What We Need You To Know

I wake up every morning in pain. However, today’s pain seemed to be especially bad; probably because of the cold front that came through and the fact that I dared to work in my garden pulling weeds the day before. My fingers were stuck in a curled position that made turning off my alarm an interesting experience. In bracing for getting up, I took in a deep breath, and quickly regretted it as my chest muscles decided to protest the extensive quantity air in my lungs.

I knew from that point on, it was going to be a bad pain day.

After mentally cheering myself on to put my feet on the floor and stand, I finally was able to feel some of that pain subside as I headed for the bathroom to wash up. I remember being grateful that I had no face-to-face meetings scheduled for the day, so that meant comfortable clothing and no makeup would be acceptable. Running a brush through my hair as many times as I could withstand the pain from holding my arm up above my shoulder completed my fashion choices for the day,

Work and movement was at a bare minimum today. And the same rest-as-much-as-possible schedule will probably be the theme for the next day or two while I figure out what crime I have committed against my muscles for them to behave this way. I must have done something horrible, because even though I did the best I could to calm this flare down, pain levels have escalated to the point where Im uncertain if I will get a decent sleep tonight.

If it sounds like I’m whining, I’m not. If you read this and think I’m simply trying to get attention, I can assure you that isn’t the case, either. What I am trying to say is that fibromyalgia is a beast that no one but the sufferer truly understands. This beast not only screws with every system in your body, but it also exacerbates any condition that you ever suffered. Pull a muscle? Fibromyalgia will include lots of extra pain along with that muscle’s recovery. Attempt to do something out of your normal routine? There’s a flare for that too. Hell, I’ve had flareups of pain from a hard sneeze before.

The most serious, most important point I’m trying to make here is that someone diagnosed with fibromyalgia will always be in some sort of pain. And I mean ALWAYS. That pain will alway try to break down your spirit, your will, and your self worth very quickly. And those breakdowns happen quickly, especially when that pain impedes day to day tasks, like it did today for me. Listen – this pain is real, and the pain can be very dangerous to those of us with histories of anxiety and depression.

Tonight, I’m very lucky to know I have a support network that I can lean on (and I just did). But there are quite a few people out there that may not have that network. Instead, they may have people around them that don’t think they have the disease, are faking it, or are just thinking that they are blowing their pain out of proportion. Trust me, they aren’t.

There is a reason why there is a high rate of suicide within groups of people with fibromyalgia. I will say it from experience. This pain CAN get to be too much, and when that happens, there is no way out from thinking things are so bad that you would do anything to just end the pain. Trust me on this one; It’s very, very hard to stop yourself from thinking that way when every shallow breath you dare to take makes your ribs feel like they are on fire..

So just do me a favor. If you know someone with fibromyalgia, check on them a little more often. If they start speaking to you about their pain, hold space for them. And by holding space, I don’t mean to try to explain how your pain is just as extreme as theirs. Just listen to them. Help them feel heard and understood. Let them know that you recognize the severity of the pain and of the situation they are in. Maybe even help to get them comfortable by bringing them food or getting them to a place where they can rest. These can be truly lifesavers to someone with fibromyalgia.

Tonight, with the prayers and thoughts of my support network, I will rest with my pillows and blankets I crocheted just for this particular situation. I recognize that my spirit is starting to bend from the weight of this pain, so I’ve called in extra support, and I’m going to do all I can tonight to feel better.

But regardless of how much I hurt, I wanted to speak these truths about the pain. Not just for me, to hold space for myself, but for others who have friends and family who don’t really understand what its like to have fibromyalgia. And if this post reaches one person and makes them think about this disease in a new light, well, it will be worth the pain on my arms, hands and fingers to type it out.

Thanks for reading this far. Now go hold space for a friend with a chronic illness.

Be Your Own Advocate

A chronic pain scale

Unfortunately there are some certainties in this life that sufferers of chronic illness have to face. From facing employers who do not have equitable work policies to dealing with healthcare providers who just really don’t. know what is going on with our bodies, it’s enough to want to make you cry. I know I have at times.

