(caution bit a rant ahead)....do you believe that it can be worked through? I am the first to admit that fibro comes in all levels of impairment but, I belong to a fibro group and these women have the energy to shop, to lunch, to go to Mexico, but are always saying they can't work out, or work. I just don't get it. One goes to Vegas regularly and seems to have the energy to gamble and see shows.
I hear about how they sleep in until 11, and the meds that they take, and the...blah blah blah... but I never hear about anything they are doing to really try to improve the situation. I try to talk about nutrition, or supplements or exercise and I just get the impression they have no desire to improve because they aren't that bad in the first place!
I have fibro, arthritis, chronic back pain, depression, IBS and a bunch of other stuff but the funny thing is that if I were asked "so how is your health?" I would say, "Pretty good". BUT...I don't stay in bed unless it is absolutely the worst of days. I try to watch what I eat and eat a highly anti-inflammatory diet. I try to work out. I am thankful in knowing that fibro at the level you have it is just as bad as it is going to get..it isn't a progressive syndrome..and I would rate myself at a 5.
Have any other women with fibro had this experience? I sometimes feel, based only on the women I have met in my area, that some do use fibro as a huge excuse for everything, thus invalidating the debilitating effects that this syndrome can have in its most severe forms. Some show up for our educational segment once a month..the rest of the month the group is an excuse to lunch on Tuesdays!
To validate myself, I was diagnosed by an expert in the field. I have ice packs and heating pads, depression and sleep disorder, IBS and fibro fog..(I just typed gof instead of fog..there ya go). I have days I just want to pull the covers over my head and cry, but usually I get my butt out of bed and try to accomplish something. I am so tired of seeing these women! They are starting to p** (I guess TICK would be more polite ) me off..they seem to want to complain more than truly develop a plan to assist themselves. And if they can go to Vegas and have immaculate makeup, and do all the stuff they say they do...I am wondering about their diagnosis in the first place.
Thanks for listening..would be interested in some input!
08-16-2008, 09:28 PM
I have fibro with fog, IBS, a sleep disorder (I don't appear to enter the deepest stage of sleep), arthritis, and an autoimmune disorder attacking my sinuses, nose and ear cartilage, and lungs (possibly in remission).
As for fibro not being a progressive disease, that means it does not have an inevitable pattern of increasing structural damage (in fact, there's no structural damage that can be detected). However, that does NOT mean that the level you have it is just as bad as it is ever going to get - it means that your symptons COULD get better, stay the same, or get worse - or may cycle AND physical damage does not appear to be occurring. You could experience a spontaneous remission, or you could experience a dramatic worsening. You may be able to discover variables that tend to cause flares, or you might not be able to discern why or when they're going to hit or how badly.
I'm currently on disability because the fibrofog and fatigue got so bad I couldn't work. I was a computer programmer (before that I worked in social service as I have my masters' in psych, but I retrained in computers to get a desk job as I couldn't handle the traveling required for my research job). I'd stare at my computer screen and not even be able to decipher my emails, as I would read and reread and still not retain information (reading computer code was a nightmare - actually it was just impossible, forcing me to try to cover the fact as long as I could, that I just couldn't do the job). I'd work 8 hours, and sleep 14, on weekends I'd sleep more (and I'm not talking about depression, "I don't want to get out of bed," sleeping I'm talking unconscious sleeping). It wasn't unusual to sleep 18 - 20 hours on the weekends. My husband had to drive me to work, because I would fall asleep in the car on the way to work. My short term memory became so impaired, that I nearly burned down the house several times leaving things on the stove, and I would not remember conversations that I'd had with my husband or boss. I knew there was no reason for them to lie about having had the conversations, but I had NO memory of them. I was getting paranoid that they WERE lying to me, or that I was going insane. Thank goodness the neurologist I was sent to was a fibromyalgia/sleepdisorder/dementia expert. I'll tell you though, having "dementia" listed as diagnosis at 40 years old, is probably the most frightening and disturbing experience I've ever had. I think the weight loss is helping, though the neurologist says the research studies seem to indicate that weight loss or a specific diet does not seem to be associated with improvement in fibro symptoms, though regular exercise does. At any rate, while I've gotten MANY of my symptoms under fair control with diet and exercise, I still don't drive, I'm too afraid too, as I don't trust myself to know when I'm prone to fall asleep or get confused by the cognitive impairments. For someone who is eligible to join Mensa (my 1983 ACT score makes me eligible), losing my mind and memory is the most terrible part of this.
