Welcome Serena and hello to everyone! Just checking in to see how everyone is. My DS is sick and has been home for 2 days, but should go back tomorrow.
Serena, I agree that the insomnia is unbearable and causes me soooooo much daytime fatigue. And my hubby is as supportive as he can be, but it's hard when he doesn't know what I am experiencing on a daily basis.
So like an idiot I work 2 jobs...Sometimes it's ok
But I worked my office job all day Friday& then went & waited tables that night. I woke up on Sat. morning & felt like a train wreck! I went to dinner & a movie with my husband (ate mexican & VERY naughty & saw Juno-loved it!)
Other than that, I did NOTHING all weekend! Heating pad & DVDs I even skipped work & skipped out on my walking buddies last night. This complete NON functioning pain isn't constant, but maybe every 2 months or so...I AM quitting the 2nd job, but this did happen before I even took that job.
Does this happen to you? How do you handle it? Any thoughts besides the heating pad & Advil? I also soaked in the hot bath. But really 2 1/2 days of just laying in pain...on a scale of 1-10 my neck, shouders, upper back & arms were at LEAST a 9. The rest of my body about a 5-6. I'm at my office right now & the neck area is still around a 5-6. I still have 5 1/2 hours to go!!
OMG Jodi, you must be exhausted!! I had to quit working 11/06 because I could not handle the pain anymore. My Fibro, Myofascia, and Muscular Dystrophy would have me in such bad shape by the time I got home my DH would have to peel me out of the car crying and put me straight to bed.
And I use the same methods you do. Take a hot bath, use the heating pad, and take my meds. I need a hot tub to jump in from time to time!!
You should see if you have Myofascial Pain Syndrome in your upper back. I do and it is awful!!
Thanks for replying CR! I will check out that site!
It's so (strangely) nice to know that I'm not alone! Is DH your Dear Hubby?
I'm married to a really wonderful guy, he's sensitive & careing & really treats me like a princess. Except when it comes to this....He ignores it. Unless I'm "flareing" to the point that I'm flat on my back sobbing, at wich point he'll offer a back rub. Really? I hurt too bad to be touched! He completely ignores it. Don't get me wrong, I'm NOT a complainer & don't say much about my aches & pains really often so maybe he doesn't realize how I feel. Anytime I ask for help he does it, but I've never heard him say the word Fibro. he'll ask "what'd ya do?". As if I hurt because I was out wrestleing or something dumb. His Dad has MS (Richard Pryor bad) He ignores that too... Seriously, "Oh he was just tired today" When litteraly, you couldn't understand a single word he said! I guess that's his way , but sometimes I would really like for him to aknowledge that something's wrong. Otherwise, I feel like he doesn't think it's real. Does anyone else experience this or anything like it? I swear, sometimes I feel like there's nothing wrong with me...I must've "created" this in my head... "Talking" with you all, is like a weight has been lifted! I feel like I want to know everything, all of your HOWs, WHAT's WHENs etc....
I know what you mean about wondering if it is all in the head. I really thought I was losing it just before I got diagnosed. I got so sick of people telling me I wasn't old enough to be having so many problems. Hello! Don't I know it! grrr.... anyway, we can't all be making it up.
My rheumy (who I really respect after hearing how rotten yours all seem to be) warned me about doing too much when feeling good. I took me a few tries to learn my lesson. Now I know that if I overdo it (aka, act like I don't have fibro and do like a normal person would), I will likely be laid out for 1 to 3 days.
This weekend I went to be with my friend as her father lay dying. I knew I was going to overdo it, but she needed me. I kept praying for God to lend me strength to make it through and be there for her without collapsing. My friend and I stayed up watching her father all night Sunday. I'm glad I was there to go handle her children so she could be with him the next morning when he passed away. I just kept pushing forward so that she could rest when she got home.
Needless to say, Tuesday I was in bed all day and very sore. I still was very sleepy today, but not as bad as it should've been considering how much I was on my feet and chasing after her wild children.
I say that if you have a doctor who doesn't believe in your diagnosis, its time for a new doctor.
Jodi - sorry to hear your husband is not very supportive. Hopefully, you have enough other support to make up for it. You certainly will get it here.
I have a little problem with insomnia, and my doc wants me on sleeping pills too, but I have refused them thus far because my husband suffers from severe hypersomnia and I am afraid that if I am "out" too that neither of us would be able to respond in an emergency. I plan on doing a little fire drill to see if my hubby would be able to wake up, but I think I'll wait till it is a little warmer out. Until then, I will just continue sleeping late and working late.
