Since having Chronic Fatigue Syndrome/Fibromyalgia, I feel like I’ve become a Meterologist. Those of you who have CFS/FMS or similar conditions, can you relate? Does your family ask you about the weather instead of consulting the local paper, online or television forecast? Or are they like my family; they know clouds, rain or a storm are moving in just by looking at you…because you don’t look so good.
I feel a low pressure front before clouds can be seen and without knowing what weather has been forecasted. My neurological system is most affected; my left side (that has weakened with my illness and lost some permanent coordination) becomes weak to paralysis and uncoordinated to uselessness. My brain hurts as if it is a balloon that won’t pop, being filled with water far past capacity. My cognitive processing slows as if my thoughts are moving through setting concrete. Words I want to use hide from me and words I don’t want to use take their place. I feel as if my IQ deflates like a tire with a leak. Often I can not stay awake. Pain flares. My eyelids swell to half mast. My face swells. I am not a pretty sight, nor in the best of moods.
For years I’ve searched online for correlations between barometric changes and the symptoms I experience, and found little. It has long been understood that weather changes affect Arthritis. Recently there is a growing awareness that barometric pressure changes can trigger migraines and asthma attacks…and thankfully, it is understood that it can trigger the pain aspect of Fibromyalgia as it does Arthritis.
Hopefully with understanding of CFS/FMS will come understanding of the correlating weather sensitivity many of experience. I sure don’t know the answers, but I find myself conjecturing when I’m “under the weather”. Perhaps barometric pressure changes cause inflammation of the brain and nerves as they do the joints in Arthritis. Perhaps those of us whose disease process was triggered by a neck injury affecting the spinal cord, experience inflammation in the area of injury, which inflames the nervous system. Medical research ultimately will reveal answers, but it’s going to take awhile. Meanwhile…
I hope by sharing our experiences with barometric pressure changes, we can learn more about this piece of CFS/FMS from each other. Do barometric pressure changes trigger your CFS/FMS symptoms and if so, how? If you are comfortable sharing just click on comments (or “read comments” below.)
It’s not just you!! My fibro is going nuts now. I have 2 friends with fibro and/or CFS that are going through this now too.
There is *DEFINITELY* a weather connection to symptoms. I have listed several recent blog posts you might find interesting from my blog. The last one might be particularly interesting since it really has some focus on the weather aspect.
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1) Thursday, October 30, 2008 Endometriosis Blog: VIDEO On Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) And Post Viral Fatigue Syndrome
2) Thursday, October 16, 2008
Endometriosis Blog: VIDEOS Of Husband’s Grief Over The Loss Of His Wife Who Had Fibromyalgia. These VIDEOS Could Help Many People!!!
3) Monday, October 6, 2008
Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition
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You are not alone and you are NOT imagining that weather affects your symptoms!
Hang in there!
Jeanne
http://endendoat.blogspot.com
I light bulb just went off for me, Kerry. Good grief, sometimes I wonder if I retain anything in my poor brain! I have been having alot more pain and stiffness in the past month and attributed it all to the increase of a strong med. Alot did go away when I took a break from the med, but still was stiff and experiencing more pain than usual so I figured it was something I was eating..peanut butter! I went off that and hope for improvement..but with your post I remembered that I get like this when the weather gets colder! Lately ours has gone from cold to hot to cold. One day it was in the 70’s and the next it was 40 and snowing because it was colder in the atmosphere. I do feel more pain and stiffness then, but do not have the severe body responses you do! Yikes!
Hope you are feeling back to “normal” soon.. and I guess I am still trying to locate my brain~
Renee
Hi Renee, It took me years to coorelate the weather with my flaring symptoms. When I did it was also a lightbulb moment.
Thanks for the well wishes (the weather is still cloudy and rainy, but I’m doing a bit better because the pressure isn’t changing at the moment–the changing is what really gets me.)
