Fibromyalgia

[Nishu]

Guys, I'm scared. For the past few months I've been having various aches and pains that seem to have no reason or rhyme. I've ignored them for quite some time, basically because I found it dificult to go to my doctor and tell him that I hurt somewhere, at various points at different times, pretty much 24/7.

How can I explain that? I have this pain in my wrist, and sometimes below my elbow, behind and below my ears, sometimes on my rump or in my chest or in the joints of my hands or feet. Sometimes it lasts for moments, sometimes longer. Sometimes it will show up on both sides in the same place at the same time, some times one side at a time. Just wearing my headphones sometimes places enough pressure on my scalp to trigger the pain. Places on my skin will feel almost hot as though I've been burned. These pains often are at spots that are tender to the touch, but not just at the tender points used to diagnose fibro. I feel like I'm dreaming it up, just because my pain seems to make no sense.

About two months ago, I got a headache that lasted for about 16 hours. The first one went away, but from that time on my headaches were almost constant. I'd have pain in my head at various places, sometimes it would last for hours, sometimes it would pass in seconds. After a couple weeks of this, I finally made an appointment with my doctor and got referred to a neurologist.

I waited for two weeks to get into the appointment. The wait was torurous. When I finally made it into the appointment, I sat in the exam room waiting, crying, afraid of what he'd tell me. He did the standard neuro exam and questionnare, and after it was over I was informed that my headaches were likely tension headaches. (I suspected as much, I have been under a ton of stress and the pain has steadily been getting better.)

He also mentioned that the rest of my pain sounds like fibromyalgia, but he didn't say much aside from a quick description and even quicker rundown of what we know about the condition. At first I was relieved and I didn't ask any questions. It didn't sound serious and I wasn't facing certain death. He ordered a cat scan just to be safe. (That's why we have cat scans, he told me. He knew I was freaking out.)

Everything is on ice until my next appointment, about 3 weeks from now. I'll have my cat scan next week. Most of the time I'm fine with a potential fibro diagnosis and worried very little about the cat scan. Sometimes though, when my pain flares up and I've got little else to think about, I'll start to feel sorry for myself. The pain isn't unbearable, but how can I not be worn down after months of nearly constant pain? I've spent so long just trying to wait it out, trying to turn the other way and hoping that it will disappear if I don't look at it. I've thought for so long that I'd have to be genuinely ill to be in this much pain, so shouldn't a fybromyalgia diagnosis be a relief?

After a couple days to stew on it, I'm really not so sure. I went in hoping to get answers, but fibromyalgia seems to mean simply "You're going to be in a lot of pain and no one really knows why." That's not really an answer. I might not be dying, but I may not get better. The pain could get worse. He can't tell me that, either.

I spent the first day or so after the appointment turning the word over in my head, trying to grasp what it meant. All the symptoms had to fit, and all the aches and pains would have to fit neatly within the word in order to ease my mind. Every future challenge has been considered, and I know nothing of how this may affect me. Will school be any more difficult? Would another child be out of the question? What about a career? How will I know a any other illness if and when it hits me?

This isn't discussed. I have nothing more to say about it than "It hurts." I've been avoiding conversations lately to avoid the temptation of bringing it up. Who wants to talk to someone that complains that much? For a while I tried to discuss it with my husband. I'd point to my wrist, under my arm, my leg, my back... "I hurt here right now."

"Maybe you should start running again."

That conversation ended fairly quickly.

Last night I came as close as I have come to breaking. I sat on the kitchen floor wanting to cry, but not quite able to do it. My husband asked me what was bothering me, so I basically broke it down for him. "I hurt. All. The. Time. If I have fibromyalgia, I could be in pain for the rest of my life."

"Can't you take some tylenol or aspirin or something?"

"I would be taking tylenol all day long, like, forever."

"Well, not while you sleep."

In all fairness, my husband is the most caring and considerate person that II know. I just don't think he's getting it. I'm feeling the need to through myself a pity-themed party and he's repeatedly declined the invitation. Maybe that's a good thing, because dwelling on it doesn't seem to help. But I'm tired, I hurt, and I'm finding it quite difficult to accomplish the billions of things that have been waiting for my attention after two months of being useless. I just need you to understand that it's not laziness and it's not a choice that I've made. I mean, I don't think it is?