I rely on bed, warm baths, heating pads, and ibuprofen 800 for the pain and soreness. The worst part of it is when my children want to cuddle and can't because it hurts so much. It's also hard on them that I spend so much time in bed.
Sleep quantity and quality are triggers for my flares also. That and sudden changes in barometric presure/temperature/moisture (in other words weather, I suppose). My MIL still doesn't get it, because although we've explained it to her over and over, a couple of weeks ago the temp went from below zero to 30 degrees almost overnight, and she was shocked (and skeptical) that I was having a flair because the weather "had gotten better."
I'm on amitriptyline also. I had been on lexapro, and my doctor was wanting to switch me to Cymbalta. I asked if there was an alternative because the Cymbalta is so darn expensive. He thought for a moment and suggested amitriptyline to help me sleep and help boost pain relief. It does, and it's one of the $4 drugs at Walmart/Sam's Club. I also take Provigil for special days when I want to be able to skip my nap (like family gatherings, etc). It can make a fair to good day better, but as my neurologist advised I don't take it during flares, as it can't make a bad day good. In fact, if I take it more than one day in a row, I might get a rebound flare and be in bed for a couple days. Some fibros take it daily, so it might not be the drug as much as the fact that I cram in as much activity as I can into any day I take it.
I'm on tramadol for pain, and right now I'm taking the maximum dose, and OTC tylenol. I expect in spring I can discontinue the tylenol and reduce the tramadol (I was able to last year).
I was taking relafen for the osteo, but I learned that it was actually causing my asthma/bronchitis/COPD. There really isn't any substitute, because when you have that reaction to an nsaid, any nsaid and even old-fashioned aspirin can trigger the asthma. The pain and stiffness is worse, but I have to say the clear breathing is actually a more than fair trade-off. I was able to go off all three of my asthma medications - and I haven't had bronchitis once this winter (most years I have it constantly from October through February and a few times during the other 3 seasons).
In good, stable weather I can keep the fibro under good control, as long as I take a mid-day nap. Which I guess, at least proves it is fibro, and not "just the fat," as one doctor suggested. If that were the case, what accounts for the difference between good and bad days and seasons, does the gravity change in the winter or something? Then I met a woman whose fibro started AFTER she had lost 100 lbs.
When I'm feeling great, even though I know that overdoing it will cause a flair, sometimes I also just can't resist. It's so hard not to "act normal" (or even uber normal) on a good day, because it's such a blessing. I tell my husband I feel like a kid in a candy store, and WANT IT ALL! So, I want to clean the house, go shopping (REALLY shopping, not just in and out one store, but hours and hours of MALL shopping, YEAH!!!!), cook dinner, take a walk, go to a movie..... My husband says it's almost manic sometimes, but after a long flair, it's like a glimpse of the sunlight after months of darkness, you can't expect a person not to want to get out in the sun (even if they suffer a little sunburn for it).
It makes me so angry that so many people still refuse to believe that fibro is real. Almost worse are the people that acknowledge it is real, but think it is easy to live with or treat. "It's all mind over matter," or worse people who give strange "quick-fix" advice. I've tried giving up artificial sweeteners, caffeine, food coloring, wheat .... still have fibro! And still have people telling me while looking down their nose at my diet Coke that it's the aspartame or caffeine (I went without either for about a year, no difference).
My symptoms were so bad I had to go on disability, and it wasn't because of the pain. I could work with pain, and did for a decade or more, even when washing my hair in the shower made me cry. But, how the heck do you work when you can't stay awake for more than 15 minutes or forget what you were thinking or doing 10 minutes before. At my worst, right before diagnosis, this was what I was experiencing. I was sleeping 12 - 15 hours a day (more on weekends) and still couldn't stay awake to drive to work (hubby drove me to work the last year).
That probably sounds like whining or ranting, and it really isn't. Ok, maybe it is, but a tirade I guess is a normal reaction to the relief of meeting people who understand and believe us. Even though our symptom patterns and triggers may be very different, we "get it."
I think the MySpace page is a great idea, though I always forget to check MySpace.