But it’s because we have these things to contend with that makes what I am about to say even more important. Yes, there will feel like there are times when we are the victim of our illnesses, and we have to allow ourselves to grieve for things that are no longer open to us. But then, regardless of whether or not we have a caregiver in our lives, we must become our own advocate and learn to fight for the things that we know we need.

This doesn’t mean we are going to get everything we advocate for, But with enough thought, data collection and learning to understand what you can and cannot get, you can be surprised at what can go your way.

Understanding Your Energy Use

For the first several years of my illness, I still tried to push myself to do some of the things that I had done before the full onset of my symptoms. And while I did have some accomplishments, most of them put me in bed for days afterward. I realized that some of my issue was that I had no idea what I was capable of; I simply pushed through any pain and uncomfortable, thinking I it wouldn’t cause any repercussions. I was wrong.

Figuring out what I could and couldn’t do took a lot of time. And I’m still doing it, 7 years later. I had to start from the very beginning by giving myself time to do the bare minimum; work, food, hygiene and some cleaning of the house, and basic cooking. After awhile, I realized that I did have some energy for other things on certain days, so I started scheduling a little more on those days. But I still kept at least one day a week to do the bare minimum (and still do). By tuning into my body, I was able to better understand what energy I needed, where I could become more efficient and where I needed to spend more time. And I also figured out the warning signs of when I was about to put myself into a flare, which was crucial to understand.

Get your Medical Information Documented

This sounds like it’s a no-brainer, but I’m still surprised at how much I think I’ll remember about my medications, only to not be able to give that information to a healthcare professional when asked. I now carry a list of my meds in my bullet journal so that it can be pulled out when needed.

But medications aren’t the only medical information we should be tracking. If we can’t effectively communicate things like pain types and pain levels to healthcare professionals, we will never be able to allow them to help us properly. I will never forget the times when I worked in an ER triage and saw a nurse’s frustration at working with a pain patient. She she would ask how bad something hurt on a scale of 1 to 10, many patients would simply say 11. While that response gives adequate information about how upset the patient is at their own pain, it doesn’t do much to help someone understand what they are going through. A pain scale with descriptions can be very helpful in that situation, and can be printed out and kept with your list of medications. That way you can read the description along with the number, which allows more understanding about the state you are in.

Prepare to be Your Own Caregiver

I wish everyone who has chronic illness the best caregivers they can have. Really. Although I’m very lucky to have a good caregiver and can usually effectively communicate my needs to him, there are many times when the level of pain that I’m at doesn’t allow me to tell him what I need, or he’s in the middle of work or possibly not at home when I’m flaring. It’s in the cases where he’s not available or when I can’t tell him that I need something that I have to fight my body to get whatever it is that I need or want to be more comfortable. And I don’t wish that fight on anyone.

But, the fight to take care of yourself in flare ups does happen. And because it does, being prepared is huge. To get prepared, I thought about my last flare up and thought about what I used. I needed extra blankets and pillows, wanted a bag of popcorn for comfort, and wanted to watch some mindless TV shows. I now have extra blankets and pillows downstairs as well as up, have saved some seasons of shows for flares, and I also have a stash of medications near my bed with a bottle of water just in case I can’t make it downstairs. That way it won’t be so hard to fight to get the things I need should the hubby be away.

I know I’ve just scratched the surface here. There are many other things that you can do to make things easier on yourself when medical issues rear their ugly head, and my plan is to talk more about this soon. But I think the biggest thing that I want to get across, especially to those who may not feel like they have the support that they need, is to be that advocate for yourself. Know what your limits are. Have things written down and available in a purse or bag. Keep things ready when flareups strike. I know for many of us thinking of ourselves is hard to do, especially when we have jobs, families and homes to take care of. But we cannot take care of those things if we don’t put in the time to take care of ourselves first. And the sooner we learn this lesson, the sooner we can work to get back to some semblance of a normal life.

Living with Fibro: About that Exercise Stuff…

In my last post, I talked about all of the exercise that I was trying to do with fibromyalgia. I’ll admit, it was a lot. And I also admit, I didn’t do much of it without a struggle.

But the struggle became too much.