Here’s to finding your brain…mine takes off too. Perhaps when CFS/FMS gets figured out, someone will figure out a treatment that will work as a brain locator. (I wish I had one of those smiley face wink icons, I put it here.)
When a deep sea diver brings creatures up to the surface, the change in pressure is enough to kill them. I think you’re on to something when you write, “Perhaps barometric pressure changes cause inflammation of the brain and nerves as they do the joints in Arthritis.” Maybe the higher air pressure we have on nice days keeps spinal cord inflammation at bay.
Someone should design a hyper-baric chamber for home use. I’m sure a lot of people would be comforted by it.
Well, right after I posted that comment, I searched for “hyperbaric chamber” and found the article on Wikipedeia http://en.wikipedia.org/wiki/Hyperbaric_oxygen_therapy . Not only does it say that can you get a chamber for your home, but it mentions that research has been done on MS patients.
Square Peg guy, Thank you for affirming my “conjectures” on low-pressure inflaming the brain and nerves. It helps to know they make sense, as doctors are most often unwilling to talk about atomospheric pressure’s severe effect on my symptoms. (I usually get a lift of an eyebrow or a “hmmm”.)
I followed the link to the hyperbaric chambers–thank you. I’d like to be in one right now! I’m dreaming of having one ready and waiting in my bedroom…
I’m glad you brought up deep sea diving and the danger in changing pressure so quickly.
I think medicine can learn a lot by studying pressure changes in relation to our physiology, not only the extreme pressure changes in decompression and high altitude sickness-for which much research has been carried out, but from listening to us at “normal” altitudes who are experiencing serious symptoms from smaller pressure changes.
Thank you Square Peg for your thoughts, affirmation and information, Kerry
Kerry,
I completely understand what you’re going through. For me, it becomes really tough (and hard to function) when it’s days upon days of yucky weather. ~Bella
I can only AMEN what everyone else has said. For years I have noticed this, although at times it slips from my fibro fogged brain, and I sit wondering WHY I am feeling so awful, then suddenly the answer smacks me in the face (usually quite literally!). I also find that I tend to have some sort of electromagnetic sensitivity that worsens during these times. Does anyone else notice symptoms like that?
Thanks for making others aware of yet another one of the “joys” of CFS/Fibro. I know most of my doctors don’t believe a lot of this, of course they don’t live it either!
I have suffered with changes in barometric pressure for years. I don’t know enough about it to know whether it is when the barometer rises or falls, but I go from feeling completely normal, to having what seems like a full-blown head cold in literally minutes. It always goes away in 24 hours time, but constant sneezing, coughing and nose blowing, going thru an entire box of kleenes. Anyone else have this? I know it is the barometric pressure. An acquaintance years ago said “Oh, you have barometric pressure disease.”
I realized years ago that my migraines worsened with weather changes. After having an accident which resulted in a shattered right tibia, numerous knee surgeries, and now a life-time of painful arthritis; I can predict two to three days before bad weather hits. Two years after my accident, I was diagnosed with FMS. So, needless to say, when the weather changes I’m miserable! But, something I have found that helps…not completely, mind you, but every little bit is welcome…get an electric blanket and get your bed nice and WARM, then crawl in and draw the covers up over your head (leave a hole for your nose if you need to.) The warm air calms my asthma, soothes my “to the marrow of my bones” ache, and helps with my arthritis pain in my leg. I hope this advice is helpful to someone else too.
