Looking Disabled

Me, finishing my very first half marathon on Belle Isle in Detroit.

Still trying to be an athlete, the year of my diagnosis I ran two half marathons. The last one I pushed the hell out of myself to get it done in less than three hours.

And boy did it cost me.

I spent the rest of the day (and the day after) barely moving and using my cane heavily. And even though I had expected to be in a lot of pain and barely moving, there were still things that needed to be done. So my husband and I went out to do errands the second day after the marathon.

I decided to wear my half marathon shirt that I was so proud of, but again relied heavily on my cane. The looks I got in the stores were priceless, especially because the shirt had the date of the half marathon printed right on it.

I’m sure many of the people were simply thinking I was a volunteer and not a participant. Perhaps they made up some story in their mind about how I was someone who suffered a catastrophic joint injury and could never run again, but would still support the running community. I even had a well-wisher ask about how the race went. And when that happened, my biggest fear started going through my mind; that they would think I was a drama seeker, and the cane was somehow my choice for a drama seeking at that very moment.

Fibromyalgia is tough in that you really don’t know when those flares will hit. Sure, you can start recognizing patterns to plan for bad days; but trying to predict every single trigger is something that is just too much to attempt. That means there may be days when you are back to activities that were pre-fibro and feel great, and in the next day (or even in the next hour!) you feel like crap because you just pushed a little too much. And out comes the cane, the wheelchair or electric cart through the grocery store to get your groceries for the week. Or you ask someone else to get you home because the pain won’t let you drive or walk anymore.

Often we see stories on social media about someone who is told they ‘don’t look’ sick; so they shouldn’t have a cane, a disability sticker, shouldn’t take a certain parking spot, etc. And ultimately, it turns out that person had cancer, MS, or some other determinate diagnosis that clearly shows that yes, they deserve those tools because YES, THEY ARE SICK.

With an indeterminate diagnosis like Fibromyalgia, we don’t have the luxury of a black and white test to say whether or not we suffer from this disease. And to many, hearing someone say they have fibro is akin to someone trying to get out of something claiming they have a physical ailment; it’s an excuse to be lazy, dramatic or to just get attention.

Now I know I probably shouldn’t worry about what others think and say to me. And I also know I need to make sure I do whatever I can to ensure and safeguard my ability to get around and get things done. But at the same time, I worry about the perception. And some of the reason is because I’ve seen people who truly don’t have a reason to utilize an accessibility device use one anyway. It reminds me a lot of the debate of a service animal vs an emotional support animal; one is something that someone truly needs to get around and be independent as possible. The other is simply something that someone feels like they need to have around, no matter how ludicrous it looks. But just like there are now considerations of new rules to say what can and cannot be a support animal, I cannot help but wonder if there will ever be situations where I will be denied tools to help me move around because I don’t look sick, or can’t claim a determinate diagnosis is the cause of my sickness.

In a world that is becoming more and more fueled by perceptions and not by facts, I feel like things are stacked against me and people like me. We do everything we can to keep moving, keep ‘carrying our own weight’ so to speak, and to try to claim some semblance of the lives we once had prior to the fibromyalgia and other problems taking over. But even if we do our best, we will never be the same as we were before the sickness started. We will have to rely on canes, walkers and wheelchairs. We may have to end up with a disability sticker on our car, or expect others to drive us around because we are too fogged up and in pain to safely get someplace. And ultimately, we may have to feel the sting of someone looking at us to say ‘You don’t LOOK sick!’

I’ll fully admit, I don’t know the full answer to this question. Perhaps there isn’t a ‘one size fits all’ answer, and I just have to find my way as I go. Perhaps I’ll never be able to fully convince someone else that yes, I DO have a sickness that I need that mobility aid for, even though they’ve seen me run a 5K, do an advanced yoga pose, or just saw me post about my home gardens I tend in the spring, summer and fall Or even worse, what if that person is a coworker, watching me on a weekend walk around with in pain using a cane but they see me I zoom around my place of employment like I have no pain workdays? (They also don’t see the immediate fall onto the couch position I take when I get home because I’m so exhausted from keeping up the facade)?

