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Fibromyalgia #178

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Old 11-18-2008, 05:03 AM   #1
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Old 11-18-2008, 08:21 AM   #2
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Good Morning everyone!

My husband just left to take a friend without a car to work. My head feels like it's going to explode. I'd be in bed, except I think being upright takes a little of the pressure off my head and will maybe allow the sinuses to drain.

It's only 14 degrees outside, and the thermostat says 75 in here, but I don't trust it. (Why do you think the temperature OUTSIDE always affects me so badly regardless of the temperature inside - how do my bones know it's 14 degrees outside?)

I think my husband is "catching" fibro. He has his own pain issues - a bad shoulder injury, osteo arthritis, ad a degenerative bone and joint condition put him on disability about a year after me. If he continues to follow in his mother's footsteps (he inherited the bone and joint disease from her), he's in store for multiple joint replacements before he's 60 (his mom has had 3 hip replacements, a wrist replacement, and both her knees need to be replaced - she's in her early 60's and looks at least decade younger. Just another one of us who "doesn't look sick.")

Anyway, the reason I say my husband is catching fibro, is although he's always had pain issues, season and weather change never bothered him any more or less than any other time, but a lot of the things that bother my fibro are now bothering him. I've been weather-sensitive (with my sinuses at least) all of my life, and I'm not sure if it's barometric pressure changes or temperature and humidity changes, but hubby says I'm more accurate than the weatherman when it comes to predicting a storm 24 hours in advance. Now hubby has become just as accurate a weather predictor, and on my weather flare days - he's flaring too (You can imagine how pleasant two people in severe pain and fatigue are, especially with no one able-bodies person to help out).

Sorry, I'm starting to moan and ramble. My point in posting here was to ask if everyone else is this weather-sensitive and if you've found anything that helps you get through weather change and winter itself. Generally, once it gets cold and stays cold, I feel a little better, but winter is generally **** for me.

Hubby (since he now understands what winter and weather changes are like for me) and I have been talking about selling all of our stuff and moving into an RV full time to follow our comfort zone, or ride around and experiment until we find a place we're semi-comfortable all year. Any snowbirds or RV full-timers out there, what special challenges does the fibro have? Are we nuts? (Well, the general answer to that is an obvious yes, but I mean specifically about the RVing).

This fall/winter has been so horrible, I'm ready to leave today (not happening, but I'm getting desperate. I used to enjoy winter and now I'm dreading for the first snow to stick - we've already had several days of snow, but no accumulation on the ground yet).
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Old 11-18-2008, 09:14 AM   #3
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Yes, kaplods...my FM is very weather sensitive. I am fortunate to live in Florida right now but even when we have a cold spell, such as we are right now, I get achy all over...especially the outside area of my hips, shoulders and neck area and ankles. The only thing that helps me is to maintain pain management (Tramadol and Advil) on a regular schedule, stretching, and keeping the areas warm with a wrap up in my down comforter at night. Not a fun situation but I won't let it get the best of me. I should make a visit to my chiropractor but hate to spend the money for short term relief. Good luck...Kate
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Old 11-18-2008, 10:26 AM   #4
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Thanks Kate, I don't know where I'd be without my tramadol. I'm at the maximum dosage of eight 50mg tablets a day. In the summer, I can get away with 5 or 6, and occasionally 4. I can't take any NSAIDs, so I take tylenol and fish oil capsules (I started taking the fish oil when I found out I couldn't take NSAIDS because they were causing asthma symptoms - going from prescription relafen. Fish oil has some anti-inflamatory properties, so I figured it couldn't hurt. It's helped alot, but it took time to get used to being off an NSAID).

My husband and I are sharing an electric throw. I go to bed earlier than he does, so I get the blanket until he comes to bed, and by that time my comforter is warmed enough, I'm pretty comfortable. Still, tomorrow is payday so we're going to buy me my own electric blanket. His legs and hips bother him, so the throw is large enough for him, but since my whole body hurts, the full electric blanket will be an improvement.

I try to stay active, but in the winter it's a lot harder. The warm water therapy pool is great, but finding the motivation to go swimming in the winter is a challenge. Being in the pool is wonderful, but getting out, getting dressed and going back out into the cold to go home is daunting. If I ever won the lottery (not going to happen, since we don't play, but maybe once a year), I definitely would get a heated infinity pool - and live in it.

If I can keep myself at a comfortable temperature, I can stay pretty comfortable. But the difference between comfortable and too hot or too cold is so small, finding that comfort zone is a challenge. If my bed gets to warm, I have to get out and let it cool down. I feel like Goldilocks, except trying to find "just right," isn't a matter of only three attempts.