With fibro, you can feel perfectly wonderful one day, and feel like you have a bone-crushing flu the next. It's hard enough having friends and loved ones question whether you're really as sick as you say, let alone getting those accusations from someone who shares the disorder. I'm not saying that some people do not exagerate their symptoms, or fail to help themselves as much as possible, but on the other hand - it's very easy to misjudge another person's life, especially a person with fibro. I've had more than enough of accusations when I don't attend a family function that.. WELL! I attended so and so's function, or spent two weeks visiting MY parents, or I could do one something therefore I should be able to do one something else....
Yes, I spent two weeks at my parents home, and I'll never do it again (the 2 weeks, not the visit). I could barely walk at the end of the trip because I was not sleeping in MY bed. For me, I've learned that dramatic barometric pressure changes (storm fronts and sudden weather changes) tend to precipitate a flare. My MIL (no matter how many times we explain this to her) gets very upset if I don't attend a function because of a weather change IF the weather changes in a "positive" direction. She thinks I "feel bad when it's raining," implying mostly that it's in my head, and if the weather "improves," so should I.
Sleep is very important to my not having a flare. Insomnia or changing my sleep pattern tends to cause a flare, as does not eating well. If I take care of myself carefully, I can often get the flares under control to where I CAN take a trip, especially if I judiciously use the Provigil my neurologist prescribed (an alertnes drug, that helps the fatigue and fog). However, I pay for it with a KILLER flare usually when I get back. But, you know sometimes it's worth pushing myself in order to have a life. Today I went shopping with my MIL for her wedding next month. We did a lot more walking than I'm used to, and more importantly we didn't get back when I expected to take my afternoon pills and nap ontime. I'm feeling it now, but for crying out loud, I can't miss out on EVERYTHING.
Regular exercise, research proves, helps control fibro symptoms, but people often have a hard time learning HOW to exercise. They overdo it, have a flare, and then decide they can't exercise. You've got to start slow, add slowly and learn what your body can and can't handle. And you're still going to have days when you over do it, and suffer as a result. Sorry, that's life, and yet I understand why some people THINK they can't exercise, they've tried it and had disastrous results. I always recommend warm water exercise, and I love my areas warm water therapy pool which has a fibrocise class.
Can it be worked through? There really is not a yes or no answer that applies to everyone, it's a maybe or sometimes. I can "work through" the fibro to a point. If I fight the fibro too much, and don't rest when my body says rest or otherwise try to "swim upstream," I can end up with a KILLER FLARE in which I feel like I have a terrible sunburn, the flu, and was hit by a truck all at once, where every centimeter of skin and muscle hurts to where even a sheet is unbearable.
I don't know what these other women's flares are like, how often they have them, what precipitates them, or how hard they are trying to find methods to control them, but I don't judge anyone for it, because I'm so darned tired of it being done to me.
08-16-2008, 09:35 PM
I didn't want to seem harsh, but it is just interesting to me that it is the same women who always seem to be having no symptoms every Tuesday between 1 and 3 to be able to go to lunch. DO I think they are just "masking" in order to be able to go out to lunch...no...cause if symptoms have really hit..you can't mask them. Yet week after week they have never had ONE day in which they feel they could exercise or investigate anyting that would help them! But I hear..we went to London shopping, we went boating, we went to dinner, we went to the movies, we are going to Vegas, we are ...we are..AM I MISSING SOMETHING HERE? :?:
08-16-2008, 09:53 PM
Hello! I too have fibromyalgia, osteoarthritis in the knees and lower spine, and depression. Not sure what else. I have to agree with you on your many points. I do much better now with my medicines than before I was diagnosed in 2004. At that time, I could barely move. I missed many days of work because of it, and yes, I did pull the covers over my head and cry. There were days that I had to have help to get out of bed to even go to the bathroom.
