To be diagnosed...

I have been told by several doctors so far that I most likely have Fibromyalgia. I will find out the final verdict this Thursday. I do not know if it would be considered juvenile considering I am 18.

I am having a hard time coping with these new problems. Before July 9th I was a normal healthy 18 year old then I have a severe reaction to Levaquin, which the doctors believe brought on the FM. Its killing me literally. I am pushing myself through colleges most days. I never feel happy, and It makes me feel worse cause I'm surrounded by my friends who exercise and go to art galleries, where I feel like I can no longer enjoy those activities.

I need someone who has been through this to walk me through it, should I get therapy? Should I get myself into physical therapy?

I have many questions about different medications that most FM patients take. Currently I am on Phenogren (nausea meds), Valium, and Nerotin. I have heard bad things about Lyrica, but wanted a outsiders point of view.

I hope someone can point me in a good direction. I just want to turn back time, and I feel disabled and depressed. 10 hours away from home, all I can do is be strong.

- C.

[avisg]

Carlie I know you are suffering in alot of pain and its really hard being so far from home .you can call whenever you need . I am hoping the doctor will have better answers this week and put you on something that helps you more. Remember you can always come home if you need too its ok...
mom

[deadgamegrrl]

Hi!  Just wanted to say hi and let you know you are not alone!  I am new to this too as of this past spring, and it has certainly torpedoed my former way of life!  Try to pace yourself as much as possible (I know it's hard when you are used to doing everything!) I'm working as a personal trainer and while its hard, so far I'm still hanging in.  I've learned that I can work -or- do chores -or- run a few errands, but not multiple things in one day.  And although I'm still active, I've radically cut back from my old life.  
You may want to consider getting on an antidepressant and also getting into therapy, at least short term.  Depression magnifies the pain & fatigue, and also causes you to kick yourself more about what you can no longer do.  Most FM patients are on an antidepressant, sleep aid and some sort of pain med.  I'm on neurontin like you, I'm not sure if its helping much but it seems to dull the worst of the pain.  Lyrica has helped a lot of people, I am avoiding it for now because I am super-sensitive to side effects and I don't want to risk the weight gain that seems to come with it. I'm pretty petite and afraid it would wreck my joints, not to mention my career.  I'm also avoiding opiates, because I need to drive a lot, live alone, handle heavy weight etc and can't imagine functioning on them. The neurontin makes me a little stupid, but I can function lol.
Let us know what your Dr says on thursday.  
Sending good thoughts & gentle hugs!

[Char1otteBrown]

I have had Fibro for 4 years now. I was a busy riding instructress and spent all waking hours around horses. I tried to carry on as usual but that didn't work and I had to stop working. Every day feels like I've just run a mathathon. I take Co-Dydramol and Amitriptyline and I manage to pace myself. Keep a diary to what activities fire a reaction and at what time of day you are at your best. My best time is 11am - 2pm and I do all I need to in that time then I rest, sleep or suffer in silence. You are lucky if you can still carry on with college or work but do slow down, for your own sake. I carried on working for six months with Fibro and I destroyed myself. After 4 years I have managed to control my life so that I can function. I have not given in just slowed down.

[MEFMJanet]

Hi Carlie,

I'm sorry to hear about your issues.  It does totally suck to have a diagnosis like this, and at your age it has to be pretty harsh.

My disability insurance company insists that I have psychotherapy and I think it's very helpful.  They bring up things you don't even think of, like grieving for your former life and learning how to look forward and be positive about your "new" life.  Therapists are also great for just unloading what's on your mind without fear of judgment as we so often get from friends or loved ones who simply don't comprehend what we're living with.  (My mother used to tell me to just "have a shower and put on makeup" and I'd feel better.)

If you tell your doctor that you "never feel happy" they may want to try you on an anti-depressant but that would be for you and your doc to decide.  I don't think any of us are qualified to tell you what meds would work best for you but as deadgamegrrl indicated, many FM patients are on anti-depressants so it's quite common.  Don't shy away from it if your doc wants to give it a shot.

