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Old 08-25-2009, 10:14 AM   #76
yoopermom
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Hi! Just diagnosed "officially" last week, but after watching my DF battle it the past fifteen years, I wasn't too surprised, unfortunately. I have had a CPAP machine for my sleep apnea the past five years, and was retested recently only to fifnd that my setting is ok. I'm one of those "odd" ones who can get through the day as long as I sleep 10-11 hours at night (and often take a nap), but am in big trouble if I sleep less! I would suggest a sleep test to anyone who hasn't had one yet. As to the weight loss surgery, I had lapband done two years ago, lost 50 lbs (when I still felt good), but since my fibro symptoms have started (9 months ago) have gained them back +. So don't assume it'll be an easy answer. Since my diagnosis I have made a firm commitment to going to the Y every day. On great days, I walk on the treadmill and swim, on ok days I use the exerbike and swim, and on bad days, I'm lucky to be able to float around in the water and gently stretch. But at least I'm trying! I do have an apt. with a p/t who specializes in fibro, so hopefully she'll have some good ideas. Nice to meet y'all!
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Old 08-25-2009, 08:54 PM   #77
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who would think you are researching Disney and you find people who suffer just like you do. I am 55 and have suffered for better that 25 years. I started with the headaches and paralaysis of the face joint pain and fatigue. next was diabetes now i have problem with the tendions in my feet retracting and the arches are falling. So I am here for support. we leave for Disney in 2 weeks and I a, so scared I will not be able to do this
I agree w/ the other ladies, please rent an ECV; if you're having the find of pain you are already, I don't see how you can try to walk the average 6-10 miles/day w/o at the very least, a pretty big flare. I use TourGuidemike and his plan is a lifesaver for me, plus, I try to build in rest.


Question: I have tried Lyrica and Cymbalta, but they made me feel so nauseaous and dizzy I had to stop. Has anyone found a med that helps at all that doesn't cause this?
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Old 08-25-2009, 11:01 PM   #78
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I've been on the DIS forever but never come over here. I'm glad I did. I am also a Fibrofemale. My name is Cordia and I am 55. I started first with psoriatic arthritis about 4 years ago and then started having flu like symptoms and fevers. Yep, fibro. I have actually had several pressure points for many years but ignored them.

Sleep. Ahh blessed sleep. I worked night shifts for many years and can't get off that schedule. I love being awake at night and hearing all the night sounds like the tree frogs and crickets. It is deafening tonight. Oh yeah, the racoons that visit our garbage cans every night too. Dang pests.

I take flexaril as I am on effexor already and my Rheumy didn't want to add more to that. I did try amytriptaline for a couple weeks but no benefit from it. I also tried topomax as I guess it helps some but not me. I have lots of knee, ankle and hand pain. Due to the arthritis I have a couple fingers and toes that are swollen nearly twice normal size. It is painful and especially when I wake. I use compression gloves and that helps some. I try to stick with my darvocet but occassionally take a vicodin. I became allergic to NSAIDS and they were what helped me the most. I miss my aleve.

It is too cool to run the a/c and I always hurt more when the windows are open. I love the fresh air but I feel like someone beat me up. Money vs. pain. What to choose??? Really I choose the fresh air most of the time.

It is nice to have some friends who understand. Thanks for listening.

Added: Yes, get the ECV. I have owned mine for 3 years now and I get out to the mall and movies and craft fairs and things I have had to miss for years. I can't handle getting it out by myself so I am still limited to having someone in the family with me but I still have freedom I need. I have used one at WDW for the past 4 trips and love it.

Last edited by RNMOM; 08-25-2009 at 11:03 PM. Reason: addition
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Old 08-26-2009, 03:45 AM   #79
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Hi ladies! Glad to see the thread getting so active!

Its 3:30am EST and I'm still awake!

I have never done a sleep study. Have thought about it but after all the 13 dr's and their "guinea treatments" made me so sick 15 yrs ago I stopped experimenting and started to focus on coping. (dont get me wrong most were really trying to help!)

Did the sleep studies give you any practical information or did they just reinforce what you already knew? I dont sleep well and I know that not just because I'm awake late or dose in and out of pain but I RARELY dream anymore. My husband used to love to hear about my dreams because they were doozies I even used to sleep walk. One night my mother found me packing my clothes Now I never remember dreaming. Any thoughts?

