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.

Cleaning with Fibromyalgia: Tips and Tricks

After talking about how my husband and I continue to adapt to our ever changing schedules and to the fibromyalgia, I thought I’d also share some of the tricks that I’ve figured out over the years to help keep things clean and comfortable in our home.

Don’t look for perfection
This one is hard for me. I admit my obsessive compulsive tendencies make things even more frustrating at times on this issue. If I happen to walk into the house after a hard days work and feel litter under my bare feet, or happen to catch a whiff of a litter box I can go a little crazy. But I have to come to the realization that our house is not dangerous, bacteria isn’t growing in places it shouldn’t be. Our kitchen stays clean and every room is tidy. If people came over unexpectedly (except for Grandma of course), I can be OK with it now.

Write out a Plan where everyone gets a part
Now that he’s back in the office, my husband has a list of chores, and so do I. I do mine immediately after I get home from work so that they are done quickly and I can rest without worrying about more I have to do that night. My husband does his chores in the early morning before I get up, so we aren’t in each other’s way while we are cleaning. I also picked specific chores for him that I wouldn’t mind how he did them. That settled some of my OCD, and allowed him to feel less like he has someone watching exactly how he does something ready to criticize his every move. I also took on chores that I was having a problem with him doing. It meant taking on more strenuous tasks, but I chose that so that I would feel better overall about how the task was done (there will be no litter on the floor if it’s the last thing I do!!)

Allow the Plan to go out the Window
Even though you spent a significant amount of time in this plan and organized everything, expect there to be days when you just can’t get to everything. You come home, and you have NO energy to do anything but rest, and that is OK. Perhaps the vacuuming gets skipped a week, or the dust starts to get a little thick on the shelves. Make sure the basics are taken care of (dishes, clothes for work, you stay as clean as possible) and leave it for the night. There will come a day when you feel good enough to pick up the chore again.

Put a cleaning station on every floor, and in all the bathrooms
A canister of cleanup wipes can go anywhere. I especially have them in every bathroom in our house. If I’m feeling OK in the morning, I’ll pull one out and wipe the sink after I finish getting ready for work. Toilet bowl cleaner and a brush by every toilet helps as well (I don’t do automatics because I’m afraid an animal will drink the water and get sick). You don’t have to scrub with most toilet bowl cleaners. You simply just leave it covering the bowl for 10-15 minutes and most stains will come right out.

Most of the litter boxes in our home are on the second floor, but I used to keep all of the cleaning products just in the kitchen, which forced me to go up and down the stairs, which caused significant pain on flare up days. Now, I have small boxes of trash bags next to each litter box in the house, along with carpet sprays, paper towels and bleach spray. This allows the litter boxes and any sick-ups or other messes to be cleaned up quickly. And having the trash bag means it is very easy to take it out to the bin outside instead of leaving the resulting smelly mess in the main garbage until that became full.

I didn’t stop there with the cleaning stations. I also now have a vacuum on each floor of my home. Now while this sounds like an expensive tip, it doesn’t have to be. The vacuum upstairs is a refurbished model and it works just as well as the one downstairs. But now I don’t have to hike one upstairs every time I vacuum.

Get the extra help from buying the better products
I just purchased a new floor cleaner from Bissell. It has the spinning mop heads. Now instead of getting on my hands and knees to clean up my kitchen and dining room floor, I can easily get out this gadget and let the spinning mop heads clean the hard floors for me. It saves me significant amounts of time as well as energy, since all I have to do is move the cleaner around on the floor.

I also do my best to use the vacuum cleaner on the hard floors instead of manually sweeping with a broom. It may not work as perfectly well as a broom, but it gets my nemesis-cat-litter off the floor so I don’t feel it underfoot, and that is all that matters.