Best of luck with your appointment.  Please know that this is a wonderful, caring community where you can always come if you have questions or just need an ear to listen to you.  Please let us know what your doc says.  We care.

[carliecaughtfire]

So I got back from the doctors today, I have fibromyalgia. And I dont think its sunk in. Like Im going to most likely have to live the next 60+ years of my life like this?!

I really apperciate everyone, and just hearing other people helps. My doctor is keeping me on the Nerotin, and is making me go to a physical therapist. I used to work out everyday and I want to find activities that I can do without hurting myself. Im also debating if I should get into therapy. I hate therapists with a passion, and I am sorry if you are one haha, but I think I have someone to help me transition from being fully functional to not functioning.

I've also been wondering if it goes away and come back. I dont know where I heard this but, in one case this woman had if for a couple of years, then it would go away for an amount of time. Its just hard to believe that I am going to be in this amount of pain for the rest of my life.

How many 18 year olds have this problem? Like when I meet new people its like "Hi, Im not lazy, I have fibromyalgia." The only plus I have right now is that if we go to walmart my friends push me in the shopping carts.

Though this situation doesnt put me in the "never feel happy" category, it has affected me greatly, but I want to try to get through this without more drugs, but if it comes down to it then anti-deppresents might be a good idea. Do they help with the pain?

One last question, deadgamegrrl (your the personal trainer), and others; what activities do you do to help cope with the pain?

I really enjoy the support from everyone and I hope that we can all get through this together. I know I need it.

[deadgamegrrl]

I'm so sorry you have this, although at least you have a firm diagnosis now.  That was sort of a relief to me, closely followed by total panic. Cymbalta is an antidepressant that also helps w/pain that a lot of people use.  I had a really bad experience with it several years ago when we were trying to find something for my depression so it isn't an option for me, but it might be for you.  Therapists vary greatly, I dislike many but I found a great one several years ago that was really helpful.  I haven't been back to see her since the FM, but I 'm thinking about it.
FM can have periods of remission from what I've heard, at least for some people.  We can certainly hope to be those people!
As far as exercise, commonly recommended is gentler forms of yoga (I used to do Bikram 4-5 times a wk - I've done it once since FM, but I do Viniyoga 3-5 times a week) and tai chi (I bought the DVD, thats as far as I've gotten).  Yoga and tai chi both help calm the mind as well which can be helpful.
A lot of people will say not to lift weights, but I don't think this is necessarily true for everyone.  If you can manage strength training 2x week it will help your body cope and will help keep your bones strong, also you can blame your soreness on the gym lol!  I shoot for 3x a week, usually make 2, sometimes just manage 1).  Don't lift to failure or go super-heavy, you don't want to over-exhaust the muscles and give the fibro something to 'grab on to' and magnify the pain.  And don't beat yourself up if you don't make it in to train, that's the nature of this thing, sometimes you can't leave the couch!
Walking is also good, as is biking or anything in the water (s long as its warm water).  Generally high-impact cardio stresses the system more and can cause flare-ups.
Hang in there, we are all here for you!

[avisg]

I am C's  mom so everyone knows.I read alot about yoga as well this weekend and that it has been helpful.I also have heard you can have flare ups and get better .As dead says a little wight training lightly can be helpful. I really am intesred in knowing everything so I can help her with this .

[Donna10112]

I also am sorry to hear of your diagnosis.  I am 54 years old and have had FMS for 30 years.  My story is that I was just out of nurse's training one year when I had a car accident (at 22 years old) which injured my neck and it never fully recovered.  2 years later I was diagnosed by a chiropractor with Fibrositis- the fore-runner of FMS.  For many years I didn't understand it was a separate condition from my neck.  I have gone through several stages in my life.  Some were very painful and I didn't make much progress.  And during some I was able to function at a closer to normal activity level.  What I am learning now is that there are a couple of things I wish I had known then and I wish I had taken better care of myself in the process.  

