    • Lori Galpeer says:

      Well said!!! I could not have composed a response as well written and thorough – thank you! I think we are all affected by others regardless of the degree of self-esteem. We are social creatures; social studies have shown the negative impact when completely isolated from others. I can’t imagine a person being without at least one important person in ther life that they rely on for suport and care; that if he/she were ‘rejected’ in some manner by that person would be greatly impacted by that loss. Just by saying that he/she relies on no one tells me that there is much pain in their past (that lead to having to be fully independent and without any emotional support system).

  8. Mandy says:

    I’ve had the idea myself where I wish someone could switch bodies with me for a day to feel what I do, but then I realize that the only people who matter in my life already understand and love me unconditionally. I know there are a few people out there who are judgemental or completely clueless, but they aren’t worth stressing about!

    • Lori Galpeer says:

      Well said, Mandy! Those who truly care will provide the support and unconditional love we need; they are the people we should have solely in our lives. Sadly one finds out who can, and want to, be in your life when something like a chronic illness occurs.

  9. Kaz says:

    Hi All
    Iam a newly diagnosed Fibromyalgia sufferer & also M.E.
    Thank You for your all your info & comments it’s really helpful & interesting. I’ve colleagues ‘Nurses’ who make comments to me
    It’s all in my head!& the Menopause!!!! Oh we all get tired!!
    I wish they could have a day in my life to know how real Fibro is!
    Kaz

    • Lori Galpeer says:

      Thanks for your comments. I am glad that our newsletter articles are providing you much needed support. Being newly diagnosed, I know you must have a lot of mixed emotions as well as just wanting to hear from others as to their experiences and how the illness impacts them. For me, I remember being dumb-struck at times by the lack of empathy or understanding from others that you confide to as close friend, loved one only to get curt, ‘quick-answers’ that may be well meaning but miss the point altogether. I have heard some of them too such as: ‘you just need to take a vitamin or added supplement’; ‘I knew someone had that but did (this/that)are is now gone’ ‘I get tired too, I just grin and bear it’, “I get headaches/pains too but I keep on going’ . . it is a shame that many seem so clueless as if no one in the world has ever had certain types of chronic pain or an illness/situation that produced sheer exhaustion . . anything to at least relate in some manner. Take care and pls feel free to contact me and other colunists with questions and comments!

  10. Helena O Kekai says:

    I’ve had both fibro and treatment resistant Major Depressive Disorder (MDD) since I was 19 years old. (Treatment resistant means no anti-depressives, no anti-seizure meds, no anti-psychotics help.) Well I’ve had the MDD since I was a child.

    Now I usually don’t leave comments but I feel this is a safe place. I was MUCH better after leaving social media behind! Facebook can be really horrific. Now I seek out the 3 GOOD friends I have that understand these awful disabling illnesses. And as two good doctors told me–“Helen, just move on! Just get on with your life.”

    So now I spend my energy like gold. I actually use an egg timer, set it for 15 minutes, then STOP. Mowing the lawn or clearing brush or driving to my doctor at an appointment. Then I go into an air conditioned room, lay down ice bags on an easy chair or bed propped up by pillows and read or nap. The ice REALLY helps my everywhere pain.

    I’m 69 years old. I do know what living with chronic illness is like. Fighting off trolls on social media is exhausting. My advice is stick to forums such as this. There is a lot of good advice here. You are among people who TRULY understand what that means.
    When I had breast cancer I was actually relieved. You can discuss OPENLY your surgery, radiation, and chemo because our unenlightened colleagues and friends understand cancer. “You’re ‘fighting’ cancer! What a great person you are!” But if it’s a “hidden” illness such as fibro or depression, people don’t have a clue. (BTW if you get breast cancer find a nice surgeon who understands BCS-Breast Conserving Surgery. The surgeon removes only a small amount rather than lopping off the whole breast. My fibro flared horribly with surgery, but the anesthesiologist talked with my pain doctor and they changed the meds and anesthesia they used. I still was awfully ill…but I had a surgeon who understood.
    I’m a Master’s Degree Nurse Practitioner so I understand that finding a compassionate surgeon can be hard–I worked in ICU for ten years in the 1970s…most surgeons have no bedside manner. But there are some.
    Stay off social media. Don’t use your energy responding to trolls! If you need to “talk” use a phone, write a REAL letter, or email. After 50 years of this disease I’ve learned that many Americans aren’t very educated!
    “You have depression! Well exercise! Get out of bed! Volunteer!” Sure as I descend into a black hole, but know that I will cycle and be OK again!

