07.08.2016

Why are fibro researchers wasting time and money on the obvious?

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This commentary was first published on NationalPainReport.com. It is being republished here with permission from the editor. 

As a fibromyalgia sufferer, I am pleading with the research community to be better stewards of their time and money. We need effective treatments! Please stop researching the obvious!

Since I’ve been reporting on fibromyalgia, I’ve had the opportunity to interview some awesome researchers. Even though it feels like a cure (or even an effective treatment) for fibromyalgia is far away, there are some incredibly committed, talented researchers out there who are working so hard to help us. I think some of them want the answers just as much as we do, and their perseverance and dedication is paying off.

Nearly every month there’s another study hinting at the mechanisms causing fibromyalgia symptoms, or there’s more progress being made in developing new treatments. Reading about these breakthroughs is always exciting because it means fibromyalgia is gaining legitimacy, and we may be slowly – albeit very, very slowly – moving toward a potential cure.

But for every one of those exciting headlines, there are others that just make me shake my head in frustration. Here are a few recent examples:

  • “Fibromyalgia symptoms can include breast pain”
  • “Female fibromyalgia patients experience sexual dysfunction and mood, anxiety disorders, according to study”
  • “Fibromyalgia sufferers have difficulty maintaining continuous sleep, study says”
  • “Fibromyalgia disability status linked to severe symptoms, higher medication use and physically demanding jobs”
  • “[Fibromyalgia is] worse than chronic pain alone, but exercise helps”

Let me preface the point I’m getting ready to make by saying this: On the surface, any reputable research into fibromyalgia is likely a good thing. Every study is another tick that we can make on our tally to prove fibromyalgia is real and needs to be taken seriously. It brings greater awareness to our cause.

And I swear I do not mean this to sound ungrateful…

BUT … could we please stop researching the obvious? Looking at the bulleted list above, how did any of those studies (and many others I’ve read over the years) get us any closer to an effective treatment? How much time and money was spent on these studies to tell us things we already know?

Ask any woman with fibromyalgia – there are millions of us! – if her boobs hurt, and she will tell you, “Yes, and everything else, too!”

Ask anyone with fibromyalgia if they want to have sex, and most will likely say something like, “My legs hurt so bad, I want to cut them off, and I’m too exhausted to even take a shower. Sex is the last thing on my mind!”

Of course some of us with fibromyalgia have mood and anxiety disorders! When you feel like crud all the time, it doesn’t exactly inspire joy and happiness.

Ask anyone with fibromyalgia, “How’s your sleep?” and they will probably say, “Sleep? What’s that?” (To be fair, this is probably the most useful of the studies mentioned above, but other studies have already confirmed sleep difficulties in fibro patients, so why did we need yet another one?)

Many fibromyalgia patients on disability would love to go back to work. Do you think they quit their jobs because they thought it would be fun to live on zero income for two years while the federal government took its time to decide if they qualified for disability or not? No, they stopped working because their symptoms were too severe to continue!

Ask anyone with fibromyalgia about their symptoms, and they’ll rattle off a five-minute (at least) list – pain being ONE of them. Yes, chronic pain is bad, but of course chronic pain plus 20 other debilitating symptoms is worse than chronic pain alone!

Why do some researchers continue to ask questions with obvious answers? And if an answer isn’t obvious to a given researcher, just ask a fibromyalgia sufferer! We’re more than happy to clue you in on our day-to-day habits and challenges!

So here is my message to every fibromyalgia researcher out there: Please don’t waste time and money confirming what millions of fibro sufferers already know from personal experience! Use your resources wisely because we are counting on you to help us!

I daresay most fibromyalgia patients just want researchers to focus their efforts on two questions:

  • What causes fibromyalgia?
  • And more importantly, how do I get rid of it?

If your research doesn’t answer one of those two questions, please do us a favor and find one that does.

If you enjoyed this commentary, please share it on your social media! This post is part of Being Fibro Mom’s Chronic Friday Linkup!

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Comments

  1. Very well said. I have suffered from Fibro for twenty years although Doctors have been reluctant to actually call it that definitively! I live in a small town and do not think the doctors around here have much experience on the matter. I am tired all the time, am on sleep medication because without it my sleep cycle sucks and I feel even worse the next day. I ache all the time and have severe muscle tension and pain in my back, shoulders, and neck. For the past two years I have been dealing with severe tension headaches as well. I have bad Fibro fog where I forget words all the time and am hypoglycemic along with hormonal issues. I have tried so many medications and supplements that have not done a darn thing. I am miserable and sick of all this. I have had to quit my job that was too physically demanding and am having a hard time finding a steady income. I do have a passion for decorating and crafting and sell my work online but it really is not enough to live on. I could not even imagine trying to work a full time position and try to take care of my home and family. My husband really doesn’t understand what I am going through either although he tries. Some days I am so tired or my head or back hurts so much I have to go to bed in the daytime. This disease sucks and I would love some relief! I feel like I am missing out on life.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Lisa,
      I think you echoed what so many of us feel. I feel like I am missing out on life, too. Hopefully, we will get some answers one day. There are some researchers who are doing promising work.

  2. I went on holiday with my husband who thinks I’ve just let myself go. After walking and walking in a hot and humid heat my body was in so much pain I cried. Also my feet sweld up my flip flops hurt. I tried to explain that the more walking and climbing I do the worse my body gets by attacking itself. Now I will never go on holiday with my husband again. To describe how I was feeling is flu symptoms times 10 and standing in an oven on very hot. We need more money to try and find something to stop this. In the UK LDN is very hard to get, I’m still trying through my doctor and cannabis oil is illegal.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so sorry about your vacation, Carol! 🙁 I think all of us probably know exactly what you were going through. I can handle maybe 2-3 hours of being active before I’m done for the day. But I’m grateful even for that b/c I know some of my fibro sisters and brothers aren’t even able to have that much freedom. I keep hoping they will have a breakthrough in research and figure this condition out! Hopefully, the UK will weaken their stance on cannabis as more countries (including the US) start to legalize. I know hemp CBD oil is available in the UK. It’s not as strong or powerful as cannabis oil, but it does help some people. I’ve been using it for about a year now w/ good results.

  3. Wendy says:

    Researchers seem to be focused primarily on chronic pain, sleep, and what continues to fuel stigma – the ‘psychiatric’ component. What about other debilitating symptoms, like shortness of breath, rapid heartbeat, constantly changing vision, ringing ears, dizziness, and muscle weakness, to name just a few? I am frustrated and wish that researchers would have a more holistic view and approach.

  4. It is interesting how these people get the money for this type of research. Who is in charge making these terrible decisions? Makes you really wonder….Thanks for this, and for partying at Chronic Friday Linkup! Pinned/Tweeted/Shared

  5. Oh my goodness, you’ve read my mind. I’m so tired of hearing studies with conclusions like “people with fibro should sleep more.” We already know we’re supposed to sleep more, so help us do find a way to do it!

  6. Sandy says:

    Love

  7. Great article! I totally agree! I also hate the research that keeps rehashing whether Fibromyalgia is psychiatric. They should consider that dead and buried by now with all the physiological markers that have been studied more recently.

    Some of the best research I’ve read on it seems to suggest that it has mitochondrial components to it. That makes alot of sense given the fact that fatigue is almost always involved and many people are exercise intolerant.

  8. Bonnie Watson` says:

    Very well said! I appreciate reading you every time. Thank you for YOUR time and efforts. Wishing you and all fellow spoonies the best.

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