The Many Different Symptoms of Fibromyalgia

A current list of Fibromyalgia symptoms from the Fibromyalgia Support Facebook Page

When I was first diagnosed with fibromyalgia, there were some lists of symptoms that were going around on Facebook. I took a look at them, and honestly didn’t believe that these lists of symptom after symptom could be attributed to fibromyalgia.

Boy, was I wrong.

In the many years since, I have learned the hard way that fibromyalgia can exacerbate and cause other conditions. Many of the conditions that I have now do come from the list above. Previously, I would frequently push back on the idea that the fibromyalgia somehow caused me to have yet another symptom or disease. But after so many years of having problem after problem, I can’t deny anymore that fibro can cause other problems.

Now when I’ve started studying about these other symptoms, I found it hard to get additional information or actual, definitive answers regarding whether or not the issue is truly caused by the fibro itself, or just happens to show up because some of the root causes that caused the fibro in the first place also caused these other symptoms. I’ve seen evidence in both myself and in the little bit of research that I’ve done to support both conclusions.

The overall conclusion that I can draw is that somehow the body becomes continuously overloaded due to day to day stressors and other inputs, which causes the hypersensitivity, adrenal fatigue and other issues, which leads to the diagnosis of Fibromyalgia. Then the underlying issues that cause the fibro, or the fibro itself, causes the other problems listed above. There can be other culprits other than internal issue, like chemical sensitivity causing an autoimmune response, but many of the chemicals in the environment haven’t been studied for this issue yet. (Chemical sensitivity is something else I also dismissed previously. Yet now I’m wondering – especially with the current PFAS issue here in the state of Michigan).

Supporting my conclusion above, there are some physician-agreed upon known causes of fibromyalgia that could also cause the above symptoms. Hypo/hyperthyroidism could cause things like feeling hot or cold often; swelling of extremities, fatigue and cold hands and feet. Colitis and celiac disease could cause cravings, fatigue, dryness of eyes or mouth and recurrent flu-like illnesses. Even being intolerant to soy, corn and other foods could exacerbate fibromyalgia symptoms and possibly cause a full onset of the disease.

All of this is very frustrating, and I can’t help but wonder if the term ‘fibromyalgia’ has become more of an umbrella term/syndrome diagnosis to use when patients have test after test and physicians cannot find anything else wrong with them. It is my hope that a fibromyalgia diagnosis is not becoming a ‘one size fits all’ syndrome diagnosis. We sufferers have enough problems finding the root cause of our symptoms. Throwing others in there that ‘might’ have fibromyalgia but don’t know for certain means that multiple diseases could exist under the diagnosis. And if each disease needs different treatment, how is someone who was diagnosed with fibro expect to figure out what treatment is right for them?

Luckily there is information out there regarding the holistic treatment of fibromyalgia as a syndrome. Dr. Jacob Teitelbaum is a physician who has studied chronic fatigue syndrome and fibromyalgia extensively. He has written several books about it and also runs a website called vitality 101. While his books do sound a little bit like a salesman trying to sell you on the next great treatment, there is scientific information to back up his claims. His authenticity as an expert was also verified by my primary care physician, who suggested his work to me in the first place. The vitality 101 website does contain a quiz that someone suffering with fibromyalgia could take and determine what possible supplements could help alleviate the symptoms of that person’s unique fibromyalgia issues. The supplements could be purchased from Dr. Teitelbaum’s site, or can easily be found in grocery stores like Meijer or Kroger here in the Midwest. Much of the information that I have in this post has come from Dr. Teitelbaum’s books or from my primary care physician.

Personally, I don’t trust that many pharmaceutical companies or medical facilities are doing enough to find a true cause and cure for fibromyalgia and chronic fatigue. There is simply too many divided opinions on the disease for there to be many good breakthroughs, at least for now. That is one reason why I have decided to take matters into my own hands and do research on my own into what others have done to control their symptoms. It is also something I encourage anyone who has a chronic condition to do. No one is going to be able to be the strongest advocate for your health except you. And the sooner you can start looking into your personal symptoms and what you can do about them, the sooner you may be able to find some sort of relief.

Attitude is Important

If you join an online support group for any autoimmune disease, you may be put off by the amount of frustration, anger and pain that get expressed. It is easy to assume that the group is full of drama, because all anyone ever talks about is pain. But unfortunately for those of us with autoimmune diseases, our life IS pain. It is a very rare occurrence for me to not have some sort of pain in my body every day, and it’s the same for anyone who has Fibro or an autoimmune disease.

To people who are reading that may not suffer from something like this, think about having the beginnings of a bad flu; your bones ache and you are exhausted. You might have a headache or your neck and throat hurt. Now think about having that every single day for a month. To those of us with fibro; what I just described could be a GOOD day. Days with a full fibromyalgia flare up are significantly worse!

Now thinking with that analogy in mind, I bet you can see why support groups tend to become places with post after post about pain, frustration and anger.

For some people, an online support group may be the only place they can talk about how the Fibro affects them. Perhaps their loved ones have finally told them not to complain anymore because they are tired of hearing it (yes, it happens). Or perhaps they don’t have any other support network around them that they can rely on, so the online support group may be their only outlet. Or they may be like me – they have expressed their frustrations so much to their loved ones that they are afraid that they are upsetting them, so they come to the online support group to vent.

