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3 Levels of Fibromyalgia Limitations

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I don’t like to discuss my limitations, do you? It feels restrictive and confining to put what I can’t do into words. I’d much rather hop into topics such as options, opportunities, and healing. But understanding our limitations can help to develop a healthy respect for our personal experiences related to our fibromyalgia symptoms.

Here’s an example.

Years ago, a large tree branch fell on my car in a windstorm. The repairs took a couple of weeks and I ended up with a loaner. The rental car was brand spanking new and the agency employee gushed about how lucky I was.

I drove away to run a few errands and noticed the spread of a dull headache within the hour. I attributed it to the super warm day. Later, I felt sort of dizzy, fuzzy, and fatigued. By day’s end, I was nauseous and cranky to boot.

I went to bed early that night feeling somewhat better the next day. I was grateful that the fogginess and “tight” feeling in my head began to lift. Being on a tight writing deadline, I was glad I felt better since I had some major book edits to finish.

A few days later, I drove off to an appointment that was about an hour away. Within just a few minutes, I felt as if I’d been hit by a wrecking ball of dizziness, brain pain, and exhaustion. The “new car smell” was absolutely nauseating. I felt as if my head were stuck inside a dry cleaning bag.

It was the off-gassing of chemicals from the new car.

My appointment was mandatory, so I rolled down all the windows (even on the freeway) and got there feeling frazzled. I arrived with both my hair and stomach in knots. I dreaded the drive home.

Then it dawned on me, even if everyone else thinks a new car is a great thing … it’s not good for ME. I decided to drive straight to the rental agency and demand a different car. And, that’s what I did – except for the straight part.

You see, the fumes even messed with my cognitive abilities. In my meeting, I felt distracted, confused, and had trouble making decisions. Afterward, on my way to the rental agency, I got lost. Massively lost. Even in a completely familiar part of town, I couldn’t get my bearings. I just wanted to get away from the smell. I wanted OUT. Driving in circles, (this was before Google Maps on my cell phone), I finally arrived by default. Then ….

I jumped out of the car and ran as if it were on fire.

Everyone there thought I was nuts. Was I really requesting an older car? When I made the switch, I did a sniff test to make sure my replacement car wasn’t new, hadn’t been used by a smoker, and didn’t have any offensive and stinky air fresheners. It took several days afterward to detox and recover. The headache lingered for nearly a week. On the upside, this time of forced rest provided me with ample opportunity to assess the situation.

You see, I knew that some smells bothered me more than others. I’m super-sensitive to chemicals in scented candles, room fresheners, detergents, perfumes, smoke, pesticides, herbicides, paints, lacquers, solvents, and more. But I didn’t respect my own boundaries. I thought, “I can tough it out for a few days.”

Have you ever felt that way?

We fibrofolk are sensitive souls. We’re sensitive to many things including lights, smells, touch, foods, sounds, and more. Learning this helps us to develop awareness and respect for our own space and circumstances. When we define an offending smell, environment, or experience, we can begin to protect ourselves from it.

An offensive smell is one thing, but have you ever noticed an increase in symptoms from specific activities or even from specific people? I’m often told by clients that certain work situations send their fight or flight responses into overdrive. The same is true for certain colleagues, neighbors, family members, or friends.

We can’t always choose who we spend time with, but we can choose how we let them affect us. It takes a bit of awareness and pre-planning. Planning ahead gives us a sense of empowerment. If we know that someone is likely to get on our last nerve, we can minimize exposure to the person, invite others to join in (creating a buffer), or avoid the activity all together. If it can’t be avoided, then we do our best.

Just as Spiderman develops his Spidey sense, those of us with fibromyalgia develop our Fibro Sense (well, maybe not “just as”). By increasing our awareness, we begin to see how we’re bothered by differing things. That hyper-awareness can be self-preservation in action.

How Desire Plays a Role in What We Choose to Do

Years ago, I was approached by a man who sold carpet to a company that I worked for. He said that he felt his wife was “faking it” when it came to her fibromyalgia symptoms. Of course, I bristled at his assessment, but it definitely got my attention. He went on to explain that she had a hard time getting out of bed in the morning, and that she needed help from family and friends to care for their young children. He understood that, but then explained that her all-time favorite activity (before fibro) was dirt bike riding. It required a lot of stamina and focus to ride over bumpy and dusty terrain.

