I've just found this board and am grateful to have found others who can understand. I am not a hypochondriac. Even having a diagnosis of fibromyalgia isn't enough for some people. I hurt worse in the winter and seem to be fighting depression more now. :(

I stopped taking all the medicine when I realized that I was still in pain, only in addition to it, I was dealing with the side effects. I've tried St. John's Wort but didn't have any luck with it. About all I take now is Melatonin. I take it every night, hoping for restorative sleep so I won't hurt so much. It worked for a while, but now I'm afraid I'm becoming used to the dosage. I've had to up it considerably. I'm up to 1200 mcg's a night.

I've recently been told I have something called de Quervains, which has caused severe pain in my thumb. I ignored it for months because I assumed it was related to the FM. Turns out to be caused by repetitive stress.

I was just wondering what things people in here have tried that actually worked for them and how you cope with the constant pain.

Uh, hi there. I don't mean to sound rude...but, what do you mean by having a dx of fibro isn't enough for some people??

I know you're not stating anyone in particular, but I would like to defend those of us who DO search for other dx's besides fibro.

Let's see....I was dx'd in 96. On one hand I had dr's believing in fibro. , on the other hand I had dr's not believing in fibro back then.

Even last year, my emg dr told me fibro was a waste basket dx.
This year my psychologist tells me that fibro is real and that chronic myofacial pain syndrome is the same as telling someone they have fibro.

I sleep soundly. If I wake up to go to the bathroom...I'm back asleep as soon as my head hits the pillow. (not so with many fibro people)

The only pain med that I take is tylenol (and that's maybe 1 a month)...And now effexor for jaw clenching. This is very unusual for someone w/ fibro to not be in such pain.....

Nobody called you a hypochondriac in the first place.....but some of us who do have more unusual symptoms than most fibro's and wish to make sure the dr's aren't missing something don't think of ourselves as hypochondriacs.

I myself do not have any secondary issues with my fibro (like arthritis, lupus, ms, mg,....I was not in an accident, nothing fell on my head, etc) I think that this had me questioning the dx also.

But, I know you're not picking on anyone in particular with your statement. Just wanted to let you know that there are a few of us who have searched for other causes of our symptoms....but, that doesn't make us a hypochondriac.

:wave:

Hey,

First off, when going through the process before you get a fibro diagnosis, you are being tested for SOOO many different things, it's hard not to think "what if".....but that is very different from being a hypocondriac.

To those who believe they have something other than FM, I say keep looking. Only you are the one who knows your body best and if you don't truly feel it's FM, keep searching for further answers.

The thing about FM is that even with so much more information on it now, there still isn't a lot. And a lot of doctors still aren't belivers. Instead of bouncing from dr to dr I choose to accept the diagnosis of FM (I've had all other mimicking conditions ruled out) and try to move on with my life the best I can and get treatment for what works for me (chiro, massage and acupuncture).

The confusing part is we are all so much alike but so different at the same time. You probably won't find two fibro patients EXACTLY the same.

luv2read, i too take Tylenol but also Trazodone to help with sleep (i used to be able to sleep so much, i wouldn't hear 3 alarm clocks!) and Zoloft for anxiety (had it on and off for years). Like you, I had no accidents at all. The rheumatologist said that was unusual (not impossible, but unusual). I also have no secondary issues (well, unless you count the anxiety). That's very odd, I've never heard of an FM patient able to get by on 1 Tylenol a month. I've improved a great deal and still take Tylenol daily. GOOD FOR YOU!!

Either way, the whole point of this is, we are all different and to each their own. If we don't listen to our bodies, who will??

dear anstar,
it is sad to be called names by those who lack knowledge. have pity on them and their ignorance.
have you tried ambien for sleep? it has very few side effects and you wake rested not hung over. i sleep now thanks to that little white pill.
coping with constant pain is easier than you think. when my hands hurt i walk. when my legs hurt i paint. when a concert of pain is playing thruout my body i hop in my movie theater and snuggle down with popcorn in hand and watch a flick. staying active is the key to having less pain. swim, walk, garden, anything you derive pleasure and activity from. i like to walk down to the lake and feed the ducks each morning. rain or shine i bundle up and go. often i watch the sunrise with my duck friends.
it is pouring rain and winds whip the tall pine trees. i wonder how the storm will look with the moon to back lite it.
sweet dreams.
peace,
bluelakelady
ps i think your post was misunderstood. hope i got to where you wanted.

:( Luv2read, you completely misunderstood what I was trying to say. I wasn't accusing anyone here of calling me a hypochondriac, I was stating that I've been accused of it myself IRL and thought that here I would find people who understood what I'd been going through. I'm glad you can sleep soundly, and get by on only Tylenol. I, unfortunately, cannot. I'm lucky to get 5 hours of sleep a night, and Tylenol may as well be M&M's for all the good it does me. My grandmother was diagnosed with FM about a year before I was (by a different doctor in a different city), and my mother has been showing some sensitivity to the trigger points as well. I'm not sure how you were able to conclude from my very short post that I had accepted the first dx given to me, or that I hadn't suffered for years before I got a diagnosis.