Whatever the reason, we HAVE to get out how we feel. It’s healthy to do so. It makes us feel better to know someone is listening, even if it’s just a Facebook reaction to our post. Remember, we are not just talking about the occasional pain from working out too much, bumping an elbow against a shelf and getting a bruise or something like that. If I listened to someone without any pain-related disease complain regularly about every bump and bruise, yeah, I’d probably be one of the first to dismiss those complaints. But unfortunately, Fibromyalgia and autoimmune diseases are an entirely different animal to deal with. And they HURT.

With that being said, I believe it is also important to try to stay positive overall about the disease. Studies have shown time and time again that being positive will help someone get through suffering easier. And you don’t have to be the most positive person in the world in order to reap those benefits. Yes, there will be days when it is just impossible to even consider being positive about the pain levels. On those days where all you can do is lay on the couch or bed, supported by pillows and barely able to move, positivity is going to go right out the window. And that is fine.

But even on those days when the pain is the worst, I focus on some specific and positive things that do help me get through. I remember that I have the strength and courage to accept that the day is a wash and do everything I can to make myself feel better; even if that means laying in bed for hours, staring at a TV screen binge watching a TV series, or even eating popcorn, potato chips or ice cream (as much as within reason as possible of course…but even sometimes reason goes out the window when pain levels are high). I pull out heating pads, books, remote controls and anything else that I need within reach, and that is where I will camp out for the rest of the day.

But the most important thing I remember is that there will be a tomorrow. I WILL feel differently, thanks to giving myself some needed rest, and I will be able to do something different – even if it’s just to take a shower. I know I have the strength and courage to try again, and I will make some sort of progress beyond camping out at the campsite of the previous day, even if it is simply a shower and cleaning up my space.

I sometimes wish that there would be fibromyalgia support groups that are there to talk about the positivity more than the pain, as it’s so hard to have a positive attitude when all you hear is the negative stuff and can sympathize with it. Trying to stay positive is part of my personal treatment plan for this disease. So even if it means I have to stop back from a support group for awhile, I do it. Because ultimately I feel better when I am positive, and taking care of myself has to come first. Then, when I’ve built up some equanimity, I’ll continue to try to support others the best I can.

Fibro Trade Offs

My Apple watch is a lifeline for me. Not because it’s the latest and greatest model or because it has trendy new health apps or does the EKG thingy. My Apple watch is a lifeline because it simply tracks my movement. Those three little activity circles that track what you have done in a day can stop me from getting a flareup of pain because I did too much.

Right now, I can handle roughly 820 calories of regular movement a day. Included in that is one hour of intense movement (which is when my heart rate is at the level that the Apple Watch classifies it as ‘exercise’). If I go over that, I’m highly susceptible to have a horrible flare either that evening or the following day. So it’s important that I watch my activity levels carefully.

Naturally, this means I have to do some trade offs At work and at home to keep my activity levels steady and within their limits. I keep an eye on how much I do at work, and then with what is left over I can plan my workouts like walking, running or yoga, or doing household chores. Previously this was no issue. I go through roughly a third to a half of my activity rings at work, and that means that I have a good amount of activity left to get a workout in and maybe a chore or two.

Then the bathroom remodeling at work began.

I work on the second floor of my building, and there happens to be a restroom on my floor that I had easy access to. But for the past two months, that restroom has been out of service due to remodeling. I’m sure it will be beautiful when it’s finished, however the next closest restroom is now three times the distance for me – and on the lower level of the building. So now, I get to use more of my activity rings just to go to the bathroom. At first, I didn’t think anything of it. Then about a week into the remodel I got home and wondered why I kept being so tired. And that is when I realized that just adding that extra walk a couple times a day has meant that I have to decrease my activity levels at home to compensate.

Trade offs don’t just have to happen because of extra walking at work. I also have to consider trading what I want to do for what I need to do with daily chores and outside activities now that we are settled into springtime. I am very lucky to have a raised bed garden that is sectioned off from the rest of the yard. It’s a beautiful area that I have included bird feeders and birdbaths, a flower garden and have several raised beds for cold weather and warm weather vegetable growing. Because it’s a fenced in area with lots of obstacles, the best way to cut the grass is to hit it with a weed wacker or small push mower. That takes a lot of energy – energy that I then cannot use that day to do a workout or anything else around the house. It’s been extra frustrating this year because the rains here in the Midwest have made it excruciatingly frustrating to get in to do any work; When I have the extra energy it’s raining. When I’m exhausted, it’s bright and sunny out.

There are even more things I have to consider when planning my day that don’t have to do anything with actually burning calorie. If I have to sit a long period in a hard chair, or drive over an hour at a time, I know I’m going to need to account for that in my activity for the day. Driving and hard chairs are exceptionally hard on bodies with fibromyalgia.

So is it possible to get any larger of a daily energy allotment through diet and exercise? It is, if you stick with it. I’m currently trying to do just that, and having minimal success. (But at least it’s something!) The frustrating thing with that energy gain however is if you take a day off due to being sick or something coming up out of your control, you are back at square one as the benefits of the exercise or diet don’t stick around very long.

I’m still not giving up on trying to be some semblance of the athlete I was before the full onset of fibromyalgia. And even though it is significantly less activity than I used to do, I’m still pretty proud of what I can accomplish. It’s still a lot of trial and error, but I’m doing what I can to take care of myself the best way I know how AND still accomplish goals I set for myself. Who knows what I could possibly accomplish if I keep at it!