I see it all the time -- someone with fibromyalgia and chronic fatigue syndrome finds a treatment that works for them, and they start preaching about how everyone else should try it. A blog comments or forum post will saying, "I'm telling everyone," or "Finally, I've found the cure! You have to try it!"
I've gotten a touch of that enthusiasm myself at times. It's hard not to, when you know millions of us are looking for something that works, and you believe you've found that elusive miracle. In fact, it's easy to feel like you need to let other people know about it.
It's a noble impulse, and certainly we can learn a tremendous amount from each other. However, I do want to caution you about putting too much faith in what has worked for someone else. If you get too caught up in their enthusiasm, it's easy to bypass research, get your hopes up, and then take it really hard when the treatment fails.
Each of us has our own combination of dysfunctions and abnormalities that lead to a unique set of symptoms, and that means we each need to find the combination of treatments that works for us. That combination may work for some others, but it will be less effective for many and utterly ineffective -- possibly even harmful -- for some. For example, I don't have much of the typical fibromyalgia immune dysfunction. However, I do have an autoimmune thyroid condition. If I were to jump on the wrong bandwagon and try something that really ramped up my immune system, I'd be hurting worse. Someone who's problem is mainly immune would get little help from my neurology-based regimen.
We each need to learn as much as we can about our own unique cluster of symptoms and the most likely causes of them so we can make the best choices about our treatments. Do your research on potential treatments, no matter how many stories you hear about how great something is. Talk to your doctor to make sure you're not doing something dangerous. (You don't need your doctor's permission to try non-prescription treatments, but you should hide what you're doing, either.)
On the flip side, if you find yourself becoming evangelistic about a treatment, remember that your experience isn't the same as everyone's. Try not to become pushy, and don't take it personally when someone contradicts you. It's great to share information about your success -- that's the best way for us to learn -- but always keep our differences in the back of your mind.
If someone's making you crazy with treatment evangelism, try to keep in mind that they're just trying to help. Too often, I see someone who's failed with that treatment say derogatory things about the treatment and the person suggesting it, and that doesn't help anyone. I think the best approach is to offer your own experience, to help other readers put the suggested treatment into perspective.
Have you tried treatments based on someone's infectious enthusiasm? Do you get tired of seeing people who seem like cheerleaders for a particular treatments? Have you become evangelistic about a treatment, only to have it stop working or start causing side effects? Leave your comments below!
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It seems people ask me if I am taking Lyrica or Cymbalta because they see it on t.v. They think if I would just take them, I would be all better. I have to explain that I DID take Lyrica- it made me a zombie. I DID try Cymbalta, I had a bad reaction. They think I am just not trying, just wallowing in my misery. I have a whole regimen, worked out with my rheumatologist, and I am the best I can be right now.
I will “preach” two things that my doctor agreed with and told me to take MORE of: Super B Complex and vitamin D-1000. He said the general population would be helped if everyone took these vitamins. In patients with fibro, it gives us a bit more energy.
I have had people tell me that I should try fairly new surgeries to fix what are really just symptoms. But it’s a pretty radical approach. They are so enthusiastic about it because they’ve done it, but for other truly medical reasons for having the surgery.
I am extremely aware that my body needs protection from anything that is unnatural or unnecessary. I have always been extremely sensitive to the side effects from prescription drugs, alcohol and even vitamin supplements, all of which would leave me feeling very unwell. I don’t know if everyone with CFS has this problem, but for me, my beliefs are that CFS is caused by an overactive immune system; one that needs some slowing down, not boosting up. Others, can tell me what they think causes CFS, but for me, after having CFS for 25 years, I think CFS is an autoimmune illness.
So well said, Adrienne. People with these ailments can get in the most vicious fights about cure-alls — understandably, as we’re all hoping for that miracle.
The problem with the treatments is — they often work — just not nearly as much as their purveyor’s claim. And what works for one person, may not work for another.
This brought a smile to me, I’ve known some who might be found going door to door, wild eyed with a passion to “tell the world!” You said “a noble impulse” and that too reminded me of those energetic evangilists who have found the latest and greatest. And they know immediately, I need it too!
I think the one where they tell you about someone they know, and then ask “have you tried Advil?” is my favorite. Because they know this lady and her sister’s nephew, works with a girl, and she has a friend, who knows this woman, and her neighbors cousins postman’s wife, well she just takes Advil, and it works miracles on her…….. Just take some Advil, and you’ll be good to go! I’m thinking …… right, and I could of had a V-8!. If it is not Advil, it may be something simple, the things anyone would of tried immediately in the initial phases of the pain.