Bluelakelady, I also think my post was misunderstood. The very first thing I said was that I was grateful to have found others who would understand. :)
I took amitryptaline for awhile, but really hated the side effects so I stopped that one. I've discovered an extreme sensitity to cold, so icing just makes matters worse, but heat will help sometimes. I have an electric blanket to keep my bed warm, and a hot bath will sometimes help to ease the pain. I took ambien for a while too, but my doctor discontinued it because she said it's best to use for only 7 days, so as not to become dependant. :( I wish she'd put me back on it, but right now I'm out of luck. With my insurance, I have to have a PCP and the only one in my area is kind of "old school". She and I don't really have a great rapport. I'm hoping to be moving to another town soon and maybe I can find a doctor I like better.
As far as trigger point massage: I'm not sure I could do that. Whenever anything touches those spots, I come out of my shoes. :( The pain is so out of proportion to the touch it's not even funny. I still go to work every day, and take care of my boys, but I've noticed a bigger drop in quality of life recently. It's always worse in winter (such as it is in south Texas) and I'll be better when the weather turns warmer. Sometimes it's just hard to think that far ahead. I think I'll try the capzasin, see if it will work for me. Thanks for the suggestions.

Sorry anstar. I guess maybe I did misunderstand you. I'm sorry that you've had to go through the labeling yourself!! The dr's who don't believe in fibro are the problem with all the labeling. I do feel for you though, I've been down that path also.

I'm very, very touchy when it comes to my health and looking for answers for the past 9 years. ok, I guess you figured that out. :eek: Sorry.

I think that my pain is very much reduced do to the fact that I'm at home. I can take a hot bath when I need to , or take a nap when I need one. I'm afraid to go back to work and have my symptoms flare up big time.

I do feel bad for those of you who have to work and deal with the symptoms of fibromyalgia!! I'm sure that you guys have many, many more flare ups than I do.

Ok, next time I get off the path, just give me a shove back onto the right one..... ;)

:cool: It's alright Luvs2read, I understand. I've felt the frustration for years. I, too, can get a little touchy. extends hand in friendship. :D

I sometimes wish I didn't have to work, but then wonder if that would make it worse. :confused: Between the constant pain, and the mind numbing fatigue, if I didn't have to get out of bed every day to support myself and my boys, I don't know if I would. It's entirely possible that I would just wallow in self pity and get steadily worse. That's not to say that those who don't work would do that; just that I, personally, might.

I'm wondering if I should just bite the bullet and go back on an antidepressant. The vicious cycle of sleeplessness causing pain, causing sleeplessness - all made worse by stress, is becoming more than I can handle. I hate the dry mouth, weight gain, metallic taste of food, etc. that goes with Zoloft or Elavil, but I don't know what else to do. Just "riding it out" is wearing me down. :(

your doctor is misinformed on ambien. with people who have fms there is usually no dependance or need to increase dosage with time. as with all sleep aides there are a few days of no sleep if you quit taking them "cold turkey". i have taken it daily for almost 4 years. it still works and i have never increased from the 10mg i take.
do some searching on the internet about ambien and fms. i know i have read studies about this. print out what you find and hand deliver to your doctor. not every doctor is intimidated by patients who know more about their illness than them. in fact, it may inspire your doctor to go the extra mile. give your doctor awareness of your ability and willingness to research, and bring your results in for debate. have you called in your new town to find a doctor yet? start early, ask about the doctors knowledge with fms. the nurse practicioner will know how many patients the doc sees that have fms or immune/cns disorders. ask to speak to her/him. sometimes the front office person will know this information.
we are all sensitive here on the ole fms site. some days worse than others. the written word does not offer the completeness of thought like a face to face conversation does. perhaps if we all bear that in mind when we read each others post, we will see the pain within the words, and respond with love. it is important also that we remember the fibro fog aspect of all our thinking. often words are left out and the meaning must be contemplated on before responding. let us all take into account how fragil we are each time we come here.
this is our home away from home. we create the atmosphere here!
give your kids a big hug for me.
peace,
bluelakelady
ps have you tried a heated mattress pad? i found it worked better if the heat came from beneath me and i used a light down comforter on top. flannel works too. on really cold nights i use both. heavy covers on your body all night causes pain. i also put one of those bumpy foam things on top of the heated mattress pad so i won't feel the bumps in it. the bumps in a heated blanket drove me nuts.
rain has fallen hard all night and continues to do so. i love the sound.

Friends :D

I know what you mean. I would know that my attitude would be much better if I found some work. I'm just scared. I do volunteer for a reading program that helps little kids with reading. I love it!!

Well, I just started taking effexor at the beginning of last yr. Oh, I was such a mess before that. I finally broke down and told my family dr that I need help.

For me, the effexor has been wonderful for helping me relax my muscles at night and not grind my teeth so much when sleeping. My head pressure has lessened in the morning, which is awesome for me. I used to get up in the morning banging into walls, dizzy, soooo tired, much tightness from the neck up.

