Why wear a ribbon?

"I wear this ribbon to let others know I have Crohn's and to raise awareness of t..." (P1nk3)

MDJunction to me

"MDJ has changed my life in soo many ways. I don't know where I'd be today without it! :)" (sweetheartsuzee)
We comply with the HONcode standard for trustworthy health information:
verify here.
Fibromyalgia Online Support Group
A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together.
Join This Group
Group Home   Forums   Articles   Members (1756)   Diaries   Leaders   Guidelines
Related discussions:
<< Start < Prev 1 2 Next > End >>
10/09/2007 19:00
juliejewels36
Gray Ribbon
Posts: 9
New Member

Send a PM
Give a Hug
I was just diagnosed with Fibromyalgia, and now I have a newer understanding of what life is like with this condition! I am looking for support that someone can help me find a good medication to try, and tell me a bit about medications to avoid. I have Tylenol 3 and I use it for Bursitus in my hips. But then I read here that that is not a good thing to take with Fibro. IS that true and how come.

What can I expect now and is there a way to head off symptoms before they pile up on me? Thanks for being friends with me, and I look forward to getting to learn more about this dibilitating illness.

Reply  


10/09/2007 20:02
Aunt Rinn
Purple Ribbon
Posts: 246
Member

Send a PM
Give a Hug
Stay away from stress at all costs and keep yourself well rested! You came to the right spot coming here, you'll find lots of new things here and support for the rough times. I've learned much about myself through being here. I don't think there are any wrong or right medications, as with this condition, medications really affect each of us in a different way. If you find that Tylenol3 gets rid or cuts your pain down, then keep using it! Make sure you find a doc that understands Fibro. Who diagnosed you and if it was your primary care physician, did they refer you do a rheumatologist?
Reply  


10/09/2007 20:29
frazzeledbutgoin
Pink Ribbon
Posts: 18
New Member

Send a PM
Give a Hug
Welcome Juliejewels.

I have had fibro for about 13 years and I have found that fibro is a very disabling disease. Believe it or not the key to your fibro being under control is good sleep. If you don't sleep everything goes whacky. No sleep means that the pain pathways (the signals in our brain that tells our body that we wre in pain) are even more malfunctioned than normal. When we sleep the pain pathways are shielded a bit more than when we don't sleep.

If the doctor hasn't already put you on something to help you sleep that is probably the area that you want to address first. They usually start with a anti-depressant. This doesn't mean that your depressed it is used to help you get into a deep sleep. Anti-depressants originated as pain killers and they found that they had benefits for depression as well. Elivil is a common one for newly diagnosed fibromytes. I've just been put on Cymbalta, Trazadone and Zanaflex and that seems to work for me, for the moment. I started with Elivil 20mg, 13 years ago. I'm not a real fan of Elivil, it would either not work at the low dose or knock me out for 24 hours at a higher dose. Everybody is different and different doctors like to give different meds. The main thing to remember is that your a chemical and your putting a chemical in your body so if one doesn't work another will.

As far as the pain killers. There isn't a right or wrong pain medication to take but you will read that Tyllenol 3, Vicodin (all of the short term medications) are not the best. The reason is that you have to take them all of the time, they start to not work after awhile and they have acetometophen (sp?)in them and that long term is not good for your liver. If your doctor doesn't seem to be willing to change your meds, and what you have is working, you may want to go with this for a while. I took a lot of Vicodin, everyday for many years, before I was properly diagnosed and my liver is still okay.

If I can suggest anything to head off symptoms before they pile up it would be to get your rest, stop when you get tired but don't completely stop for a long period of time. As much as your body hurts you have to push on. If not, the toxins will lay in your muscles and you feel 10 times as bad in the long run. The long and short of it is that you have to try and find your balance, take care of you, and give yourself permission to take care of yourself.

It all sounds so simple when you read it but it's not easy at all.

I'm glad that you have joined the group. Be sure to let us know how your feeling.

Janice

aka frazzeledbutgoin

Reply  


10/09/2007 20:38
HAMPTON7026
Purple Ribbon
Posts: 701
Group Leader

Send a PM
Give a Hug
i agree with frazzeledbutgoin. sleep is very important. i tried various drugs for sleep with no success. i have finally got to sleep well for the first time in years and it was solved with a hypnotherapy sleep cd i got from amazon. i too have had to use vicodin to control pain and still haven't had any problems. welcome to the group we'll all be hear if you have any questions or just to to let off steam.
Live one day a time, Never give up the fight!!
Reply  


