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Posted 8/30/2009 7:32 AM (GMT 0)

I have never posted on a forum before and am a little confused on what exactly to do. If I have a question or just want to talk do I submit a new post? I don't want to break any rules or be a bother. I have Fibromyalgia, Sjogrens, Osteoarthritis, injury to my Sacroiliac joint from a fall in the Military and I am in pain 24/7. I take methadone and oxycodone for pain along with ibuprofen. For the longest time I was told by doctors that there was nothing wrong because all my test results were negative. I finally went to a Rheumatologist and was diagnosed. It has taken me 15 years to get this far. I am curious to find out if there are any new treatments for Fibro that work at least 50%. I don't know how much more I can take before I go out of my mind. Why do doctors deny the existance of fibro? Why is it so hard to get a doc to do diagnostic testing for any of these conditions? And they wonder why people self medicate, they refuse to offer any pain relief for fear we might become addicted to and abuse narcotics. I use mine as directed because I am thankful for what ever pain relief they give me and if I abuse them and get caught I will lose them and that would be unbearable. Thankyou for this site, I have a hard time finding anyone who understands. Family has no clue except for my oldest daughter, she suffers from the same conditions I do. If it's not real why then do we all have the same symptoms, no possible way it could be shear coincidents, not this many people. Thank you all again. My sincere best wishes to all of you who suffer as I do, my greates hope is for a cure. yeah

Posted 8/30/2009 12:31 PM (GMT 0)
Hi and welcome to the forum.  You won't find a friendlier or caring bunch of poeple anywhere!!!  I'm not sure what insight I can give you as I have only been diagnosed for a year.  I take Lyrica and OTC pain meds prn.  As for new treatments the only one I have heard of is Savella and I am not going to take it because of the side effects. (HBP and Tachycardia)  Already have that don't want more ya know?

 

Make sure to read the Fibro 101 board there is a wealth of information there...and anytime you have a question or need to rant feel free that what everyone is here for and the mods are GREAT!!!

 

Take care

Missy

Posted 8/30/2009 1:09 PM (GMT 0)
Fibro is real. Our problem is that we will have to be taking the medication you mentioned a very long time. Some of the members here do have doctor's that will prescribe those medications. I can tell you from my own personal experience that it takes the pain away for a couple of hours. I was taking Norco, which is a form of narcotic, for about a month after my gall bladder surgery. My pain got much more severe right after I took the med and then vanished for around two hours..what a relief but then it did the same again when it wore off. It did make me want to take another and I think it's best that I stopped when I did.

Right now I'm taking two meds for my fibro; celexa and neurontin; which help me sleep. I still wake up with the fog, still have trouble balancing myself, but the pain seems to come and go and it's not nearly as bad as it was.

Some of the members take magnesium or other supplements that I'm sure they will tell you about here. I'm waiting to see what my doctor says about them. We all have different things going on with us so I want to make sure that these supplements won't interfere with whatever else I am taking and that's something we all need to do.


Try to eliminate as much stress as you can and eat protein..it really does help. And get a full nights sleep...I had to eliminate coffee and diet soda's from my diet and found my sleeping was much better for this.

Keep smiling hon

Jhemi
Posted 8/30/2009 1:53 PM (GMT 0)
Hi,

    I'm glad you found this forum. I was lost before I came here. I am still pretty new here, but I have found that posting, and reading the post that others place here has been a great source of help. I can understand how you feel about Dr.s and medicine. I have had alot of trouble finding a Dr. to listen to me. They always run a bunch of test and tell me I'm fine. Obviously I'm not fine or I wouldn't be in pain every day of my life. Right now I only take a narcotic pain reliever at night to help me sleep. during the day I Take Advil( Helps a little, but not much). I used to think I must be nuts. How could I be in so much pain if there is nothing wrong. When I first heard of FM it was like a light came on. I am not nuts, and there is a name for my problem. Now that I have found this forum I know Iam not alone. I hope you can find the right Dr. to help you manage your pain. Keep on posting and reading here. It's not only a great resource, but it's also fun.   sometimes laughter really is the best medicine. turn

Posted 8/30/2009 2:26 PM (GMT 0)
Welcome sunflower, glad you have found us. I am sorry you are suffering. You
mentioned you had an injury to your sacroliac joint. Did you have an MRI to rule
out any nerve compression in your lower back? That is extremely painful. I had back
surgery to remove part of a disc from my lumbar region and it helped. Prior to that
I was on vicodin for nine months.