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I call it barometric pressure disease.My brain swells prior to and during a low pressure system arriving here in the mtns.15 years now,I’ve lived here & had it,finally figured it out.Every winter,about Nov.-severe Chronic Fatigue Syndrome/Fibromyalgia.Drove from N. Calif. mtns to Arizona out of desperation at the end of Feb. for relief-right at Hoover Dam (just below the jet stream that day)POP!POP! POP! all the way up my back & neck-glands,air pockets in my lymphatic system & instantly a 9 day headache-”lifted”-so euphoric,lasted for a good 7-10 days after returning home,but symptoms then returned,but now (end of March)less & less days of “brain swelling”,soon to be gone for thespring/summer.I had mono when 16 yrs old & ejected thru a rear windshield at 55 miles an hour(as the car flipped & hit an embankment backwards,when I was 28,I regained conciousness B-4 ambulance arrived & ran away-undiagnosed head & neck injuries,I am now 54 years old & suffering numerous symptoms,I believe due to these 2 events & various other tramas-but I definately can predict the barometric pressure changes.Also have swelled eyelids,my whole face depresses,don’t even look like myself & it can recede just as quickly…
Thanks for your article. It has taken me over 15 yrs. to figure out the co-relation to atmospheric pressure. It dictates my life and like you, I know of cloudy, rainy, snowey, stormey weather even before it’s there. The symptoms creep up on me very gently, and I’d just want to take a nap. Once I fall asleep I go into very deep sleep and then I have to peel myself off the bed in order to keep up with my life. I also feel extreme muscle weakness – The exact phrase would be – “I feel wrung out like a cloth”. No energy whatsoever. Another symptom, I’m not sure if you all experience, is extreme hunger. I can keep eating and not be satisfied, just during such an attack. I call them attacks, because they feel like attacks and the moment the sun is out I’m fine.
I am now at a point where I’d like to start some exercise routine, but I’m just trying hard to do the things that are expected of me and my work. Basically just trying to do the best I can with the least amount of energy.
Another observation is that I’m always better in the evenings after sunset. These are the strangest symptoms and I don’t even know what kind of specialist to go to???
I’d like to find out if anyone experiences the opposite effects; when high pressure moves into an area with offshore flow (wind) I’m in serious, mind-numbing, body-aching pain for several days or until it moves out again. This is from head to toe (mostly head) and sometimes relieved with ice packs. This moment I’m looking at 30.04 for the barometric pressure reading. It’s Thursday and it’s not expected to clear out until tomorrow. Anyone else like this? Signed, Jonze
Hey all, I am also very affected by the weather. When storm clouds roll in, my head feels like its swelling inside. Just like you said, a balloon is inflating inside my brain. When this happens, I start to loose cognitive ability, visiual perception, strength, and others. I just have to get into bed and stay there till the weather changes. The problem is that I live in NY and this year I have been in bed more often that not. The weather is so crappy here with low pressure systems every other day. I really need to find a specialist who knows why the weather is triggering this neurologic response.
Anybody know who I can talk to?
Judy, Thanks for visiting and sharing. I’m so sorry about your parents. Oh my you sound like you are suffering so…physically and due to lack of understanding and lack of medical care. Have you been diagnosed with CFS? Do you have a CFS Dr.? Wondering if you live at all near the Peterson/Whitmore Institute in Reno (link is on my right side bar under “chronic illness support”). If they are too far, perhaps you can call them and see if they have a referral to a CFS knowledgeable doctor as near to your location as possible. If you don’t have CFS…there are many illnesses with similar symptoms (Lyme, MS ie –which I hope you have been or are being tested for) Those of us with CFS can relate to much of the physical struggles you are going through along with coping with the lack of understanding. I hope you will keep finding blogs and CFS groups online…to know we are not alone helps lighten this journey tremendously. You might enjoy the “Canary Report” as well which is for those of us who also suffer with chemical sensitivities as you mentioned.
Judy, it sounds like you and I both live by the weather…ugh. This is a tough “El Nino” winter, for me one of the worst in years. When warm storms roll in daily is when my function drops the most and my pain rises the highest. I have learned since writing this post and buying a barometric pressure meter, that it is actually when the pressure is moving up that has the greatest effect, but when the pressure is like a constant roller coaster that’s a small thing, its the changes in the pressure that cause the worsening of our symptoms.
