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: Exercise

Since I am currently altering my own exercise routine, I thought it might be a good time to talk a bit about exercising with fibromyalgia. I’m dedicating a post to exercise because it is very important that people with fibromyalgia move every day in some shape or fashion. If we don’t move, even for a day or two, our muscles will start to feel thick and gummy. Go three or more days without movement and our muscles will feel rigid to the point where we lose range of motion and strength, which leads to an increase in pain. Yes, it is a true ‘use it or lose it’ scenario.

Endurance and Current Fitness Levels

Before I talk about my own routine, I want to say that the level of exercise that I strive for is my choice. Before the fibromyalgia, I was an athlete. I did martial arts, I was a runner and a dedicated yogi. Therefore I believe that because I had a high level of fitness back then, I can maintain a higher level of exercise than others with fibromyalgia. It isn’t that someone who has fibro cannot get to the same level of fitness I have, I’m simply saying the ‘route’ to get here and their overall exercise regimen would be significantly different than mine.

Regardless of the level of fitness I have, I still have to be choosy about what types of exercise I’m doing, thanks to fibromyalgia’s limit on my endurance levels. Running is currently my choice for what I burn the most energy on. I love being able to run a 5K, and I’m not ready to give that up. So I’ve accepted the fact that I have chosen running as my main exercise, for now. I can’t do that and do other extended work in another sport. That means advanced yoga asanas like handstands, extended strength training sessions, or any type of martial arts practice are all out unless I stop running. I am trying to build additional endurance so I can do more, but so far, I’m not having much luck.

I am bringing the endurance issue up to remind non-sufferers that people who have fibromyalgia have a very specific level of energy and endurance they can use each day. It doesn’t matter what fitness level you are at; you still have to choose what you spend that energy on. I choose to use my energy by doing more exercise (as I have no kids and a desk job), another fibro sufferer may have to use their energy in a work position where they must be more active, drive a longer commute distance, or tend to young children. I am absolutely certain that every fibro sufferer wants to do more than they currently are, we just can’t because we are limited by the disease.

My Current Exercise Routine

My current schedule is a 5K run on the weekends, usually on Sundays as I don’t have much else going on during those days and can sit for most of the day afterward. I also try to walk at least 30 minutes 4 times a week. This isn’t a fast walk, just something that can keep my heart rate up for a general period of time. I do 30 minutes on an elliptical machine once a week, and a 15 minute routine with a strength training system called TRX once a week on a day I’m walking. All of that together means I’m exercising 6 days a week. If I don’t make 6 days of exercise, I don’t beat myself up. It is all dependent on how my body is feeling, and I’d rather err on the side of caution than cause a flareup of pain. It took me 3 months of work to get this current level of exercise into my regimen and not cause a flare. And it still isn’t without a tradeoff. About 6 or 7 in the evening on most days, I’m done. Other than crocheting, watching TV or reading, I can’t do any other activity. So the husband gets to cook, drive us someplace if we have something scheduled, or do any necessary cleaning. He’s OK with that (so far).

Currently, my own personal goals are to try to extend the 5K into a 4 mile run and include an extra 20 minute martial art practice into my regimen. That isn’t going too well. On weeks where I’m feeling awesome, I can get the martial art practice in, but not the extra running. But I’m still going to continue to try for another month or two. Regardless of what high impact work I’m doing, for those few moments, I feel like an athlete again, and that means a great deal to me.

My Exercise Recommendations for Fibro Sufferers – Bare Minimum

For the average person with fibromyalgia/CFS who doesn’t have any other underlying conditions, I highly recommend at the bare minimum some sort of stretching routine to keep the range of motion that you currently have. If you haven’t been doing anything, it’s going to be hard to get started, and I’m not going to lie, it will hurt worse for the first week or two, but the extra pain that you will receive from the exercise will be the type of pain can be dulled by icing, over the counter pain relievers or with muscle ointments. And even with the extra pain, to me it’s worth it. I’ve found that even 4 minutes of gentle stretching a day will allow you to start feeling more comfortable overall, and possibly reduce the amount of daily pain.

I do have some suggestions for starting out. I personally like Joe Yoon’s Better Stretching as a starter book as the exercises are very easy, yet effective. He also has a great Instagram presence and demonstrates many of the moves in the book there (or you can buy his application Better Stretching if you want a more structured regimen). Other options include Miranda Esmonde-White’s Essentrics program, which was created out of the “Classical Stretch” TV Program on PBS (which I believe is still available at some libraries). She also has written a book called Forever Painless, which is a good introduction to both Essentrics and the TV program, however, if you choose the online Essentrics program or TV show to try first, realize it moves faster than Joe’s videos do.