Fibromyalgia is so difficult to diagnose because it mimics some autoimune diseases.
And then there are so many doctors that believe it is a condition that it is all in your
head. One of my past doctors chalked it up to menopause. It is a frustrating journey
to get a diagnosis.

For fibromyalgia I take Savella and flexeril. I also have an autoimune disease and take
an immunosuppressant for that. I have been on the Savella for 6 weeks and it hasn't
provided any relief. The flexeril takes the edge off.

Come and post whenever you want to vent, comment or ask a question. There will
always be someone here for you.

We Care

Robin
Posted 8/30/2009 3:28 PM (GMT 0)

Hi, Sunflower, and welcome!  The biggest problem about fibromyalgia is that the doctors don't know what is causing this.  They keep searching and trying different medications, but we still don't know what causes it.  That's why some doctors think it's all in your head!  We all know that is far from the truth and, if these doctors ever came down with this illness, they's change their tune...FAST!  A good doctor will run you through tests to rule out other illnesses that have the same symptoms before a diagnosis of fibro is given. 

Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibro, including What Else Could It Be and also Dr.'s Respond to New York Times Article.  This is very good and gives validity to this illness. 

I take ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and Vitamin D3 for my fibromyalgia.  There are links in the Fibro 101 all about malic acid/magnesium supplements and how they work in your body and also a link all about vitamin D deficiency.  Many with fibro are deficient in these vitamins and nutrients.

As far as using this forum, you can ask questions, vent, etc.  HealingWell also has forums for arthritis and Sjogren's.  Look for our Forum Quick Jump on the right hand side above the post and you can go to those forums too.  But, please don't post the same post on all the forums you visit.  If you write a long post and you want others to read it, you can put a link to the original post.  The Forum Rules can be found below the second blue bar at the top of the page.

I'm so glad that you found us and joined in.  Don't hesitate to ask questions.  We are here to help you.  Hope to hear more from you soon.

Sherrine

 

Posted 8/30/2009 4:03 PM (GMT 0)
Welcome to the family Sunflower. No it's not a coincidence that there are so many people in the world with the same symptoms. Fibro has been around for a long time under different names. Don't ever let anyone tell you this is all in your head, well okay, your head and the rest of your body maybe.

 

It took me a few years to get a dx cause my biggest problem was fatigue and still is most of the time. My doc had ruled out everything else it could be, which is listed in the fibro 101 thread, and it took an all over been beaten with a baseball bat flare for it to all click for him. I didn't know much about fibro til I went home and researched it that day and I knew that was it.

 

I was already on amitriptyline and xanax for anxiety which may have been helping the pain part of fibro without my doc or I knowing it. I tried cutting back on the amitriptyline over a year ago cause of the side effects and went into a horrible flare for two weeks til I got it back up to where it was. That was enough to make me believe that it is helping. I take tylenol 4 times a day. I also have a really bad medphobia from having so many bad reactions with my stomach to different meds so I have not tried any of the new meds for fibro. I get them filled and they sit in the cabinet til I throw them away.

 

I use heat in any form for relief, wet or dry. I use lidoderm patches for areas close to the skin. They are 4x6 sheets with lidocaine in them that stick to your skin. You need a rx for them and it's 12 hrs on and 12 off. I use a TENS unit to interrupt the pain signals to the brain when it's really bad.

 

Many with fibro also have low vit B12 and vit D. My B12 is okay but my D is low.

 

You will love it here and get lots of help with dealing with fibro and all that comes with it.

 

luv and hugs

Marlee

 

 

Posted 8/30/2009 4:55 PM (GMT 0)
Welcome Sunflower! You will love this forum.  Everyone is so helpful and they listen (unlike some people we all know, doctors included).  I have found the Malic/magnesium supplement to be very helpful.  Pain and stiffness are my bigest complaints.  I also have a few other things going on, mostly the arthritis in my hips and spine.  Lack of sleep use to be a huge problem for me but since I started taking amitriptyline at bedtime I sleep through most nights or only get up once for a potty break.  I also take voltaren for the pain.  I have been tested for all of the'what else could it be' things.  I was dx'd earlier this year finally, although I have been having the symptoms for a very long time.

 

Looking forward to hearing from you again.

 

Puppylover

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