Not refering you to a pain management clinic is crazy. Pain management is finally starting to catch up with other areas of medicine. It is well established that it is much easier to prevent pain than try to stop it once it's taken hold, so learning to live with it without treatment is about the dumbest thing you can do. The pain only digs in deeper and deeper. Some doctors are saying that is how fibro may start for some people - people get trapped in a pain cycle because they didn't sufficiently treat pain when it first started becoming chronic.
I think I did hit bad luck whith rheumatologists. My first one was mean, but fairly knowledgeable (except about the fibrofog), my husband and I refered to her as Dr. Crabby pants (a play on her name which started with the Cra sound). Every appointment, she would complain that fibromyalgia is a neurological condition, so SHOULD be treated by neurologists, but that since the symptoms are arthritic and most neurologists don't know much about the disorder, "we" (meaning herself and other rheumy's) are "stuck with it." Great!
When my husband and I first moved to Wisconsin, there was a year's wait for a rheumatologist consult. I got on a waiting list, and was applying for disability at the time. The fog and fatigue were a little better (I was put on a CPAP for sleep apnea which helped alot), but were still pretty severe. I got a letter from Soc Sec saying they had set up an appointment with a neurologist in my area. I was afraid to go, because I thought it was his job to say there was nothing wrong with me, but he turned out to be a godsend, and my primarly "fibromyalgia doctor." I think his dedication to the fatigue and cognitive fog disorders probably was inspired as a result of his brother having had narcolepsy (and dying as a result of falling asleep operating a motorcycle).
My husband is usually wonderful, but sometimes "too wonderful." He can be very irritating with the constant "how are you feeling," and "shouldn't you be resting, "and "you're not overdoing it aren't you?"
He has pain issues of his own (diabetic neuropathy and a degenerative joint condition he inherited from his (thin) mother. She's had two hip replacements, a wrist replacement, and needs two knee replacements and one of the hips redone and she's barely in her 60's). My husband is on heavier drugs than I am (Cymbalta, Lyrica, nabumetone, tramadol, AND darvocet). Like many men, he is very crabby when he is feeling poorly (I tend to crawl into bed and isolate myself. He also likes to isolate, but does it by pushing people away rather than hiding). He's also on disability - almost a year now and he's a complete bear about it. He hates not working (I do too, but I don't #@%&* about it all the time). I know his identity was pretty wrapped up in his work, so he feels pretty useless. I think focusing on me, helps him feel useful. I feel very guilty about it sometimes, because while my really bad flare days seem worse than his (or maybe I'm just a bigger baby about it), he never gets a good day. It's like he is sentenced to life in prison without possibility of parole, while I'm on work release and eligible for pardon some day (at least I'm hoping for a remission at some point).
Ok, I'm yakking again. Since we're getting to know each other - if you haven't noticed, I talk alot. In person, it's a mile a minute, so at least you're spared that.
I think I have to agree with the rheumy a bit - it is a neurological disorder and thus should be treated by a neurologist. Then, maybe people would start to understand that it is real.
I am letting my pyschiatrist handle most of my medication, based on what the others want me on. He's a biochemist first, so he understands about treating the body and how all of the chemicals - both natural and not - affect the body. I know he is very concerned about the fact that I am a stress-addict. He wants me to quit, but I don't know how. I've lived on high stress level since a child and don't really know the difference anymore. I'm supposed to read a book called "Why Zebras Don't Get Ulcers", but I need to order it yet.
I am excited to report that I have lost 4 pounds!!!
I am still considering doing the myspace thing concentrating on Fibro, but I saw that there are already some out there that look pretty good. Maybe I still will, or just do a blog. I'd like to do a webbsite - anyone know where to get good free websites?
Enigma: Congrats on the 4 lbs!! It's so amazing how it feels when we start to see progress!
I am feeling good about things here too! We as a family are eating 100% healthier than ever before & the kids aren't complaining. I've been doing my walks, yoga & Zumba on a regular basis. I am still hurting but am hopeful that in my weight loss I'll feel better in general & that will benefit my fibro. In the mean time just taking it as it comes. I've lost 2 more lbs, but not updating my current weight untill I keep it off for at least a week. (I'm SUCH a roller coaster)
Seriously, it feels SO good to know that I've found somewhere that I'm not alone! Thanks to you all for your posts!
Let's lighten up here a little bit ladies,
Does anyone have anything fun planned for the weekend?