Did you see the movie Twister? I told my husband that if we could use the RV to follow my comfort zone - we'd probably have to become weather experts, and instead of storm chasers we'd become storm evaders. I can just see us with all of the sophisticated equiptment the stormchasers in the movie had - "stormfronts moving in, no time to waste, we've gotta go."

Sleep deprivation, weather changes, and refined carbs are my three biggest flare triggers, in approximately that order. Diet is the easiest (at least in theory) to control, sleep I can control somewhat, but weather is the only flare trigger that's completely out of my control. Sometimes I feel if I could control that, I'd be able to get the fibro into remission, or at least under control to where I could go back to work (of course finding a job that allows me to travel to good weather might be a challenge - maybe I could become a travel writer).
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Old 11-18-2008, 11:03 AM   #5
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Good morning Kate and Kaplods. RVing sounds like fun, but I don't know if I would like to live in one 24/7. My brother and his wife did that for a few years, leaving Alberta (Western Canada) to go to Arizona for 6 months of the year. Now, they have bought a condo at home, and have a modular home in Yuma, and they spend 6 months still in each place. Following the weather could be quite a journey, as it seems there is NO perfect place.

I am very weather challenged as well. Every since I had back surgery, 30 years ago, I can tell when the weather is changing. Both OA and FM do that for me. OA causes my joints to hurt terribly and my lower back and FM causes my body to feel like it is encased in cement and it just does NOT want to move. Also, of course, all the aches and pains that come with both. I usually do wonderfully well in the winter, as here in Alberta, it is cold and dry. However, we are still in the transition, and today my hands feet and arms are very achy, and my lower back is killing me. It is foggy out, so there is moisture in the air and that = pain. I don't mind 20-30 below zero, because the pain levels stay low, and of course, being raised here, I do like winter.

Mima - glad your feeling better and getting back into doing the things you enjoy. Also, happy you found the clothes you were looking for. That could be a real challenge.

Joanne - I hope you get to go to your daughters for Thanksgiving. I have never NOT seen my kids even for 1 month - hmm, I think they or us, are spoiled

I have never had a colonoscopy. They don't normally do them here unless they suspect something is wrong. We are stuck with doing the Occult Blood test instead. That's the one with the little card, and you have to diet for 7 days, and then give a stool sample for the next 3 days. It is a smelly card, to say the least. I guess I did have one 30 years ago, but it turned out to be an diagnosis of IBS.

Hi Candice - hope your feeling much better now.

Meme - where are you? Hope you are also doing better.

I have a slight sinus headache going on here today. I hope it doesn't escalate. I hate allergies!

Everybody have a great day.
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Old 11-18-2008, 01:25 PM   #6
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R.V. living would not be a place for me.. I need my space. My brother and daughter have one. He travels more than she does. He is retired (army)and she is a teacher. She can only go in the summer or weekends.We need our own bed and living space.
I ache more as the weather changes..
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Old 11-18-2008, 08:05 PM   #7
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Oh big time, Anne, on the non-movement and cement body cast! The cold weather makes my body feel like it is frozen...kind of like your hands and face feel after walking when they are cold. The body just doesn't want to function! The warmth is a definite plus where I live but the downside is the concrete floors. No "give" here in Florida...everything is concrete, no cushioning, and it wrecks havoc on the joints. You have to be mindful of wearing good shoes all the time or suffer the consequences.
Kaplods...when I was first diagnosed with FM back in 1980's, they thought it was directly related to my sleep disturbances. Not only do I have sleep apnea (which I now sleep with a CPAP machine at night) I also owned and operated a specialty bake shop and was up every morning at 3 am to "make the donuts" so to speak. The doctor thought perhaps I was interupting a crucial part of my sleep rhythm and that was a key factor in my FM. I compensated for this for 5 years by having massages 1X a week and being faithful to osteopathic manipulations. I did really well for a number of years but since moving to Florida 5 years ago from a New England coastal town, it came back with a vengence. I had hoped that selling my business in New England after 25 years of 3 am baking and being on my feet 15 hours a day would alleviate the problem...nope....worse than ever and now I take the meds to keep me sane. I wish I could say that the South Beach Diet has helped with some of the symptoms by eliminating the refined stuff from my diet, but alas, not so. These past few days of cold weather here (40's) have been brutal and we have one more night of real cold in the forcast. Hopefully after that, things will warm up and I can find some relief. I also take fish oil caps, 4000 mg a day, to not only help the FM but to stabalize my cholesterol. This dieting is hard work, yes??? I hope we all get to that "comfort zone" soon. Off to wrap up in the comforter, folks! Have a great evening everyone!
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Old 11-18-2008, 08:14 PM   #8
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Joanne, I missed your post....good luck tomorrow with the colonoscopy. My husband says it's a piece of cake!!! And he's a big baby with that stuff so be assured he's telling it straight. I wish I could just make the appointment and get it over with but being the wimp that I am with doctors and tests.....next spring.....next spring......next spring.
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Old 11-18-2008, 08:33 PM   #9
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Yeah, I really wonder whether the fibro for me is a result of years of accumulated bad habits, especially regarding sleep. I always worked more than one job, years of swing and double shifts.... While there are signs that I might have even had fibro as a kid, the burning the candle at both ends in my 20's and 30's, probably did the most damage, and ended me here on disability.