Of course, this being the beginning of the new year, many people are seeing advertisements for dynamic stretching programs like Pvolve, Kalisa Fit, GMB Fitness, ALO/Barre Strong and Functional Patterns. Pvolve, GMB, ALO and Functional Patterns require extra equipment, so those are a ‘no’ for me, as I’m not going to make an investment in equipment if I don’t know up front whether a program can be adapted for a fibromyalgia sufferer. Kalisa Fit is nice, but even I had a struggle just getting through her 10 minute warmup. I also didn’t see any way to modify some of the moves, so although the stretching exercises were very good, I could see someone getting discouraged very quickly (especially with some of the leg and hip stretches that could hyper extend the knees or cause significant weight on the joint).

Yoga is also another option, but it is very hard to find any yoga apps that show modifications of poses, which is a huge need in the fibromyalgia community. We just can’t make our poses look like the ones portrayed by teachers and social media personalities and we shouldn’t try. But there are some options out there that I think are good. If you are brand new, I suggest starting with the book Yoga for Pain Relief by Kelly McGonigal. Yes, the poses look very simple, but they are all very effective when done regularly. Or, find a yoga teacher who works with chronic pain sufferers and who will help modify the poses for you. I will say it again as it was a sticking point for me at first – yes, the poses with modifications may look over-simplified compared to what you would see a more experienced practitioner do. (In fact, my own mother refuses to do yoga because she doesn’t think simplified poses like cat/cow do anything.) But they are still very effective at providing the same type of benefit as the ‘professional’ looking pose, and this is a fact I really wish the yogic community would express more often.

My Exercise Recommendations – Moving Forward

A stretching routine will ensure you keep your range of motion and lower your pain regimen. However, I did notice an increase in my endurance and energy by adding a gentle, low impact exercise like walking to my exercise regime. This is why I also recommend starting some sort of small exercise habit if at all possible.

If you want to start a walking regimen, besides getting a good shoe, I would recommend starting slowly; maybe 15-20 minutes three times a day. You don’t have to power walk to get started. Even walking your dog (which is what I do three out of 4 times I’m walking a week) is beneficial. And the dog will love it.

If you are ready to add more time, the general rule of thumb I’ve heard is to add 10% more time or mileage to your walking regime each week. I personally feel for those of us with fibromyalgia, that’s too much. Instead, I recommend adding 5% more time or mileage every 2 to 3 weeks. Anything more than that will cause additional stress and pain which will force you to do too much in one day, and that leaves an opening for a huge flareup of pain. I learned this ratio by my own trial and error; I trained for a half marathon using the 10% method and ended up losing the entire last week of training as well as ended up being sick from a flare of pain for an additional week. So I changed to the 5% addition and have found that it works well for both my running and walking routines.

I recognize that this can be looked at as circular reasoning; here I am suggesting something that will cause extra pain for a fibromyalgia sufferer in order to reduce the pain. This is what doctors don’t realize when they recommend fibromyalgia sufferers exercise. There WILL be pain. It WILL hurt. And if I may be blunt, it fucking sucks that it hurts so much. I simply want to be able to move and do the things I love without the pain. But for fibro sufferers it’s a trade off. If you want to do more, you have to find that balance of how much pain you are willing to put up with in order to get to the chosen level of activity. If there is one thing about this disease that hurts the worst (and the one I’ve cried about the most), it’s this fact.

Regardless of my own personal goals and venting, my hope is that readers of this post realize that it only takes a little bit of exercise will go a long way to helping sufferers deal with the disease. And since there is no cost effective drug, medical device or therapy that can take out this disease, finding any little bit of comfort to me is worth trying.

Living with Fibro: Sleep

It occurred to me that when people ask what fibromyalgia is like, the answers that they receive can be very general, pending on how the person afflicted with the disease is feeling that day. That person may or may not start to detail the challenges that we face on a daily basis. So because of this, I’d like to start 2021 out with a series of blog posts that describe how a typical day in the life of a fibromyalgia/CFS sufferer would look. In this first post, I’d like to discuss what a typical night of sleep is for me, as well as talk about how it is for me to get up in the morning. When reading, keep in mind that although my story is typical, it is not going to be exactly the same for all fibro sufferers, especially those who have additional fibro symptoms or other illnesses to contend with on top of the fibromyalgia.