What is Zumba? What is your workout routine for 1 weeek? After life gets back to normal here - likely Sunday - I want to get set on a routine. I want to include walking, my glider, yoga, work with my balance ball, and maybe dance a bit in my basement. I want to do other things too, things I can do inside, for now.
Unfortunately, no fun for me this weekend - a friend passed away and its his funeral. I just hope I don't slip into depression and start comfort eating.
Quote:
Originally Posted by Jodi N
Enigma: Congrats on the 4 lbs!! It's so amazing how it feels when we start to see progress!
I am feeling good about things here too! We as a family are eating 100% healthier than ever before & the kids aren't complaining. I've been doing my walks, yoga & Zumba on a regular basis. I am still hurting but am hopeful that in my weight loss I'll feel better in general & that will benefit my fibro. In the mean time just taking it as it comes. I've lost 2 more lbs, but not updating my current weight untill I keep it off for at least a week. (I'm SUCH a roller coaster)
Seriously, it feels SO good to know that I've found somewhere that I'm not alone! Thanks to you all for your posts!
Let's lighten up here a little bit ladies,
Does anyone have anything fun planned for the weekend?
I'm so sorry about your friend! (was this your B/F's dad?) it's always really hard to loose someone & SOO natural to get depressed & for MOST of us, food is a comfort. Good luck with that, maybe you can make yourself a little list to keep in your pocket. OTHER things that are really comforting to you:
~hugs from your kids~a nice candle~obscenely expensive lotion that I got a sltahered on your whole body like you can afford it everyday!~GOOD coffee~ a super cute movie that makes you smile~turn up some cheezy (but good) 80's pop like Cindy Lauper or something REALLY loud! All of those things are really "up" & comforting to me. Your friend wouldn't want you to sabotage the good thing that you're doing for "you" because of this! We all want what's best for our friends & family, even after we're gone from here.
Zumba is a latin inspired aerobic dance. There is some jupming & it's REALLY fast. But you don't have to "keep up" w/ the instruter to get a great work out, I certainly can't. But it's sassy & fun. Try googleing it, I bet you can find a video clip. Don't let it intimidate you, neither my GF or I can do it very well but we laugh our butts off & get good & sweaty!
Right now my workouts are Walking, Zumba & Yoga. unfortunately Zumba & Yoga are only 1x per week & on the same (Wed.) night. I get 2 hours of exercise! I have a group of...well not everybody in our group was "feelin" ity, so we're down to 4. It's VERY cold here, so for free you can go walk the halls of the highschool. The 4 of us (or 2 or 3 depending on who makes it) Speed walk for an hour on Mon, Tue, & Thur. So I guess I'm getting about 5 hrs per week of good work outs, I'm hopeing that's why i'm not loosing weight faster...maybe building some muscle? Also for the speed walking I carry 1-2 lb weights on the days that I'm not in a lot of pain. none of the other girls carry weights, but I want sexy girlie arms! I've heard great things about the balance ball (I used a giant one during labor with my daughter) . Let me know how it works!
Also, I've not tried this as of yet, buy have heard AMAZING things about the Hip Hop Abs DVDs. I guess they're spendy so I thought I'd check Ebay....
Thank you for the kind words, Jodi. Yes, my friend was my bf's dad. He was like another Grandpa to my kids. The kids are handling it really well, but we are going to the visitation tonight and the funeral tomorrow, so we will see how that goes.
I am doing a bit better. I don't think it is depression so much now, as it is my system is just run down. I even started getting a scratchy throat and my ears are driving me nuts (you know - that plugged feeling). But, I'm upping my Vit C, so hopefully that will help.
I wish I had people to walk with here. I don't even know if we could walk the halls or not. I've lived here for four years now, and I only know a handful of people: my neighbor, my sitter, and soma gals from church (my moom's age, mostly). We have some family here, but we usually only see them at the store and reunions. My husband is not overly close with his aunts, uncles, and cousins as I am. But, all my family is in the Lansing area, a good hour & a half away. Gee, I sound like I'm having a pity party!
I started going to PTO meetings to meet other moms (and to begin my journey to the school board), but I don't know them real well yet. I think it is hard for us to meet new people b/c we are always running here and there. I hope that as the kids get older, it will get easier. I'm so desperate for adult time I've even agreed to play euchre (I grew very weary of it in HS) if it meant hanging out with my DH friends, now that they are also married and have kids (and know how hard it is to get out!).
