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Those with Fibromyalgia ,,,question

Those with Fibromyalgia ,,,question

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Old 06-08-2011, 08:39 PM
  #71  
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Heat and humidity actually make me feel like my muscles melt. Causes extreme weakness, and exhaustion. I am a barometer. I can't tolerate cold either. Fibro fog is a terrible thing. Sometimes I am better other days I can't think or spell my own name. Spent too many, many years being told nothing was wrong with me. I got worse and worse, eventaully collapsed and this time didn't improve enough to return to work. Cymbalta did nothing for me. Lyrica didn't either until a different doctor jacked my dose way up, now it's a wonder drug for me. Each person is different but fibromyalgia is real. Good doctors know this, quacks still denie it exists. If your doc insists fibro isn't a real illness, CHANGE doctors! Just be sure you get diagnosed by a specialist in fibromyalgia.
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Old 06-08-2011, 08:42 PM
  #72  
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Originally Posted by Riversong
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.
I also do not use any aspartame products,,,,BAD stuff for our bodies...
ditto...bad stuff and it is in EVERYTHING!!
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Old 06-08-2011, 08:46 PM
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Originally Posted by nancia
no one has mentioned lyrica. it is wonderful for me. i still have flares, but on a daily basis i can usually function at some level. if i don't take the lyrica it's too painful to get out of bed, roll over, cuddle with a cat, etc.
it's comforting to know that the stuff i've been dealing with since hi school (when i was considered a neurotic) is as real as you and me. i'm sorry for all our pain, but i'm sick to death of the stupidity in the medical profession. if they can't cure it or at least treat it they say it doesn't exist. bull fwacky!!! in that case i want full coverage from the insurance companies who won't cover you if you have fibro. can't have it both ways. we're not talking easter bunny here. we're talking a major malfunction of the body.
I was put on lyrica at a low dose (50 mg 3x a day). Changed my life! Then I started seeing a new dr and he has me up to 150mg 2x a day and the pain is the same and I have retained so much water that I'm starting to have complications from it. I am going to schedule an appt with the original dr and either get off the stuff or back to the low dose. I'd rather have the pain then the side effects.
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Old 06-08-2011, 09:22 PM
  #74  
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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 also am on gabapentin. I have found I sleep better and it has really calmed my restless leg syndrome, I take 600 mg 3 times a day. Also, I find I have more fibrofog just before a flare. I find I have trouble trying to say what I think. Some words just won't come out. Another sign of a flare. I now get about 5.5 hours sleep a night. and even a couple times I have gotten 7 hrs. WOW!!
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Old 06-08-2011, 10:54 PM
  #75  
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does anybody have trouble with muscle pulls and tears? i've had both shoulders repaired, both knees repaired and now i have a bicep tear. is this just me ?
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Old 06-08-2011, 11:10 PM
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I do not know what you are talking about....but what I do is cry in the bathroom, wash my face....then try to put on a happy face the best I can and come out....then maybe go back in and cry some more.....oh well.


Where is the chocolate?????

Seriously....hang in there....love ya!
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Old 06-08-2011, 11:33 PM
  #77  
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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.
I used to drink about 4 or 5 super big gulps (each either 32 or 64 oz, dont remember which) of Diet Pepsi a day. I slowly but surely became close to crippled with the pain. My Dr diagnosed me with Fibromyalgia. Then I read an article on Aspartame poisoning. I quit the Diet pop cold turkey. Within three weeks I felt like a new person. That was about 10 or 15 years ago. I rarely drink any diet pop now and if I must use sweetener, I use sugar or honey. Aspartame is poison!
Plus, drinking diet pop didn't help me lose any weight. So not only is it pointless to drink it, it is poisoning your body.
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Old 06-09-2011, 12:10 AM
  #78  
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I have never used anything with aspartame in it. One reason is when I was pregnant with my first child my Dr gave me an article about how pregnant women and children under the age of 5 should avoid it at all cost as it could cause serious health risks. I figure if it isn't safe for pregnant women or small children it isn't safe for anyone.
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Old 06-09-2011, 03:34 AM
  #79  
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Originally Posted by Linda King
Originally Posted by IBQLTN
Originally Posted by watterstide
FMS is ffected by weather..i feel like heck this week..i am so sore. mind isn't working so good either..lost words,forgeting things..typical flair up.

am going to have to go see the Doc and get a shot this week.
i think it is called "terdol" anti imflamitory ..

my husband had an accident this week..so between that and the wether..i m in a flair..
Since I switched from Lyrica to Cymbalta my 'mind' problems (as watterstride put it) are much better. At one point on Lyrica everyone thought I was having a stroke: garbled words, slurred speech, etc. but it was the Lyrica. Also the neurolotist placed me on Vitamin D and B as I was 'extremely deficient' in both. Both effect the brain.

I do find that heat and especially humidity make it worse but frankly it's all I can do to keep working. I don't have health insurance (turns out you can't get private insurance if you have fibro -- turned down by everyone I applied with). I don't get sick days, personal days etc. DH had a disabling stroke in 2008 so I can't quit work. Fibro isn't a recognized 'disability' from a social security standpoint so basically, I'm in a no win situation with the fibro.

I have my computer remind me every hour to get up and walk while I'm at work so I don't stay in one position all the time which helps. My arthritis is also a lot worse when it's hot and humid. I actually do better in cold weather (Florida cold, that is-LOL).
I was diagnosed in "95 with Fibro, severe arthritis, could not remember my name or how to write, had to have therapy for right arm, as it froze, needless to say, I did get turned down the first time, got a lawyer and I received my disablility, I havent worked since. You need to fight for disability, get a lawyer, and it doesnt cost you a thing, except at the end if you win, most lawyers get 3% of what you receive, off the top. You wont miss it, as they get it first. Dont give up, keep trying for disability. Good Luck!!
Linda King
In order to file for disability you have to not be working I believe and I can't quit because I can't pay our bills on just DH's soc. sec. from his stroke. BTW we got disability for him within 5 weeks of our initial application with no lawyer because I submitted records from hospital, in patient rehab, in home rehab, outpatient rehab, neurologist, general practitioner, speech therapist, etc. So I know it can be done but they don't consider me disabled.

I also have severe arthritis but it's osteo not rheumatoid so it's not a 'disability' according to uncle Sam. I've had 4 surgeries on my left hand/wrist, two bones have been removed, one joint fused and now it's moving to my right hand. It makes typing very difficult and painful but I no longer have health care so no more surgeries for me. (I still need a joint replacement of middle finger joint.) AND, you don't qualify for medicare until you've been on disability for two years, so there you have it.

At 58 1/2 years young, 65 seems really far away from a pain management standpoint.

OK pitty party is over now ... I have to go to work!
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Old 06-09-2011, 06:50 AM
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I just tried Cymbalta and it made me ill. Lycra takes too large of dose to work. Would have to have my husband take me everywhere. Have been on many drugs and it seems I have a reaction to everything I have taken. Started deep tissue massage a couple of weeks ago. Have never felt so much pain as I do with the massage. Dr. always told me I was wound tighter than normal. If the muscles never relax because of fibromyalgia, then it seems to reason the pain from massage would be intense. Hope the massage does more than double duty. One to help with hadaches, back surgery problems and the FM.
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