Fibromyalgia Researcher Responds to Our Readers

Fibromyalgia Researcher Responds to Our Readers

Editor’s note: Ercolie Bossema is a researcher at Utrecht University in the Netherlands. She and her colleagues conducted a study on the effects of weather on fibromyalgia symptoms, which was recently published in the journal Arthritis Care and Research.

After hearing that many of our readers objected to some aspects and conclusions of the study, Ms. Bossema kindly agreed to address them in this column.

Ercolie Bossema, PhD

Ercolie Bossema, PhD

We are sorry that our article upset some of your readers. We are glad to address some of the issues raised by them.

First of all, we want to emphasize that it was not our intention to challenge the beliefs of people. We wanted to examine in a scientific way a phenomenon that has been experienced so often by people with fibromyalgia.

Second, we want to stress that our findings pertain to groups of individuals. Overall, our analyses of daily symptoms reports of more than 300 people with fibromyalgia showed more evidence against than in support of an influence of specific weather conditions on daily symptoms of pain and fatigue. However, our findings do not rule out that a relation between the weather and symptoms hold for a specific individual.

Third, people with fibromyalgia are often confronted with invalidation, which can be defined as responses of others that are denying, lecturing, not supporting, and not acknowledging the condition of the patient. With our findings we might give the impression that we wanted to disprove the existence of a real relation between symptoms and external conditions. However, that’s not true.

We believe that fibromyalgia is a sensitivity syndrome and that pain and fatigue in fibromyalgia are triggered more easily by all kinds of stimuli than in people not having fibromyalgia. We wanted to verify in an objective way whether this also holds for the weather. Surely, we did not want to plague people.

Fourth, one reader comments that this study is “going to push back all the hard work we have done in trying to get more research for fibromyalgia.”Another suggests that our study is “flawed.” And still another suggests that we might have done the study “with an agenda of non-belief.”

This is surely not true. We think that research in fibromyalgia is very important. The research group of Utrecht University does a lot of research in fibromyalgia and all research is done in collaboration with patient representatives. We are independent researchers that do the research in a conscientious way. Rather than seeking controversy, people with fibromyalgia and researchers should join to understand fibromyalgia and to find improved treatment.

There were several comments with respect to the design of the study. We want to briefly summarize characteristics of the study:

1. A total number of 333 female patients were included; all had a rheumatologist certified diagnosis of fibromyalgia according to established criteria. This is not a small sample size. It is unlikely that the findings would have been otherwise if more patients would have been included.

2. The influence of the following weather variables was examined: air temperature, sunshine duration, precipitation, atmospheric pressure, and relative humidity.

In general, the weather circumstances were not extreme. However, weather conditions change a lot in the Netherlands and also in this study weather conditions varied a lot for most patients during the four weeks of the study. Thus, our study results do not hold for very extreme weather conditions, but for common variations in the weather.

3. Patients participated in three seasons: autumn, summer and winter, but not spring. Thus, measurements were taken at different times for different patients.

Overall, we do not want to challenge the beliefs of people with fibromyalgia or refute the truth of their own experiences. Sometimes patients tell us that a specific diet improves their symptoms. They try to convince us that we should recommend this diet to other people with fibromyalgia.

However, we cannot support such a recommendation because what is beneficial for the one may not be beneficial for another. Scientific research is needed to examine whether a recommendation can be given to a majority people or a specific subgroup.

Enhanced sensitivity to pain and fatigue is core to fibromyalgia. However, whereas in the one patient the one situation may trigger or aggravate symptoms (the weather, emotions, a diet, strenuous exercise), in another patient quite another situation may be more relevant.

That our study indicates that relations between the weather and symptoms are not very common in fibromyalgia, does not rule out the existence of such a relation in a specific person with fibromyalgia.

Authored by: Ercolie Bossema, PhD

There are 14 comments for this article
  1. Bea at 6:33 pm

    One of the major “Flaws” in this study is the “28 Days” unless you would have been in Pennsylvania this summer when we would have temperatures go from 90 to 60 to 90…Yes, I know temperature differences like this affect everyone, however, those of us with Fibro/CFS are affected “Much More”…Many people with Fibro can’t handle “Cold or Hot”, some only Cold, some only Hot, but, How much these temperatures affects symptoms also depend on “How Fast” we have to go from one measure to the other…

  2. Lynn at 4:20 am

    Thank you Dr. Bossema for your very kind reply. But I too disagree with the conclusion drawn by the study, which I feel was much too short in duration. I have lived in Europe & several very diverse climates within the lower 48 United States, including a mid-Atlantic, desert southwest & extreme northern with barely 6 hours of daylight during winter & 200+ inches of snow; and now the midwest aka tornado alley. I wonder if such a study could be performed here in the midwest US where we have more extremes in weather.
    I too feel changes in the weather, sometimes a day or two before the meteorologists on TV know. I knew rain was coming this past week but everyone was predicting hot, sunny days across the board. Then, suddenly, there it was! A cold front, that would bring rain. I knew & felt it, both in my body & in my facial sinuses. Oh, yes, there is a very strong connection. Just about every time the barometric pressure drops, my body hurts more & I get another round of disabling sinus headaches. With all due respect to the time & work put the study, just because there was no connection between your patients & the weather in your country doesn’t mean the same will hold true for other people, in other nations or even in a different geological area within your own country. I suggest a larger test group,

    We’re right about this now , just like we were 30 years when we were told our fibro symptoms were all in our heads or 40 years ago regarding PMS, premenstrual syndrome.