With the meds I am on, I am not totally pain free, but I am doing so much better. I do go places. I shop, eat out, travel...BUT I have to rest all the time. If I am having a bad day, I stay home. When I am out with friends, they know when I have to stop and rest.
I take classes at the local YMCA. I have been taking water aerobics classes for about 2 1/2 years, and they have been wonderful for me. We usually go in the whirlpool afterwards too. In April of this year, I started an aerobics class. I used to take several classes a week about 6-8 years ago, and when I started aching so much 4 years ago after a fall, I didn't think I would ever exercise again. In the class that I started in April, the instructor encouraged us to do what we could. She would show us different ways to improvise. Because of her encouragement, I signed up for the class during the summer, and I have just signed up for the session that begins in September. I have missed a few of those classes on some bad days, but for the most part I have been there doing what I was able to do.
I retired from teaching 1 1/2 years ago. The last few years of teaching I kept a heating pad in my classroom. I also had a small refrigerator and kept ice packs there. My students learned quite a bit about fibromyalgia those years! The very last year I taught, I only taught 3 days a week. Instead of having a regular elementary class, I tutored small groups on the days that I was there. We had it worked into my schedule that if I needed to rest, I could go to the clinic. Also, if I was having a bad day, I would call in and tell them and I would make up that day later.
My family doctor had run numerous tests and kept coming up empty handed. I was finally referred to a rheumatologist, and the first day I met with her, she knew by watching me walk and just by touching my shoulder what was wrong. I have been taking relafen and flexeril since then. My family doctor had tried me on celebrex, but that did absolutely nothing. The rheumatologist tried me on cymbalta, but I had problems with that one. At times if the back pain is intense, I will take 1/2 of a vicodin to help with the pain. I hate taking a whole one.
I do know of people who are able to do more than I can with fibro, but I also know some who have it much worse than me. I think we all take to the diagnosis differently. I'm sure there are many who do use it as an excuse not to do things or to complain. I think that's true of many medical conditions and the person who is affected by them.
I know saying to ignore those people is easier said than done. It is so hard to do that. Just keep in mind that you are doing what is right for your condition!!!!! Keep the faith!!!!
08-16-2008, 10:44 PM
It is difficult to ignore those you think might be exagerating their symptoms, because you do feel that it makes it harder than the people with "real" fibromyalgia.
But, I bet I could probably name a person in my life who has never seen me in a flare. I'm not really surprised that they question how sick could I "really" be. I've had people actually ask me how they can "play sick too," to get on disability for fibromyalgia like me. Man, I wanted to clock them.
Could a person be masking, or just never have a severe flare on Tuesday afternoon. Maybe. I've missed a few of my TOPS meetings (on Monday nights) due to flares, but not many, and even when I'm in extreme pain, I laugh and joke and no one would know I'm hurting (because for two hours, I can pretend and act "as if" I'm fine). On Mondays I take it extra easy so that I will be fine for my Monday night meeting. I do stretches, but no real "workout." In fact, usually I take it fairly easy on Sunday too, in order to rest up for Monday night. My swim afternoon(s) are usually Tuesday or Thursday and hubby and I are planning on getting back to volunteering at the humane society on Wednesdays (he can't walk the dogs with me, but he grooms the kitties while I walk).
I'm not saying these women's complaints are completely legitimate, I'm just saying it is impossible to tell. You don't know what kind of accomodations they are making to fit lunch and travel into their lives. Not being able to "work out" or exercise, probably means they don't know how to exercise properly with fibromyalgia. When I was first diagnosed, my rheumatologist told me to exercise, especially to swim. I was doing so, but was having problems doing it in a way that was manageable. I was still trying to work, and I was just so fogged up and fatigued it was hard to push myself to exercise, and when I did, I was overdoing it and having rebound flares. So, I got out of the habit, and made all of the excuses to my doctor that these ladies are (now I wasn't world-traveling, I will admit).