After her diagnosis, she didn’t participate in this activity often, but sometimes, she’d go out with friends and spend a weekend riding “desert toys” and having a blast. He was always irritated to hear that she was the first one up in the morning, geared up and ready to go.

I guess he had a point.

It could appear that her weekday
fibromyalgia symptoms were a charade.

But, it’s not that simple, is it?

I asked him how she felt when she came back. Upon reflection, he said that she was a complete chatterbox when we first got home, but then was wiped out for about a week afterward.

I told him what I often say about my personal fibromyalgia limitations: I can do whatever I want to do. I just have to decide if paying for it afterward is worth it.

And, for his wife, the tradeoff was worth it.

For me, a day at Disneyland with my kids and grandkids is worth it. A shopping day at a large mall for high school dance dress with my granddaughter is worth it. For you, the circumstances may be different, but the point is the same. Desire goes a long way toward mitigating our symptom payback. I don’t like to set myself up by assuming that my symptoms will increase afterward (sometimes they do and sometimes they don’t), but I do plan in advance. I choose whether or not to participate based on my self-awareness and desire to participate.

Now that you have a better idea of how awareness – in advance – can help you to define your personalized limitations, here are the Three Levels of Fibromyalgia Limitations, as I see them. Your specifics may differ, but the categories are likely similar.

Limitation Level #1 – Not for Me

This is the level where you’ve learned (usually the hard way) that some activity, event, or possibly an ingredient is simply not healthy for you. You’ve tried to mitigate or compromise with this offensive element, but find that it’s simply best to avoid it or stay away all together. This often relates to toxic things such as foods, chemicals, and even toxic relationships.

There are not usually exceptions to this level of limitation.

Limitation Level #2 – Not Typically

This level applies to activities or events that usually bother you enough that you decide to “just say no.” For me, an example of this is evening meetings. I find that they typically take more from me than they give. I feel quite drained the next day, and it’s just not worth it, unless there is a great need for me to attend.

There are seldom – but sometimes – exceptions to this level of limitation.

Limitation Level #3 – Not Today

This level applies to activities, events, or relationships that you find are tolerable when you’re feeling well, but they try your patience (or energy reserves) at other times. You get to choose when to apply your Level 3 Limitation rule. You get to base your decision on how you feel at the time.

Exceptions to this level of limitation are assessed on a day-to-day basis.

How Would You Rate Your Levels of Limitations?

Now that you’ve been made aware of the connection between awareness, desire, and your personal fibromyalgia limitations, how will you plan your activities in advance? Will you review your options with an eye toward preserving your energy levels and avoiding symptom flares?

Within the confines of your own experience, you get to choose what environment surrounds you.

By assessing your personal fibromyalgia limitations, you become better-equipped to protect your own boundaries. Apply self-care in liberal doses to your daily activities to ensure a smooth path toward your health goals!

_______________
 

Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia editor for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue's free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

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10 thoughts on “3 Levels of Fibromyalgia Limitations”

  1. Tamerha says:

    Very good article. I thought I was the only one that went through all of the things mentioned in this article. I even take it a step further, it’s usually not the same things that affect me and most of the time the consequences come on suddenly and without warning. My husband is very understanding about it all and helps me a lot, but most of the rest of my family and friends just don’t understand, and I gave up trying to get them too. It’s easier just to let it go.

  2. jennscott85 says:

    Thanks for sharing. The article was very informative of our struggles.

  3. renoredhead says:

    I never even realized I was doing this type of categorization. I do know there are certain things I simply cannot do unless the repercussions are seriously worth it. I also decide whether to go shopping or attend a family thing depending on how I feel at the time. The point that certain people stress you to the point of causing flares was a big light bulb moment for me – though one without a solution. My husband is bipolar, and is very difficult to deal with. His moods get worse when I’m in a bad mood, so it’s a self-perpetuating cycle.