For years I also refused to purchase the swifter dusters. Why spend extra money on a gadget when dusting spray and a cloth would do the same thing? That might be fine, but when you have fibromyalgia, you have to find easier ways of doing things. I purchased my first swiffer duster about two months ago and I am very happy I did. What once took me a half hour is much faster now, especially because it dusts around the few Knickknacks that keep out.

Figure out what you can live without doing
As much as I loved the feeling of the house after spring cleaning was completed, I no longer plan the extravagant spring cleaning weekends that I used to. Last year all of my closets got the spring cleaning treatment. Two years ago it was a complete and total wipe down of the kitchen. This year, spring cleaning has moved into summer and (maybe even) fall cleaning, with the kitchen, basement and garage again on the cleaning hit list. It’s all going to depend on how I feel.

When it comes to fibromyalgia, you have to let how you feel dictate what you are going to do that day. But that doesn’t mean you can’t figure out ways to get what you really want done. It takes a lot of trial and error, and maybe a little bit of leeway about what doesn’t have to be perfect. And even though it’s a lot of work, and there are still days I have to push myself, I’m still pretty proud of how my home looks.

Cleaning with Fibromyalgia

When my husband and I were dating, we lived in separate states. The first time I decided to come visit him for the weekend, he was so excited he told his father, his brother and his sister. Their first question to him after they heard the news was, “Are you going to clean your house?”

I love my husband, but yes, he has some…bachelor tendencies.

A year later, when I moved states to move in with him, I immediately put us both on a cleaning schedule of the house. Yes, I admit it. I have OCD tendencies. And we had three cats at the time. So I wanted to make sure that we had a clean enough house that should family or friends stop by, they wouldn’t be bombarded with a smell of cat that would chase them out of the house.

Two more cats and a dog later, we live in a house twice the size of the original one, and I had the same OCD tendencies about cleaning it. Carpets were shampooed quarterly. Vacuuming was done weekly. Spring cleaning meant every room gets cleaned top to bottom, moving all furniture and cleaning everything in sight. Yes, that included the basement and garage.

Then the fibro hit, and that all went out the window.

I learned pretty quickly I had one of two choices; let my husband handle the cleaning and accept however he did it as good enough, or beat the crap out of myself to get it done how I wanted it to look, on top of still trying to do the work and my heavy workouts.

The fact that my husband secured a job he could do from his home office helped solidify the decision. But I have to say, letting things go was NOT easy. Many times there were nights I’d be upset about how something was done around the house. Sometimes it was the OCD talking, sometimes it was my fibromyalgia frustration coming out, and sometimes it was because the way he cleaned something really wasn’t the best way to clean it in the first place. But I have to give my husband credit; he supported me through it.

There was a lot of talking. Finally new chore lists were made of what needed to be done daily, weekly and monthly. If I had the energy that night after work I was expected to help (and I did my best to do so). Spring cleaning like I had done before was no more. Instead, a room or two each year that needed it the worst was done in its place. The garage became ‘his’ domain, and was cleaned every couple years. The fridge, cleaned when things were past their date (we dated and labeled EVERYTHING that went in the fridge to help with that).

After the first arrangement I remember having flare ups of pain and laying on the couch watching him clean. I truly tried to ignore every time he did something ‘his way’ instead of what I thought was the ‘right’ way. It got easier over time to do, but I must admit there were times when it was very frustrating.

But I learned, and the house was always presentable enough for friends and family to stop by (well, maybe not as presentable enough for my grandmother to stop in, but that was an entirely too high a level to attain without my help.)

Now things are changing again as my husband went back to the office this year to work. We are still working out chores, and I’m learning once again that if I want something to be done the way I think it should be, I have to be the one to do it. It’s not his fault if it isn’t done the way I do it. And although we still have more talking to do, I think we will make it work.

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.

Leave My Diet Alone!

From time to time I will probably end up coming onto this blog to rant.

This is one of those times.