The first thing is pay attention to your diet.  Sugar, processed foods, soda- reg. and diet, products containing yeast can all cause problems through the years.  Exercise that includes stretching is essential.  Take as few antibiotics as necessary, they will interupt your healthy bacteria.  Be careful of taking any prescribed meds, but take them if necessary to keep functioning.  Taking them beginning so young, opens you to be sensitive to side effects years later.  Do not take "the pill"; hormones can damage your immune system (there are other types of safer birth control).  Drink tons of water, especially when you don't feel well.  And find people who believe you and are willing to support you.  Therapy is great, but again be careful of the meds.  I saw a therapist for 3 years and she had me on 3 medications, they did nothing to help me through a very difficult time in my life and if anything affected my better judgement.  Fibromyalgia is much more complicated than most doctors understand and most of them push pills first because they're not sure what else to do.  I'm finding doctor's comprehension of this syndrome varies from state to state.  

Most of all, educate yourself on your condition- and here is where your mom can help you.  You have about all you can handle at school at the moment.  Mom if you can, I have two books that are the best two I've found out there that really tell the whole story.  I know from 30 years of this that these two people have the right answers.  The first is:  Fibromyalgia & Chronic Myofascial Pain, Second Edition, by Devin Starlanyl and Mary Ellen Copeland.  You won't believe how comprehensive this book is and yet is easy to read and understand; they cover everything from symptoms to treatment options, and also discuss in great detail another companion disease.  I could have saved myself thousands of dollars if I had read this book and cancelled some of my doctor's appointments.  They also have a website with updated info.                
The second book is:  America Exhausted, Breakthrough Treatments of Fatigue and Fibromyalgia, by Dr. Edward J. Conley.  This book is a little more difficult to follow as he goes even into chemical details, but it's worth weeding through to find what you will be able to follow.  Had I headed his knowledge, I would be in better health today.

Well, sweetie, God bless you.  It's one day at a time and I wish you all the best.  I hope this helps.
Donna 10112        

[mommies4]

I took Lyrica for  about a year and i never had a problem with it ,other then trying to raise the dose I took 150 mg a day at night every night and was better feeling daily,
I 'm of average size    or so    5f 4in 120lbs..All meds  
                                                                and all people are different.

[avisg]

Donna,
Thank you for all of the info I will look into the books . I suffer from myofascial pain from TMJ so I am going to read that one as well .She has been doing better the last few days I think knowing what is wrong has helped her alot I am sure she will post again soon she had been gone the last week .Thank you everyone for your posts all the info we can get the better .

[geminigirl1963]

I'm sorry that you've been having such a hard time.  I've been suffering with fibro for about 12 or so years now and yes, it is a very frustrating illness.  Activities that we can do so easily one day can send us to bed in horrific pain the next.  Unfortunately, quite often there is no rhyme nor reason to our symptoms.  Sometimes you can pinpoint certain things that trigger a flare, but other times they "just happen".

I've never heard of fibro going into "remission", however, it's definitely possible - and common - to have good days and bad days.  You may have many good days in a row, and then again, you may have many bad days in a row.  

Treatment is quite often a lot of trial and error - working closely with your dotor to find the right medications, therapies, etc, that work for you.  As is true with all medications, the medications sometimes used for fibro may or may not work the same on you as they do on someone else with fibro.  While it's important to give a new medication or therapy a chance to see if it's going to be helpful, it's also important to keep in contact with your doctor to let him/her know how you're feeling, whether you feel teh medication/therapy is working, and any side effects you're experiencing.

Depression quite often goes hand in hand with fibro, as it does also with any chronic pain issue or chronic health issue.  Sometimes antidepressants not only help with the depression, but also help with the pain.  Two of the most common ones that are used for fibro patients are Cymbalta and Savella.  Unfortunately, I've not been able to take either of them due to bad reactions to them.