With all of these things in my head, I do have some personal measures that I take regarding those aids. Perhaps I do have the goal of not attracting attention, perhaps it is partially pride. But my personal measure is that I do not rely on any aid unless it’s absolutely a necessity. I don’t walk with a cane just in case I need it; if you see me with a cane, it’s because I am doing bad enough that day that I cannot walk without it. If I am not driving, it’s because the pain is high enough that I don’t think I can drive safely. If I have a brace on a joint, or have my arthritic gloves on it’s because I’m already experiencing pain and I’m using the braces to soothe and comfort the affected area.

Simply put, the tools to help me cope come out only when I need them. They are never out as a precaution. Further, if I feel like I may need a coping tool because I expect my pain is going to be too high at a function, I’m going to consider not going to the function instead of simply going without the tool in question. Taking care of myself has got to be first and foremost in my mind, as no one else knows what I truly need and what my limits are. And part of taking care of myself is also determining when I can be strong and when I can be weak, and when I will be weak but still comfortable enough to use a mobility aid.

Someone may look at this and say that I’m waiting too long to pull out a mobility aid or brace, but I disagree. Pulling out the tool when I absolutely need it means that if there is push back regarding my use of the tool, I feel more comfortable being assertive when I push right back on that person. And using these tools sparingly to me means I’m not looking for drama or sympathy. I am simply getting done what needs to be done, and using the tools at my disposal in order to do so. To me, it’s the healthiest strategy for using mobility aids and braces that I’ve put together. And it works for me.

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.

The Snake-oil Salesman Cometh

One of the biggest, most frustrating pieces of having fibromyalgia is the number of people who come to you with information on a ‘cure’ for the disease. Along with the surge in fibromyalgia diagnosis there also seemed to be a wave of specialty and home-business product peddlers that claimed to have “THE” cure for fibro. Oh, and while they were at it, you will also lose weight, feel great and have the best energy of your life…if you just would buy their product and take it long term.

OK, I will admit many people offering products truly are looking at helping someone else. The product may have done wonders for them, and they are just trying to pass on something that did so much good for them to someone else so that they can have relief as well. But what I think those well-wishers don’t understand is that they are talking to a group of people who at times are so desperate for a solution to feel better that they are ready to give their dominant hand for a cure. And that can make the situation all the more dangerous.

I’ll never forget how many people tried contacting me through my first fibro blog about how they had a cure or treatment that would change my life. Perhaps it is one reason why I’m somewhat cynical now. But I also like to think I’m looking at this logically. If scientists diligently working through studies all over the world on how to find a cure for fibromyalgia haven’t found anything, I’m pretty certain that although an essential oil, supplement or certain diet may help, it’s not going to be the cure for everyone. (And that cure certainly isn’t being held a secret because whomever the ‘boogie-man” is now doesn’t want you to know about it.)

First, let me explain why I believe some of these supplements and so-called cures could be dangerous. I work in a Food and Drug Administration (FDA) regulated industry for a company that makes medical devices. (No, the company I work for doesn’t make any devices/supplements/medicines for fibromyalgia or chronic fatigue syndrome). Because I work in this industry, I am required to receive training in the federal regulations regarding medical products, what is or isn’t allowed to be marketed, what the safety requirements are and how to receive approval and classification for these products to sell them here in the United States. And at their core, the regulations are for the most part black and white (well, they are once you get used to them). The bare bones of the regulations basically say you must have a product that can CLEARLY be a benefit to a MAJORITY of disease sufferers and you must have significant documentation of your testing that shows such. You also must have a documented way of building/making the product, it must be made in a clean environment and be tested for purity and/or for proper performance. Depending on the product, you may have more regulations than that, but for much of the regulation, if you can clearly document products from development through to distribution to a customer and keep all of that information organized, you are doing well.

With that information things can start to get a little clearer about why certain products are not allowed to advertise they are cures, and why others are facing so many recalls even though some fibro sufferers swear by them.The two that fall into issues the most are any essential oils, and the herb kratom.