I encourage you to call the Peterson/Whitmore Institure, OFFER (Dr. Bateman’s organization), CFIDS Association of America, to see if they can refer you to a CFS doctor in your area–they are all under “chronic illness support”. Having a doctor who is testing for illnesses that have symptoms similar to CFS to rule those out…then who knows how to diagnose you with CFS and can treat you…is so important for both health and peace of mind.
Here are more online sources of support. It helps so much to know we are not alone in this journey. “Friends International” is a wonderful support group for chronic pain, CFS and FMS as well, and the Canary Report for Multiple Chemical Sensitivities. Facebook has CFS groups as well…you can become a fan of CFIDS Assoc. of America there and interact with many people…and of course there’s all of us bloggers out there to communicate with.
My heart goes out to you as do prayers and thoughts. Don’t give up on finding a doctor who will listen to you and take your symptoms seriously, preform the right tests and help manage your symptoms. Keep making calls until you find one. If that doctor isn’t the right one, try another…and keep on.
And, please keep me posted, Kerry
Hi,
I suffer from barotrauma it came about as a child when both my eardrums were perforated and ever since I have been really sensitive to pressure changes. Lately, we have suffered extreme low pressure and my head feels like it is going to explode, and a sense of nausea seems to prevail. I can really relate to what other people are going through and must agree that little research seems to take place on this subject, yet it seems the weather really does affect a lot of us in quite a bad way!
what brought me to your sight is. far a long time as i have search for some answers that would help me servive this hell on earth. please forgive my langauge. i have told my freinds that i can tell the weather before i even get out of bed. when its raining or going to rain im a mess. more than a mess. im in for a battle to servive the day. with no tools or armor to deffened my self with. so i thought id search ( barometric pressure and c.f.s.) low and behold. im not alone. i only wish that not being alone was enough to survive this battle. a battle i truly feel im loseing. well that all the energy i have to wright this morn. and i still have a full day of work in front of me. crap. well they say the suns comeing out this weekend. maby ill have one . maby two days worth the living this month. take care all. david
Hello everyone! I’ve been dealing with all of this for about 13 yrs nown (Fibro/ CFS/ Barometric pressure sensitivity, etc) and I am just now finding out about what having a low Vitamin D count will do! I just had a blood test done to check my Vitamin D level (had to tell my doctor that I should have it tested!) and my Vit D level was 17! (Normal count is 35). After I got the lab test result back, I did my own online search about this and I found SO much information about it. I bought a book called The Vitamin D Cure by James E. Dowd and I couldn’t believe how many people who have Fibro/CFS also have a very low Vit D level! I have just started supplementing myself with some high Vit D like the book suggests and so I’ll be able to see how I do with this supplementation.
Please….do some research on low Vit D symptoms and see if maybe this can help you out! Go to your doctor and ask to have your Vitamin D level checked!
I also have found that guided meditation and hypno-therapy works GREAT to get the “mind-chatter” under control!
(Great blog Kerry! Hope your day is GREAT!) Love, Journi
Yep, vitamin D count taken and treated. Low vitamin D count and chronic illness that keeps you inside a good lot of the time are a bit like “what came first the chicken or the egg?” Lack of sunlight is a cause of not enough Vitamin D. In many healthy people who diligently use sunscreen (important for skin cancer prevention), vitamin D count can also be lowered. Do agree Journi that if you are homebound or mostly so, its important to have Vit. D count tested…to keep levels up and body functioning as well as possible. Unfortunately it is not a cure for ME. Thanks for sharing Journi.
Kerry – I didn’t mean to say that you would be cured with Vitamin D – I have just found it very interesting to find out how many people are having many health problems that are caused by having low Vit D….and, how doctors aren’t checking people’s Vit D levels but, instead, they are prescribing drugs for the many symptoms that low Vit D levels do cause. With more and more people staying indoors while working behind desks, more and more people are deficent in Vit D and that is causing them to have a lot of symptoms just like Fibro, CFS, high blood pressures, weight gain, losing weight difficulites, arthritis ,diabetes etc…
So, that is why I’m interested in seeing how I’m going to start feeling after I get the Vit D supplements working in me.