First, let me come clean. There was one part of my exercise routine that I didn’t mention in my previous post. I do a five minutes stretching routine every day. It is one designed by Joe Yoon from his better stretching book, and hits a majority of the muscle groups all at once. I also add a wide legged forward bend with an arm stretch into the mix to help keep in place two pesky ribs that like to cause extra pain. The entire routine is about 6 minutes long. It’s quick, easy, and doesn’t place extra strain on any joints. So it shouldn’t be a big deal to do it, right?

Well, not if you have fibromyalgia.

The extra six minutes of stretching means that is less energy I have for my day at work, any chores that I have to do throughout the day or to help me deal with any stressful issues that come up. It also means that I don’t have that extra energy for walks in the cold or to do strength training. What I didn’t realize is that 6 minutes meant that I was starting to borrow energy from the next day in order to get through the current day. I was making a personal energy deficit 6 minutes at a time. This is the type of deficit that only 16 hours in bed would be the only thing to help me get out of.

I didn’t get to the point of 16 hours in bed at least (only 13), but I got the message. If I really wanted to keep 6 minutes of daily stretching in my routine, something had to give. So I chose to get rid of my weekly elliptical training. I also chose not going out in the freezing cold to walk my dog. My dog isn’t happy (and neither is the hubby since now I pester him to walk her), but I really have no other choice. I have to keep moving or else I will tighten up to the point where I’m going to need to rely on my husband a lot more than I do now because I won’t be able to move very easily. Further, I have to choose what is the best thing to spend my energy on, and staying indoors won out.

So I am writing about my mistake here in the hopes that it helps others understand. At the very least, if you get anything out of this post, please understand this: Just because someone with fibromyalgia can do things one week, it doesn’t mean they can do the exact same routine the next. They may have to think on other factors like weather, stress levels, current environment, what specific chores are needed, what tasks are needed at work and many other things to ensure they get done what they need to do. In fact, they may have to totally rearrange what their schedule will look like based on all of those factors, much like I did here. This isn’t a disease that acts a certain, routine way. Instead, it literally is waging war on you. Depending on what you do and what your environment looks like, you can win against it, or it could win against you, and the battles shift very quickly between those two opposites.

So what am I going to do now? Since I feel the running and strength training on the TRX are most important, I have decided to cut all work on the elliptical for now. That energy can then be utilized for the full body stretching. And as much as I really miss the walking trails near my home, I will be staying in for the next week and a half at least. All my walks will be on the treadmill. I can’t spend the energy both dealing with the cold, fighting ice and walking.

I am hoping that I won’t have to do any more changes to my exercise. The big test to see whether that is true or not is this Sunday morning; my planned 5K on the treadmill. If I can get through it without pain, I’ll know that I’m on the right track. If I can’t, then I will need to cut something else back in my exercises, or reformat my strength training. And, I’ll have to honestly answer the same question that brings fear to my heart; ‘Am I simply still trying to do too much?’

While the question I may have to ask is scary, I have still learned something through this process. I’ve learned to listen more deeply to my body to understand the difference between having sore muscles, and having your muscles so tired that you aren’t healing properly between workouts. It’s a more important situation that I originally gave it credit for. Here’s to hoping I don’t make the same mistake again.

But that being said, I’m not going to stop dreaming about being an athlete, at least in some form.

Reintegration Into A Changed World

Since my last post, things have been dicey. Some days I’ve done really well while others have gone to total shit. It seems like there has been no in-between, either. I’m either really good, or starting to wonder to my husband if I need to get my primary care physician involved.

Still, in the past two months, I have accomplishments to be proud of. I haven’t gained a huge amount of weight, even though I’m a stress eater. My husband and I have done a spring cleaning of the entire house. I have my gardens planted, and have setup a new workout space that I’m looking forward to using in the coming days. I’m proud of these things because they mean overall I’m doing just a little bit more than just existing in these quarantined times.

But just as I’m starting to get used to this new quarantined normal, the world changed again. This time the changes smell of chaos and revolution, pain, unrest and downright white-hot anger.

I’m not going to discuss the specifics here as these emotions and the reasons behind them are overflowing out of every possible electronic and paper outlet in the world. Everyone feels them, regardless of whether or not they choose to believe it. Not only is everyone in the world feeling these emotions, they are changing their lives because of them.