I'm considering Myofascial Trigger Point Therapy. Has anyone esle tried this?

Just found an expert who teaches at the only school specializing in it and he is close enough for me to drive to if my husband is in the position to drive me home should I have an unexpected attack. I recently read that some of the trigger points supposidly create some of my weirdest symptoms like the heart attack and stroke like sysmptons that have no cause. I doubt my insurance will cover it so if I can figure the money and travel I'll try.

Well pain free vibes, sleepy bugs and pixie dust to all!
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Old 08-26-2009, 03:57 AM   #80
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Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.
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Old 08-26-2009, 10:31 AM   #81
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I did a sleep study 2 years ago. Found out I wake about 8 times an hour, but I don't have sleep apnea. Also had pulmonary function test done at the same time.
I have progressive muscle weakness due to Chiari, and it is now affecting my lungs , so that is probably why I'm not sleeping well.
Also due to the breathing problems, I have to be careful of medications. So many knock me out, and I can't take anything that might suppress my breathing.
Weird thing, I had a neck fusion 3 years ago. Since that time, my fibro has been much better! I still get occasional flares, weather still affects me, and I hurt any time I really exert myself, but I don't have the daily overwhelming pain like I used to.
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Old 08-27-2009, 05:50 PM   #82
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Quote:
Originally Posted by ireland_nicole View Post
Question: I have tried Lyrica and Cymbalta, but they made me feel so nauseaous and dizzy I had to stop. Has anyone found a med that helps at all that doesn't cause this?

When I first went on my Lyrica, it made me feel like this and after about a week or two it went away, HTH.

I was taking 50 mg twice daily.
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Old 08-28-2009, 12:52 AM   #83
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Quote:
Originally Posted by tiggspring View Post
Hi ladies! Glad to see the thread getting so active!

Its 3:30am EST and I'm still awake!

I have never done a sleep study. Have thought about it but after all the 13 dr's and their "guinea treatments" made me so sick 15 yrs ago I stopped experimenting and started to focus on coping. (dont get me wrong most were really trying to help!)

Did the sleep studies give you any practical information or did they just reinforce what you already knew? I dont sleep well and I know that not just because I'm awake late or dose in and out of pain but I RARELY dream anymore. My husband used to love to hear about my dreams because they were doozies I even used to sleep walk. One night my mother found me packing my clothes Now I never remember dreaming. Any thoughts?

I'm considering Myofascial Trigger Point Therapy. Has anyone esle tried this?

Just found an expert who teaches at the only school specializing in it and he is close enough for me to drive to if my husband is in the position to drive me home should I have an unexpected attack. I recently read that some of the trigger points supposidly create some of my weirdest symptoms like the heart attack and stroke like sysmptons that have no cause. I doubt my insurance will cover it so if I can figure the money and travel I'll try.

Well pain free vibes, sleepy bugs and pixie dust to all!
My sleep study showed I did have Sleep Apnea. The first question the dr said was, you have a serious chronic pain condition, dontcha? I was like, um yeah... apparently something in our delta waves is totally different? It's late, so I'm not completely sure; but anyway, the mask really does help; i don't wake up nearly as much at night, and am not falling asleep at red lights either. I do take nuvigil, and that helps me stay more alert, too.
I tried the Lyrica for over 2 weeks with no improvement in symptoms, so I think it's out for me.
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Old 08-28-2009, 09:06 PM   #84
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My name is Chris and I was found out 4 years ago I had Fibro. Just felt achy all the time. Now the doc has me on 2 different pills, plus a sleep pill. My symptoms are good, going to the gym 3 days a week, but I am always tired. I had the sleep test and I do have sleep apnea. I still do not feel rested.
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Old 08-28-2009, 10:06 PM   #85
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Originally Posted by tiggspring View Post
Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.

