my doctor first gave me muscle relaxers and a very mild pain killer called ultrum, which was ok for a while but the effects wernt the same after 4 months or so. my boyfriend came home from school one day very excited because he found an advertisement for a drug that is proven to help slowdown the effects of fibromyalgia, im sure you all have heard of Lyrica. well, i tried that, and 3 weeks later, still nothing. i know its best to wait a bit longer to let the drug have full affect, but after 2 weeks of it having not helped with the pain even a bit, i had doubts, and after week 3, i stopped the lyrica. (yes i know its bad to stop a drug suddenly but i saw no point of destroying my kidneys anymore)

but this week everything has been getting worse. my back,neck,wrists, and esepically hands have been absolutely terriable. please help, im open for suggestions. my next appointment is in 3 weeks, and im not sure i can wait. ive been off all of the drugs for 2 months now, and ive finally caved. please throw out suggestions.

Many of us have this have struggled it with many years as well as trying different meds that may or may not help. It's a slow process. Lyrica has been out for awhile and some have good results and others not. That's the nature of this beast.

By the way, has your doc done lots of blood work and ruled out everything else first? Just curious, because many conditions can mimic the fibro. The Ebstein Barr virus is realy no big deal. Everyone has the virus and doctors who are up on fibro know that it doesn't realy affect fibro one way or another. They use to think EBV caused CFS or CFIDS, but has absolutley nothing to do with that either. On the other hand, were you tested for Mono? I ask cause that can last for awhile also or perhaps that was what set off your Fibro because I think (I'm not sure) EBV mught have something to do with MONO. I'll have to google that, cause I'm not sure.

As far as your pain, unless you have the doctors try a few different things and hit on something that works for you, you may have to struggle with the pain. I suggest you rest as much as possible and try to do few minutes of a day stretching excercising. Don't overdo. Eat as well as you can and build your body up on vitamins and some minerals. If you do a little googling, you may find some suggestions there under fibro or you can find some fine suggestions here also.

Try to keep coming back and get use to the site. There truly is a lot of understanding and support here for you and everyone else, ok?

Please don't get discouraged. It takes time to understand what your dealing with. Don't push yourself hard or keep up a stress filled day, it makes things worse. If your aching real bad, try hot showers or baths...it gives temporary relief but it relaxes you.Take care and OH! I forgot...WELCOME!!

Spruce aka Laura

Post edited by: spruce1, at: 05/01/2008 23:27

Post edited by: spruce1, at: 05/01/2008 23:28

This is a terrible burden for one so young to bear. I hope that you have an understanding and supportive boyfriend and family. I am so sorry that you have to suffer with fibromyalgia at such a young age.

I was going to ask the same thing as Laura, aka "Spruce" about whether or not your primary doc (or rheumatologist, if you have one) has run all of the labs and bloodwork to rule out other diseases and conditions such as lupus, rheumatoid arthritis, mixed connective tissue disorder, etc. There are other conditions including Lyme disease that share or can mimic some of the same symptoms as fibromyalgia.

From your description of excessive aches mainly in the wrists and hands, it sounds as if that part of the pain could possibly be due to osteo or rheumatoid arthritis. You would need to have X-rays, MRI scans and further testing to determine if you have arthritis as part of your diagnosis. Different meds are used to treat arthritis than are used in fibro pain. Many of us suffer from more than one condition and take meds for different ailments.

Anyway, welcome to the forum and I hope you will learn alot. I would recommedn getting one the "Bibles" about fibro just to give you a base of knowledge and treatment about our syndrome. Books such as Fibromyalgia for Dummies,The Idiot's Guide to Fibromyalgia, "Fibromyalgia, Up Close and Personal " (by Dr. Mark Pellegrino, who himself has fibro) provide good overviews of fibromyalgia and have some useful practical things you can do to live a better quality of life with fibromyalgia.

If you go through past blog posts on this forum, you will see that we are all at differenet stages of this disease, and most of us will respond to different meds than other people. Everyone is unique as to the combination of therapies they will try, like water aerobics, yoga, acupuncture, reiki, deep tissue massage, etc in addition to traditional medications used in fibromyalgia. You will find many of us who have tried the over the counter vitamins and supplements as well. Most of us use a combination of treatments.

Welcome to our family and I hope you'll stop back often for support, understanding, friendship, and a place to vent your pain and frustration. This is a warm,friendly,and safe place.

Post edited by: hipmama42, at: 05/02/2008 07:10

I have tried ultram and lyrica with no results, but you could suggest gabapentin, cymbalta(which helps me to a degree but not as well as it used to), or soma to your doc. I am suggesting these because this is what my doc has tried and was willing to give me considering my age.

It takes time, and I know that it is frustrating and hard, but try to be patient. There are now a couple of us on here who are teenagers and all of the other members are great too, so feel free to ask any questions or vent and we will be here for you. You can pm me any time and I hope we can be the help and support that you need.