With the fibromyalgia and hypersensitivity issues I have, the world has become a very, very painful place. Any sliver of emotion from any source easily becomes my own, unless I happen to have enough mental energy that day to stop it. But, because I am already in a reduced energy state thanks to the quarantine and virus, stopping those emotions from invading my body is becoming much harder each day. Some days I become totally powerless, and everything comes flooding in so much that I can’t even think straight anymore. Meanwhile, the fibromyalgia has accepted this new energy and uses it to create more pain and problems. This means I now have to expend more energy to deal with the fibromyalgia symptoms, which then means I don’t have enough to protect myself from the emotions of the world, which means the fibro gets worse. And around I go in this horrible cycle until I either muster enough strength to put a stop to it, or I start considering other ways to get out of the damn thing.

But there are even more things that stick in my mind about the current environment. Right now, the entire world is getting involved in the outrage and are trying to bring change through revolution. And while that is going on, I sit here in my little home office, typing this and being upset with myself that I cannot get involved. I can’t go out to a rally. And although in my head I’ve come up with a thousand and one different things I could say on multiple social media platforms to show support for the communities that have been hit so hard from this brutality, I’ve rarely got the energy to even attempt to open my computer. And even considering doing so sends me wheeling toward a panic attack.

I cannot even begin to start explaining how hard this is for me. Thinking about what I could do to participate causes painful twists in my gut, tears to form in my eyes and I start to lose all energy in my limbs because of the overall pain growing in my body. The more thoughts on participation I have, the more the pain continues to grow to the point where I’m not sure I’m even going to make it to the closest chair or my bedroom to lie down. In the lucid moments I do understand my body is truly sick, that these are real symptoms and I DO need to take care of myself. But when I’m not lucid, all my mind tells me is that I’m faking to get out of participating; that just sending donations, prayers and having hard conversations with family who decide to bring the situation up to me is not enough anymore. My mind says I’m sitting on the sideline and my inaction is simply causing things to be worse. And trying to look away for a fresh perspective simply means my privilege is showing, because there are others whose whole world is in turmoil and they don’t have any way of escape.

During this revolution, my company has started the process to open its doors and have workers come back into the office. So with this new transition looming I remain in what I can best describe as a state of shock. Logically, I know I’ve done everything I can during this quarantine period, and I’ve even gained some ground on things that needed done around the house. As far as this revolution, I’ve sent donations where I could, and signed up with groups that will help funnel that money where it is the most needed. And because my company is opening back up, I need to start focusing energy back to my job. So when I can stop my mind from yelling at me, I know I’ve done everything I can, because anything I do still needs to be done in the perspective of my own health and wellbeing. Posts like the one below I saw on Facebook today help. I’m grateful I saw it, because that is the inspiration for why I have written all of this out here on this blog. I AM doing everything I can, and that gives me some comfort. I just wish others would understand and acknowledge it.

Image originally posted by author Christopher Penczak

I truly hope that those who are screaming the loudest about people being complacent because they don’t understand why we are idle realize that those screams hit a nerve with those of us who are on the same side as they are. There are those of us here who could very well lose our lives by trying to take excessive action. Our bodies and minds just can’t handle what we wish we could do right now.

I have no doubt that I’m not alone; that there are probably thousands out there right in the same boat as I am. And I’m sure that I’m also not alone hoping that I am indeed making some sort of difference. But when the only things that you can truly do is to give thoughts and prayers, you simply have to hope that they haven’t been diluted so much by those that offer them in false sympathy that they don’t mean anything anymore.

Things People With Fibro Don’t Want to Hear (And Some They Do).

Through the years I’ve heard a lot of people attempt to sympathize or relate to fibro sufferers when they are flaring. And while many of these sayings were spoken with good intentions, they end up hurting instead.

Remember, Fibromyalgia is an indeterminate diagnosis, so many people who have the disease have to fight to simply prove that they are disabled in the first place; many times even fighting their own thoughts because we have been so shamed about claiming a ‘fake’ illness.