    I used to take care of him, cater to his moods, and even supported the family. Then, nearly 3 years ago, I suffered the onset of a major relapse of CFS/FM (I was originally diagnosed more than 20 years ago). Now I simply can’t deal with it. I cannot work as a Paralegal, but work as a writer from home when I can. He doesn’t respect this, and sometimes it’s true that I go for weeks at a time without being able to do even that.

    Any advice? On the relationship issue if nothing else. With my fogged brain, I really haven’t been able to think about it effectively.

    1. ProHealth-Editor says:

      Hi renoredhead,

      I forwarded your question to Sue and here is her reply:

      “I’m so glad that this article has provided some clarity for you! For any type of change to happen, the first step is awareness and it’s often over-looked. We either don’t really want to see things as they are, or we skip over the problems because we just have so many things going on ourselves. But, if we don’t first acknowledge that something (or someone) is affecting our health, we can’t take the next steps to do something about it. When it comes to abrasive or negative relationships, it’s not always simple to just stay away – what if they’re a relative? Keep in mind that their drama is their business. The only thing we can do is to INCREASE our own self-care practices and to try and establish boundaries in how we let others treat us. We may not be able to completely disengage, but we can stop participating in the same conversations that lead to the same results. It’s a skill set that takes time, practice, and patience. The only true control you have over the situation is to be sure that your needs (emotional and physical) are addressed and that you don’t short-change your own health concerns.”

      Karen Lee Richards
      Fibromyalgia Editor

    2. DCook says:

      Unfortunately, this type of categorizing does not always work. Being a mother, a student, an employee, and a wife, I can tell you from experience that sometimes you have absolutely no choice in the matter.
      Sometimes the people around you demand more from you than you feel you can give, so you give them all you have.

      It is unfortunate that FM patients are not treated the same as those with other health issues, but the fact remain that we are not. We seldom get the respect that others do. What makes matters worse, some of us also deal with family members who do not understand (or refuse to) our limitations.

      Any suggestions on how we can get others to understand our limitations?

      1. ProHealth-Editor says:

        Hi DCook,

        I sent your comment and question to Sue. Following is her response to you:

        “I’m sorry you’re feeling depleted from the demands you experience on all sides. Keeping up with family and work obligations is tough enough without trying to do so with a chronic health challenge.

        “I remember trying to explain to my family why I couldn’t do many of the things I’d been able to do in the past. I just didn’t know how to articulate what I was going through and what I really needed. I didn’t feel understood and I felt as if I had no options. I thought my family could see the pain I was in and that they should pitch in and help. It didn’t really work that way. I realized I had to assess my needs and then do what I could to protect my energy resources. It wasn’t an easy shift, but I began to focus on my own health needs and saw the benefit of setting boundaries for my care. As I did this, I found ways to incorporate healthier lifestyle changes so that I could give my body a chance to heal.

        “When it comes to influencing the action of others, we can really only approach it in two ways. First, we do what we can to educate. One simple tool offered here is our “Letter to People Who Ask You About Fibromyalgia.” (http://www.prohealth.com/library/showArticle.cfm?libid=18971) It can help by providing you with a printable guide that you can hand to someone else that details more information about fibromyalgia and our symptoms. It sometimes seems that information bears more weight or has more impact if it comes from an impartial source rather than trying to explain it ourselves. We can seek resource information from organizations such as the National Fibromyalgia and Chronic Pain Association (http://www.fmcpaware.org/). We can also purchase books and materials geared to educate our caregivers and/or encourage them to join support groups that are tailored for their needs.

        “Which brings me to our second point. We educate, encourage, and share our health challenges with others so that they can understand our physical and emotional limitations. Our intent is to help them help us. We do what we can to help them, but we have absolutely no control over what they will choose to do with the information. All we can do is be very clear about what we need, and what we expect from them. They may see our pain and choose to step in, or they may not. Usually, (if they’re not 100% supportive), it’s an arbitrary thing where we may get help on one day but not another. Having a non-existent or unreliable support system is devastating.