I've been afraid of walking on anything but my treadmill b/c I am afraid that I will get so far, and not be able to make it back. I can just see myself crying on the side of the road - no, don't want that.
Zumba sounds fun, as does the hip-hop abs. I used to dance a lot in college, but that was more the bump & grind kind.... Oh, how I miss dancing. my DH doesn't like to. I used to go out maybe 3 nights a week and dance for hours each time. Usually about four hours or more. I'm not sure my hips or knees would be able to take it today... Listen to me go on like an old lady! Ok, time for me to turn on the tunes and try to get out of this funk!
I support pity parties as long as they're occasional!
Ok <---that's me @ Zumba...not a lot of rhythm, but I LOVE to dance too. The basement dancing is a great idea! Good idea on the vitamin C, you don't need to get sick...you've got work to do!
Does your town or school district have community education courses? That's how I found out about the wlking, was on their website. You'd be amazed @ how few people do this. I do know how lucky I am to have the walking buddies! The 3 that I'm walking w/ now are: my mother in law (granny had a major stroke recently though, so she's only occasional) Amy, who is married to my hubby's B/F. We're really close now, but we've both been burned a few too many times by friends in the past, so it took us like 3 years to get this way. And Jessie, who's married to my hubby & I's mutual B/F. Amy & I did this last summer & Fall for like 4 1/2 months, that's how I went from 170lbs to 154lbs. Then she copped out on me. So I harrassed Jessie to join me but to no avail. So I quit. It wasn't fun alone, I didn't have anyone to keep me motivated. I lost muscle tone & went back up to 160. Finally about a month ago, Jessie approached me about Yoga, I said I'd do Yoga if she'd walk.
Bottom line, It's way more fun & way harder to cop out if people are waiting for you. But I don't dare get too comfy this way...I've got an MP3 for back up & though I haven't had to yet...plan to go by myself if I have to. I'd check online & see if there is anything like that in your area. Does your church have a weekly news bulliten? Maybe talk to the church secretary & see if you could put a "post" in there about starting a "walking club". Kinda sounds cheesy but what the hey...how many other women are in the same boat? It's really hard to make new friends!
Maybe the Euchre will get you a bit more of an "in" with those other moms/wifes. Mention it, if your hubbys are friends, maybe they can get together & watch the kids while you walk. If there's not an indoor place to walk when it's cold out what about just doing some work out DVDs...take turns @ each other's house? Kinda lame SOUNDING but could be fun with the right person.
I wish you could join us! Good luck this weekend!
I'll have to look online. I hadn't thought about that before. The church I go to is one of the smallest in town (Episcopal). There are only two or three other families our age there at this time and they don't live very close. (excuses, I know) BUT, we DO have a community center and even a fibro group. I went to one of the meetings, but it was a bit of a let down, so I haven't gone back. Maybe I'll have to give it another try. At the very least, I should be able to post something at the Community Center.
I've tried to get one of my best friends and my mom to buddy with me (they both live 45 minutes away) for the weight loss/fitness thing. I thought that if I AT LEAST had someone to be accountable to, it would help. My hubby could care less what size I am, so he is no help. In fact, he can be absolutely evil. He just brought me a bowl of ice cream. Good thing I have room (cals / fat, not tummy - although that too!).
It's just been jodi and I on here lately, but I want to still be buddies with all of you! I am thinking of starting a new thread, a bit more open, called "Fibro-Friends" for us and others to be able to help support eachother through our journies to our goal weights. I think support from others having the same or similar issues is important. And, if we need to rant, complain, or cry once in a while - that's ok too, as long as we strive to stay positive.
I've given up on the webpage/myspace idea (although I have one of my own) - I have founf too many good ones out there already. Personally, I am going to thoroughly peruse the National Fibromyalgia Association website at www.fmaware.org they have current research on there too that I found quite interesting.
Anyway, let me know if a new thread sounds like a good idea...
A really bad weekend...all flared up
I am excited to report that I have lost 4 pounds!!!
) . Let me know how it works!
Ok <---that's me @ Zumba...not a lot of rhythm, but I LOVE to dance too. The basement dancing is a great idea! Good idea on the vitamin C, you don't need to get sick...you've got work to do!
. Finally about a month ago, Jessie approached me about Yoga, I said I'd do Yoga if she'd walk.
He just brought me a bowl of ice cream. Good thing I have room (cals / fat, not tummy - although that too!). 