  3. Kay at 3:33 am

    On reading the replys written to your letter, I have wondered why there were no more responses. I then realized that many of us (not simply an individual) who suffer from fibromyalgia and the severe pain at the change of the barometer didn’t not feel this even dignified a response.

    As another person stated this research by your admission of it’s contents no where really represents fibromyalgia patients and the pain they suffer at the time of a weather change. I could easily present more than 300 fibro patients in England, (where the weather is becoming more changeable as the years go by), who can definitely tell you weather change has a major impact on there pain levels.

    With millions suffering fibromyalgia around the round 300 people saying that weather doesn’t effect there fibro is way to small a sample to use to publish such results as you have.

    My suggestion to you is do the research again on a much higher number of people on a 12 month basis and in a climate like
    England where the weather is variable almost on a daily basis. Then you can say your result are accurate.

  4. Heather Jacoby at 10:58 am

    I have arthritis and asthma and both those conditions seem to be impacted by the weather. (In fact, I was in a study when I was a child in which I was paired with another child in Michigan had sudden severe asthma as I did — and my doctor felt the need to warn my mother to observe me closely as the weather changed. My “match” had a severe attack and actually died. I was hospitalized and nearly died, apparently as the weather changed in our area. Perhaps as a result of my doctor’s careful monitoring and his expression of concern, I didn’t die).

    I do wonder if secondary conditions may play a role in this “weather-sensing.” I mean, I had a rheuamtologist who once told me that “Fibro takes whatever (health issues) you are and amplifies (them).” That was his view, but I’m not sure it’s a scientifically accurate view. Just food for thought.

    I also have sleep apnea, of which my fibromyalgia is apparently a secondary condition. When I had my apnea treated, I was surprised not to have the “roaming” pain that I associate with Fibromyalgia. My doctors seemed only mildly surprised as sleep seems to be a central issue in fibromyalgia. They called it “sleep-deprivation-induced fibromyalgia” although rather informally — as they quickly added that they don’t know for sure what causes fibromyalgia.

    I am not worried about being ‘invalidated’ by the study results and I thank the researchers for doing the study and most especially for their reply. For me, personally, I fall back on my co-morbidities for an explanation of the weather’s effect.

    I notice that “healthy” people also complain about feeling the changes in weather. Headaches are common in our office before severe weather.

    Who knows? It’s good the research was done. Maybe it will be replicated. Maybe someone else will see an intricacy that was missed. I’d love someone to explain to me why I have to look up the word “intricacy” when I never used to have troubles with spelling. Heh. I’m sure there’s a lot that will remain unexplained and confusing. If there’s one thing I’m sure of, it’s that fibromyalgia is not a “straight-forward” sort of illness.

  5. Dennis Kinch at 3:20 pm

    I have personally talked to 3 times as many patients and I have never met ONE who didn’t notice a substantial change in adverse weather conditions. Some felt it before the weather set in, others, after. Some felt it in a severe way, others, mild. Some , only during winter storms, others, thunderstorms, and yet others, every storm.
    If you still have to stand by your findings and don’t believe them to be flawed, maybe you should research doctors who would almost always agree with you. They didn’t believe their patients either. Studies like this, which do not listen to the patient, is the exact reason fybro was just recently consider a real disease.
    What do you say to all those fybro sufferers who never got diagnosed and lost everything, including their jobs and insurance because science fact didn’t back them up? You should read the book, “It’s not in my head!” RSD is going through the same WRONG process in the name of “good research.”

  6. Nancy at 2:35 pm

    As a scientist, and as a person with fibromyalgia who is affected by certain weather patterns, what this result says to me is that there could be specific “subgroups” of people who are very affected by the weather. Because the inclusion criteria probably did not parse these people out according to whether they self-identified themselves as being weather-sensitive, and/or possibly had co-occurring rheumatic diseases such as osteoarthritis, rheumatoid arthritis, lupus, etc., which may have been undiagnosed although symptomatic, the weather-sensitives may have been “diluted out” by inclusion of so many others who, as the study notes, ON AVERAGE, were not weather-sensitive.

    Also, I want to take a minute to point out that a single person’s symptoms are not necessarily reflective of an average composite symptom profile that is reported in a study. This is EXTREMELY IMPORTANT, as noted in the reply above. This concept is often forgotten or minimized, frankly quite often by doctors who themselves prescribe medications and then dismiss a patient’s reporting of specific side effects, because the specific side effect was not listed on the “AVERAGE” table of side effects for a clinical study of a drug.

    Basically, this study and the author’s reply suggest to me that we need to do a better job of diagnosing co-morbid conditions such as arthritis, Sjogren’s, lupus, etc., AND further refining the diagnostic criteria for fibromyalgia. As I see it, from all the support groups I belong to, fibromyalgia is basically a SYNDROME, rather than a specific disease. The symptoms range so far and wide it is really hard to find commonalities among those having fibromyalgia, except that we all experience pain and fatigue in some way. More research is needed. This is a good start but please, for the sake of us patients, keep going!