    • Lori Galpeer says:

      WOW! I am awe struck at what you have endured! First of all, I am glad that you are in remission as well as finding a surgeon who does BCS. I wish you did not have to work hard at keeping depression at bay. I have had depression since the age of 12. Given that I was not able to truly know how to explain the accompnaying anxiety, and the occasional mood states were viewed as normal in a family with depression on both sides, it was never addressed. At the same time it was before SSRIs and I doubt the side effects from a tricyclic antidepressant would have been very uncomfortable for a child to experience. I was on Paxil for over 15 years before it was ineffective. After having a very long FMS flair (10 months!), a few years back, my rheumatologist bought up the possibility my 3 meds for FMS, which included my SSNE, Cymbalta, may no longer be working . . that was a frightful moment, one that I keep in the back of my mind. I can not imagine the emotional strength and varied emotions you must carry having to deal with depression head-on. It must be draining at times! btw, congrats on your career accomplishments! My grandmother and many relatives on her side of the family became nurses. I enjoyed hearing about various cases she shared (this being many years after she retired). I am very happy to know that you felt comfortable enough to share your experiences! It is meant to be an environment free of judgment, supportive of viewponts and differences in opinions (i.e. agree to disagree), and most of all support when one shares personal information! Social media helped me immensely to re-connect with h.s. friends and I am fortunate that many are very supportive; I can also see how the opposite can happen. After all the same type of people who are critical, lack empathy, negative or choose to play devil’s advocate take to social media too. I am sorry you had such a bad experience; I am glad that you realized it was pulling you down/creating more stress and removed yourself from it. I hope this encouraged you to share again in the future! Best to you! 🙂

  11. Karrin says:

    I found this article self serving. I too have fibromyalgia and have had difficult days/year. But to think that everyone should cater to me because of my struggles seems very self centred. Everyone has challenges in life (we are not special). We should not expect everyone we meet to know about Fibro and understand how it affects us – or feel sorry for us for that matter. Too many people with Fibro just focus on their own difficulties. We need to get on with our lives the best we can, and stop feeling so sorry for ourselves. It only drags us down, as well as the people around us.

    • Em says:

      Hello Karrin, I have been saying the same thing at times and here is one fibro female (I don’t want others knowing) that agrees w/ you…Why, I suppose, there are forums. I avoid negativity as much as I can and when I read this article I did respond and there are times another may want validation so much the point of a comment may be misconstrued.

      I do not see any kind of illness or disability as a kind of punishment as this implies we have done something to deserve thus…it takes courage and drive to keep trying.

      So much of what I have read comes across as people with fibro have some corner on suffering that others do not understand.

      I am not one needing social connections to reinforce my own self worth or give me joy. As I have stated many times, we are not all the same and we do not all need the same things. Many have been hurt due to misunderstandings of many things.

      The focus of this forum is fibromyalgia even though many have other illnesses come here. I think it is healthy to believe in yourself. I know if I were counting on others to believe in me and will crumble if they do not I would have succumbed to despair. I also think it is healthy to challenge our own way of thinking.

      I have feelings like everyone and have learned a smile and a pleasant word will get me much farther.

      So all of you fibro folks keep trying and when you no longer feel you want to try find a place where others “do” understand some of what you live with in your life.

