Always looking for an answer!

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Mon, January 12, 2009

I have to go to the doctor AGAIN! I have Fibro for about 10 years now. I am disabled, no insurance and mad at the world (sometimes). I have to go to the doctor about every three months to medicate to function. I always feel like they don't believe me and feel like I have to beg for medications. There is nothing to make it go away so you do what you can to "look" normal. I think that if fibro had a big mark that everyone could see, the world would see our pain but because we all "look" normal we are either depressd or psycho. If you live with chronic pain...you are justifially depressed. We are not happy to hurt every day, all day. In a nut shell, if we could find a doctor to help maintain medicines so we can maintain everyday life and not be treated like drug addicts, we could get off the couch!

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BettyJ712

1/14/09 6:37pm

I know how seeing drs every month sucks. Have you read Dr. St. Armund's article/book about the Guaifenisen Theory? I take Mucinex, OTC, twice daily to help me live with Fibro. My dr also has me on Neurontin, Amytriptalline, and some other meds. I haven't tried Lyrica. I don't need anything more that makes me sleepy or gain weight~LOL!

Did you know that Flylady of www.flylady.com also has Fibro? She has a saying, "I can do anything for 15 minutes." I use that mantra many times each day.

singthat

1/14/09 8:48pm

I finally got to the doct0r and I am trying the lyrica. I'll let you know if I get sleepy or whatever. I tried nuerotin but it didn't work for me. BUt an added delight is that I have pnuemonia but other than being extra achy..I am okay. So my trip to the Phymacy was almost $200 with $125 to dr. so I get to decide what not to pay. I, too, will be okay!!!

blastmom

1/15/09 7:25am

I have fibro also but i've never heard of taking Mucinex OTC helping. Could you tell me a little bit about that? I take Lyrica, Cymbalta and Celebrex. Thanks.

singthat

1/15/09 2:55pm

I took lyrica last anight and couldn't get out of bed today...I am so messed up. I can bearly function. I called and they said go to emergency room, like I have money to waste, so I said I will wait till it wears off and if not by tomorrow go to the emergency room. I was reading the label and I have every side effect and it ain't fun. It is taking a while just to post this. I keep misspelling words. Thank God for spellcheck! I'm going back to bed till this wears off. FYI- I have major muscle spasams in my back and that was the first thing to stop. I wish it didn't mess me up. It was nice not having my back muscles up all night. Oh well.......

BettyJ712

1/15/09 6:06pm

Here's a link to more info about the Mucinex I take:

Whhp://en.wilkipedia.org/wiki/Guaifenisen_Protocol

I found a book be Dr. St. Armand at the library when I was first dx-ed with Fibro. Mucinex is the best type of Guaifenisen I can find that is similar to what's in his book/protocol. I don't worry about cutting out salycilates. I get in a WORLD of pain whenever I accidently miss my Mucinex dose. Hope it works for you too. For myself, I swear it makes me feel human again.

Marika

1/16/09 6:08pm

Finally, I found it: http://en.wikipedia.org/wiki/Guaifenesin_protocol

At first, I tried correcting the URL myself, but for some reason it didn't work. Maybe I too misspelled something. (I was very careful, but that's of course no guarantee.) Incidentally, when you want to share a URL, the easiest way to do it is by selecting (drag your mouse across the text with the left mousebutton held down - some browsers will select it for you when you click on the text) the text in the addressbar of whatever browser you use and then copy/paste it into your post.

In any case, THANK YOU! Now I will check out Mucinex. On my last trip home (to Scandinavia) I found out that both a female cousin on my father's side and my half-sister (same father) have FM. I'm guessing there's something to the genetic predisposition idea.

Jackie

10/11/09 10:00am

I have such great sympathy for all of us.Sleep is esential.Would like to know who is getting the swine flu shot.A theory is also the 1st swine flu shot in the 70's may have caused fibro?!