It seems their heart is in the right place, but sometimes their thinking is amiss. It is not like we just woke up one morning and said “hhmmmmm…… What can I do today? hhhhhmmmm I know, I think I’ll get fibromyalgia!” “That sounds like all grins and giggles!” Nope. We didn’t do that, but since we have it, not a day goes by that most of us would not try anything, everything, or at least be open to consider what ever option is presented.
Most of us are accustomed to this, as we have faced it before. It is a little more difficult for us to be as enthusiastic, when someone does approach us with something that has helped them. Over the years, I’ve sort of became “resiliant” to these suggestions, and I promise I will check it out. And I usully do, maybe not as a courtesy, but rather that faint glimmer of hope, that it might work for me too!
As usual, you have brought out another excellent point of what we go through on a regular basis!
Thanks!
BOB
menwithfibro.com
Fortunately, I’ll stand up and admit to evangelizing and will always continue to do so. However, I’ll tell you why. When people quit trying, they lose hope and if they weren’t depressed or anxious before the diagnosis(es), they soon will be.
Whether you have all or some of the peripheral symptoms of Fibromyalgia, Chronic Fatigue or autoimmune disease you have to control your pain, get some form of exercise, get some sleep, feed your mind and soul, and watch what you eat to a degree, Period.
I work in a medical facility with many nurses “that know better” but would rather whine, not consistently take their medications, are generally overweight and putting added stress on painful areas, refuse to modify their junk-laden diet a little, not attend upbeat support groups that are provided to educate themselves, and prefer to whine and drag their co-workers down with them.
I have FM and RA and I’m here to tell you that I’m going to have painful flares. We will all have flares. How we deal with those and minimize those makes all the difference in the world and you can’t be Pollyanna all of the time—but there is a time to shut up about it and take charge and think outside the box.
We need to watch who we choose to surround ourselves with. We need to carefully choose whom we disclose our conditions with if we don’t want unsolicited advice, because they just don’t get it. We need to hold a little tighter to the ones we can help and who might help us and keep making helpful suggestions to those who care to disclose their pain, fatigue and fears. I don’t care if it’s a silly cream that may or may not ease some connective tissue pain, or a therapist to change perceptions.
I find that in most cases, if you disclose just how you really feel to someone, you are inviting them to “fix it” because people are generally good and don’t want you to suffer and that’s human nature.
Sharing information regarding an illness where you don’t know who to trust is very tricky indeed.
I’ve found that the evangelizing goes hand in hand with experience. The first few years of my experience with CFS/ME I didn’t know much about what was going on, so a breakthrough was a big deal. It’s only natural that you want to share.
After a decade, coming across new patients who share with that kind of enthusiasm just makes me smile to myself. (Grasshoppers:).
That said, one of my biggest breakthroughs came from a website with good information, but a very strident and evangelical tone. When I came across it, the tone was so off-putting that I avoided trying the treatment info for a while, but eventually (because I was running out of options) I gave it a try. It makes me wish that the information had been shared in a neutral, fact based manner as I would have considered it as a source and not wasted time having to vett all their statements myself.
Adrienne, what you did to break down the different types of fibromyalgia was really helpful. Do you have more info on how to assess what ‘type’ you are? It would eliminate so much of the trial and error we have to go through to find out what works …
Adrienne, I also wondered what Taliba asked. It would be very helpful to know how to asses what “type” you are. I have had shingles and also an episode of “over-active thyroid”. Could you say more about autoimmune thyroid conditions and someone who is “mainly immune”? Your blog is incredibly helpful.
Ah, if we only had a nickel for every time someone who doesn’t have Fibro offers me their great words of wisdom on how to “fix” it. “Special” vitamins you cannot get in stores, “Super” juices, “All natural” sleep aids, exercise programs, and diets that “work wonders”. My favorite type of advice to receive always begins with something like, “You should find a new doctor. I heard there is one in Timbuktu that has cured lots of people like you … ” or, the ever-popular, “I know the feeling but a good night’s sleep should cure you, it does for me”. More often than not, their hearts are in the right place but, oh, I grow weary trying to clarify that it is not something you fix or cure or get-over. Some things help reduce the symptoms, other things help cope with the symptoms but, as of now, nothing will wipe it away like a swipe of a cloth will does to dust on a table. It’s always there and so are the advisors and their evangelism. I guess until the day we can find a fix or cure for both, I will just have to stick with my standard response, “Thanks for sharing that information, I will look into it”. Anyone have any other ideas for responses?