It's incredibly irritating when people don't take good advice. Especially when they then gripe about things you know are the result of not taking that good advice, but I wouldn't necessarily assume that they don't "really" have fibro or aren't experiencing painful, legitimate flares. If anything, if they're not taking care of themselves, they're probably experiencing more pain than they have to if their diagnosis is at all legitimate (and as diagnostic tools get better, it's getting harder and harder to "fool" a doctor into thinking you have fibro if you don't - not that it couldn't be possible).
However, if they have their fibro SO under control that they can travel regularly and flare so infrequently, they may be complaining about not being able to exercise, but I'd suspect they could be exercising and not be aware of it. If they're traveling, and definitely if they're shopping, they may be doing a fair amount of walking.
I know my first attempts at "exercise" where short shopping trips. Instead of using the carts at Walmart, as I first had to do, I started shopping smaller stores so I could walk, and eventually was able to walk Walmart and finally even for short periods the mall (today I was able to shop four stores with MIL and SIL, before having to have them drop me off at home). I didn't call it exercise, but it was what I was getting. I suppose someone could say "how could she have fibro, if she's shopping at the mall."
I can go to lunch and other short 1 to 3 hour outings almost any day I want, and look "fine" (except to my husband, he always knows when I am "faking" feeling ok). Sometimes I have to sleep until an hour before then get to bed as soon as I get home. If I want to do something for an entire day, I can sometimes drug myself up to be able to do what I want (a cocktail of tramadol, tylenol, caffeine and provigil will usually do it, with some non-mint aspercream on the joints as a backup). But no one at the lunch or event (except as I mentioned, hubby) would suspect that I was in pain (though they might think I was drunk from the fibrofog as my speech will even slur).
I think I could probably go to Vegas, and possibly a cruise very easily, because all of the entertainment is in the hotel. If I took my pillows and my temperpedic mattress pad (that would be hard to pack, I'll admit), a heating blanket... I could probably do no worse than at home. I'm not much of a gambler, but I could do things in short bursts and never get too far from the room (I was watching on the travel channel that Vegas hotels have the largest number and best equipped handicapped rooms. Yes, definitely if I could be comfortable anywhere, Vegas might be at the top of the list). Also, damp and cold tends to trigger flares for me, the dry heat of the dessert might actually help (one of my doctor said that many people do experience a termporary improvement in both my allergies and fibro pain when they move to the southwest - but they usually return in full force eventually).
Maybe these women are mostly annoying because they're complaining about how much pain they're in, when you're not. That I definitely understand, as anyone who complains more than me annoys me, and anyone who complains less than me is probably annoyed by me. Pain and complaint are not proportional. Some people find fault with EVERY suggestion you give them and whine and complain about every little inconvenience in their lives, when others wouldn't complain if a dagger was sticking out of their eyeball.
Maybe their complaints aren't proportional to their pain. Maybe they like to get alot of attention because of their pain. Maybe it's just nice to complain to people you think will understand, because you don't want to complain to family and friends who may not understand. I know when I first joined a support group, I talked and talked and talked (hard to believe, I know since I'm so reluctant to share my thoughts LOL) and complained and complained and complained. In fact, I ranted and raved, and raved and ranted... because I didn't know how to cope with this stuff at all (especially the falling asleep and memory and fog issues). I could handle pain, and didn't complain alot about that (though I did some) but I couldn't handle not being awake for my life and not remembering the rest of it and boy did I complain about that. I'm sure the rest of my group was tired of me complaining about it, especially since I know I kept repeating how smart I used to be, and now I'm an idiot who put a box of frozen fish sticks in the pantry cupboard and drove home to the wrong apartment (one I'd lived at a year before).