Mary Alice

1/15/09 9:13am

Coping with Fibro is hard for us. Since some people do not know what is like to have pain 24/7. I am on cymbalta and tramadol. I take this at night, and tramadol during the day. Unless i do not want to be dizzy or sleepy during the day. I wing it with 600 mg of ibuprofen. I meditate if the pain lets me. I do stetch excercise when pain is not too bad. But i do not like the weather change that is when it is bad, it feels like you want to tear your arms from your bones or something like that. So I feel you my friend. And prayer help and i will keep you in prayer. Hang in there not bad for a 10 yr veteran with this.

Anonymous

1/15/09 10:14am

hello my name is sofyy. i need any adviced i am taking cymbalta 2/a day but it gives me so much nausea i don't feel drowzee or diziness but its real bad. i have fm for 6 yrs. and is really bad.

Mary Alice

1/15/09 7:09pm

Hello sofyy. I have fibro since diganois in 2006. I have ins. with my husband work. But I had to apply for SSD, since I did not have any income coming in. I know the fustration you are going thru. One works all ones life then it is like it slowly is taken away from us. I am 53 yrs. I have diabetes, neropathy to my hands, fingers, and feet. And pain 24/7 some days worst other days able to do around the house. You say you take cymbalta, at first it gave me nausea, now it does not. And I take 60mg at bedtime with tramadol 60mg too. I take the cymbalta also for my depression, and the neropathy it helps. Sometimes I do not even know what hurts anymore since it hurts all over. I was denied 3 times for my SSD. and I waited with a lawyer. Until I finally got a hearing and they hear my pain and angry cries. With patiences, faith, and prayers I just got helped. Have you tried eating something light before taking your meds sometimes that helps. God Bless my prayers are with you.

Anonymous

1/16/09 8:17am

HELLO DEAR FRIEND. IS ME SOFFY THANKS SO MUCH FOR TAKING THE TIME TO REPLY TO MY COMMENT, IT WAS REALLY GOOD FOR ME. WELL ABOUT THE CYMBALTA ISSUE THAT I ASKED YOU ABOUT (WHEN I TAKED IT) I JUST EAT ONE SLICE OF TOAST BREAD AND A GLASS OF WATER BUT IT GAVE ME THE NASUAS SO, YOU THINK THAT I CAN TRY TO EAT A LIGHT MEAL INSTEAD AND TAKE IT? BECAUSE I SUPPOSED TO HAVE IT 2 TIMES A DAY ONLY. ALSO ABOUT THE MEDICARE COVERED I DON'T KNOW ABOUT THAT. FIRST BECAUSE I GET THE DISSB. THRU MY JOB AND SECONDLY I AM ONLY 48, AND ALSO THE MEDICAL INS. IS THRU MY HUSBAND JOB. DO YOU THINK I CAN GIVE A TRY TOO? THANKS AND HAVE A WONDERFULL DAY, EVEN THAT IS SO HARD... TAKE CARE HUGS, FROM SOFFY.

MARY ALICE

1/16/09 2:54pm

HI SOFFY, MAYBE A LIGHT MEAL COULD HELP. IT IS DIFFERENT FOR EVERYONE. ABOUT SSD YOU COULD CONSULT WITH A LAWYER. IT SHOULD NOT COST FOR A CONSULT. IF NOT NOW THAT YOU NEED THE HELP MAYBE AFTER YOUR LONG TERM ENDS IF IT DOES END. CONTINUE TO SEEK FOR INFO. CHECK IN ALTERNATE MEDICINES. OLD FOLKS REMEDIES. GREEN TEA DOES SOMETHING FOR ME IN THE AM BEFORE MY COFFEE. WITH LEMON AND HONEY. ITS HARD TO FIND NON-PROCESS FOODS. VEGGIES, WITH SOUP AND CHICKEN IS GOOD FOR THE SOUL. SOMETIMES TI CHI WORKS WITH OUR BODIES DUE THAT IT IS SLOW MOVEMENT AND BREATHING IN AND OUT. REMEMBER LIKE IN THE KARATE KID. THIS IS WHAT I TRY AND SHARE MY EXPERINCE. GOD BLESS.

