Fibromyalgia Thread

[Earstou]

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.

 

[brighteyes]

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.

 

[ireland_nicole]

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.

 

[Christine9125]

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.

 

[brighteyes]

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...

 

[brighteyes]

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.

 

[brighteyes]

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??

 

[Christine9125]

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.

 

[brighteyes]

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.

 

[TLSnell1981]

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!

 

[ireland_nicole]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

 

[tiggspring]

Hi Guys!

Beautiful day her in Pennsylvania I'm hoping to get some juice out of the good weather since last week was a nightmare for me. 5 straight days of continuous migraine. Every time I thought I might get it down to "just a headache" I would need to bend over to do something, the kids would yell, etc and I was right back to Ice packs and bed. Even increased my pain med's I was so desperate. I admit I sat on the couch and cried for about 10 min on day five. Just couldn't take it any more. All my kids now in school for first time (Including my big baby DH LOL) so I slept the first two days too tired to even be sad about the change. With the sleep and the weather changing things seem to be improving. Sorry to hear about your bad spell Brighteyes. If misery likes company than you had lots of comapny from me!

 

[tiggspring]

Regarding the weight thing it is one of the hardest things to deal with. On a day I can appear "normal" I'm still not looked at the way I used to be because I'm fat. I too was 130lbs size 8-10. Like I have said before every crash brings 15-20 lbs. I'm now up 17 from May because I crashed after returning from Disney. I have been as low as 160 after my son was born. Last fall I had gotten up to OMG dare I say it 235 lbs! Then from Oct to May I had gotten out of a insomnia mode started using meletonin and losing a little weight . lost a total of 50 lbs. I got into a size 14 bathing suit for the first time in 6 years! People started to look me in the eye again. Ever notice how when your weight goes up to a size 16 or above people don't look at you the same as the did when you were a size 8 or 10? For me It is the sleep not the exercise or eating that causes weight gain.

I have a Pilate's Machine that I like and have tried on and off. I need support when I do exercises. When I'm good its great. however, when I'm bad I always have to decide what do I want more exercise or to take the kids to the park or watch a soccer game or go to a museum. I cant do it all so I use my daily activities as my exercise. My Dr told me to do that many years ago when I bought a treadmill. She warned me I would probably over do that and I may be better becoming more functionally active.

 

[tiggspring]

Guess I really need to "talk" after the last week LOL!

As far ar the accepting my illness goes well that's a yes and no. I have learned to ride out most of my symptoms. I tell people its like being in childbirth. If you fight it the pain gets much worse if I use relaxation, imagery and creative planning of med's and energy I do better. I am very good at accepting that if we go to a museum I may need to leave early because I'm tired. We now become members of anyplace we like to go so the pressure is off of me to stay.

I do have great frustration with my weight, my memory/concentration issues and not being able to work because they affect how people look at me and how much I contribute to the world around me now. I come from a family with a Puritan work ethic. There is no excuse not work. to this day I'm always on the lookout for some career I can pursue when "I get on my feet". My husband used to call me Tigger because I bounced from one commitment to another without a misstep and I really miss those days. Most of all I really hate looking dumb and the memory stuff makes it pretty hard to look put together sometimes.

I have tried to look a the silver lining to all this. The only thing I have come up with is that I never would have been able to stay home with my kids if I didn't have the Fibro. While I have not been the Mother I have wanted to be I have been here for everything. I am hoping my kids will look back and not think about the days I yelled and was grumpy but at the fact that I was hear every day fighting to care for them and keep things "normal" As far as acceptance It does get easier but I think we need to get mad once in awhile to keep fighting. Getting mad for me is about being hopeful that I will get better someday and frustrated that its not right NOW! Hang in ther Brighteyes we know where your comming from!

Pain free vibes and Pixie dust to all!

 

[Christine9125]

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!