      • Lori Galpeer says:

        Again, as mentioned to another in this forum, the intention of this article was not to say ‘woe is me’ but rather address the fact that from my own experience and that of over a hundred I have read in different arenas, there
        is a tendency to be hypercritical. In some ways this is no different than other ‘invisible’ illnesses but since the origin is unknown and the main symptoms acknowledged are subjective, the tendency from many is to respond in a negative fashion. Yes, it is important to believe in yourself and not rely on the attitude of others to make you feel better; however, even those with the strongest self esteeem are bound to feel the need for compassion from someone close. We are social creatures afer all.

    • Lori Galpeer says:

      I am sorry that you interpreted this article to be that way. My intentions were to express some factual experiences and perceptions in conjunction with this illness. I know that many with chronic illnesses encounter similar lack of support and understanding from those who expect will provide comfort and allow us to confide our experiences to. I am not advocating forgetting others or stay solely engulfed in our own health, but we have to take care of ourselves first before we can be strong and capble of helping others. I do not carry a woe is me or weepy exterior to others but if I did, does that mean I am undeserving of at least one persons’ compassion? My husband’s aunt unfortunately was diaagnosed with this illness back in the 70s when the medical community classified this as a psychiatric illness based on depression with no actual physiological basis. Unfortunately, the family has forever labeled her as a psychiatric case; nothing that she says, including comments outside of her illness are looked on deaf ears. This is an example of how others who are considered to be unconditionally loving suddenly made her a person not worth including in their lives because of an illness misunderstood and without an origin. Even if you have the strongest sense of self, the impact is bound to create some mixed emotions and make one feel alone in the world. Naturally you have your right to your opinion, I just wanted to convey my impressions without sounding woeful.

      • Heather says:

        I wish folks valued your input and your experience and realized that while it may not be something that they personally relate to, that others will be thankful for having read it.

        Personally, I think social isolation is a very important topic and can have devastating consequences not only for our sense of self-worth but possibly as what turns us toward thoughts of suicide in our deepest, darkest moments of despair.

        I’m glad for this article. I’ve been having a rough time of it lately. I’m actually going to see a therapist tonight. It’s been very relevant how the reactions of others can weigh us down as we’re trying to stay afloat with the already difficult burden of chronic illness.

        I hope nobody is discouraged from expressing themselves. The last thing we have sometimes is each other, when we lose sight of our perspective on life. When you’re the person in need, to be shut down is to be shut out. Not everyone has the energy or courage to speak out or stand up for themselves.

        I appreciate vulnerability and self-expression because others have helped me by allowing themselves to be so exposed. I wish you all the best.

        • Lori Galpeer says:

          Thank you . . while I appreciate, and encourage, all points of view, thoe who make comments of a certain nature do make me concerned that others will only internalize any self-doubt and think if a person with FMS feels this way, I should refrain from commenting or worse, feel bad for feeling a certain way. I am glad that my comments have helped you! I am also glad that you realized the issues you were dealing with was affecting you greatly to the point you needed to seek the help from a therapist. You made a very important point of how such rejection from others can make some contemplate hurting themselves. I have had depressions since childhood and while I have fortunately never gotten to the point, there was a very difficult time in life where my career was stifled, I was in a relationship with someone who was unwilling to commit, I was working on a project that required late hours and early starts for extended periods of time, and I had limited social time . . all of this made me feel empty and hopeless. Many years ago, I did seriously consider taking my life but did not follow through on any action, but I can definitely relate to the amount of emotional pain one is feeling (and keeping to one self). Thankfully things are much better today, and I while I feel dominated by my illness (since it controls the degree of functioning I have for the day), I don’t feel helplesss or hopeless = *idea for an article, huh? 🙂 Thank you again for the kind and supportive words!! Such comments make it easier to open up about my experiences with FMS knowing that it can help another relate and feel cared about without any judgements or concerns. You should feel proud of yourself for taking the necessary steps to providing the support/care you deserve. I hope that you begin to notice improvements soon! Also know that you have support from myself, and other columnists as well of course others with FMS. Pls feel free to write me or the FMS newsletter in general in the future should you want to discuss anything!