I don't know whether your assessment of these women is correct, or skewed because you've never seen them in a flare (or never have knowingly seen them in a flare) or whether they're just a nuissance because they complain all of the time (maybe they need to). I don't know, just thought I'd share my viewpoint of what could be the other side of the story.
08-16-2008, 10:52 PM
Kaplods, I fully respect and understand your replies to my post. You have given me some very important things to think about. I think I will definitely cut them so slack so to speak from here on in.
It is just difficult when you already are dealing with a, "funny you don't look sick" syndrome, to see women who:
a) don't have to work but can vacation at will, which I do and I don't
b) never seem to miss one lunch, which I do, regularly
c) always look fantastic when I have days I can't lift the mascara wand, week after week!
I hope you don't think badly of me, cause I don't want to seem like a B***. I am just frustrated with the "support" group in my area!:^:
08-16-2008, 11:30 PM
I have fibro, arthritis, chronic back pain, depression, IBS and a bunch of other stuff but
I have not been diagnosed with fibro, but my best friend has it. I know how difficult it makes life for her, and how little people understand her condition. I also believe it played a part in her divorce.
As someone on the outside, I don't feel like I have much to offer, but I would like to say that I don't think you sounded awful...just awfully frustrated at not finding the type of support you are hoping for from your group.
I would like to share two things though....
1) I have heard that topical treatments with 1 part cayenne powder and 3 parts wintergreen oil may help with the muscle pain when there is a flare-up.
2) A personal story for you to contemplate... About 10 years ago, I was miserable. I hurt in every joint in my body to the point where I did not want to move or get out of bed in the mornings - especially in my back. I could sleep for 11 hours or more and wake up just as exhausted as when I went to bed. I couldn't think straight, my asthma was out of control and didn't respond to any medications. It should not be a surprise that I battled depression as a result. I was miserable.
Anyway, I was desperate to try to improve something and I chose to work on my asthma. I had heard that limiting dairy could improve it. When I looked at what I was eating, I realized that almost everything I ate had dairy in it in some way. I worked hard to do the shopping that week to avoid anything with dairy and went dairy free for the week. I kid you not, within days my joint/back pain almost completely disappeared, my asthma improved, and my energy levels shot up. After a few weeks, I tried to eat some dairy to see if it was indeed the culprit and...wham...all symptoms came back with a vengence. It turned out that I am allergic to dairy and was having an immune system response to it. My friend who had fibro tried to go dairy free and also found it helped her symptoms.
Not that I think your fibro isn't absolutely a real problem that you have to deal with...I know it is for my friend and her episodes can be terrible. But is it possible that you may also be battling an allergy to a food or a food additive as well that is complicating your efforts to deal with your fibro?
Just a thought....
08-17-2008, 10:45 PM
I don't think that I have fibro, even with one diagnosis of it. I do though have some similarities (well obviously, seeing as how a rheumy gave me the diagnosis! :) ).
I understand though having problems that people don't see and don't understand. It took a bit over 9 years to get my epilepsy diagnosis. I've been told that I need to stop trying to get sympathy. I've been told by doctors that I'm just weird and they don't know what is wrong with me. I got so tired of people (like my mom) not understanding that I am actually having to deal with something debilitating. I have finally stopped talking about it and didn't even tell my parents at first when we found out that I have some calcification and actual deterioration in my brain. I am constantly in pain and have serious brain fog. Even had a memory test with a neuro psych. I used to be very much at above average intelligence getting 3rd in a 3 state math competition, getting the highest grade in my class on the ASVAB test, could memorize the whole play before the rest of the cast could memorize their own part. Now, with the test I'm smack dab in normal range. I used to have incredible fine motor control. When I was in Kindergarten I made a paper watch for my mom that you could fasten and unfasten and move the hands. I could make a paper rose that was 3 inches long had thorns and individual petals...now I can barely pick up checker pieces without fumbling.