10/10/2007 23:00
juliejewels36
Gray Ribbon
Posts: 9
New Member

Send a PM
Give a Hug
Thank you all for the helpful information. It has been so difficult and this really helps alot. I don't want to take Tylenol 3 for very long. I wish I could get rid of it. I had a horrible headache tonight but it went away. Please keep me in your prayers as I will pray for all of you. JulieJewels
Reply  


10/11/2007 05:57
Snoopy30
Blue Ribbon
Posts: 1411
Senior Member

Send a PM
Give a Hug
I agree sleep is very important. When I was first diagnosed 6years ago my rheumatologist sent me for a sleep study test. It turned out I have sleep apnea. I now use what's called a CPAP machine at night. It makes my sleep so much better. Sometimes I fall asleep on the couch instead of getting in bed and boy can I tell the difference the next day. Not only is my fatigue worse but so is my pain. It's very important that you have a dr. who understands all the things that go with FM and treats all of them for you.
Reply  


10/11/2007 06:17
jaime1978
Lime Green Ribbon
Posts: 1099
Member

Send a PM
Give a Hug
hello, and welcome. Fibro is a nasty disease, and in my opinion it's hard to keep at bay. I totally agree that good sleep is important...BUT I have read many studies that people in our condition never reach the "healing" sleep. Doubly whammy. They just approved lyrica for fibro. It's a newer form of neurotin. I not only have fibro, but lupus, RA, scleroderma, and lyme disease....and I'm not even 30. I thought 20's were supposed to be great. Mine have been a living hell. I also read a study that 20 out 20 fibro patients were tested for lyme disease and came up positive....something to think about and research. I have over 60 symptoms. But DO NOT expect a regular doc to tell you this...they are ignorant to it. Mine laughed at me. But I was sure something more was going on. I saught out a lyme literate doc LLMD, and he is treating me clinically because most of the time the test comes back negative. I wouldn't wish how I feel on my worst enemy, it's a nightmare. And I have two young toddlers whom I am scared to death will be sentanced to a life of hell as well. Had I known I had all this, I wouldn't have had kids. Not that I am wishing them away, in fact, they are what keep me getting up every morning. Many docs do NOT understand the pain that can come with all the diseases.....very sad. Pain managemnt is a joke depending where you live. Where I'm at, they wanted to send me 8 hours a day, 5 days a week, for 4 months for long term pain clinic....um yeah, I have time for that. To sit in a friggen hot tub.... Just research, research, research.
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
Reply  


10/11/2007 15:35
bajaraquel
Purple Ribbon
Posts: 84
Member

Send a PM
Give a Hug
This is an appropriate discussion for me. I've been crying for two days because I am so miserable. The one thing about FMS is that it is an individual disease. What helps me may not help you. The one common thread I have found is sleep. We all suffer from not getting the deep restorative sleep our body needs. I've tried just about everything under the sun for sleep and it is my toughest issue. I have to switch medications about every six months and I have little to no tolerance for pain meds. The depression that comes with the pain and lack of proper sleep is also a big battle.

My best advice is to try one thing at a time for a minimum of two weeks to decide if it works or not. Find a doctor who is well educated in FMS. Do not be afraid to tell a doctor to take a hike if he isn't listening or doesn't take you seriously. They are not god and it is called medical "practice" for a reason.

Stick around you will get some great support here

Reply  


10/11/2007 17:30
leelee1
Purple Ribbon
Posts: 48
Member

Send a PM
Give a Hug
It is so hard to deal with having FMS, esp when you realize you may have to deal with it the rest of your life.....I think research is really important and of course finding a good doc (which I have yet to Really do, anyone have any tips on that?) I know I have a lot of trouble sleeping, sometimes I feel more awake at night than during the day....Symptoms can be different for everyone depending on the person, of course....One supplement that I found that actually Helps is called StemEnhance, if I take it about 1pm every day it helps me not to crash so hard into mid-day fatigue....hope this helps a bit, take care of yourself....
Reply  


10/14/2007 21:34
bshapiro
Purple Ribbon
Posts: 440
Member

Send a PM
Give a Hug
for what it's worth - the only drugs shown to help with deep sleep clinically from what I've see are

Flexeril (a muscle relaxant)10-30mg a bedtime

nortryptyline (amyltryptyline) (a first generation antipsycotic/antidepressant) also 10-30mg @ bedtime

these are both rated "A" in peer reviewed clinical trials

they are for their effect on deep restorative (Alpha) sleep only, not to relax your muscles, or treat depression. for me nortryptyline had more side effect but that's because my DR. didn't read the literature and I got up to 75MG/day whereupon I experienced difficulty urinating.

now that I know the correct dosage I'm trying it again a the lower dosage- I had no problems urinating at dosages <50mg/day

Reply  


<< Start < Prev 1 2 Next > End >>

Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read more.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved