July 23


Do You Categorize Your Weird Fibro Symptoms?

By Sue Ingebretson

July 23, 2013

body systems, categories, chronic illness, digestion, fibromyalgia, FibroWHYalgia, headaches, leaky gut syndrome, solutions, symptoms, symptoms list, treatments


Headband and Fibromyalgia Symptoms

If there’s anything that we really “get” about chronic illness, it’s that it affects us each in different ways. Yes … in very different ways! Whether dealing with fibromyalgia, ME/CFS, arthritis, diabetes, weight concerns, hormone issues, or various autoimmune conditions, the symptoms are part of a never-ending list.

It’s common to deal with pain, fatigue, sleep disturbances, weight issues, etc. and these fundamental symptoms – to some degree — cross over to most chronic health challenges.

But what about the strange, weird, or unusual ones? What do you think is weird?

Years ago, when I was trying to figure things out, I couldn’t understand strange symptoms I experienced such as my inability to wear barrettes, a headband, or even my sunglasses on top of my head. I couldn’t wear hats or sun visors. I couldn’t carry a backpack on my shoulders. I couldn’t wear a jacket with a hood. With the hood up, it felt like a brick was sitting on top of my head. With the hood down, it felt like a strong hand pressed (painfully) on my upper back.

All the non-fibro people are thinking, “Weird” and, “I don’t get it.” All the fibro people are thinking, “Uh-huh. Totally get it. I have that , or something equally weird, too.”

We can have hyper-reactions that create symptoms all over the body. Certain shoes, clothing, jewelry, etc. can trigger limb burning/tingling, headaches, and shooting pain that travels. And, it’s not always traceable to something worn or carried.

Symptoms can appear anywhere and affect any part of the body. The symptoms themselves may be constant, intermittent, shooting, searing, annoying, or bewildering.

In fact, bewildered is how I felt most of the time as I was trying to figure things out. I wanted a concrete list of symptoms so I could check them off one by one to validate my experience. I wanted to know if symptoms I had were outside the realm of fibromyalgia to determine if other diagnoses were possible/plausible.

Sound familiar?

With each new symptom I experienced, I added it to my already out of control list. The fact that my symptoms were increasing made me feel even more out of control.

My life was a mess … until I changed my thinking.

It took time, lots of research, and loads of tenacity, but I learned WHY fibromyalgia affects so many different parts of the body. I learned WHY we each have a different array of symptoms and experience them differently. I learned WHY symptoms continue to increase – and what I could do to reverse the undesired trend.

So, here’s how my thinking changed. I learned to look at symptoms as evidence. Rather than evidence of things being out of control, I recognized them as evidence of what – exactly – wasn’t working properly within my body. I narrowed my focus to that particular system of the body and learned how to build it up, revitalize my health, and turn my health challenges around.

Here are the basic body function categories:

Body Systems Chronic Illness

Circulatory (heart, blood, vessels)

Digestive (mouth, esophagus, stomach, intestines)

Endocrine (glands)

Immune (proteins, cells, organs, tissues)

Lymphatic (removal of metabolic wastes and balancing water, salts, and nutrients)

Muscular (muscles)

Nervous (brain, spinal cord, nerves)

Skeletal (bones)

Reproductive (reproductive organs)

Respiratory (nose, trachea, lungs)

Urinary (bladder, kidneys)

Excretory (lungs, large intestines, kidney function)

These systems all work together to keep the body in balance. Many of their functions overlap.

Can you categorize your symptoms within these systems? Once you can wrap your mind around how many systems of the body are represented by fibromyalgia, or any other chronic health challenge, it’s easy to see that these are SYSTEMIC or multi-system conditions.

Rather than think of each new symptom as weird, figure out where it belongs in these categories and look for balance.

The great news is that systemic conditions respond well to activities, practices, treatments, and methods that support the body in fundamental ways.

It’s all about rebuilding the body at the root level – of course, Rebuilding Wellness, to achieve balance and wholeness.

I now look at each symptom as evidence of what I’ve already learned. The body is a complex SYSTEM.

Our symptoms point to the various systems

of the body that are compromised.

There are always current studies being done and new information released daily on “new” findings about fibromyalgia and other health concerns. Studies tend to focus on varying systems of the body. For a long time, fibromyalgia research has focused on the nervous system, immune system, and the digestive system. Of course these are all highly involved. Right now, there’s a lot of news regarding the circulatory system of the body. It’s all very exciting and while new info is always a good thing, I keep in mind that it’s “what’s beneath those findings,” that’s important.

For example, when we learned years ago that leaky gut is a big player in the symptoms of fibromyalgia – I wanted to know WHY leaky gut happens. When we learned that people with chronic health challenges have a compromised immune system – I wanted to know WHY.

Once I’ve dug down to the roots of WHY chronic health challenges occur, then I can tackle HOW to approach a solution.

Just sayin’ … I like to keep the BIG picture in mind and dig down to the roots whenever possible.

If you’d like to read more about digging down to the roots, check out my #1 Amazon Chronic Illness bestseller, FibroWHYalgia (click the Buy Amazon button to check out the Look Inside feature, check out reviews, and more).

 As always – it’s my goal to provide you with empowering, encouraging, and helpful information geared to move you through your own healing journey.

What’s your weirdest system? Start the discussion below!

  1. Weirdest symptom-I can begin to itch in one place which usually leads to an all over full blown itching fest. Also the dry eyes one minute to full blown tears the next.

    1. Sallie — thanks for your input. Yes, itching can be weird, and definitely not fun. I used it itch only on my shins. Weird? And the dry eyes is a concern, too. Tearing is a response to dry eyes, so getting the dry eye to stop in the first place is a key goal.

  2. The first 10 minutes I lay down at night seems to be the most painful, during this time frame (now this is weird) I can not tolerate the slightest touch, I mean the arm hair of my partner touching my skin is more painful than any one could imagine! I know my partner must think I’m crazy. Of course along with the average things like snug fitting waste bands, socks, bra etc…etc…If I stand on my feet for more than 10 minutes I feel like my hips will pop out of socket, my knees give way, and from the knees down to the tips of my toes feels like a pressure balloon ready to explode! More painful than words can describe. .

    1. Val – I’m so sorry that you’re dealing with these symptoms! I used to say that it felt as if my hip joints were lined with sand paper. Standing or walking was excruciating. Thanks for sharing how you feel as I know that helps everyone in this community.

  3. Oh and lets not forget while laying in bed the simple weight of a sheet over my toes is unbearable:-(

  4. The pain of the tears when they burst without warning from my eyes. An area about the size of a 5p coin in the centre front of my shoulder that burns as if someone is pushing a hot metal rod into it.

    1. Annette – thanks for your comment! In my book, I gave names to several different types of pain. One of them was Nickel pain because it felt like heat or fire in the shape and size of a nickel was burning into me. I can completely relate. Again, your comments help this community, so thanks for sharing!

  5. Sitting is sooooo painful. The elastic on my underwear can be excruciating some times. Dry eyes, dry skin! Weather changes are the worst. I always know when it’s going to rain based on my shoulder pain.

    1. Linda — you’re right in that sitting can be particularly painful. And, yes – we definitely agree that weather makes a big impact — despite the recent studies to the contrary! Thanks for your comments.

  6. My mother has fibro in addition to RA. She has recently said that her head and arms hurt when she urinates. Does anyone else have something like this?

    1. Charlotte — I had a collective group of amazing health professionals over at my home today when I received this comment. We all chimed in with our opinions. I wish I had the space and time to articulate what was said, but the bottom line is that we each had a different opinion and a different perspective. None of us had heard of this situation in particular, but we each feel it could stem from a variety of reasons (significant health challenges, emotional concerns, blood pressure issues, simple coincidence, etc.). Thanks for your input and maybe others here will chime in? Love this sort of conversation! Thanks again for your comment.

  7. My latest issue is clothes. They are just plain annoying to wear. I initially thought I was putting on weight but that was not so. My clothes are not tight, they are just uncomfortable. After doing some research I learned that other people have the same complaint. Guess I could look on the bright side in that its time to go shopping but I hate shopping it tires me out. Thanks for your post it certainly was very informative and gives me more help with figuring out this fibro.

    1. Thanks Kelly! I have a few questions for you! You mentioned that your clothes are annoying. Do you mean that you have pain anywhere that you feel restricted such as waistbands or collars, or do you mean all over? Just curious. Is it painful such as with allodynia (where the skin hurts all over)?

  8. I can relate to many of the symptoms above, however, my weirdest symptom is feeling like the inside of my body is on fire. My skin feels cool to everyone; the only outward change is that my scalp feels damp. At first I thought it was hot flashes, but these are simply not the same! There seems no way to escape this feeling (including sitting in front of ice cold A/C) except to wait it out.

    1. Vivien — that’s interesting! I’m certain it’s very uncomfortable and I hope this awful experience comes only sporadically. Body temperature fluctuations are common but more so in the typical “hot flash” scenario. Sometimes, with thyroid dysfunction, we’re not likely to sweat much (or at least it wouldn’t feel like we’re sweating). I’ve known people who tend to sweat only in specific parts of the body such as the back, the feet, the hands, or the head. Again, thanks so much for the comment and contributing to this conversation.

  9. When I’m having a flare, I can have stuttering. Also, weird “tics” where my arms and legs flail about. My doctor gave me an MRI just to see if there was anything going on in my brain to account for these, but the results did not show any reason.

    1. Anne — so glad you left your comment! I’d forgotten that I had bouts of stuttering, too. I didn’t have limb tics but plenty of facial tics. The central nervous system definitely goes awry with fibromyalgia. Communications get crossed. I’m glad your MRI showed nothing else, but I know how frustrating that can feel, too.

  10. I can totally relate about the headbands, barrettes etc. it gives me such a headache. Finding a hat I can tolerate to wear on the beach was so challenging because I have a big head to begin with. Bathing suits are painful, eith giving me a headache because it pulls on my shoulders or it chafes around the area under my boobs if it is tight to hold it up. I could go on and on, noise, light, bumpy roads, shoes… Thanks for confirming I am not a hypochondriac or crazy!

    1. Pat – you’re so very welcome. We’re all a community here and share so many things — even though we’re each unique. I have trouble with swim-wear, too as they often have straps that cross in the back or tie around the neck. I can’t wear them for very long without creating an unpleasant chain reaction. Fortunately for me, it doesn’t last long. Love your list, by the way. Bumpy roads? We can so relate!

  11. Yeah, the facial tics “ticks” me off. I constantly have flashbacks of old, old, old dreams I didn’t even remember I had until the flashbacks kick in. I could be concentrated on something else and wham they pop right into my head. They last just a flash of a second but I live them vividly again. I’m wondering if this is linked to Fibro.

    1. Rebecca — flashbacks, traumas, anxiety, etc. are all common for those who deal with fibro. Healthier ways of dealing with stress is a BIG part of healing. Interesting connection with the tics. Thanks for sharing!

  12. Great article! I’d go insane if I couldn’t tolerate wearing a hat on my head (all that California sunshine). I like how you used a classic game to help describe all the systems.

    1. Thanks Gerry! You’re learning more than you ever thought you’d know about fibromyalgia, right?

  13. I made a seriously long list of symptoms, arranged them by body system and diagnosis (fibro, back damage, chemical intolerance, etc) figured out the triggers for the odd things (like “wearing things with hoods hurts my head”) and figured out how to keep that trigger from being tripped, if possible (“eliminate all hoods from my closet; get more scarves that I can stand.”)

    Ended up with an AMAZINGLY long list of stuff to do or avoid, but now I have good data I can look at to remind me exactly what to avoid and why. A LOT of it interrelates really oddly. (Chronic sinus infections from a car wreck that broke my face are aggravated by eating dairy products, when my sinuses are bad, it affects the fibro and lowers my pain tolerance for heavy clothes, so now I know if I am going out for Mexican food, don’t wear a heavy jacket, and my car has no heater so consider whether I need Mexican food that bad when it’s cold, if I do, can I get a ride?)

    It is a very complex thing to do, to chart it all like that, but it made sense of some stuff that I hadn’t figured out before, and gives me a chance to do something about it. (Wear orthodics in my shoes or I can’t sleep at night then the next few days are worse with weather changes. I can’t stop the weather changes, I CAN wear orthodics. Got rid of all shoes that I couldn’t wear orthodics with.)

    It also let me see where the spots are that I hadn’t figured out what would help, so I could look up information and try new things that make specific symptoms go down. Also made it interesting to chart things like a new supplement, it’s easy to check off “changed this, that, and that” when you have a good list.

    This list also either weirds doctors out totally, or they are VERY interested in all the details, it lets them see just how COMPLEX this mess is in my life, and how HARD it is to juggle all this stuff daily. Also helps to show people I care about why I’m so intolerant of odd things, what the results of the small things add up to, and why I do things that look random to you. (If we are meeting at a restuarant, I vote for Chinese if I am driving, Mexican if you are driving.) (No, I can’t have a cup of coffee, even if everyone else is and the person offering it is offended. I know I had coffee the other day at your house, but this person has fragrant candles all over, and that pushes the rest of my limits to the edge, coffee is too much at that point.) It has made my family understand that there IS a reason behind all of it and they only ask if they are curious just what I’m avoiding and why.

    Also helps clarify in my head what’s a preference or a want vs what is a need. That shirt looks cute, that’s a want, it has sleeves that are too tight around the wrists, my shoulders will hurt, that’s a need, Doesn’t matter how much I like it, I don’t buy it. Until I realized that tight cuffs affected my shoulder pain (and that turns into headaches) I bought what I wanted, and had to get rid of stuff later.

    I realize this isn’t something everyone can do, I have some serious psychiatric stuff that tends to run amok somehow, I use that odd focused energy to do this sort of thing. If you can do it, it is a really useful thing to have a list like this…

    1. Del — thanks so much for sharing! I did the same thing, and little did I know that I was creating a road map for my own healing success! I wish you the absolute best.

  14. I have a tendency to get frozen joints. It happens out of nowhere. I’m OK one day and the next the joint starts to hurt then freezes up. It takes about 6 months to a year to get it back to normal. Then a year or two later, another joint will freeze. It’s not from inactivity because I was pretty active before it happens. I worked and was on my feet all day with walking and lots of upper body movements. (I am a nurse). I don’t understand it. Another is suddenly I started to react to any medication my doctor would prescribe. It started with antibiotics. I’m afraid to try anything new. I went from no allergies to a long list of them.

    1. Cathy – yet again, you’ll hear me say, “You’re not alone!” First, let’s start with the allergies. Some would say that the very definition of the fibromyalgia body is an allergic body. One thing that’s coming to light recently is the tendency for cross reactions. So, when we consume foods that our bodies react to (such as wheat/gluten, dairy, corn, soy, caffeine, food flavors/dyes/sweeteners, food preservatives/additives/chemicals, etc.), then we can start to react to foods that have a similar molecular structure. For example, wheat contains gluten and quinoa does not. However, if the body is in a reactive state it can react to gluten and to anything that is similar to gluten. When it’s in a highly reactive state, it’s not very discriminatory. The same goes for medications. If the body has a reaction to one medication (antibiotics are common), then it can also react to others when they’re introduced. The goal is to tame down this highly reactive state (inflammation among other things), so the body can calm down and stop reacting to everything.

      On a similar note, inflammation is also related to the frozen joint issue. I think there are other factors involved as well such as some latent infections (that’s my opinion). Injury, toxins, and/or stress are also potential factors. Some people tend to have the frozen joint issue (frozen shoulder is common) and others don’t. You’re right in that it can freeze up quickly. It’s important to keep the joint moving as much as possible and start to pay attention to the early twinges that signal it’s coming. It sounds to me like your circumstance is more rampant that what I’ve witnessed and researched. I’d wonder about the exposures you’ve had to toxic elements … just a thought.

      Thanks for your great comment! It’s important to address the wide variety of symptoms we may experience!

  15. Hi everyone! I can certainly relate to all the symptoms mentioned above, but I also have ADD, osteoarthritis, DDD at cervical and lumbar areas of spine, depression ( I think its from the chronic pain), anxiety, restless leg syndrome, brain meningioma, and fibromyalgia. Fatigue has gotten worse and the weird part is that only the right side of my throat hurts. Maybe starting with CFS? I have always been in pain since childhood which everyone contributed to growing pains. I started having migaines, with nausea and vomiting around 6 yrs old. The smell of my mother’s perfume, especially if we were in the car triggered them badly. I am also a registered nurse, and worked in ICU, coronary care unit, trauma, and ER. Always on my feet and walking. Stress like you can’t imagine, but I loved my job. Then my 27 yo daughter passed away froma heroin overdose and things started spiraling out of control. One year later I got Bell’s Palsy. Have not worked for 3 years. The knots in my shoulders get so bad that they make me cry. Numbness to right hand attributed to carpal tunnel but I have my doubts. Flailing of arms and legs and at times when I’m in bed happen to me too. Fibro fog off the charts! i definitely recommend some type of mental care because fibro can be dismissed by health care professional as not being real and that we’re just med seeking making us feel depressed and maybe just a little “bit crazy”. Being dismissed by colleagues can be very demeaning. Take care all.

    1. Yolanda — thanks so much for sharing with this wonderful community! Your experiences are truly important to us all.

    1. I don’t know about the rest of you, but the day I was diagnosed with Fibromyalgia, I was relieved to have a name to cover ALL of my symptoms. As some have indicated, my odd symptoms began as a child; and yes, all were related to growing pains.

      Sweating was one of my major problems. I had worked as a church organist for many years. You can just imagine how much fun it was to be leading the church in worship and the organ manuals were wet from my dripping face. I do feel that it is somehow tied in with stress.

      Of course my purse is never without my trusty med bottle filled with various over the counter remedies. Luckily, they seem to work for me.

      The worst, which began happening about three years ago, is the biting sensation and the itching. It is never constant, but it gets you to wondering if you do, indeed, have a bug in the house with a mission. Never have seen any, though.

      All in all, though, I consider myself most fortunate to just have a whole group of annoying symptoms traveling all around in and outside my body, and that it is not more serious than it is. I have learned to deal with it and accept it for what it truly is.

      1. Thanks for your comment, Lindsey. Sweat is a subject that comes up often with my clients. It’s either too much, or too little. The ones who have too much are painfully aware of the problem, but the ones who don’t sweat (or sweat very little) aren’t as often aware that it’s a problem. Both stem from the same metabolic chaos that’s present with fibromyalgia. When the root level causes are addressed, symptoms begin to diminish. So glad you’ve found what works for you!

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