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Anyone else with fibromyalgia or narcolepsy?



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I like to exercise. Its good for me- I know that. Exercising consistantly makes me feel better too. Its just that sometimes I can't. Or at least not consistently. I have fibromyalgia, so if I do too much then I am going to end up in bed the next day or two with a fever and aching all over. I also have narcolepsy and some days I am just too tired to do anything. I found a new neurologist and I am hoping that helps out with the narcolepsy. Latley the fibro has been going through a flair up and I have had a sinus infection so no exercise. It can be discouraging. I have to take time off from the exercise- sometimes its a couple of months- and then build back up again. A couple of short walks with the dog, then maybe a few more in the week. Then a few minutes on the treadmill and eliptical. Then I can add in the weights and bike, etc. After a month or two I am up to a twenty minute workout, but if I need to take off...

Any advice for not getting discouraged? I suspect losing weight would help with the fibro- it would help with taking pressure off of my joints. But exercise helps with weight loss and sometimes it seems like a big catch 22.

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I have fibromyalgia and I have noticed that when I have a flair up if I continue to exercise but at a much lower level I seem to get through the flair up faster than when I just stop exercising all together. It is painful but for some reason it works. Then your not starting over from scratch with exercise every time you have a flair up.

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I have Lupus and have the same problem. If I go at it much I end up with a fever, pain, and fatigue. I'm thinking of planning two kinds of workouts...those for good days and those for bad, so I don't just give up completely. I think the bad day exercise will involve a home workout with alot of stretching and maybe a routine on the exercise ball.....

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thats a really good idea- having the two plans, because with a definite plan its easier to do something. Without a plan its very easy to give in.

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Try working in massages. I am a firm believer of them since they have helped me tremendously with fibro. I am now going twice a month and it really helps keep my muscles working and stops the build up of all those hard spots at pressure points. I haven't had as many flare ups since doing this several years ago.

I also found Water aerobics to be the best exercise. It is easier on the joints and muscles while giving a good workout. I don't have to "recover" from Water aerobics like other exercise. I haven't been in a while and really must start back. :)

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I too have fibromyalgia. I am not banded yet. What my worry is, I cant hardly bare/bear to be without my anti-inflammatory. My understanding is, that is something on the no-no list after banding. I have tried to slowly take myself off of it,but can barely get up and walk without it. What am I gonna do after banding? What meds do you all take for your fibromyalgia?

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My doc said that it was OK to take my Arthrotek (an anti-inflamitory). I havn't had any trouble with it. I have arthritis, but I'm hoping after the weight is off that I won't need so many meds anymore. Has anyone tried Cymbalta for fibromyalga pain? I heard that it is good for that.

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I'm on cymbalta and I adore it- it cut my pain level in half. And I have the lidoderm patch - its a topical one that does have systemic affects.

I need to ask about NSAIDs. I currently take suldinac a few times a week- its a prescription thats a little stronger than aleve. With all my medical stuff (including allergies) I'm on about 15 different meds.

I take cymbalta, flexeril, topamax, provigil, zyrtec, guiafenex, lisinopril, nexium, flonase, astelin, hydroxyzine, zantac, estropipate, nuvaring, and the occasional ambien or darvocet.

I'd like to start on something else for sleep-- I see my neurologist in a couple of weeks.

I'm sure this will all be covered in pre op. And I did ask about taking my meds when I first went in- I can take my pills with the band, though I might have to wait for some of the swelling to gone down at first.

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Wow Kyethra, that is a lot of medication! Did the same doc prescribe all that? I would bet that after you lose some of your weight that you will be able to get off of at least some of it. If you have different docs writing the Rxs for all that, I'd recommend having your meds reviewed by an internest.

Good luck!

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I have MS and fatigue is a big component of that too- am wheelchar dependant so have limited ability to excercise at best but have found that the 2 tier approach works best for me. on my bad days, psuedoflares and flares I drop my activity levels back- break everthing down into smaller amounts until things improve rather than dong no activity at all. On bad days I rely more on incidental activity eg activitiy of daily living rather than formal excercise program- any movement is better than none!!

I also agree with AnneM, I am an RN and it is known that "polypharmacy" taking lots of different kinds of meds can actually lead to problems- drug interactions etc. Multiple meds are jsut a reality for some of us but it still pays to have the whole lot reviewed periodcally and each of your treating doctors should now all of the other medis that you are currently taking including over the counter meds. A significant number of people are admitted to medcal wards every year because of medications interacting with each other - the risk gets higher as we get older too!

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Yes, my internest manages it all. I sometimes have another doctor prescribe something but all doctors know all things I take. I also check out all prescriptions for potential side effects. I would really like to take less meds.

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I can relate to that too but its not always possible is it! you are very wise to do your own research about meds, its harder to find out about potential interactions but I have found my local pharmacist can usually help with this, in fact I get all my meds from the same place so she automatically checks out any potential mis matches these days

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I'm a multimeds person too. Be sure and ask if all those pills can be crushed since you'll have to crush your pills to take them. They'll tell you to try taking them with applesauce to cut the bitterness. Didn't work for me. I found that taking them with a swallow of Water and then FAST getting my chewable Vitamin in my mouth, is best for me. I take two GNC Solotron Vitamins. They taste lemon lime without an aftertaste.

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
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      1. LeighaTR

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

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        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
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