Anotehr thing that is very common with fibro patients is difficulty sleeping.  Many fibro patients find that they need some sort of sleep aid, either over the counter or prescription.  It's EXTREMELY IMPORTANT however, that you do not add or change any medication without talking to your doctor.  Sleep - and good quality sleep - is very important to everyone, but I think especially true for fibro patients.  It's a vicious circle for us - we can't sleep because we are hurting and we hurt more because we're not getting enough sleep.  While sleep is always a problem for me (even with prescription sleep aids), I can definitely tell a difference in my pain levels when I'm having more problems with the sleep.

I was on Lyrica for about a year and at first it did help quite a bit.  Then at one point it seemed to have stopped working so my doctor had me increase the dosage.  AFter that increase, I started having some really bad side effects from the Lyrica and my doctor and I decided that the side effects far outweighed the possible benefits from keeping me on it.  Since the lower dose had stopped working for me and the side effects from the higher dose were too severe, we made the decision to wean me off of it all together.  Many fibro patients have really good relief from Lyrica and many do not have any side effects from it.  Once again, everyone is different, so how a medication affects someone else may or may not be different from how it affects you or how it works on your symptoms.

I, personally, have not found much correlation with what I eat/don't eat, etc. - other than with MSG and nitrates, but I also know of several fibro patients who do find a strong correlation between their diet and their symptoms.  Again, trial and error to find out what affects you either beneficially or negatively.

While some exercise is good to help you from stiffening up, etc., it's also important to not overdo it.  Even if you feel like you can "do more", take it slow - many times with exercise in fibro patients, they do not feel the negative effects of it until a day or two afterward.  You may feel great after a workout and then two days later feel horrible and think to yourself "now what is causing this?".  Another gentle form of exercise that is good, and is easy on aching joints, etc., is swimming - or even just walking in the water.

Another thing that I've found that helps me sometimes with the pain is either a heating pad or getting into a warm shower - not too hot - I've found that any extremes of temperatures bother me - either too hot or too cold is not good - but I definitely find that the heat helps me more than ice does.  Ice makes me hurt worse.

I'm very glad to hear that your mom is so involved in your treatment and so interested in learning everythign she can about fibro and what she may be able to do to help you.  It is very difficult dealing wiht a chronic pain illness, and it's also very difficult for those who do not suffer from chronic pain to really understand how we are feeling.  Having a loved one understand what you're going through really means a lot.

Another book I'd like to "throw into the mix" is one that I purchased for myself shortly after my diagnosis.  It's "Fibromyalgia for Dummies".  I liked it because, while it gave good medical advice and explanations, it did so in more layman's terms, so it was easy to understand.  I also asked my mother to read it and it helped her greatly to understand what I was going through and things she could possibly do to help me.

While it may feel like it, believe me, you are NOT alone.  Feel free to write me any time with any questions, concerns, etc. that you may have.  Or if you just need to vent - we all need that sometimes.

Robyn

[deadgamegrrl]

Glad to know that she has had some better days!  Looking forward to seeing her post again.  I was worried that we hadn't heard anything.  Robyn & Donna give great advice!  Being new to this I don't know nearly what they do but I feel for her and if either of you needs a shoulder you can always PM me!
- dgg

[MEFMJanet]

I have Fibromyalgia for Dummies too, geminigirl !!!!!  :)

(I'll be dropping you a line soon.)

[carliecaughtfire]

I'm sorry everyone!

I'm in college and its been really hectic these past 2 weeks. I feel horrible. Today's been the first day I haven't had to study or do a lot of homework. And my mother told me some of you had been asking about me.

Donna; The problem I have with all this is that, I dislike  taking medicine. I really don't like taking it, its not natural, its what started this whole thing. Also another problem I have is that I go to college, and I eat whatever is at the cafeteria or whats in my apartment. It's honestly not that healthy, but I try. Sometimes I just get a salad, and its just hard.