One of the things that I also hear a lot as a fibromyalgia sufferer is suggestions about my diet, and how if I just removed “X” from my diet, I’d feel so much better. Now most of the people that give this advice are truly well-wishing, and not snake-oil salesmen like I recently blogged about. They truly want to see me feel better, and I appreciate that.

However, many times, the ‘guilt trip’ that comes along with the suggestion is not something that helps, and is not appreciated.

I already do eat healthy enough. But I still allow things in my diet that others would say they are bad. I love chocolate. I drink occasionally, usually wine, and I enjoy having a glass or two with dinner sometimes. And I also do not go to the movie theater to watch a movie without getting at least a small bag of my beloved popcorn.

I am gluten free due to a diagnosis of Celiac disease, and see enough variance in the celiac community to know that everyone has their own version of what is and isn’t the best diet to follow. The problem occurs when those dieting beliefs conflict. And while it seems the gluten free community is more spirited when it comes to debating the best way to go gluten free, I have found the same occasional spirited debate about Fibromyalgia diets. And as different and newer diets come out, I’ve seen more suggestions tossed my way in an effort to spread the best ways to become as pain free as possible. And well meaning as they are, many of these diets that are suggested are still new enough that we don’t know for absolute certain if they will work.

My most recent suggestion came from a well meaning counselor who also deals with fibromyalgia. Her diet is one that excludes all forms of highly processed or added sugar. Now while I am certain this works wonders for her, and even after significant amounts of assurances that ‘it gets easier’ and ‘you will forget what it tastes like’, there is no way in hell I’m going there.

Giving up sugar means giving up brownies. It means giving up doughnuts, M&Ms and Snickers bars. It means checking every label of every premade mix on earth, finding added sugar in some form on the ingredient list, and putting it back on the shelf. It means going to every party or engagement for the rest of your life and treating it like a minefield of delicious temptation that you may or may not get out of unscathed. And yes, even though this works wonderfully for this counselor, and I’m very happy for her to have less pain, there is no immediate evidence that giving up sugar will help the pain of every fibromyalgia sufferer, so I will hold onto my sugar consumption with my sugary, sweet, sticky hands until the day I die.

Another diet I’ve been told will do wonders is the FODMAP diet. And I’ll admit, I’ve gone on this one sometimes when IBS issues start really affecting my activity levels. But the thought of going on FODMAP for the rest of my life to ensure my fibromyalgia pain stays low permanently fills me with dread. No more rice? No more cheeses, Brussels sprouts or baked goods, watermelon in the summer time or mushrooms? That is just plain nuts (some of which I couldn’t have either).

Now some of you might be reading this wondering why I won’t do EVERYTHING I can to keep my fibromyalgia pain low. And the answer is I do. I exercise, limit my caloric intake, eat low carb on a regular basis, stay gluten free and don’t eat too many things that don’t have at least some sort of nutritional value. The fact is, going sugar free, doing FODMAP, Whole 30, paleo or any other omission diet will not drop the pain levels for everyone. And there will still be flareups, especially when you accidentally go off the diet.

Doing an omission diet is not a cure. Instead, it’s really a trade-off. It’s a chance at having less pain in exchange for not eating those wonderful things that make life a little easier from time to time. That chance is something some Fibro sufferers want to take. And if it works for them, awesome! It isn’t worth it to me as I’m already doing a significant amount to lower my pain now without adding more restrictions in my diet.

So as long as I do my best to listen to my body and what it does and doesn’t want, I’ll still have an M&M snack (especially on high pain days). I’ll stop and pick up a fast-food custard as a treat after a long day of errand running, or do a Saturday morning adventure with my husband to find freshly made gluten-free doughnuts. I’ll do those things because they are worth it to me for the treat itself, the company and as a reward for keeping moving.

And if my body ever changes to the point where those things do hurt me on a regular basis, then I’ll have to revisit the idea of omitting more from my diet. But for now, I enjoy them while I can, and you can keep your FODMAP, Sugar Free, Paleo, Keto, cardboard-tasting stuff.

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.