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.

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.

Fibromyalgia: The Indeterminate Diagnosis

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

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

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

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

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

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

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

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

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