Gemini; I try and exercise, and lord it hurts, I do try to walk on the treadmill. I tried for a week, and then I could barely walk up the stairs in my apartment for the next couple of days. Had to crawl up them it was kind of funny. I do not sleep well, plus my roommate snores. She has been sleeping downstairs, but it doesn't help.  For some reason, I can sleep better during the day then at night. My doctor said that I should take a 1 to 2 hour nap everyday. I'm afraid to take sleep aids, for several reasons. To become dependent on it, and I'm afraid I wont wake up for class. I have a hard time with temperatures everything hurts. I have to wash the dishes in luke warm water, it that normal? Maybe I'm just weird.

DGG; Thank you for all your suggestions with exercise, and I hope your doing well also, and I hope this is helping you as well.

I really appreciate all of the support, and I do have a few questions still...
Did you have symptoms for a long time or did they come upon suddenly?
Is there anything that you do that helps ease the pain, maybe herbal remedies or anything that doctors didn't prescribe?
Has it affected your life significantly over the years?

I am not doing well, but I'm trying my best. I don't feel like myself, and I've come down to saying, if I die tomorrow then oh well. I realize that this isn't the best, but I've always been a independent girl, and having people help me is hard getting used too. I don't like not being able to hold all my groceries and having to sit down all the time. I think the only fun thing is that if we are in Wal-mart I make my friends push me around in the cart.

I want to thank you all, and I hope I wont be as busy these next couple of weeks.

[deadgamegrrl]

I can certainly understand your reluctance to use meds since a bad reaction to a medicine got you where you are now.  Just keep in mind that you won't react badly to everything.  I know you know that rationally, and I also know I would probably feel a lot like you if that was how I got started with fibro.  I did have an extremely bad reaction to cymbalta (severe suicidal ideation, among other fun things) and it made me very cautious about trying other anti-depressants.  However, I have had major depressive episodes since my early teens, and was not properly treated til my 30's, so I knew I had to do something to not end up back in that black hole!  I also tend to get most every side effect listed for most things so I totally get your caution.
That said, I can't begin to imagine how I would deal with the onset of FMS if I didn't have my depression under some level of control.
As far as diet, some people are really sensitive to what they eat.  I have not noticed any correlation at all with my fibro.  I eat pretty healthy because that's my lifestyle, but eliminating things doesn't seem to change anything.  The weather does have a huge effect on my pain & stiffness however.  The colder or wetter it gets, the worse it goes.
With exercise, just try to do what you can.  Don't push yourself.  It seems counter-intuitive because you probably associate exercise with pushing limits (as do I) but you have to try to find your limits and work within them.  Walk for 5 minutes, and gradually build up, or do 10 minutes of gentle yoga stretches etc.  Once you find the level you can perform without your pain and fatigue going thru the roof, then increase by 5 minutes at a time.  And some days just getting out of bed will be the exercise, thats just how it is!
In answer to your questions, my fibro came on very suddenly at the beginning of summer.  I was in by far the best shape of my life at the time, and then over the course of a few weeks I couldn't even get out of my own way and everything started hurting.  Shortly after that the sleep disturbances started.  I wonder if I didn't overload my body too much by all the activity I was doing at the time (when I first started feeling poorly, I thought I was just overtrained), but at this point it really doesn't matter.  I'm just trying to go forward from here as best I can!

[deadgamegrrl]

Oh, and as for natural remedies:  I take MSM for inflammation & pain, malic acid w/magnesium for muscle calming, creatine, d-ribose & CoQ10 for muscle recovery, and vitamin d & b12.  A lot of people recommend valerian or melatonin for sleep, for some reason valerian hypes me out (as does benadryl) and melatonin doesn't work for me but give it a try.
Please take care of yourself.  PM me anytime you need to vent.

[ree4tu1]

Have you considered Lyme Disease? I say that because in July ticks are rampant and you had a severe reaction to Levaquin which is an antibiotic.  With Lyme you get what's called a Herx reaction when the bacteria is attacked which causes a severe reaction, Also you mentioned how suddenly the symptoms came on, which concerns me.