This may sound weird, but I'm actually excited at the fact my neurologist thinks I might need brain surgery. If I do...I'll at least have physical proof that something is wrong with me. Who cares if I have a shaved head and a giant scar, at least people would SEE something.
08-17-2008, 10:52 PM
Oh great more foods I have to give up LOL...thanks for that idea though K8t - funnily enough tonight I was wondering if I had a sensitivity to dairy ..which since I drink milk, eat cheese, eat yogurt etc. oh dear ...rats..there goes my cottage cheese and melon which I love! I may try it for a week though and see if it makes a difference..if not I haven't lost anything but a week right? I think I can still have yogurt though, something about how it isn't badly tolerated if you have lactose problems.
08-18-2008, 08:17 AM
Actually, I never had any digestive trouble like bloating and such, so it never occured to me that dairy was a problem.
Good News / Bad News / Good News
Good News - The good news if you turn out to have a dairy problem - or another food allergen - is that you may find you can actually eat some of the foods you used to enjoy again if you can find versions free of the offending ingredient. Many times, you can.
Bad News - You have to look at everything you eat and you may want to look up the Kosher food labels online before you shop. They help a lot. About 90% of the lunch meats, processed foods, and things with caramel color in them have dairy in them. You aren't just looking for milk on the ingredient list...chesses, lactose, caseinate, caramel coloring (unless the product says it is milk free)... I would definitely spend a couple of hours searching the web for information. It was a real eye opener to me how much dairy was in what I was eating. (Hint: Large store brands (like Wal-Mart) that sell across the country where there are larger Jewish populations looking for Kosher goods, frequently make many of their versions of things like bread, crackers, and canned goods dairy free.)
The good news -Once you know what to look for and what the Kosher symbols mean, shopping becomes much, much easier and if it has been causing you problems, you will feel better pretty quickly.
Let me know if I can be any help as you look into this. It's an inconvience sometimes, but it transformed my life.
09-08-2008, 08:32 PM
I'm trying to learn how to balance my life with my fibro, my family, my job, exercise and all the things that go with life. I'm a normal fibromite (stole that from another website).
I don't want to take meds like vicodin and such because I need to keep going. But that is the level I'm slowly reaching. I'll fight it tooth and nail.
I have a co-worker whos wife has fibro and he asked me one day how come I work and she can't. I told him that it all depends on the level of fibro and the treatment the person is receiving.
So I started this and have lost my complete train of thought thanks to my husband complaining about me typing too loud and just being an overall distraction. So I will close.
Someday if I ever figure out where I was going on this train, I'll come back and finish it.
09-27-2008, 10:07 PM
I have fibromyalgia as well, along with chronic spine pain (11 spine surgeries), and as hard as it is (especially with the back) I try to push myself everyday. So I must say, I do agree with you. I think I'm just going to leave it at that, because my situation is one I really have a hard time talking about, but I just wanted to let you know that there are those kind of people out there and you're not the only one dealing with them. Not to mention the fact that it's more than just the fibro community you see this in.
10-01-2008, 09:05 PM
Its impossible to determine another persons pain level. The level that one person tolerates with mild daily interuption may cause another person to be disabled.
I dont blame your for your frustration with your group. I would consider not going if it causes you stress, groups are supposed to give you a sense of belonging and hope this group does not sound like a supportive environment for you.
I was diagnosed when i was 21 by a specialist. I have non restorative sleep, poor concentration, and major short term memory issues. I am chronically tired and have tenderness throughout my upper arms and sternum area as well as hips knees and ankles.
I have too eliminated dairy from my diet, in fact I have gone entirely vegan. This has decreased all of my symptoms. They are not gone but much less of an issue. I take no meds I work full time and go to school part time. Its not easy....I have to push myself every day all day.
I refuse to be a victim, I am always trying to research this disease and figure out what it the cause and the possible cure. At this point in my life I refuse to believe I even have fibromyalgia. I know that I have symptoms that are indicating a problem in my body, I plan to fight it never to give up.
I think a lot of it is making your mind up. Deciding that you are going to get better and live life.