Essential oils work because the sub-components in each oil (called a phenol) work with the body to produce the desired result. The problem lies in the fact that phenols work differently in different people. That is why peppermint oil for one person will cure a headache, for another it will settle their stomach, and for a third person will stimulate the stomach to make more stomach acid. You won’t know what the essential oil will do for you unless you take it. Further, you can’t pin down the specific active ingredient that will do something to your body either, since it may be one or a combination that does its magic. Sure, there have been many different tests to try and find that magic formula, but every attempt that I’m aware of has failed. And this basically leaves us with a supplement that we cannot be certain who it will help and who it will hinder. Would you buy a medicine that would only work for a third of the population, and may or may not have different side effects that you won’t know about until you ingest it? When it only works the way it’s advertised for a third of the population, it’s not that great of a treatment!

Kratom in my mind is much more dangerous. While there are properties of the herb that will help those with fibromyalgia, those properties are FAR outweighed by the risks. Studies have shown that kratom can be addictive, which is my first big red flag. Further, much of the kratom that comes in the United States is not made in a clean, sterile environment, or if the claim is made that it is, it’s not documented as such. Kratom can also be cut with other ingredients that could cause other serious side effects, but the recipe for the kratom concoction a company makes isn’t documented, so you have no idea what those drugs are. Finally, there have been documented deaths from kratom ingestion.

And this is why I put those trying to sell kratom in the dangerous ‘snake-oil’ category; Even though there have been deaths and documented evidence that this stuff is dangerous, people are still willing to risk it just to get pain relief. I don’t know a fibromyalgia sufferer who hasn’t been that desperate for relief that they would be willing to try almost anything. I know I have. But now you can see how dangerous it is for anyone to claim they have ‘the’ cure and push these products without having enough information about what they truly are, how they are manufactured and how safe they are.

I think I would be remiss if I didn’t mention the currently famous CBD oil. CBD oil as I understand it, works a lot like an essential oil that I explained above. You can get CBD oil made out of cannabis, (which means you better be in a state that has marijuana legalization in some form to have that specific form of it) or you can get CBD oil made out of hemp oil. And while CBD oil may have an excellent benefit for fibro sufferers, it also suffers somewhat from the same issues as the manufacture of kratom. There is no one real way to manufacture it. Therefore you will have varying degrees of the sub-ingredients that actually do the work to make you feel better depending on what supplier you go to. You also cannot be sure of the cleanliness of the manufacturing of the oil, nor can you know it’s potency, since cannabis and hemp can be grown in so many different climates. So there isn’t a very fast way to find your ‘perfect’ dosage here. It would take a lot of scoping out the vendor to find a decent one, and then trial and error and documentation of your dosages before you get exactly what you need. So expect to spend lots of time and probably lots of money to find pain relief.

There are a number of medical devices out there now that claim to help fibromyalgia. And while I would not call any of these devices a ‘cure’, many of them do alleviate fibromyalgia pain. I use the Quell, which is classified as a ‘Class II’ Medical device that the FDA has approved for chronic pain. When a medical device is given a class by the FDA, it means that the manufacturer has gone through a significant amount of time to document and show the FDA proof that a device does what they say it can do. That is why I personally will always choose a classified device like the Quell over any other device that says they are ‘registered’ with the FDA. (Oh, and don’t fall for the ‘We were quickly registered!’ spiel either. Registration doesn’t mean approval; it means you are now on record as selling a certain type of device…probably a massage-device of some type or kind)

I am not trying to be negative in this post; really, I’m not. I simply get frustrated with peddlers of misinformation and of dangerous products. Just recently I met another woman who was telling me all about how she was told about this ‘wonderful’ cure for her fibro (kratom) and how she hasn’t felt this good in years…and on and on she went. After she was done, I gave her the knowledge I have about that particular product and why I’m on the side of the FDA for getting it out of the country. She looked at me like I was her enemy.

The biggest takeaway I want people to take from this post is this; If you choose to ingest kratom or any supplement, or before you spend top dollar on a medical device for pain, look it up. Find multiple sources that give you information (both bad and good) on the product. Look at the side effects. Look at the investment cost. KEEP YOURSELF SAFE from predators out there. Because until the scientific community comes up with some sort of medication that will work for all of us, we fibro sufferers will be inundated from time to time with new ‘cures’ to all of our troubles that will instead just leave us poorer and possibly with more problems.