I think too much. Fybromalgia is a hoax, says Dr. Quack and random angry internet citizen. Until I go to the doctor next month, I can't read about it. Too many people promise quick solutions and easy answers, and I'm ashamed to say that I'm too eager to believe them. Artificial sweeteners? Lack of exercise? Poor diet? Wheat? Dairy? Mold? Perhaps it was something they haven't mentioned, the diet pills I took long ago or a grape I ate off the floor last summer. I really don't need any more guilt added to my sleeping problems and constant worry.

And now I feel rather silly about this whole bit of drama. My head isn't hurting and I've only got a little pain from sitting for so long, so again I'm starting to wonder if I've dreamt it all up. Obviously I don't have fibromyalgia, because I'm really not hurting right now. How silly for me to sit and cry over it. And this is how it works, swinging back back and forth between shameful pouting and embarrassed regret over my self-pity.

I'm an anxious person, and since that first severe headache I haven't been able to relax. My doctor says he doesn't think there's anything going on more serious than the tension headaches, but he could be fibbing, you know? Maybe he know something he's not telling me. Maybe he's just trying to prevent me from freaking out more than I already am. (I made little effort at composure during that last appointment.) I suppose we'll put that to bed on the 13th of November, two days before our move is scheduled.

I apologize for the excessive moaning and whining in this post and I thank you for reading it through. As you can tell, I really haven't been able to talk to anyone about this and I have no contact with anyone who has it. I just noticed that this topic has been discussed and that there are a couple people here who have it, so I thought I'd try to get some guidance here. Perhaps I shouldn't discuss it too much until my next appointment. I'm just going to be a bit edgy until then.

I'd appreciate your input and advice. If anyone wants to share their stories with me I'd truly be indebted.

Thanks.

[Jaded]

I can relate. Fibromyalgia literally means "muscle pain". No one knows what causes it. I finally got a diagnosis of lupus after two years of fighting doctors to find out what was causing the muscle pain. It's getting much worse lately. I'm feeling like I don't know if I'll be able to work for much longer.

It is depressing. I'm here if you want to talk.

[Jeanna]

Fibromyalgia is awful. I know I have had it and myofascial pain for 10 years now. Your life is not over, but it will change. You will have many emotions, from sadness, mad, depressed, bewilderment--as in why me?, just to name a few. You will learn different ways to cope. There are somethings that will help, but nothing will cure it. Do not buy into the quick fixes, it's just not that simple. The first and main thing is make sure you are getting a good nights sleep. Even if you are sleeping thru the night you may not be getting restorative sleep. Look at your covers are they all over? Do you wake up feeling just as tired as when you went to bed? Sleep in one of the biggest thing with Fibro. Also over time you will figure out what will make you feel worse and learn how to change it.
Just remember that your life may be different but it is not over. You will learn to cope and still have a life.

Good luck and God bless.

[AmyMCGS]

A good friend of mine has Fibro, and she suffered for a couple of years before finding the perfect doctor and the perfect medications for her. It was a matter of finding a doc willing to adjust and change medications until her symptoms were under control. What I'm trying to say but not wording very well is that it may take some time, but I believe it is possible to find the right treatments to manage your pain and other symptoms.

As for your frustrations and fears right now... that's perfectly normal and natural. Anyone facing an unknown medical issue goes through fear like that. I've been there, crying in the shower because I was trying to "stay strong" for others.

I hope you get some answers soon!

[TreasureFinder]

I've had chronic pain - something similar to fibromyalgia - for 15 years. There are things you can do to try and help yourself feel better, but you'll have to do some experimenting to see what works for you personally.

Getting more doctors' opinions is a good thing as well. I only got a decent diagnosis about 3-4 years ago (pain is from trigger points in the muscles). Since it started in my hands/arms, they first said I had carpal tunnel, which is a nerve problem and not related to mine at all. One hand specialist suggested it must be in my head, just because he couldn't figure it out; that really made me fall apart at the time.

Hang in there. If it turns out to be fibromyalgia, people here will listen, and give you advice if you want it.