  7. Kim Cable at 2:10 pm

    I’m even more confused now then I was before. I believe it was stated in the initial article that the patients were studied for 28 days and now in your response you state that they were studied during all four seasons. I’m a little confused as to how that could be. I worked in the medical field and mental health field for many years as a Social Worker and have read numerous studies over the years, my son in fact participated in one at Vanderbilt University Medical Center when he was a child so I do have an understanding of how detailed the content is. If these patients participated for 28 days at different times during the year then in my humble opinion the study is flawed.
    The study should have been conducted over a 12 month period of time, with individuals that live in different climates and altitudes. I realize this will more than likely never be done but as an individual that suffers with numerous serious medical conditions with amazingly Fibromyalgia being the least of my “worries” it does make me very angry when I see articles such as yours published because it does make those of us that do suffer with pain on a daily basis appear to be “faking” our conditions when in fact we live in hell on a daily basis.

  8. John Quintner at 1:51 pm

    @ Julie. “Enhanced sensitivity to everything …” To me, this phenomenon is more likely to be an “effect” rather than a “cause”. This is the very point that I was hoping Ercolie would address – how to distinguish causes from effects when researching this complex condition.

  9. Jenn at 11:42 am

    Why not spring? Since spring is the time of year that most countries experience the most amount of rainfall. And only 28 days? It doesn’t seem enough. I’ve experienced, just this year, multiple times when the weather didn’t change for a while and then bounced all over the map for a few weeks and then settled down again before bouncing all around. I know this isn’t a technical response, but I think that 300 WOMEN (why weren’t men involved with the study) of a certain age group (if I remember correctly) experiencing different weather at different times of year and coming to a conclusion based on their report of 28 days?? It doesn’t seem consistent, or broad enough or long enough to determine anything. The original article reported that the findings weren’t consistent enough and so you discarded them as coincidence. That also doesn’t seem to be a very scientific method of investigation. Where was the control group? Where were the people who had rheumatic conditions that DO experience weather related pain increases? In my opinion there should have been 3 groups; one without rheumatic conditions, one with, and one with fibromyalgia. All should have had both male and female of varying age ranges, and the study should have been done for a longer period of time and during each of the four seasons. Not just three. It seems to me that a lot of information was ignored during the study.

  10. pete at 8:09 am

    Well the comment on diet”However, we cannot support such a recommendation because what is beneficial for the one may not be beneficial for another. Scientific research is needed to examine whether a recommendation can be given to a majority people or a specific subgroup.”

    The treatment of any chronic pain requires every patient and physician to be as vigilant on diet as well as pain meds, exercise, social interactivness and alternative therapies

  11. Julie Jenkins at 10:55 pm

    I agree with the study, while many of the people I know in support groups proclaim changing weather affects them they also have other conditions such as arthritis. I see people say they can “feel it in their joints” but from what I have been told and have learned FM is not in our joints its more in our muscles. I have arthritis in my lower back and that’s the only area that experiences pain during weather changes.

    @John- FM is caused by enhanced sensitivity to everything including pain and fatigue. Why the trigger points are so painful: enhanced sensitivity. Also why many have heightened smell, taste, hearing, and touch.

  12. Rayleen K at 5:08 pm

    I too can tell when cool damp weather is approaching
    and suffer headaches and pain until it passes.
    Needless to say, winter is very difficult. Also,
    other people that I communicate with in support groups
    feel the same. You should revisit this issue.

  13. Lisa Heiss at 4:19 pm

    I understand that you think that this applies to a “single individual” but I belong to a support group with many “single individuals” that each and every one of us has experienced weather-related aggravation of our pain symptoms: that is more than just a “single individual” experiencing weather-related symptoms and suggests that there is something wrong with your conclusions. Not one person that I have talked to that has diagnosed fibromyalgia –including myself–has ever said that they have not had weather-related fibromyalgia symptoms, and, in fact, each person I have talked to HAS had weather-related symptoms that were aggravated during the weather events, and I talk to a lot of fibromites each and every day. I an not denying that you believe that you are correct, only that I don’t know one single person who has been diagnosed with fibromyalgia who has NOT had their symptoms aggravated by the weather: so much so that we warn each other on our facebook support group page when we are expecting weather-related events. Perhaps you should do a much larger study??? Include many more people with fibromyalgia??? Do a study over a much larger period of time???

  14. John Quintner at 3:20 pm

    @ Ercole. Over the past 50 or so years, the question of whether atmospheric conditions could have a bearing on the level of pain reported by people with “rheumatic” conditions has been roundly investigated. Usually the results have been either negative or inconclusive.

    Can you tell me why you carried out the study in the first place? How could your findings be helpful to people in pain who, as you have found out, do have their own unshakeable views on the question?

    Finally, what exactly do you mean by “enhanced sensitivity to pain and fatigue”? Given that chronic widespread pain and fatigue are, in themselves, central to the diagnosis, I find this statement most confusing.