Anonymous

1/15/09 10:11am

HELLO DEAR. MY NAME IS SOFYY. I AM 48 YRS.OLD I HAVE FM FOR 6 YRS. MY PAIN NEVER GOES AWAY FOR GOOD, SOMETIMES IS HIDING FOR MAYBE FEW HOURS BUT SHOWS AGAIN LIKE MAGIC IN MY LIFE. I AM DISABLED SINCE 2002 I COULDN'T GO BACK TO MY JOB, EVERYTHING IS CHANGED IN MY LIFE, AND THE MOST DIFFICULT THING IS THAT BECAUSE THIS ILLNESS IN SO INVISIBLE TO EVERY OTHER PEOPLES EYES IS REAL FOR US NO MATTER WHAT. AT LEAST I HAVE MED. INS. THRU MY HUSBAND JOB AND THE LONG-TERM DISS. IS THRU MY JOB. TRY TO FIND OUT INFORMATION IN HOW YOU CAN GET MED. INS. MAYBE THRU THE STATE YOU LIVE AT OR ANY KIND OF PROGRAM IN YOUR NEIGHBORHOOD HOSPITAL OR CLINIC. GOOD LUCK TO YOU FROM THE BOTTOM OF MY HEART. ATTE. YOUR FRIEND SOFYY.

Anonymous

1/15/09 1:44pm

I also have Fibromyalgia & Rheumatoid Arthritis, for the past 7 years. I understand how you feel. If you are disabled, you should be able to get SSD & Medicare. I would suggest finding a Disability Lawyer in your area, they should be able to help you to get your SSD & Medicare.

1/15/09 10:25pm

AGREED...you said it sista

josiemara

1/16/09 12:41am

I have had fibro for about 25 years now, it was tough the first 15 years, I did everything the doctors told me to do. At some point I woke up and realized that you have to combine the natural therapies, eastern medicine and western medicine to make it all work. For example, what you eat makes a huge difference in how you feel. I have found that for me a high protein diet helps me immensely, gets rid of the fatigue. Get some stretching exercises from a physical therapist if you can manage that. The bottom line is that you have to stetch out the muscles and areas that give you pain, they will keep tighening if you don't do something to loosen them up.

History on me, I have all 18 fibro points, have tried and cannot tolerate any longer any medicine known to the doctors, am holding down a fulltime job, and leading a life outside of work that is about 50% full after work hours. There are things that I know, I can never do; aerobic exercise, and any body pounding exercise. I can work up to a slow walk. I find that if I can just somehow keep moving, I can get thru the day a bit better.

Get some ice compresses, or those ice gel paks, put them in your freezer, apply them daily to your hot spots. Mine are my neck, shoulder blades and lower back.

I take a supplement that helps a lot, I have found that a vegatarian formula is the easiest to digest since I have IBS also. I take a magnesium/calcium/zinc/Vit D supplement. It gives your body what you need, and the supplements help you relax. I take it after dinner, and it relaxes me for the evening.

Stop eating the whites if you do, they are death to fibro. White sugar, pasta, white bread. I find eating the veggie type pasta doesn't set me off, I use honey instead of sugar, and limit my rice intake. I buy bread that is fresh baked and avoid the preservatives since they set me off. I am also wheat intolerant. You can find all this out by keeping a food journal and noting how good you feel after eating each meal. Get off the sugar it is hell for us fibro patients. Learn about accupressure, it is your friend. Lots of info on the internet.

Best of luck to you, please keep writing, I want to help you get better.

NancyK

1/18/09 3:03am

Anyone here taking this which was just ok'd by the FDA for fibro? How is it going?

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