Much love and prayers, soopergirl

my whole story as far as the mono EBV:

when i was a baby i was premature, by a momnth and a half, no big deal, it was ok, because my perents were both very healthy. but then somewhere along the lines from being a born to a year old i was at the doctor and hospital a lot...i mean, a lot, my mom is still paying off bills from when i was a infant. in elementry school, i was unstoppiable, doing as many activities as i could, karate soccer basketball and lacrosse...all on one night! but still i was visiting the docotr with somthing or another every 2 months. and i had a wierd shoe issue, it was like i could feel a single thread out of place, even through my socks.so i hated wearing shoes. ( my doc. thinks that may have been when the sensitivity started) then in middle school everything came to a sudden hault. i slept for on avrage 12-14 hours a day. my mom was confused and angry, not understanding any more than i did why i slept so much. i cant count haw many times ive been tested for mono, but i know the first time was in 6th grade. everytime the rusult has been negative.

i was diagonosed first with major depression.

but the 20 million different antidepressents i tried didnt supply the magic cure we were hopeing. i was now visiting the doctor 2 times a month, (were all on a first name basis now ) more mono testing more, go home with these antibiotics, which seemed to help until, september of 2007. i got a sinus infection. i my mom not suprised but like me not worrying eather, took me to a doctor, they gave me the antibiotic i usually use, the name has escaped me at the moment but it didnt help. 2 weeks later and im still feeling terriable, back to the doctor and i new antibiotic, then a week later again the doctor again no change, then they perscribed somthing the RN called "the last resort pill" ok finally! im thinking its about time. "if this dosnt work you need to go to the hosopital she said as i was on my way out the door to fill the perscription. well, it didnt work. my mom located an immuneologist, and told her everything and brought my book of a file from the regualr doctors. the immmuneologist was really helpful. she said my body finally build up an immuneity to antibiotics so oral supplements wouldnt work. then she did an allegry pin prick test. she was fasinated when nothing reacted, she then said, your immune system is so suppressed that your body dosnt even try to fight infection. she sent me to get bloodwork, and all of that and gave me a nasal antibiotic, which helped. she called when the blood tests were back, and we came in. she said (i can remeber my moms face, she really really just wants me to be ok, and she was so sad when the immuneologists' first sentence came out) " the bloodtests didnt show any abmormalities, the mono was negative" (everytime me and my mom hoped it was mono so we would at least have an idea of what was going on) " BUT.." she began, "her epstine barr levels were off the chart...a normal high is between (she said somthing like) 200 and 400.. hers are over 2000, thats enough for an island of people to be infected and still have enough to go around" or somthing like that i was just like yea ok, cool, but " how do i get rid of it?" then she said it was always going to be active in my system and mine would never go dormate, and blah blah blah. i stopped listening after she said it was goin to be active forever.

then my rhumotoligst, she was fasinated by me as well, she was in disbelief when the words "she has fibromyalgia" came from her own lips. shes tested me on different occasions. and its always that same intreauged look in her eyes that makes me laugh when she says "its definatly fibromyalgia" shes nice tho, and is really understand about everything, and always recomeneds new things for me to do and try. my therapist wants me to go to John Hopkins so they can...(lack of better words) study me. but i kinda of feel like a porclin doll as it is. noone really knows, that i wake up in pain and my friends wonder why i cant hold up the video camera for more than 10 minuates at a time. only my mom, boyfriend, and my best friend who moved to flordia know. the biggest thing im scared of is being treated differently. and the looks they might give me that suggest there sorry or that i may infect everyone. people who dont understand somthing get frightened. and altho i dont think they would worry to much, i just want to try to live my life as well i can witht this. it hurts and its hard and somedays i just wanna sleep and never get up but, i always feel better after a little excersize.

im so sorry this relpy was so long. i guess i had more to say than i thought. but thank you again. its deeply appriciated.

EBETHD

Well, you've certainly have had quite the history for so young of a person! I know how hard it is when your older, but being young and not living your life as you wish must be very hard on you and I have a lot of empathy for you.

The situation with the EBV is very interesting. I think I'm gonna google that and try to learn about it some more.

Any time you want to talk or vent feel free to PM me anytime, ok? It sounds like you have a pretty good doctor and that is half the battle!

Hope to hear from me when ever your up to it and try to have a decent day!!

Spruce

gone through everything you have gone through at such a young age.

Of course you don't want to be a human guinea pig, but perhaps the doctors at John will find something that the others have missed.

Also, you might look at it a different way: You will get extra and special attention that other patients would not get because your case is of special interest to these doctors, and maybe something they discover will someday help ALL of us who suffer from fibro and chronic fatigue syndrome. Some new treatments might be available to you that are not available to anyone else. At least your doctors DO believe you and really listen to you, and that is a good start, because so many doctors don't understand what is wrong with us.

You know, you don't have to tell everyone exactly what is wrong with you because they don't necessarily need to know. Yes, some of the "normals" can be ignorant, cruel, intolerant, and judgmental, so I find it best to confide my medical diagnosis and problems in those few people in my life who wont judge me and are able to accept me just as I am.

I was first dx with CFS (CFIDS) in 1987 and was told that my levels of EB were up. However, from some research I did, it really doesn't cause CFS.

I do want to check out the EBV to learn what it really does to us!

Ebethd, I agree with Hipmama that trying to explain your illness with others can get very discouraging, so I've learned to say very little. Sometimes we need to explain things but keeping it simple is the best..

Spruce