Hi Tiggspring,

I replied to your question the other day, but don't know what happened to it? I must have been having a really sleep deprived day... I will respond tomorrow too tired now...
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Old 09-02-2009, 12:05 AM   #86
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Originally Posted by tiggspring View Post
Oh I forgot...Brighteyes what are you studying? I can't imagine going back to school, Fibro and a DS. The fact you are floating all this is proof you rock!
My youngest got early admission to Kindergarden this year and it is a releaf because I dont think I could handle another year 24/7. She is a wonderful sweet girl but at 4 about to turn 5 she is busy. My husband goes back to school this year and without his help I'd be sunk with one still at home. Your in my thooughts as the school year begins.
Sorry tiggspring,

Still recovering from a painful flareup after cleaning all the tree sap from my car on Saturday. Needless to say, that after all this, I am taking my car to a pro and paying them to wax it for me.

I am taking social services in school. It is just a diploma program but wholly intense. It's brutal. II want to be an Educational Assistant in a Special Ed class. I will lean more to the behavioural side of things as working with severely developmentally challenged children and those with autism would be very physically challenging.

My diploma will be equivalent to an EA diploma or a Child Youth Worker. So I am just lucky it worked out this way, cause I just decided that I don't want to counsel people. Apparently, I am good at it, but don't want to do it.

I say Kudos to you for taking care of a young one. If my DS was that young now, I don't know how I would cope. At least now when I am in a bad flare, I don't have to look after DS so much cause he is 13. I wish sometimes he would take care of me sometimes, but that doesn't look like it will happen anytime soon. So enjoy your rest, you deserve it. You sound like an awesome mom!!

The biggest challenge about school is I tend to get OCD when I am so busy with school and that makes me focus on school the most and I don't take care of myself properly. I procrastinate and then I am doing things last minute and they take waay longer cause then I obssess over it. Let's just say, I am a mess. So I don't get enough sleep or eat properly, and never excercise. I don't do that now, who am I kidding? So it takes it's toll, I am hoping I can pull it together a little more this year. On the upside my marks are awesome, all A+ and one b.

I guess I am saying I make it harder on myself which is not good. Only one more year.
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Old 09-02-2009, 09:39 PM   #87
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I am extremely overwieght and need to lose about 90 lbs!! Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??
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Old 09-03-2009, 09:33 AM   #88
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Originally Posted by brighteyes View Post
I am extremely overwieght and need to lose about 90 lbs!! Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??
I have been going to a gym, the elliptical is much harder for me then just the treadmill-they advise against it. They are also coming up with a workout for me due to my fibro. I meet with the trainer tonight, I will let you know how it goes.
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Old 09-03-2009, 10:31 AM   #89
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I have been going to a gym, the elliptical is much harder for me then just the treadmill-they advise against it. They are also coming up with a workout for me due to my fibro. I meet with the trainer tonight, I will let you know how it goes.
Thanks, that would be great! I thought the elliptical because there is no impact. Walking is very painful for me. Let me know how it goes. Good luck.

I used to go to physio but just did stretching for my whiplash but no excercise that would help me lose weight, that's for sure.
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Old 09-03-2009, 10:57 AM   #90
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Quote:
Originally Posted by brighteyes View Post
I am extremely overwieght and need to lose about 90 lbs!! Wow. That was really hard to say. Just two short years ago I weighed 130 now I weigh 210 or so.

Anyway, my question is, What type of excercises if any do you do? My calf muscles are very painful and feel like they are not long enough. So should I start walking a few minutes a day?

I would like to get an elliptical machine but don't know if that's a possibility right now. I am in such bad shape and from the fibro that any thing as little as carrying something a little bit heavy puts me in pain for at least a day!

I am really still upset about all this. Is this normal, I am still pissed off, I guess you could say that I can't do what I used to be able to. Have any of you come to accept your illness?

Anyways, I don't want to just let this incapacitate me, don't want to gain any more weight and want to be able to move without pain.

Any advice??
You may try to find a water aerobics class for arthritis patients. The water is warm and helps ease the pain. I started feeling better as I started to lose weight...it helped quite a bit. I rarely take pain meds as this adds to the weight issue.

I still get ticked at times. I try not to stress over it...makes it worse. They hardest part is that not many folks understand what we go though. I've had a pretty good summer, but the weather's changing and I've overdone it a bit. So, today I'm doing nothing. I've learned to read my body. I know I'm going downhill when I get irritable, my memory gets foggy and I'm tired, tired, tired.... Pace yourself, do what you can and then rest.

You're not alone!
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