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    Old 06-09-2011, 06:26 PM
      #91  
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    suzette1954's Avatar
     
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    Originally Posted by coolcat
    This fibro is a terrible thing and very misunderstood by the general population.

    I suffer so much and I have Restless Leg Syndrome as well.
    As my kitty walks on me to get into my lap, almost scream with her touch causing pain.

    I am on Cymbalta and on gambapenta but I am not sure if either one of those medicines help.

    Have any of you experienced "fibrofog?" I haven't seen any one commenting on that yet.
    I too suffer from restless leg syndrome and I have lymphodema along with the fibro and asthma. I bought one of those little pedal thingings that you pedal on the floor. No more restless leg as long as I use it before going to bed. If you can make yourself (my dr. gave me a prescription for a pool this spring)get in the water. This has changed my life. NO more YMCA camp kids yelling and splashing me. Just me and the birds and the trees. I love it so much. Im in it everyday even when I have to drag myself outside.
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    Old 06-09-2011, 09:06 PM
      #92  
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    Mine shows its ugly head more in hot weather also.I have notice more pain some days during the month than others. Maybe I just move around more,I will not take meds. for this because it affects kidneys, my dad was on dyallise(can not spell )I am very careful with any med. that side effects are kidney related. Started taking L- carnitine 30 days ago, maybe showing a little sign of improvement. Hope you feel better soon.
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    Old 06-09-2011, 09:10 PM
      #93  
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    The heat and humidity makes mine worse, everytime. I have really had a flare up during this extreme hot weather. Although, cold weather does that, too. Not a good happy medium, I guess. Any pressure changes, FM raises it's ugly head.

    Hope you get it under better control soon. Sure saps energy. I used to be the best housekeeper around, but with this FMS, I can't do what I used to do, although I keep trying.
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    Old 06-09-2011, 09:19 PM
      #94  
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    Have any of you ever visited http://www.FibroHugs.com. It's a website that has helped me cope with it a lot better.

    I need to say that I just visited this website and they are redoing it and a lot of the info isn't there anymore. Sorry!
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    Old 06-11-2011, 07:47 AM
      #95  
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    Thank you for sharing, I also have the fibromyalgia caused form chronic pain Rheumatoid Arthritis-the heat is a killer, I keep my ac on and we have ac at work, or I would never make it through the day. They put me on Lyrica, I can only take it in the early evening so I can get out to work the next day.

    Originally Posted by romanojg
    I want to share with you something that happened to me personally. For years I'd have all of sudden all over body pain; to the point that I had to go the ER but no one could touch me or help me in the car because it hurt so bad. I go and they'd run test and shoot me up with laugnem and send my home with pain pills and it would be two or more weeks before I recovered completely. Then in Feb 2008; I had this happen (for the last time). When I got home from the hospital and finally made it back to work I had an email from my DIL about aspartame poistening. The symptons was what I had been experiencing for years. I ordered the book Sweet Poisining; and even though I'm a hard sell on many things this book made a believer out of me. The stuff it does to your body. I had drank diet drinks for over 30 yrs and aspartame came on board in the 80's which when I really thought back to it was when my problems began. I went off of aspartame and I have had no bouts of unbearable pain since then; baring my arthritis and degenitive back disease but that is heridity. When I told the specialist he asked me to talk to his group that have fibromyalgia because he can't get them to understand. Aspartame has three ingredients in it and one of them is formalgahyde; I know when I die they will put in me but I don't want it before hand. This stuff is made overseas by a country that doesn't use it in their diet drinks but they sell it to us. I don't know if you use aspartame but it's bad stuff and now I read everything because I've found it in things that don't even say it's diet. I found it in cherry flavored Blistex of all things. Please pass this on from someone who hasn't had to deal with this pain since I made the decision to stop using it. On top of that after 10yrs of using thyroid meds; I no longer have to take them. I feel for you because I kind of know what you are going thru and even with the arthritis I know that the weather has a lot to do with how our bodies work.
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    Old 06-11-2011, 09:33 PM
      #96  
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    Saw my dr today and she lowered my Lyrica back to starting dose and if the edema isn't gone by next sunday I have to call her and get a diuretic. Next appt she is going to do an exam of my spine. She thinks I have arthritis going on too which might explain why the lortabs work so well for me. Apparently they make fibro worse.

    If the lower dose of lyrica doesn't stop the edema then I have to get off of it. I hate when a med works great but the side effects are more dangerous than going without the med!
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    Old 06-12-2011, 07:05 AM
      #97  
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    My hardest thing was giving up DP; I love it. After months I decided that I'd drink it but I'd go for the sugar. You couldn't get me to drink anything with aspartame in it for nothing. I'm not taking any chances of relapses. It has definitely made a difference in the quality of my life giving it up. I had also had two unexplained siezures and even though I don't know that aspartame caused mine I do know it does cause them; especially with airline piolets; I guess its the altitude.
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    Old 06-12-2011, 06:29 PM
      #98  
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    I had edema last summer, went to the Dr. and they did an ultrasound on my leg and found a blood clot, he put me on Coumidin, now I am on Coumadin for life because I had a blood clot 36 yrs. ago. I hope you have been tested, if not, discuss this with your dr. Its scary, dont know if its from meds, or blood clot.
    Linda King
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