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Originally Posted by mandagrl1
IDo you find that the weather has any effect on your FM? Right now we're thawing from an ice/snow storm and I wonder if this bone chilling cold weather isn't making it worse?
OMG, Absolutely. Weather changes are my biggest trigger (at least the biggest factor that I have no control over). Sleep deprivation and overexertion probably play a bigger role, but I've learned to manage them well with with medications and with self-care routines. So Weather is now my worst adversary.
Cold, damp weather, if it's consistent actually is less hard on my than a dramatic change in the weather. My pain levels are elevated during cold, damp weather, but not as dramatically as I experience with weather changes. So even when the weather dramatically improves, my symptoms will flare until the weather stabilizes. I dread weather changes more than I do bad weather.
Hubby calls me a better weather predictor than the tvf weather man. One really dramatic example this summer. We were visiting MIL for a cookout, and I was feeling awesome. A couple hours after eating, I felt dramatically horrible. My joints were hurting, I wasn't just foggy, I was slurring my words and I felt nauseous and dizzy. It was so dramatic I got panicky. I wanted to be home in my own bed immediately. MIL wanted be to lie down in the guest bedroom, but I just wanted to be in my own bed, so we drove home (about an hour drive).
When we started home, the sky was bright, the temperature was comfortable, but about twenty minutes into the ride home, the sky started to darken, and hubby said "oh, now we know why you were feeling sick," but we didn't know the half of it.
I couldn't keep my eyes open during the drive home, and I was undressed and in bed five minutes after we got home. Just as I crawled into bed, golfball sized hail started falling. It wasn't just a storm following us home, it was a tornado (we learned that about 10 minutes after we left, it started raining and hailing at MIL's).
We probably should have stayed at MIL's house. Hubby said the next time I get that dramatically ill (fine one minute, incapacitated the next) that we really need to check the weather radar before deciding to get into the car to drive home.
Quote:
Originally Posted by mandagrl1
Also, what tests did you have done before your Dx? He had bloodwork and 2 nerve conduction tests. At the last one, they mentioned another test that involves touching his muscles with a needle? Apparently they weren't sensing a reflex in some places where they were testing the nerves. He's terrified of needles though (literally-if he get's a shot or has blood drawn he either throws up or passes out cold) and it's done while awake, so he's a bit EHHHH about it.
Thank you all again! This helps me SO much!
One thing to remember, is that it is essential to rule out everything else before diagnosing fibro, but not all doctors do. I thought I'd been tested for everything under the sun, and when we moved to WI, I was referred to a neurologist and he was horrified that I had not been screened for narcolepsy, brain tumors, MS brain lesions, and early-onset Alzheimers (that I hadn't had an EEG or a brain scan). After those tests, he concluded I did have fibro, but at least the others were ruled out.
Depending on the symptoms not everyone needs the same tests. Because my pain was more easily controlled than my fatigue, doctors were exploring the cause of the fatigue more than the pain.
I didn't have nerve function tests or anything involving lots of needles (thankfully, I'm also needle-phobic. For me one shot is fine, but if blood draws are prolonged or if I'm getting multiple needlesticks I also pass out).
I had so many tests, I don't remember them all. It was also hard to sort out the multiple diagnosis. Which tests I had for fibro and which tests I had that turned out to be the other issues I had (COPD, sleep apnea, autoimmune disease).
Make sure they tested for Lyme disease (I was tested three times for Lyme, just because the test can be somewhat unreliable, from what I gather).
If at all possible, I highly recommend a sleep study. My sleep study found sleep apnea (which resolved after I lost only 35 lbs) and periodic limb movement (Without mirapex, I thrash around horribly when I sleep. Hubby would end up with bruises). Also, I was spending virtually no time in the deepest stages of sleep, almost no REM. I couldn't believe this, because I dreamt alot, but the doctor told me that remembering a lot of dreams was actually a sign of poor REM sleep, because if I slept through REM I wouldn't remember as many dreams. It's only when you wake during REM that you remember your dreams. I thought I was dreaming a lot, but I was just getting woken up during the dream.
If you deprive rats of REM sleep long enough, they die of immune and autoimmune disease (my autoimmune disease doesn't seem like coincidence anymore).
Sleep anomalies are very common in fibro and cfids (many doctors believe fibro and cfids are actually the same syndrome), especially ones that involve waking frequently and insufficient deep sleep. It's hard to address some of the issues, because sleep studies are expensive, and usually when they're covered by insurance there's a limit as to how many or how frequently they're covered.
The meds that helped me the best were the ones that helped me get good, deep rest. Amitriptyline (which isn't used as an antidepressant very much anymore because it causes drowsiness, but that's perfect as a sleep aid), cyclobenzaprine (a muscle relaxant that helps prevent the severe pain and numbness that woke me in the middle of the night), mirapex (to address the periodic limb movement - without it I thrash around so much hubby gets bruised), fish oil, folic acid and vitamin D (ask your doctor first, because supplements can interact with meds), caffeine (only during the day).
And I use tramadol for pain.
Another tip that has helped tremendously is a sleep mask. I read that people get deeper sleep with a sleep mask because it blocks out more light, so I tried it (I was skeptical), but I do sleep deeper and longer and with fewer wakings with the sleep mask.
Warm water exercise programs are great if you can afford and find them. If you're interested, contact the local Arthrits foundation or department on aging or United Way, if you're interested. They can help you find the nearest program. You can also call local indoor pools and see what temperature they keep the water (83 to 88 degrees is ideal).
Geez there are so many tips. You can browse the fibro threads here and probably find all sorts of tips. This is why the local fibro support groups are so helpful, you hear all the strategies other people have found helpful.
There are some very good books on fibro, but two I highly recommend are
Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland
Fibromyalgia Advocate by Devin Starlanyl
They're written by a doctor who has the conditions she's writing about (and was on disability until she was able to get her symptoms under control).
I've read tons of books on fibro, but these are the only two that I've purchased. The author is a bit too open (in my opinion) to unproven therapies, but I can't really argue with the "some people find this helpful and it's worth trying" approach.