Many times people suggest medications that are the cure-all. However, 9 times out of 10, I’ve tried these meds and they didn’t do squat. People just don’t get it…”you don’t look sick!” or the “you look really tired” which is, in my opinion, another polite way of saying you look like shit. I try to keep my condition to myself. Recently, a man asked me, “what do you do all day?” I guess since I’m retired (because of fibro), I should be engaging in all types of activities. I wish!! My only reply was, “it depends on the day.”
“I know the feeling.” If there is one thing I am almost sure of, non-fibromyalgics don’t know the feeling. I would have never imagined the fibromyalgia feeling before I got this stuff. But the vocabulary that fibromyalgics sometimes use is also something that encourages evangelism. I hate it when people talk just about flares–as though this illness is just a matter of occasional flares. I wonder, do you have the same illness I have? I have symptoms constantly; of course, there are varying degrees, but it is not just a matter of flares.
I suspect that people have strongly different degrees of fibromyalgia; some people clearly are more debilitated than I am, but many don’t seem to have such severe symptoms. I hear my mailman say, “Yes, my wife has fibro, and most days she is fine, but then occasionally she is so sick she never gets out of bed.” Well, I can’t say I am ever “fine”; maybe for a few hours I might occasionally feel normal, but the symptoms are pretty much always there. On the other hand, I seldom have a day in which I never get out of bed; it’s just as uncomfortable in bed as out.
On another forum, someone says she deals with depression by “dancing with abandon.” How many of us are able to dance with abandon whenever we want to? Again, if we suggest to non-sufferers that fibromyalgia is just something occasional or episodic, not something systemic and continuous, then we are inviting evangelism.
There’s plenty of evangelism among us too–the whole guaifenesin crowd being the best example. People are desperate, and even if something helps a little, they want to believe that it does much more.
Great comments here! thank you for addressing this subject. we all have been despretly looking for answers since we got sick. The best anyone can do is eat right and take whatever supplements have worked for them, other than that I really don’t think we personally can “find the answer”. there needs to be a real break through.
The shout out I’m guilt of was last year when they announced that those with CFS and Fibro have a retrovirus, I told EVERYONE this is the answer we will soon have meds that really help us have are enery back.
What happened??? I feel at this point we’re left confused and duped! Now there saying not everyone with CFS has it. Shouldn’t they have waited to test more people, after all I feel THEY were the ones evangelizing they have the answer! Of course in the back of my mind I hope it is and the help is just around the corner. I’m sure they got billions in donations, hopfully it won’t end here, me thinking that’s what it was all about. Please Please care more about those suffering WPI than your research money! How do you want to go down in history?
Hopfully not shouting “suckers”!
From Your Guide: I wanted to clarify that XMRV research is still going on, including drug research. Sadly, science is slow, and conflicting results in some studies haven’t helped. Also, the WPI researchers never said it was a cause of ME/CFS or that everyone with the illness has XMRV. A lot of misinformation made its way around after the initial study was published, but it was put out by excited people who didn’t fully understand what researchers were saying. ~Adrienne
I liked the comment from Darcy – the one thing that amazes me is that I have gone from doctor to doctor who supposedly specilize in this stuff. They are the worst offenders – offering their treatments and telling me that “this will fix everything” … but with little improvement. so far the things that have actually worked are an incredibly nutritious diet with almost all organic items and doing everything I can to simplify my life and reduce stress. Hang in there.
Agreed on liking Darcy’s comment!
However I will differ on one count, that I generally get irritated by ‘treatment evangelism’ depending on the source. When I get advice from non-patients and uneducated health professionals, I have little patience!
From another patient, I’m all ears! I don’t consider treatment advice to be ‘evangelism’ from other fibro or ME sufferers. To me other patients are one of my best sources of information, I’ll take whatever info you’ve got, and then sort out and verify for myself what will work.
I think that most ppl in our community ‘get’ that given the lack of knowledge and research regarding our illness, we have to rely on trial and error somewhat until we figure out what works for us. I wouldn’t want another patient to not share what’s worked for them for fear of being labelled ‘evangelist’. We get already enough negative labels already, no need to add yet another! Be polite when you share, sure, but keep speaking up!!
Thank you, Taliba for your last post from beginning to end.