Prepping for Bed
I know it sounds funny, but yes, I do ‘prep’ for bed. Depending on whether or not the fibromyalgia is flaring, and what the time of year it is, I have several go-to pajamas I can use. I have joggers (sweat pants with elastic cuffs at the ankles), and 3 nightgowns that I either wear with or without the joggers. All of the items are the softest ones that I can find, with the gowns being various sizes so that if I have tactile issues, I can pick one that is more fitted so that I’m not dealing with a wrinkle that wakes me up in the middle of the night.

Having multiple pillows and blankets are a must. Right now I get by with having 2 full size pillows and three smaller ones. The larger are for my head and in case I need to have pillows between my knees while laying on my side, and the smaller ones are to ‘brace’ my body should I have to deal with extra pressure from the mattress on one of my joints. I usually start the night using only one or two pillows, but may end up using more should a sharp pain in a joint jolts me awake.

Finally, I have a variety of foam earplugs in my bedside drawer. the slightest noise from my husband or the dog will also wake me up, so the earplugs are a must. Unfortunately I can’t use them all the time as my ears get sore from them, but when I can use them, they are a Godsend.

Sleeping Through the Night
The nights go one of three ways: Either I sleep like a log, I toss and turn the entire night, or it’s a combination of the two. If I’m sleeping like a log, it means that I probably took some pain medication in order to allow my body to sleep. And while I prefer to sleep deeply like this, it also has it’s consequences (as you will see later).

At least one night a week I toss and turn the entire night, regardless of whether or not I have taken medication. It’s these nights that are the hardest, because it could be caused by a multitude of reasons. I do toss and turn for some general reasons, like stuff going on in my head, being sick, dealing with allergies, having a flare or the hubby needing to get up or change positions. However, thanks to fibromyalgia, I can also toss and turn for some really crazy reasons. It could be because the fitted sheet isn’t properly on the mattress, and I’m laying on a wrinkle from the sheet or my pajamas. Last night, there were even wrinkles on the sheet that was laying on top of my feet and legs, and the skin in those areas started to hurt. I’ve been jolted awake by my legs and arms going to sleep, even though I was sleeping on my back with my arms at my sides. I’ve also been jolted awake because of the elastic in my underwear has become uncomfortable. Other reasons I could wake up include a new pressure point from my fingers, hips, knees and feet laying a certain way. I could even start to have a flare up due to my body being too cold or hot, or because of a weather change. Regardless of the reason, during these these nights I usually only get 3 or 4 hours of sleep.

A majority of nights are mixed. The first 3-4 hours are where I’ll sleep like the dead. Then something will wake me up, and then I’m tossing and turning for the rest of the night. To deal with this tossing and turning, I have 5 different medications at my bedside along with some water. Sometimes I can take a medication and go back to bed, but if there are times when multiple issues are keeping me awake, I have to choose the worst offender and take the medication for that since some of these meds interact and make one or the other ineffective.

Mornings are the times when I see the most difference in myself from when I didn’t have fibromyalgia and now. The biggest difference is that every day is much more of a struggle to get up than it used to be. If I have slept very deeply, I will wake up and not be in pain for the first moment or two upon waking. But the minute I move, the pain becomes excruciating. Every joint, bone and muscle scream at me all at once because I dare trying to wake them from such a deep sleep. The more I toss and turn at night, the less excruciating the pain will be when I wake up. Yes, you read that right, and the issue is very common in fibromyalgia sufferers. The reason it hurts worse when I’m in a deep sleep is that my muscles stay in one position for a prolonged period of time. The longer they stay immobile, the harder it is to move them out of that position. This is one reason why shavasana (the ending corpse pose in yoga) is so hard to get out of after a longer yoga session.

After some of the first pain of the morning subsides and I have gained some movement, I face the trickiest part of the morning, which is taking off the blankets, standing and walking the first few steps. I try to be gentle with myself while I do this piece, but I must confess that it’s a fight each and every morning with myself due to the pain, because it’s multiple types of pain all at once. The difference in temperature from the removal of covers causes tactile pain, the swinging my legs off the side of the bed hurts my muscles and joints, and finally putting weight on my feet makes me feel like they ‘scream’ as they start to bear weight, and it makes it hard not to cuss for those first several steps.

This wave of morning pain will last about 10 minutes. Sometimes it’s longer should the weather be really cold, or if the ceiling fan in my bedroom is on. It is because of this last round of morning pain that I no longer schedule any exercise in the mornings. I also find that having to do any immediate decision making (like picking out clothes) or putting together any collection of items that I need for the day is incredibly difficult. So I try to get all of that done the night before if at all possible. I also don’t allow my husband to attempt to wake me anymore. Even though he means well, I’m afraid I’ll simply scream and cuss at him, and he doesn’t deserve that treatment, regardless of how much pain I’m in.