Fibromyalgia: The Indeterminate Diagnosis

It’s interesting to see how simple I thought things were with my own diagnosis of Fibromyalgia, all those years ago. I remember thinking, now that I have my diagnosis, I just had to figure out what the heck I could do to get my life back together again.

My first few months with the diagnosis had brought me very few days of relief from the pain of that very first full flareup. Even with the medications that my doctor had given me and the list of supplements that I had found myself, it seemed nothing helped ease the flare ups once I was in one. And what was worse, I was missing significant training time and backsliding on much of the work that I had achieved over years leading up to the diagnosis as an athlete. I didn’t know what was worse; the side effects of the medications, or the fact that I couldn’t just get back to the all important-to-me athletic training. But I soon found out that it was neither of these two things.

Fibromyalgia is what is called an indeterminate diagnosis. That means there is no real clear medical test to accurately classify who does and who does not have the disease. This means many people with the disease may actually have something else wrong, but because the medical tests don’t show anything else wrong, they are handed the fibro diagnosis. It becomes the catch-all diagnosis for everything unexplainable that has body-wide pain. And while one doctor may be accepting of having a fibromyalgia diagnosis, others look at it as a fake disease created to simply allow someone to get more attention from the medical community, from family or friends, or even just to get more pain pills.

I’m starting to believe that when you are given a diagnosis that is indeterminate it’s sometimes worse. These diagnoses seem cause a lot more pain and frustration. With something like fibromyalgia, it’s very easy for another doctor, coworker or someone on the street to say that you are faking your illness, which isn’t true if you say you have something that is determinate, like cancer. I still get embarrassed at times when I have to tell someone I have fibro. As the words come out of my mouth, my mind starts wandering. ‘What if they don’t believe me?’ ‘What if they come out and say they don’t believe me?’ ‘Do they think I’m faking right now, holding my cane and leaning heavily on it as I speak?’ ‘Maybe they think I’m a pill popper, trying to get more opioids to be high’ ‘Maybe they think I am just someone so full of drama I just want all the attention and that is why I say I have fibromyalgia.’ I’m 99% sure that everyone who first gets this diagnosis has these types of situations happen, and the very same ‘what if’s’ game playing in their head. Unfortunately, that doesn’t get much better. I still hear those thoughts in my head even years later.

In some ways, I think if I had a determinate diagnosis – something that a positive medical test can give a clear clarification as to whether or not you have a disease – it would be easier. There are many times in the middle of a flareup of pain that I would even wish for that determinate diagnosis, no matter how bad it was. Anything but fibromyalgia. I don’t care if it’s cancer, or something just as horrible. I don’t care if it’s something that I will sooner or later die from. Just not fibromyalgia. Just not a disease that I have to explain in detail to almost everyone and get “those” looks as I explain. Perhaps a determinate diagnosis would give me so much more peace of mind. I wouldn’t be questioning myself after hearing yet again from someone that this diagnosis is “All in my head.” Perhaps I wouldn’t be questioning my sanity so much as the pain levels rise in my body.

The fact that so many people get lumped in with fibromyalgia makes things even harder for those studying the disease to try to come up with a root cause and that long-desired cure. There are already many causes to this disease. Mine has multiple root causes – one happens to be congenital, a second is significant stressors on my body, and a third is adrenal issues. Someone else could have simply had a serious allergic reaction to cause the fibro or another person could have had an operation where fibro was the result. And still someone else could have simply been involved in a significant accident that brought on the fibro (Morgan Freeman has fibro because of an auto accident).

The fact that there are so many root causes means what works for one person isn’t going to work for another. Cymbalta, a selective serotonin and norepinephrine reputake inhibitor (SSNRI) is a drug that is approved for fibromyalgia pain. It did nothing for me, except to make me gain 30 pounds that I’m still struggling to get off. Many others say Lyrica, also known as pregabalin, has taken all of their pain away. But again, it did nothing for me but cause significant side effects. The list of pills and remedies people use for Fibromyalgia is staggering. It’s so bad that I know fibro sufferers that greet someone else with the diagnosis with the question, “So what are you on?”