One thing I found interesting is the research on fibromyalgia and alpha EEG anomaly. Basically, this means that deep sleep is interupted with brain waves that are associated with being awake (and yet sometimes the person seems to still be asleep). All of my life, from earliest childhood, I've been able to control my dreams to a certain extent (what they call lucid dreaming - knowing you're dreaming and controlling the dream while you're in it). I didn't know what it was until I learned the term in college - but even dreams that should have been nightmares didn't seem scary to me as a kid because I would "redo" the ending. I also had one experience with sleep paralysis (where you continue to dream as you're awake and usually feel someone is in the room with you - this is a possible explanation for many alien abduction experiences - or visits by dead relatives or demons).

My husband suggested that this might mean that I have ALWAYS had the alpha EEG anomaly. I'll have to ask my neurologist, because his specialty is sleep disorders. His theory that many, if not most cases of fibromyalgia are primarily a sleep disorder. He said in studies of sleep deprivation, sleep deprivation causes fibro symptoms in normal folks. Sleep dep studies aren't done very much with people, because in animal experiments, sleep deprivation causes immunity and autoimmunity problems and ultimately death (I have immune and autoimmune issues - so I find this pretty scary - if we can't "fix" my sleep issues, could it cause my death? I also had apnea, but since it was resolved most of my immune issues seem to be resolving).

I find fibro fascinating, although since it's happening to me it's not as much fun as if I were studying a disease that happened to somebody else (ideally no one I knew).
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Old 11-19-2008, 06:54 AM   #10
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Hi-What is Tramadol? I have an appt with rheumo in a month-neeed some meds. My back hurts so much.
I just love living in FL in the winter-I do think my pain would be worse in MA.
And the pool and hot tub is next door.
Prep day for colonoscopy-had dreams about it for the last 2 nights. Nightmares.
Foot is getting better.
Anne-did you add the sticky? I didn't know how to do that.
Hi to all. Mima
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Old 11-19-2008, 09:20 AM   #11
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Good morning all....and Mima, Tramadol is a codeine based analgesic that is less habit forming than some of the other heavy duty pain meds. Sometimes it is dispensed with acetominephen (Tylenol) added to it and called Ultram. I take mine with a side order of ibuprofen (Advil) because Tylenol doesn't work for me. While it doesn't knock out the discomfort totally for me, it does offer some relief when I take it with advil. I was given Gabapentin (Neurontin) in the beginning which is an anticonvulsive but is also used to treat certain types of nerve pain. It has the same components as Lyrica but has not been approved by the FDA for use in treating FM. I didn't like that medication at all....I became very agitated on it so my option was the tramadol. I'm not sure if rhematologists use this in their treatment protocol...I would be interested to know what yours says about it when you go, okay? Just for comparison Kaplods, how many "trigger" spots did they find with your diagnosis of FM? They found way too many on me...probably even some new ones for the books! On another note, the temps went down to low 40's here last night with a wind chill of 38. Enough is enough, thank you....it's time for some balmy breezes and sunshine!! Hope everyone is having a good week so far, especially Joanne who is, at this moment , probably in la-la land with her colonoscopy. Will check back later.
Kate (p.s. The big white dog avatar is my Great Pyrenees "Queenie". What a character she is.....rescued her 3 years ago.)
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Old 11-19-2008, 09:27 AM   #12
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Am I getting these colonoscopy posters mixed up?? I keep thinking today is Thursday and it's only Wednesday so it is Mima I should be offering good wishes to for tomorrow!! Sorry Joanne, do forgive my confusion and Mima... Good luck tomorrow!!
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Old 11-19-2008, 09:52 AM   #13
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Hello Everybody- Today is prep day. Tomorrow is "D" day..
Chilly here today. Hubby complaining about heat running.. He sees dollar signs..
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Old 11-19-2008, 02:48 PM   #14
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Hi everybody. For me, today is a low pain day, and a high fatigue day (just can't wake up, so hard to think straight). As much as it's great to not hurt much, I much prefer the pain to the cognitive stuff - pain I can "suffer" through, but I feel so non-human when I can't stay awake and can't think. It just seems like my life is slipping through my fingers on these days.