So that is as far as I want to discuss for this post. I hope that there will be those that read it and realize that there truly is a difference between fibromyalgia and someone with the occasional pain. One of the things that bothers me a great deal is someone without fibromyalgia trying to compare my pain with their arthritic hands, bum knee or the pain they still have from an old joint injury. They are not one and the same. Everything I’ve written about up here is something I have to prepare and deal with almost every damn day. I’m not saying your pain isn’t something that needs to be considered, but ultimately, this disease is so much more complex than people realize, and your bum knee or your old injury doesn’t compare.

For those reading this who don’t have the disease, I think the best advice I can give to you when dealing with a fibro sufferer is to give them space to talk about their pain. Don’t compare it with your own, simply listen to them and ask them what they need. Ask them if you can help. Just because we may look like we are feeling OK doesn’t mean that we truly are. And even if we don’t need the help at the time, we will feel we are being heard and supported – something most fibro sufferers desperately need.

Thanks for reading.

Looking Back and Moving Forward

It’s hard for me to look at my last post and remember that it was only several months ago that I wrote it. It seems instead like it was years ago. And while I am glad some of the things I had concerns about are now resolved (or are on the way to being resolved), I recognize that we aren’t out of the woods yet.

If you are anything like me, during this long summer and into fall, you may have some new symptoms from the chronic illnesses popping up due to the stress. I’m sure that this isn’t unusual, given the circumstances. And I think that fact needs to be shouted from the rooftops right now. Because again, if you are like me, you’ve been berating yourself for not being able to handle things on a day to day basis like you used to. But it’s OK we didn’t know that then, as long as we acknowledge it now.

And again, like me, I’m sure there were times that you were so overwhelmed that all you could do is grab the nearest comfort food (anything crunchy, warm and/or salty for me), head for the couch, grab the remote and find the first food-based reality competition you haven’t already seen to space out and feed your face.

It finally took my taking a breath and looking back on my personal behavior to realize that what I was doing was OK. It might have not been the best coping mechanism, but it was the only one that helped at times. I wasn’t doing significant damage to myself, and while I did portion out things the best I could at that time. And I got through it. I got through the anxiety-laden days of work, seeing the inequality and environmental issues loud and clear, being angry at myself for not doing more, and trying to keep myself safe from the virus all while I’m getting headlines from every media outlet screaming about shit being wrong, and dealing with family who choose to believe much differently than I did.

So now, I think we need to do two things. First, we need to take a moment to celebrate. I survived these past several months, even though there were a couple times I wondered if I would. And you, dear reader, you who may have a chronic illness like I do, or even if you don’t but found yourself in a much, much harder place mentally than you ever have before, you survived it too. And dammit, that is worth celebrating.

Second, we have to start planning for the next months. We have a midwest winter coming, which isn’t fun with chronic illness. We have new symptoms to figure out how to treat, and we have a pandemic that we have to protect ourselves against. And while we don’t know what societal issues will pop up, we have the ability to look back to find clues on both treating our new symptoms as well as thinking about what additional coping mechanisms we can use to get through the next couple months. (And one note, I’m certainly not giving up that salty/warm/crunchy comfort food and I don’t think you should give up that somewhat unhealthy coping mechanism either. I’m simply saying find more of them so that we have a bigger toolbox to draw from).

So the first thing I did to prepare is to look at my medications and changed them based on my new symptoms. And while I hate being on some of these particular ones due to the fact that my body can become dependent on them, I have to do it, at least for now. I can revisit the medication changes in the spring once we can move forward with a vaccine and try to get back to normal.

The next thing I did was to start a new activity regimen. I’m not going to call it an exercise regimen. What I’m doing instead is working on being active every single day. It may be walking my dog, sitting on the floor or on the couch and doing 10 minutes of stretching or modified yoga, doing my Sunday run or just working with a therapy ball on my hands and wrists while watching TV. I want to give my body something. Sure, it’s somewhat broken, but it’s still getting me through things, and my giving something back to it makes me feel better. That regimen is going to look different for everyone, and that is OK. the biggest thing you are doing with it is giving something back to your body. The thing I have learned in these past months is that when it comes to exercise, it doesn’t take much to help your body work a little better.

Thirdly, I’m going to continue to track what and how much I eat. No, I’m not putting myself on a diet. Sure, I am giving myself a calorie guideline, but if I pass that, I’ll simply enjoy the sound of it swooshing by. (Just like deadlines!)