Unfortunately many of us handed this diagnosis don’t have much to go on when it comes to why we got it. There isn’t a path that is set in stone that we can walk. Instead, we have to find our own way through this crazy diagnosis and how we can personally find relief. We have to be our own health advocate. And while that sounds scary, there are great first steps that can be taken to get started. Keep a pain diary that includes what medications have been taken for pain and for the disease in general. Look for connections with other diagnoses that have been received in the past. Take stock of how much stress is going on and see if it can be reduced in some way. All of these things take time to find the meaningful information, but I firmly believe the information becomes more and more valuable the longer it’s tracked.

There may never be a clear test to give an accurate diagnosis. And there may also never be a cure for this horrible atrocity of a disease. But I can’t give up hope, and I’m going to do my damnedest to keep taking care of myself to make this disease as manageable as possible.

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!

Having Fibromyalgia Is…

Hanging out with my dog Natasha during a recent fibromyalgia flare

It’s one thing to say, “I have Fibromyalgia.” It’s a total other thing to actually know what fibro sufferers go through day in and day out. With that in mind, I thought I would share some daily struggles and extra things I have to do in order to get through the day.

Having Fibromyalgia is having a cane in every floor of your home and in your car because you don’t know when the pain will make you have to use it.

Having Fibromyalgia is one day being able to help your family clean the house and the next morning not even being able to lift clean clothes to fold them.

Having Fibromyalgia is going into work full of pain but doing your best to mask it at work so not to draw attention to yourself.

Having Fibromyalgia is having long discussions with my husband to determine whether or not the flare up of pain is bad enough to take the heavy pain medication I get from my doctor. These discussions include several points: How many I’ve taken for the month; How many other pain meds I’ve taken that day and what else I’ve done to try to stop the pain before I go to the big last resort; And whether or not I’ll go over the allotment that the doctor allows me to have each month. (And to answer that question, my doctor allows me to have ten hydrocodone tablets per month.)

Having Fibromyalgia is being at work and typing one sentence too many on a keyboard and having your hands cramp up so badly you can’t even hold a phone.

Having Fibromyalgia is not allowing your cat to walk on your legs because it hurts too much.

Having Fibromyalgia is watching your husband walk your dog without you because the pain in your legs is so severe that you can’t stand or walk very far distances.

Having Fibromyalgia is not allowing your husband to turn on the ceiling fan or open a window because the airflow hurts your skin.

Having Fibromyalgia means not being able to travel in a car long distances without needing multiple days to recover.

Having Fibromyalgia is having your legs, feet, arms and hands go numb on a whim.

Having Fibromyalgia is doing your best to avoid the freezer or refrigerated aisles of a grocery store because the change in temperature hurts.

Having Fibromyalgia is learning how it feels to have pain just breathing.

Having Fibromyalgia is having brain fog so bad you can’t remember names of people or specific words long enough to have coherent conversations with anyone.

Every one of these have happened to me this past week as I continue to battle a Fibro flare up, thanks to the up and down weather here in the Midwest. I’ll do what I can to rest tonight. And tomorrow, pain or no pain, I’m going to get up, find comfortable clothes to wear to work, and see how productive I can be.

The Diagnosis

I remember exactly where I was when the first real fibromyalgia flare hit me. I remember everything I was doing, the time of day, the urgent doctor appointments to get testing done, and most of all I remember the frustration and the roller coaster of hope and devastation as the weeks went on before and just after my diagnosis.

It was an early morning on a weekday in January of 2014 when I first felt the pain. Back then I did company-wide documentation training; a task I had volunteered to do on top of my already busy position. The office campus I worked on had three buildings, the furthest being a quarter of a mile apart. And it was significantly blow freezing outside… we are talking negative 20 degrees Fahrenheit. But me, being the ‘tough’ woman I was, decided to walk to the furthest building anyway to deliver my classroom training, and walk back.