          • Heather says:

            I sometimes berate myself for being “weak” (in regards to how the comments of others affect me) but I usually realize that I’m not being kind to myself by dwelling on things. I have a tendency to think that maybe they are seeing some inherent personal flaw that I’m not aware of… but more often, when the emotion isn’t as raw, I realize that they have a different perspective. Or maybe they have different expectations of life, of others… I don’t know. They say “To each their own.” I wish I could say that I always come out unscathed and don’t dwell. There are certainly things that have hurt me very deeply, that have reminded me to be much more guarded.

            The therapist I see is a cognitive behavioral therapist, and she was an immense help when I was first diagnosed. I needed an external perspective and validation. Things are snow-balling on me again, and I’m having a tough time digging out on my own. I’ve got pressures from work, a situation in my apartment building that’s impacting everyone and health concerns, among other things. My enjoyment of life is profoundly impacted right now, and I might have to make some hard decisions – particularly about my employment… but with total uncertainty looming (possible relocation, for one thing). I love my job… and I have a hard time knowing when I’ve just… gotta move on. I’ve been here for 12 years. It kind of feels like a divorce for someone who thrives on stability ever since she got sick. Even a shift in my commute (when I wake at 4:30am right NOW) is a concern… In the evenings, I haven’t had enough personal time to unwind and feel like I can process things and relax before it’s time for bed (at 8:30 or 9pm — later when I totally push my luck). I’m trying to learn mindfulness because I’m all too aware right now that my days are a blur, and stress is bubbling up.

            I greatly appreciate the energy and time you’ve put into the column. I just wanted to write back because I wanted to share what my therapist has helped with and it seems some of the things on my plate are a bit similar to what you were coping with.

            I hope I can find time to more actively manage stress. The irony is that I’m tired and feeling rushed & pressured… I’m being ground up by the daily grind lately!

    • Liz Weiss says:

      I totally agree. But if I say that on a chat room I get blasted. I am a fibro sufferer but would never think to burden my friends with a constant report on my condition. Often we hear fibro sufferers complaining they have no friends. Perhaps they need to look inside

  12. Judith Kreuter says:

    Most friends mean well. How long did it take us to understand what we have have? Of course, it’s hard — almost impossible — for them to understand.

    When we feel well, we’re fine. And who can explain why it touches us for a few hours, a few days or a few months. And then it disappears. No wonder they think we’re over-reacting/acting. At times I want to think so too, but then the fibro-body and the fibro-fog take over and it’s all too real.

    For me, it’s the body aches, the fibro-fog and the restless leg syndrome.

    To help my friends understand, I now use a suggestion from this forum that our aching body is like having the flu. And that fibro-fog is like a fuzzy head on cold meds. They seem to get that.

    As for my restless leg syndrome, I dunno. It’s gotten so bad that I barely sleep at night. Luckily, I’m retired so I can sleep away my days.

    And wait until it [hopefully] goes away.

    The strange thing is that I went on my first vacation in years a couple of months ago. During my two weeks in France, I felt a little tired but fine. Where’s the explanation in that?

    Is my cure to continuously sail on the Cote d’Azur? Hmmm….

    • Tim Bossie says:

      If the cure was to continually sail off the coast of France, then I think that would be the best news ever. 🙂

      • Judy Kreuter says:

        I’m already planning my next sailing trip! Croatia here I come!

        And yes, I like the recent comment about stop being the victim. Bad stuff happens to everyone. As a fellow sufferer, I know it’s not easy. However, I feel better trying to keep a positive attitude — friends get tired of hearing complaints.

        If I have to cancel something, I simply say I’m having a bad day. I can’t do it. Period. Not everyone believes me or understands. But I do. And I’m okay with that.

        Of course, being old (70) and retired helps! I recently moved from the city to the country to have a more relaxed life. But still, I never knew pulling weeds could be exhausting. Another one of life’s challenges…

        • Lori Galpeer says:

          Postive attitude is almost mandatory with most chronic illnesses. I realize that a couple of people have looked at this article as my complaining or feeling sorry for myself. This was not the intention at all. It was just stating some facts and experiences. I also realize, and have seen, where people interpret one with FMS as a complainer based solely on that persons’ inquiring to how they are feeling. It is an irony, if someone truly has not interest in hearing about how that person truly feels, then don’t ask. At the same time, I have learned quicly that close relatives use that phrase as a basic conversation starter and the less said about one’s health the beter. Those who understand and care will always do so and will be able to see you as a whole person and not someone with pain and related symptoms. They will also take the time to truly talk to you about anything and not exclude you from regular discussions.