        “When our own family members, and those closest to us, choose to add to our burdens rather than lighten them, it can be absolutely emotionally exhausting. In this instance, while there is nothing that can be done to “make” our loved ones understand, we can choose to reach elsewhere for help. It’s important to share emotional burdens with others, so staying connected to neighbors, community groups, churches, and chronic illness support groups is vital. Whether we attend meetings, ask for support information from our doctors, or simply reach out to someone with a phone call, the support we receive is worth the effort. In fact, in some cases, the compassion, support, and empathy we receive from outside help can be greater than what we receive at home.

        “Ultimately, the better we’re able to take care of ourselves both physically and emotionally, the more we’ll have to give to our loved ones.” – Sue

        Karen Lee Richards
        Fibromyalgia Editor

      2. deseretta says:

        dear readers. I do not know how long I have had fibro but a long time I guess. I have all the symptoms that have been mentioned and more.

        When I get very stressed I get very fatigued and will sleep 24/7. I get very fatigued a lot. I get dizziness very quickly if I smell unpleasant odors. I am tired of being sick and tired but this is fibro and I have to live with it.

        I am being treated by my 7th day adv folks with liquid green veggies. I am aware that I have great limitations and need to watch closely that I am not attack by them.

        Keep a journal of your fibro and live by your experiences.Good luck and good health. God bless you.

      3. fibroman1953 says:

        As a man with fibro it has been hard to get a diagnosis until recently. I have lived with fibro for probably 10 plus years. Many Doctors don’t seem to realize that guys get it too. Trying to explain to your partner that a certain type of hair gel she uses makes me have a headache and I want to run the other way as fast as I can makes you a jerk in her eyes!!! ( I am no !longer married to her!!!).
        When my therapist (yes I thought I was going crazy because in the last year it has been unbearable at time, level 3+ and some symptoms were getting much worse) told me about male fibro and she thought I should talk to my G.P.; I did. We made a list of symptoms I was experiencing then went back through my medical history with him for 11 years. Guess what we found??? 11 years of symptoms!!! Not all at the same time but scattered through the years. He was treating me for arthritis and low back pain. Many of the times I had seen him, on other than regular appts. It was because of tinnitus, night sweats, depression, sleeplessness, vision issues, and serial headaches. He looked at me and said, “OMG, man, I am so sorry I did not put this together but you are the first man I have had as a patient with Fibro!!!”. This guy is a friend and about my age (early 60’s). Since then he and I have researched and read and come up with a game plan for me. I cannot take Lyrica,it was not a good thing for me!!! But knowing im not crazy was the best part!!! My point in all of this is that we need to be more pro active and involved in our treatment. Knowing now why I feel like I do on many days allows me to not have to be a macho man and work through the pain and make my condition worst.
        I think in many cases that the medical community thinks as fibro being a ” Lady” disease. I have to say that my Doctor has gone above and beyond his call of duty to make sure his associates are aware of my situation and how we found it.
        I appreciate the articles like this that reinforce the feelings many of us have. I think many men of my generation just try to keep on going because that was the way we were brought up as boys!! I just hope that more guys that feel the way I have for years seek out an answer and don’t continue like I did to “gut it out”. I am now not in any better shape fibro wise but my mental health is better than it has been in years!!
        Please keep sharing stories and ideas that work for you!!! That is what gives us hope and a reason to try to get up each day with a smile on our face!!!!!!

  4. sebrad says:

    I think, for me, not knowing my limitations from one day to the next has kept me from returning to work. I just got my B.A. but I don’t know how I can possibly return to work full time when about 50% of my days are spent trying to recover enough to get going again. I’ve been battling fibro for 8 years now and I’m still looking for answers on how to best manage it as a single mom of twin teenage boys. Lately, I absolutely cannot stand it when they are both talking talking to me at once!

  5. deseretta says:

    dear readers. I do not know how long I have had fibro but a long time I guess. I have all the symptoms that have been mentioned and more.

    When I get very stressed I get very fatigued and will sleep 24/7. I get very fatigued a lot. I get dizziness very quickly if I smell unpleasant odors. I am tired of being sick and tired but this is fibro and I have to live with it.

    I am being treated by my 7th day adv folks with liquid green veggies. I am aware that I have great limitations and need to watch closely that I am not attack by them.

    Keep a journal of your fibro and live by your experiences.Good luck and good health. God bless you.

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