Sure, I had pain regularly before, but I had never thought that it was something like fibromyalgia.  I had just assumed that pain was normal because I was such an active person.  But I think that very cold walk was what lit the match, so to speak.  My body said ‘no more’, and gave me my first all-out fibro flare. About 20 minutes after I got back to my desk, every bone in my body started to ache at once. Every muscle felt weak; like I was going to fall out of my chair because I didn’t have the strength to stay in it. I couldn’t tell if it hurt worse sitting or standing. It hurt to breathe, something I had never encountered before. And it was all so very scary. After several hours without this pain letting up, I was in tears to my husband on the phone about the pain, and I left work early for the first of many doctor appointments.

I fully admit; I had a bit of luck on my side when it came to my actual diagnosis.  Not only is my primary care physician someone who doesn’t mind me doing my outside research. He also happens to be a osteopath and acupuncturist. So when medical test after test came back in the clear, he wasn’t afraid to talk about the possibility that what I had was fibromyalgia. And after his own research was done and when there were no other tests that he could run, that was the diagnosis I was given.

Calls to extended family for support were made; as well as reaching out on Facebook to find other people with this diagnosis. I didn’t know much at first, but I knew I had to find information on how to live with this and quickly. I wasn’t about to give up everything that I had been doing in my life just because I had this disease. I was not about to let a little thing like fibromyalgia ruin my athletic image and all the work I had done to obtain it..

In between tests and calls and doctor appointments, I continued to plan (and expected myself) to keep up the same activity level I had pre-onset. Before that first flare, I was working out for almost two hours daily. I was training for a marathon, studied two different martial arts as well as yoga, and was just starting to look into triathlons and how to train for them. My thought was that I could drop an extra day or two of rest into my regimen and drop to an hour of training on the workout days. (Yeah, that didn’t work.)

I was struggling to put the pieces back together, I finally did get full confirmation that fibromyalgia and chronic fatigue syndrome were exactly what I had. Two weeks after calling my parents with my possible diagnosis, my father told me he knew he had fibromyalgia for years. And I also found several cousins who have it on the maternal side of my family. So much for knowing all of my extended family’s medical history! But even though it was a surprise, it was also a comfort. I wasn’t (totally) out of my mind. Diseases can be congenital, and on my next appointment to the doctor, he fully agreed once he heard the news about the new tidbits of family medical history I had. Fibromyalgia it was.

So armed with the official diagnosis, new Facebook friends, the social media support group and web pages full of details, I started scheming and plotting to get my life back in some semblance of order and strive to finish that black belt, run that (now half) marathon, and stay on top of everything else I had moving.  Of course, it didn’t go very well.  But I think my mindset had to change before I could move much further.  This diagnosis is a steep one, and I didn’t treat it that way at first.  Now I know how hard it is to deal with.  Now I know once you are diagnosed with fibromyalgia and CFS, you need to take the time to sit with and accept the fact that your life is about to change.  Perhaps in certain ways I’m still trying to accept this even now, five years later.

I think, especially with a diagnosis like this, you have to give yourself that time to reflect, understand, and accept that life is going to change.  It won’t be the way you think it will be, but it can still have great moments of happiness and peace.  And it’s perfectly fine if you don’t feel that right away.  You need to do what you have to in order to move forward, and take all the time you need to do so.

I still struggle, but looking back, I have come very far in my understanding of what I now can and cannot do.  It’s still hard, but I learn more about myself every day, and am looking forward to finding out what physical goals I CAN achieve.

The Journey Begins

Hi there!

Welcome to Living a Fibro Life.

This is my second attempt at a blog to log my fibromyalgia. The first one, “A Girl Fighting Fibro,” went down a couple years ago due to multiple reasons, one being the fact that I didn’t know what the hell I was doing trying to fight Fibro in the first place, so my posts really didn’t have much substance.

Now, things are a little different. I think I’m figuring it out, at least little by little. I have more wins, but I also have more loses. But this time those losses are becoming things I can learn from and not be totally devastated by.

I’m moving forward, and I’m feeling stronger, and I think I have more to say. At the very least, my hope is that I’ll provide a space for other people to understand that although it feels like a horrible fight, and it presents lots problems, it can be managed. And maybe, just maybe, something I say here will help someone else not feel so alone, or have hope that they too can move forward. Perhaps someone may even come forward with an idea that I hadn’t thought about before, and I can learn how to better manage this diagnosis.

Either way, welcome again. I’m looking forward to seeing what comes out in this adventure.