So for this post, I want to list things I’ve heard over the years and why I don’t want to hear them. And I’ll add some encouraging things too, just to give some ideas of things that make me feel supported or loved.

“But you don’t look sick!”
Ahh, the classic saying that is not only said about Fibro, but also MCAS, POTS, EDS and many other illnesses. Just because I don’t look sick doesn’t mean that I’m not. And if this is meant as a compliment, it’s doing a pretty bad job of being one. Because what you are really saying is I’m doing a really good job hiding being sick.

The truth is that those of us who have these illnesses don’t want to have them.  We want to be able to do things we like and not need additional aids or help getting day to day tasks done.  But we can’t always be independent.  And saying we look like we should be just furthers the pain and frustration that we can hide very well that which makes us sick.

“Well, I have <fill in the blank>”
If you are trying to sympathize by sharing an illness you have, you aren’t doing a good job of sympathizing. The last two times I heard this statement, it was someone telling me they have arthritic hands, and the second was a headache (NOT a Migraine…a headache). I can, without a doubt, tell you that having a fibromyalgia flare up is worse than either of these two. When you can’t walk up the stairs, drive a car or barely turn a page in a book because your entire arm hurts, then we might be able to compare pain. Not to mention the fact that a fibromyalgia flare lasts much, much longer than a simple headache can.

“You know, many others feel the same way as you.”
This one really hurt, especially because it was someone that I looked up to at one time saying it. This person didn’t know anything about fibromyalgia, and my attempts to even explain it to them were useless.

But even though many people suffer from fibromyalgia, you cannot compare chronic pain with this disease. Let someone with fibromyalgia compare pain with another sufferer. Don’t throw everyone in the same boat. We all have different thresholds of pain levels, we all have different flare triggers, and different sites of pain.  Chronic pain is bad, but it is different in intensity as well as significantly different areas being targeted by pain.  A Chronic pain patient could have Chronic back pain, ankle pain, or arm pain.  In Fibromyalgia, the pain is constant, and it’s everywhere in your body.

Ultimately, everyone is unique, and everyone must be allowed to express their pain.  Trying to simply group fibro patients in with Chronic pain patients (or other maladies) doesn’t do any of us justice. Everyone isn’t me, and everyone isn’t having pain right now. Realize too, that this isn’t about feeling special. It’s about feeling heard and understood; something fibro sufferers rarely are.

“You are going through a flare? So this really hurts?” <Smacks my arm>
Yep! This happened. And by a family member. He wasn’t expecting me to break into tears after hitting me either. The lesson here – If a fibro sufferer says something hurts, DO NOT test that. I think it’s one of the absolute worst things you can do.

And just for the record, I did get him back a couple of months later – in the martial art I studied, I learned where some very  painful pressure points are. He got a nice (touch controlled) punch to a rib pressure point that took his breath away.

So instead of saying something above, how about saying one of these things, instead?

“I’m sorry you are hurting. Would <this> help?”
Just the acknowledgement from someone that they see me in pain is a comfort. Being willing to help with getting a door, finding a chair to sit in or a place to rest for a moment is huge. It doesn’t have to be much, but it makes us feel supported, which can actually help us relax and maybe even lessen the pain level slightly.

“That sounds brutal! Tell her I’m thinking about her.”
This was said by the same person that made the ‘others feel the same way’ comment above. The context was my husband telling the person that I would not make an engagement because I was in so much pain. The person recognized I was in pain and using the term ‘brutal’ in his response actually meant a lot because they validated that I really WAS in that large amount of pain and had no chance of making the event.

“I am glad to see you/thank you for coming out”
Many times fibro sufferers can’t make events or engagements because of the pain levels. We aren’t trying to simply cancel all the time, we just don’t know what our pain levels are going to be like. Sometimes the fact that we made it at all is astonishing. So if we made the effort, it might because we are pushing through just to see you. Too many people take it for granted that someone with fibro can just go anywhere. That isn’t always the case.

Overall, just recognizing that yes, fibromyalgia IS a disease and causes widespread pain and that we who have it CAN be disabled is huge. Keep that in mind when you are talking to someone with the disease, and you can help us feel supported and not feel like so much a burden.

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 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.

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.