Kate - I've had several doctors diagnose or suspect the fibro at different times and usually score on 16 or more of the trigger points. I clearly remember one appointment. It was a cold and rainy day, and I had gotten three late night and early am calls for work (I was working a job with 24/7 on call responsibilities), so I hadn't slept much at all the night before - and everywhere the doctor touched (even the skin itself) hurt like mad. She said that I had severe reactions to ALL 18 trigger points (she was pretty rough, though). She did mention that she considers the lower back (the small of the back) another set of trigger points - and that I had a reaction there also.

The hip trigger points are not always sensitive, and I would say give me the least amount of trouble. The neck and upper back are almost always sensitive but to varying degrees, and the knee and elbows are usually the worst. I don't know that my elbow joint has ever been pain-free in the last ten years. I don't remember the doctors ever handling those joints without intense pain (some doctors really squeeze so hard the joints will burn the rest of the day). I do notice that some doctors try to be really careful and press slowly and carefully just enough to know when you feel the ache and others want to see you jump - I guess to make sure it's a real pain response - I hate those guys, because I end us the rest of the day feeling like I'd been hit by a truck.

Have you ever had the whole skin hurt - sort of like it sometimes does when you have a really terrible flu or are starting to heal from a sunburn? When I'm hurting, it often helps if my husband will rub my back as a distraction (it's not really a rub, because he has to run the fingers ever so lightly over my back with no pressure at all, his fingers barely touche my back at all, it's more like running a feather over my back), but more and more, I can't let him even do that, because the skin hurts too much. It really seems to scare him - I think because it makes him think of me as so fragile I'm going to break.

The rheumatologist that spoke at our local fibro support group, said that she doesn't believe in using trigger points as a diagnostic criterion, because the people who developed the trigger points were doing so not as a diagnostic criterion, but to decide who to allow into the research studies. In other words, they knew that if the person had 11 of the 18 trigger points it was unlikely that they didn't have fibro. People with fewer than 11 could have fibro, but they wanted to err on the side of including only people who would be the best examples of a moderate to severe case of fibro. She says she's met people with fibro who normally had few of the normal trigger points, but had only the "sun burn" skin feeling or the sore, overworked muscle feeling.

I wonder whether these are subcategories of fibro, or different manifestations.

The thing is some of the fibro symptoms, I seem to have had since childhood. I was diagnosed with nonspecific colitis in high school (which would today be called IBS), and had very severe monthly menstrual cramps from the very start at age 10. Also from the age of 10 or 11, when my grandmother would hold my arm for support (she was shorter than I) I would experience severe sciatica (although at the time, I didn't know what that was - all I knew was that I hated having my grandmother hold onto me when she walked, because it hurt and my mom didn't believe that it hurt, she thought I was just embarassed).
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Old 11-19-2008, 03:02 PM   #15
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The rheumatologist that spoke at our local fibro support group, said that she doesn't believe in using trigger points as a diagnostic criterion, because the people who developed the trigger points were doing so not as a diagnostic criterion, but to decide who to allow into the research studies. In other words, they knew that if the person had 11 of the 18 trigger points it was unlikely that they didn't have fibro. People with fewer than 11 could have fibro, but they wanted to err on the side of including only people who would be the best examples of a moderate to severe case of fibro. She says she's met people with fibro who normally had few of the normal trigger points, but had only the "sun burn" skin feeling or the sore, overworked muscle feeling.
The diagnostic criteria for a lot of illness are exactly like that. They are taken from the inclusion / exclusion criteria of studies. This is particularly true for illnesses with diagnoses that are otherwise rather subjective or inconsistent across different physicians and regions. It's quite a valid caution. But there's often not much else to use. And they do provide some place to start from. The bigger problem with any guideline, regardless of how it's derived, is that the physician still has to be able to approach each patient individually. Guidelines can't cover every situation. In particular, they can't cover all the endless combinations of comorbidities and medications that real life patients have. Sometimes it's the physician who isn't making that effort to individualize. Sometimes it's outside pressure to conform to accepted guidelines (from insurance companies re: payment of patient bill and compensation to the physician; and fear of being considered substandard in a lawsuit).
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