Have a good night! Journi
This is an interesting read and one I can relate to except my experience seems to be the opposite of what most other chronic pain sufferers experience relative to atmospheric pressure.
I’m a mid-40s male diagnosed and trying to live with FMS/CFS. I live on the coast in Southern California, right at sea level, and it’s here that I’ve discovered that my pain and fatigue is usually the worst. Wherever the atmospheric pressure is high (like at sea level) and the humidity is high (it’s usually 75 to 90% around here) my pain and fatigue are intolerable. It’s the same (or worse) in similar climates, like Hawaii, a place that I love but can’t visit due to the increase in pain I endure whenever I go there. Overall, I’m very sensitive to even the smallest pressure change. For awhile I worked on the 11th floor of an office building in Los Angeles and every time I rode the elevator up my ears popped and I got a little light-headed and it would take me awhile to acclimate once I got to my desk. Same thing going back down.
Seems like most people get worse when pressure is low and better when it’s high. For me, too much pressure is bad and too little is just as bad (like in Colorado or on an airplane). For me there is a sweet spot and I’ve discovered this over the past couple of years while making extended visits to family up in the mountains in Northern California and traveling on business all over the country.
Over the last couple of years I’ve made four separate extended trips (longer than 2-weeks) to the mountain town where I have family. In each of these trips I’ve noticed that I’m practically normal while there, with significantly less pain, more restorative sleep, enough energy to maintain a daily active lifestyle, I eat normally and lose weight and overall, I just feel great and I’m able to do physical work and maintain normal activity just like I was able to do before this FMS/CFS business took over my life many years ago.
Spending time up there I discovered that the “sweet spot” for me (climate-wise) is 3,500 to 5,000 feet and less than 50% humidity (which it usually is up there even in the winter). It’s very important for me to have just the right combination of atmospheric pressure and humidity. One without the other doesn’t work as well for me, although elevation seems to have more impact between the two. For instance, I’ve spent quite a bit of time in the dry desert of Southern Arizona, places like Phoenix, Lake Havasu City, and Tucson. All are below 2,500 feet in elevation and all are dry as dirt but I felt like crap in all of them. Conversely I’ve been at higher elevations but when it was humid and that wasn’t much better than Southern Arizona.
When I get over 5,500 feet or so, I start to get nauseous so whatever I gain from the lower pressure doesn’t really help since I get sick anyway. Forget about flying, where the cabin pressures are maintained to the level of 7,000 to 8,000 or so feet. When I get off of an airplane, I’m usually wrecked for several days.
In pursuing some sort of reasoning for this “sweet spot” I looked up the atmospheric pressure in this chart to see what the actual pressures are between 3,500 and 5,000 feet.
http://www.engineeringtoolbox.com/air-altitude-pressure-d_462.html
Interestingly, the pressure in this elevation range is all in the 12 psi range (12.93 to 12.23 psi) so it seems that for whatever reason, 12 to 13 psi of absolute atmospheric pressure is ideal for my body, especially if the humidity is below 50% (20% is excellent!).
Sadly, all the places in the U.S. that seem to offer this ideal climate for me are places where I can’t find work so moving to one of these locations isn’t an option right now. I own land in the Nor Cal town where I happen to feel my best, but I need to build an house on it some day when I can afford it. Unfortunately, there is no way to pay for it with the lack of employment opportunities up there (mostly retirees) so I’m stuck between a rock and a hard place for now until I can figure out a solution. Of course, as we all know, figuring out stuff like this when you have chronic pain, and/or chronic fatigue, is nearly impossible. My cognitive functions aren’t good enough right now to stay focused on a solution. Such is life with FMS/CFS.