Again I cannot know how others feel this is just my thoughts....
10-01-2008, 10:16 PM
There are a lot of people who consider coping with fibromyalgia or pain issues in general, as being primarily a matter of mind over matter. I know that I did, even as I was experiencing the symptoms, both before and after I was diagnosed. I was convinced that I could will myself through my day, and do what I wanted to do regardless of the pain. I still often make that mistake, and hubby is often the one to remind me that it doesn't always work that way. Sometimes you can't just decide to get better (though with fibromyalgia and other invisible illnesses, many people will tell you so, only trying to be helpful, of course).
Still, mind over matter, willing myelf through my day worked pretty well for me, or so I thought, for probably ten years or more before I was even diagnosed. I continued to burn the candle at both ends, ever the overachiever when my career was involved (I suppose trying to prove that while I might be fat, I wasn't lazy).
The weird thing was while I could force myself through pain, I couldn't force myself through fatigue. I'd had pain issues for probably 8 years or more before the fatigue started. I thought the pain was just my osteoarthritis, so I didn't pay it much mind. The NSAIDs weren't really touching it, but I didn't want narcotic pain meds, as even tylenol 3 made me too sleepy to function at work. But when the fatigue and cognitive problems started, I was terrified. Being in pain is one thing, losing one's mind is completely another. I couldn't even stay awake for the 10 minute ride to work - I had to have my husband drive me on his way to work, for fear I would fall asleep during the drive. Several times I nodded off at stop signs.
The cognitive issues were both frightening and completely out of my control. The more I tried to control them, the less it seemed I was able to. It took me hours to understand my work emails that I used to be able to deal with in 15 minutes. I posted reminder stickies all over my cubicle and still missed meetings and deadlines, and fell asleep at my desk. Pain I could deal with, losing my mind, and falling asleep while I was pinching myself to stay awake... not so much. What job doesn't require you to stay awake for it?
Last year, I really thought I had most of my fibro symptoms under fair control. I'd identified most of my triggers, and was even starting to think that I might be able to get them under enough control to go back to work soon. I was really excited, and the last few months have been horrible. I couldn't figure out what I was doing wrong, and hubby identified it for me several days ago. He told me that since the flares have started up, especially in the last couple months, he's noticed that my sleep has changed. I'm waking up about every 90 minutes (it takes about 90 minutes to reach REM sleep). My first sleep study showed that I was never entering REM sleep. People get sick, and animals die when deprived of REM sleep (people probably do too, but no one has been cruel enough to continue experiments long enough to prove it).
It's not as though I can decide to enter REM sleep. My neurologist (my best fibro doctor) recommended that I use benedryl when I can't sleep, but I wasn't using it, becaus I didn't think I was having sleep problems, until my husband pointed it out. I mean, I knew I was waking up alot in the middle of the night, but I'd roll over and fall right back asleep, so I was getting enough sleep time in (sometimes more than enough), but I wasn't getting the restorative sleep. Brains don't function without it.
Knowing when to "push through it," and knowing when to listen to my body and rest, is still more an art than a science. In fibromyalgia there's always a tightrope to walk, and so many people telling you how "easy" it is to do it.
10-03-2008, 11:07 PM
Like someone else mentioned, its easy to live with this and people not know. You don't always show it on your face. There are many people in my life that don't know I have something wrong with me. Now, my immediate family, my hubby's immediate family and my close relatives do know but not everyone. It is possible to put it aside sometimes when you are out in public. It may be that some of these women do just that. They suck it up to enjoy at least something every week.
On the other hand...yes, I think people use fibro as a big excuse and very many of the people with the diagnoses don't have anything at all. My sister was diagnosed a few years after me. There is nothing wrong with her. She was having arm pain. She's a hairdresser, duh!
10-04-2008, 12:19 AM
She must have a pretty uninformed doctor, because localized pain (just the arms, or just the hips and legs) would actually be used by most doctors to rule out fibro. If you don't have fibro "all over," you don't have fibro.