I’m going to be tracking my food simply to be mindful of it, not to beat myself up for not eating enough or too much. Being mindful of the overeating coping mechanism, at least to me, allows it to be more effective. I’m making a choice to eat more because I feel upset by something. And while I’m writing that information down in my food tracking app, I’m also subconsciously examining what emotions are going on that made me want to overeat in the first place. That may not seem like much during the situation where you want to overeat, but it will do wonders for when you have time to look back again at this next trial.

Lastly, and most importantly, I’m going to be easy on myself. So long as I make a conscious effort to track my food for the day and do some sort of activity for the day, I’m good. Some days I won’t be able to do either, and that is going to be OK.

With these new tools, and the allowance of thinking a little more clearly thanks to new medications to help with these new symptoms and flare ups, I think I’m better prepared for this tough winter season. And hopefully this post will help someone else think about things differently so that they will also be a little more prepared. Because even if it is in our own individual homes, we are all in this together.

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.

Find Your Pace

About a year and a half into my diagnosis, a well wisher sent me a picture of a woman doing a yoga posture. It was a forearm balance, a variation of Feathered Peacock Pose. The yogi in the pose had fibromyalgia, and she made this pose look effortless. My well wishing friend was basically saying that if this woman could do this pose, that I could too, even with the Fibro.

At this point I wasn’t giving up on doing the same things I did before the diagnosis yet. I pushed the hell out of my body to try to continue to attend Tae Kwon Do and Hap Ki Do classes and keep up with the rest of the students. And I was still pushing through 40 hours of work, yoga and running when I could. So saying my body hated me at that point was an understatement; I hurt like hell every single day, but I refused to let up.

To make matters worse, I had gone several rounds with different medications to try to get the pain under control. I had gained 40 pounds at that point thanks to the side effects of those medications. And at this point, additional problems were already starting to kick in, problems like IBS, depression and anxiety.

So I see this picture, and recognize I’m nowhere NEAR the level of yoga that this yogi could do. And the icing on the cake… the description said she was a mother, and in her leggings and top, she looked like she had a body to kill for.

The only thing this picture did for me was make me realize I wasn’t there. I wasn’t at a level of perfection that I wanted for my body. I didn’t have that strong of arms, I couldn’t lose any weight (and seemed to be gaining pounds by the second) and there was absolutely no way I could look that good in the body I had. So how the BLOODY HELL could this woman do it and still have fibromyalgia??!? And how the hell could she make it work when I was busting my ass and only injuring myself further?!

The depression finally kicked in pretty damn heavy when I finally came to the conclusion that no matter how much I tried, no matter how many times I counted calories, pushed my body through exercise or did anything to try to change my body, it wasn’t going to budge. The Fibro had dashed any hope of me having a body I loved; dashed hopes of my obtaining a black belt in either martial art, and it dashed any hope of doing yoga poses like that.

And it was my fault. At least that is how I felt at the time.

Now, I know a little better, or at least I hope I do. Perhaps my body is just very different than hers, and we probably have very similar limits on our energy; but just choose to spend that energy differently. Perhaps she is a full time mother, and does yoga on a regular basis. I split my energy up into working out of an office, chores at home, running, martial arts drills and yoga when I have the time and energy for it.

Part of me wants to do the comparison in my head. ‘Well, I bet she can’t run a 5K nonstop.’ Or ‘maybe she has never thrown a kick in her life, where I still can.’ And perhaps I’ll never get over wanting to do those comparisons. But in some ways, they are true. As a Fibro and CFS sufferer, you only get so much energy in the day. I spend it getting my husband out the door, caring for five cats and a dog, doing Pilates and making sure I get that 5K run in any chance I can get. She has different priorities, and thus spends her time doing yoga and caring for children.

I really try hard to keep that thought in mind when I do see someone who looks like they are handling their diseases a lot better than I am. I still consider myself to be in a bit of a learning phase with this disease. I’m trying to find my own pace, whether it is running, or figuring out what I can do after I get home from work. Sometimes I astonish myself. Other times, I make myself some sort of ‘nest’ where I can hide and rest for the evening because I just did too much.

And while I’m at it, the energy limits don’t just stop at physical ones. You have to find your pace when it comes to emotional energy, too. If you have a seriously stressful day at the office, you may not be able to get that extra cleaning in at home because you are just too mentally tired. Or you just can’t handle a commitment you had made previously and have to cancel. It happens.

What matters is that you do your best to find your pace, and keep it as well as you can. And after time, you will know your limits well enough to better understand when you are about to go over them. It’s all about taking the time to take care of yourself, which is the most important thing you can do.

The Many Different Symptoms of Fibromyalgia

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

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

Boy, was I wrong.

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

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

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

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

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

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

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

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.