chronic pain/fibromyalgia

I know you’re just trying to help BUT…

This is a standard email I send to people who have suggestions for things I should try for my chronic pain:

Hi, my name is Aliza. I have fibromyalgia.
I know that people don’t know what it is usually. I know most people can’t pronounce it or spell it. If you’re lucky, you’ve probably seen a silly advertisement in a magazine or on TV for a medication that is being used to help people COPE (not cure, there is no cure) fibromyalgia. And that’s about as much as most people know about fibromyalgia if they’ve heard of it at all. Even my close friends and family who see me on a daily basis have a hard time understanding how fibromyalgia affects my life.

I think it’s pretty safe to say that unless someone asks you for advice on their health problems, you shouldn’t assume they want it. After all, you wouldn’t go up to an obese person and give them pamphlets on weight loss. In the same vein, I would ask that you please not email me every single time you read something about fibromyalgia or you see an advertisement for a medication for fibromyalgia. If I tell you I’m in pain, I’m not asking you for suggestions on how to fix it. It’s rather like a weather report: Aliza’s pain is at 100 degrees rather than 50 degrees today.
Think about it for a second. What are the chances that you’ve heard of something that I, or the National Fibromyalgia Association which sends me information quite often, haven’t heard of? What are the chances that you’ve uncovered something that I’ve never uncovered before? Mostly, what are the chances that you know something that I don’t about fibromyalgia? Also, what are the chances you know something my doctor doesn’t already?
Please understand, I receive emails sometimes daily from well-meaning, well-intentioned people who have “suggestions” for things I should try with my fibromyalgia. (Everything from speaking software to tea, yoga, and other remedies.) I know they’re just trying to help but they don’t. At best, you’ve caught me on a bad pain day and added yet another annoyance to my life. At worst, your suggestion is the tenth I’ve received that week because everyone saw the same advertisement you did. It gets tiresome and at times, condescending.
If you want to help me cope with my fibromyalgia, ask me how you can help me. And here’s what I would tell you…. If you’d really like to help, make a donation to the National Fibromyalgia Association so that knowledgeable people can help find ways to help those of us who suffer with fibromyalgia cope with it in our daily lives.
Thank you.
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9 thoughts on “I know you’re just trying to help BUT…

  1. if i charge a dime for everytime i hear “advice” from people who dont have FM…i would be rich right now

    nothing irks me more than when people tell me to work it out..go to the gym…etc
    UM if i wasnt in pain…MAYBE i would. but the fact that even going down the stairs hurts…um..thanks but no thanks on the gym.

    there are days i just want to scream out..I DONT CARE WHAT YOU HAVE TO SAY BECAUSE IM IN SO MUCH PAIN EVEN HEARING YOUR VOICE IRKS ME…

    but then that would be rude..lol

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  2. I think it's especially funny when people I know have never been inside a gym give me that advice. The ladies at the gym can tell when I'm having a bad pain day because I can barely walk. Basically, it's like I'm crawling in.

    At some point, one doctor said that all he could offer me was the suggestion to exercise 30 minutes a day every day and I did it. I've found it only mildly useful. Other than giving me a little more mobility in certain areas, exercise hasn't changed my fibromyalgia so much that it's made a true difference in my everyday life. Probably because unlike most people with fibromyalgia, I was extremely flexible already. I can do splits and touch my toes even after weeks or months or years of not doing any stretching or yoga at all. Of course, this adds to the “you don't look sick” chorus.

    Sometimes, in fact, exercise can cause excrutiating flare-ups (which is what I call it when the pain spikes in seconds from a level 4 to a level 10). Understandably, this can cause “trauma” and periods where I'm terrified of going to the gym because I'm so afraid it will cause really bad mega flare-ups.

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  3. After all, you wouldn't go up to an obese person and give them pamphlets on weight loss.

    Unfortunately, some of them would.

    But yeah, Nosy Parkers should go find OTHER people to bother.

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  4. this can apply to so many situations. well meaning people can hurt even with the best of intentions. Unless you have the same issues you cannot know how the other person feels, and what to do to help ease their suffering.

    My issues are different, but sometimes well meaning people just make me want to thump them.

    I pray that a cure is found soon.

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  5. I would add only one line to your email – “If you want to help, offer my spouse some help with cooking/cleaning/childcare/ chauffeur duty.”

    It's just the two of you now, but if/when you have kids, fibro makes life REALLY complicated.

    Or just tell them what you really need is a lifetime supply of chocolate. 🙂

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  6. Hey! Can't wait to meet you Aliza. I am less flexible now than I once was but found all the while (24 years now) that my flexibility contributed to the problem. Why? Because I can't always feel when I am overtaxing and because my alignment's screwed up. I am trying to focus on strength-building but it takes a lot of work and strength-building for me is very different than someone without chronic pain. Strength-building for me is consistent stretching and exercise and very slowly moving toward using weights and cardio-vascular work. I am almost at a point where I can use my physical therapy and yoga to break my pain cycle rather than having to wait the pain out.

    I've never been diagnosed with fibromyalgia, per se, but I don't think it's been ruled out either. I am not sure that having the diagnosis would make a difference in what I am doing because I don't want to take drugs.

    See you someday face to face!!!

    Your soon-to-be neighbor,

    Sybil

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  7. Hi Aliza,

    I definitely can understand your reluctance to want to exercise with fibromyalgia. Since I've had fibromyalgia, oftentimes, I, like you, have wanted nothing to do but to lie in bed and wait until the pain stops. Thankfully, I got lucky enough to find out about one of the best fibromyalgia doctors in the country and have been his patient ever since. If you have the Complete Idiot's Guide to Fibromyalgia, he (Dr. Silverman) is one of the co-authors.

    My case may be a little bit different than yours, but from what I have learned and my own experience, exercise does help and has helped me function very well. Now I can run for about 50 minutes at an 8mile/hour pace on an elliptical and go for an hour and a half gym session, but it took a lot of work (and a testosterone prescription) for me to get there. I can say that when I do have strength, I have a lot more of it and for a longer period. That doesn't mean everybody should do it right away, but it does help. The advice is definitely annoying when every person just throws it out there, without careful thought of how to deliver said advice, but the professionals I've spoken with in the field tell me it definitely works. I would also speak with your doctor about a testosterone boost, if he/she wishes to give it to you, as that is supposed to help women with fibromyalgia as well as men. Progressive muscle relaxation is also fantastic for those moments when you're just really tense and sore. Read up more on it, and just download the mp3 and follow it's directions for 10-15 minutes (something I should be more consistent on myself.)

    You're a very strong woman Aliza, just keep fighting the good fight. Keep going and you'll conquer the fibro as much as possible eventually. Be strong and be well

    Boris

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  8. Again, I did not write this post so that people could give me advice on what to do about my fibromyalgia. I did it so people would STOP.

    Everyone with fibromyalgia is different and that's why things that work with one person with fibromyalgia don't work with another person with fibromyalgia.

    There is a chronic assumption in all the advice I'm getting and that assumption is that I haven't already tried what you're telling me.

    I at no point said I was reluctant to exercise. In fact, I said that I did exercise. But again, how little or how much I exercise is none of your business because my health is MY business, not yours.

    Before giving advice to someone, whether you have fibromyalgia or not, I suggest ASKING: “I have some ideas about what you could try. Let me know if you're interested.”

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