I also agree with the water aerobics, I try to do them when ever I can, just go to a pool

 

[Christine9125]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

I can walk longer using the treadmill then the elipter is why I like it, I am like you, can only do about 5 minutes elipter vs 35-40 on the treadmill

 

[brighteyes]

Thanks everyone for the replies and the support. I too feel I gained weight when my sleeping was at it's worst. I just feel so pathetic that I can't move for two days cause I washed my car. OMG are you kidding me? That is what I feel like. Being a single mom for my whole DS's life, I am pretty independent, so that really bugs me.

I would post pics from my first WDW trip to the second if I knew how. Just a span of 16 months. You all would be really shocked. I know I am overweight, but I can only see my stomach. So when I walk by a window and catch my reflection that is my reaction.

I have orthodics and even with those in I get shin splints if I walk less than a block and my calf muscles seize up, sometimes for days. I am hoping an elliptical will get me limbered up a little bit and lose the weight. My knees are in pain with the slightest movement.

Do you all find when you are having a bad flare of fibro fog, that you are swollen up. My eyes, my face, everything puffs out on those days. My employer was like "What happened to you?" So I got sent home.

All the best to you out there. I'm glad to know you can all relate, but sad that you all can relate.

 

[brighteyes]

I have an eliptical at home at it has been good for me; It definitely is less impact than other machines, which I find helpful. Mind you, I am still only up to about 5 minutes at a time on it, but I've worked my way up from about 30 seconds. I use it at least a couple of times a day and I find that it seems to be keeping me a bit more limber. I also walk with a friend who has RA, so we don't get frustrated w/ each other when we only manage a few blocks or have to go slower sometimes. I used to do yoga, but can't fit it into my schedule right now. I have a Wii fit that I still need to try out. I also swim when I can but the pool needs to be heated, otherwise my muscles "seize up". I try to do gentle stretching, too in the mornings even though it hurts because it seems to make that tight painful feeling go away sooner if that makes any sense. I have also gained significant weight since my dx, and get frustrated, because I know that's making it worse, but I can't seem to lose any. It has leveled off, but I'm still up over 80 lbs.

Do you mind me asking what type and model elliptical you have. I looked at some today but don't know which ones are good. I am short so I am sure that plays a role too in which kind to choose.

The front part of my ankle where my foot meets my leg already hurts from being on them today in the store. That was only a few minutes each one.

I know stretching helps I used to go to physio, but now t hat I've stopped stretching hurts, evne though I know it will help.

I didn't know if overweight people could do yoga.

 

[tiggspring]

Yes I swell up with the heat ,fatigue and flares.I tried the flat belly diet and the sassy water was good for this but kind of a pain to make so I haven't been making it consistantly.

Toocheri how is your geutton free diet going? Has it helped with the water retenton?

Ireland nicole doent the eliptical hurt your hips? Mine hurt just thinking about it.lol

I will post the sassy water recipe next time I'm on my computer. Its easier to post plus I have to find recipe. May be a few days before I'm back on.
Pain free vibes and pixie dust to all!

 

[DisneyMim]

I just found this thread and am so glad I did!!

I have fibromyalgia also. It's been five years now and it took me a long time to accept the reality of it. When I finally did I realized that I could not do some of the things that I have always done, BUT there was still plenty of things that I could still do. I try very hard to just concentrate on that. Like all of you I have been to doctors, specialists, etc. and have tried different things. With me it's worse in the cold and when the weather changes. I get migraines too, although the hormonal ones stopped after I went through menopause. My migraines usually are related to weather and sometimes stress (which my doctor tells me to avoid, HA HA). I am not on any pain killers for the fibro, except exedrin migraine which helps. I also have high blood pressure and am on pills for that. I try to walk and exercise and that helps. I am constantly telling myself to keep putting one foot in front of the other and I have been able to do it, but know that a lot of people aren't as lucky as I am.

I loved reading everyone stories and hope and pray that all of you are well and get better and better every day. It really helps to know that you are not alone. Thanks for this thread. I will use my Disney ending...

Enjoy The Magic!!