[Lambie]

Hi there, my husband has been battling this for a few years....at least that we've known it was fibro...prior to this he has had migraine headaches, severe acid reflux, hypertension, bowel issues, restless leg syndrome....for YEARS!!! Each time we'd go to the doctor it was another test....oh my gosh I think he's been tested for everything at this point!!!!!!!!!!!!!!!!!!! He is on an array of medicines to combat each issue....sometimes the issue gets better or reaches a level and stays there....or it gets worse....right now he is up most of the night kicking his legs and losing sleep...tons of pain in the legs as well as stomach problems. I do sympathize with you as it certainly does change your life as well as family members. Your in my prayers, take care of yourself as best you can, Katy

[ubumartin]

I have fibromyalgia and I was tried on several different anti-inflammatory medications. I found that I was in pain with or without the anti-inflammatories so I decided to stop taking them. I do take a muscle relaxor called Soma most nights to help me sleep. I do occasionally take ibuprofen or tylenol when it is real bad. The best thing to do is exercise, get a good night sleep and don't give in to it. I have good days and bad, I always have pain but it ranges from mild to moderate. I have pain in my joints but not redness or swelling. I do get regular blood work to rule out thyroid and rheumatoid arthritis. Good luck to you, I hope you get some relief.

[pita1213]

first things first, BREATHE!! i know it's frustrating not knowing what's going on, it's frustrating to hurt all the time, it's frustrating to not have your loved ones understand, it's even frustrating to be frustrated. so take a few deep breaths. it will be ok.
other than the up coming cat scan, have you had any tests done? your doc should order blood tests to rule out other things like arthritis and lupus. lyme is another thing they will test for. then your doc or a rheumetologist will do a tender point exam to see if you have and how many you have of the tender points. when they do this, if it hurts say so. it you feel like you are going to jump out of your skin if you don't scream because it hurts so much, go ahead and scream.
keep a log of your pain. jot down notes on your calender to see if there is any pattern to your pain. do thing get worse near your period? does rainy weather make it worse? don't obess over it, but jot a few things down about how you are feeling.
if it is fibro, your life isn't over. yes you can still have more kids, yes you can still work, you should be able to do almost anything you want to do. you just might have to do it slower, not as often, or just in a different way.
there are medications that can help, it just takes some trial and error to find the right ones for you. keep records of what has been tried and any side effects you have from them.
ignore all those ads that say they have a cure, ignore all those docs that say they can fix you up in no time. they are just after your money and won't do anything to help you.
ignore the doctors that say it doesn't exsist, ignore those forum posters that say it's not real, or no you cant have fibro you must have this condition. ignore those that say, i had that but it was a hoax, i really have this, you need to use this lab to get tested for what i have. they are not your doctor.

listen to yourself and a doctor you trust. if you don't think your doc is listening to you, or is helping you, look for a new doc. keep records of when you have tests done, and if you want, get copies of the results. i have a little binder i keep it all in so i don't have to try to remember when soemthing was done or what meds i have tried when i'm hurting and just want to scream. this goes where it turns out to be fibro or something else.

take care of yourself. don't run yourself ragged. if you are tired, rest. try a warm bath or shower to help ease pain.
if you have any questions, you can pm me. i have been dealing with this lovely disease for a long time, with an official dx as of last year.
hang in there!

[powerfm1]

I have fibro, osteo arthritis and liver disease.

The two things that I have found to help with my fibro is Ultram - only when needed and now just started Lyrica - when needed instead of the Ultram. I like the Lyrica, it doesn't make me drowsy and so far it works well.

At night I take Zanaflex for the osteo and Neuronton - 3 300 mg. tablets for the Restless Leg Syndrome and I get a good night's sleep.

First off, it's hard to reconcile to the fact that your body is giving you a hard time. But, you have to treat it just like you would if you had diabetes or heart disease.

Go back to your doctor and tell him you want a prescription for when it's bad and something to help you sleep when you are having a bad episode. You have to direct your care when you have chronic conditions. The doctor's aren't always going to offer medication, you have to tell you're doctor you want it.

There will be bad days, but there will also be decent days when you can function pretty well. Be thankful for what you have, because it can be managed.

Peace!

[rainbowgc]

I have had fibro for over 20 years and I can definitely emphasize with your anxiety and fears.

[Nishu]

Thanks everyone for your your advice and well wishes. I feel quite a bit better now but I'm still pretty anxious.

So far all I'm look at is a CAT scan, but I'll be moving here in a couple weeks so I'm afraid anything else is going to have to wait until we reach our new home.

Thanks again, guys.

ETA, I have not been officially diagnosed, to be clear. I guess we'll talk more about it at my next appointment.

[pita1213]

the cat scan is most likely to rule out neurological issues and will probably come back clear. but they do them just to be on the safe side. you'd have it done sooner or later, might as well get it over with. after that someone will probably order some blood tests, again to rule things out. try not to worry about it all too much. whatever it turns out to be, there is some way to cope with it, and you will be ok