    • Em says:

      Thanks for sharing. Fibro can be like a grab bag. Most of the time it does seem more like a blue elephant.

      And Tim, if sailing off to France is the cure would medical insurance pay for it?? More of my attempts at trying to live in reality. Sure would be boat-loads going.

      Appreciate all of the different views.

    • Lori Galpeer says:

      I’m glad that you had a wonderful vacation and what better way then to feel better, or keep the symptoms at bay so that you can truly enjoy it. I am sure the tranquility helped immensely. Did you have any rebound effect afterward? I too can see how it must seem strange, or as if one is maligning, when you have the energy and capacity to be active one day and then have to be in bed the next. I also try to think of events that others have bound to have experienced as an example to better understand what I endure. Again, it is still very subjective – if you mention the flu or bad cold, one person may recall a bad case whereas another may have only had a mild version and still able to function pretty well. I am sorry that restless legs disrupt your ability to get some rest. Have you mentioned this to your rheumatologist (or physician you see for treatment of fibromyalgia)? I now there is a medication that is suppose to settle the symptoms, or if you are taking it maybe need a higher dose. I do not have this condition so I am not familir with all the treatments/ways to reduce its effects. I am glad that you re able to get rest during the day, but (as an insomniac) know of the desire and importance of trying to establish some type of regular routine. Lack of sleep at night and having to make up for it during the day is a complete disruption. Thanks for mentioning your trip. I live to get the opportunity to visit the beach once a year; the water rejuvenates me. I can only imagine the beauty and rejuvenation experienced of the French coast. Having thi type of therapy as a form of regular, prescribed treatment would be heaven sent to me too!!

  13. Em says:

    When reading comments try to not take what you read personally. We are all so different and react to the words we read in many different ways.

    For this is worth.

    • Lori G says:

      I agree we all different people, the only similarity is that we share the same chronic illness. I take nothing personally, rather appreciate the different opinions. This is meant to share, discuss and if needed agree to disagree on matters, just as long as it is done in a non-judgmental forum. I will say that certain terms used (such as self-serving) can only be meant to be taken but one way. This does not bother me, but do worry that others may refrain from commenting if they so believe that another FMS feels this way. Something to consider before writing (typing) ones’ feelings and emotions on a subject.

  14. Jennie Garland says:

    Yes I hear you! I am very lucky that I have a supportive partner/husband, and everyday this condition, along with my menopause hot flushes and neuropathy burning – (the hot flushes are frustrating enough but then they trigger the neuropathy to start burning….then my muscles ache more….ahh such is life), back to my point – these conditions remind me of the struggle my Mum dealt with everyday from 19 years old with Rheumatoid Arthritis and having a husband (my father) who was NOT supportive in any way – he was a mentally vicious, manipulative man towards Mum & her illness, unfortunately after she was finally divorced at 48 & away from his cruelty for 2 short years – she passed away at 50 years of age from secondary cancer, so I feel both angry & blessed – angry that Mum had NO support from her husband (whom I believe was a direct influence with his behaviour upon Mum acquiring cancer from stomach ulcers caused by worry & stress from him – yes I am not impressed with my father) – and yet blessed that my husband is supportive. I wish Mum was here to hug, yet I feel her my side every day helping me manage these conditions in the face of people not really understanding. And the best way I found so far for others to understand in some way is to say – “you know how when a muscle is tight or sore after straining it through activity? Well that is how my body feels everyday – with bad days really sore all over.” That soon makes them think. Love to all…be kind to yourself and maybe find a creative pursuit to sidetrack the ‘thoughts’ we deal with everyday.

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