I've noticed since taking anti-d that I get up better in the morning. I still have depression...I don't think anything will ever take that away completely. But, at least I'm out of bed.

Can you talk with your dr about this? Stress just makes all the symptoms soo much worse.... :bouncing:

:wave:

luv,
words are art. you my friend are a teacher of art. volunteering is work. delight in serving your purpose. because you exist and you have fms, tmj, children will know the magic words hold. there is no word for how important what you do is!
peace, and a standing ovation,
bluelakelady

I'm in limbo about the job transfer right now, so I haven't done any new doctor shopping just yet. Until I hear something from headquarters, I don't know if I will be able to transfer or not. (Internal politics... I work for the state police.)

I'm trying to get my doctors office to even respond to me right now. :( It's so frustrating to be put on hold constantly, and then to finally be transferred only to get a voice mail promising to "call me back as soon as possible." grrrr. Yeah, right. I've heard that before.

Because I'm a single mom, working for the state, I have to watch my pennies very closely. Every time I go to see the doctor, it's a $20. minimum charge. That may not sound like alot, but when you bring home less than $2000.00 a month, it adds up in a hurry. I took this job because the benefits package was great, and then two years later, the state cried poverty and drastically reduced our benefits to balance the budget. :( So now, I make less money than private industry and have worse benefits. I can't go to work in private industry though. Just the thought of it makes me very nervous. I'm sure it's irrational, but I've worked in law enforcement (first as a deputy, then as a civilian when health issues intervened) for so many years now that I don't know how to do anything else. I'm not selling myself short. My sister works in private industry. She makes 4 times the money I do, but has been laid off twice. I can't handle that threat hanging over my head. I have to know exactly how much money I'll make every month, and that it will always be there, no matter what. I stand in awe of people who own their own businesses or work in sales. My BIL does both. It amazes me, but I know I couldn't do it. :( I think I've babbled long enough here.

Luvs2read, I think volunteering to read is wonderful. :D I also love to read, and have managed to instill that love in one of my boys. My younger son is still a little resistant, he much prefers movies, but I'm working on him. He loves the Harry Potter movies and I've told him can't watch them anymore until he's read the books. We're reading them together now.

Thank you for your kind words BLL. I do appreciate it.

Oh, how the little ones love to come out into the hallway and read!! And they love to be read to also!! Then they love to tell me about their lives and their families.

I'm always in a better mood when coming back home after volunteering!!

You'd be surprised at how many kids are soooo behind in reading. All it takes is times and patience to help these little ones out....and I have plenty. ;)

wow anstar, I sure hope it all gets figured out!! That's got to be very stressful. My next door neighbors are both deputies. I'm not sure where you live, but up here (don't know if were allowed to say where) the wife I know makes good money. she'd like to get out on the road and work, but for now she's booking the people when they come in.

You sound like such a great parent!!! I have 2 boys. They do come first don't they. They don't care how much you feel like do do, they just want hugs and kisses and I love you's!!! :D

That's great that you read with them!!! That's very important to the little ones. It's great quality time....snuggly time!!! :wave:

I used to work in the jail, way back when I first started. I enjoyed it.

I actually have three children. My daughter is grown and living with her boyfriends family. She has a 5 month old boy I haven't seen in 3 months. :( (That's a whole other issue for me, but it definitely adds to my stress.) My boys are still with me. I don't know how much you're allowed to say in here....... One is a teenager and the other is in elementary school. I hope that's vague enough. :angel: I don't want to get banned after less than ten posts. :eek: I've read the rules, really.

I'm having a flare now like I haven't had in some time. My hips hurt so bad that even sitting is painful. Standing or walking is torture. I hate it when it flares like this. :( It's even affecting my shoulders worse than usual today. I can see it now. Turning the steering wheel to drive home will be agonizing.
I got less than 4 hours of sleep last night. The insomnia is killing me. Maybe that's why I hurt worse today. <sigh>

It sounds like you have your hands full with kids that age.

I have one in 3rd and one in 6th.

Sorry to hear that you're in a flare right now!! I know when I'm in a flare I just want to hide under my covers and sleep.

The weather here is driving my body crazy too. We got lots and lots of snow last weekend. I did go out and play in it w/ the kids though :D

Our house sits up on a hill and we have a long driveway. So, us three were seeing who could go the farthest and fastest on their sled down the driveway!!! Ok, the oldest boy was cheating and trying to hold us back! :p

It was fun, but my body didn't like the walk back up the driveway.

Sleep is very important with fibro. Fatigue is one of my worst symptoms (next to the TMJ). I sleep like a log....but am always sooo tired. I don't know if its the pressure in the head and eyes from the tmj that makes me so tired or what.

Hope you start to feel better!! :wave:

It sounds like y'all had a great time. :D I've never seen enough snow to create a decent snowball, let alone slide down. I'm kind of glad though. Since cold makes me hurt worse, I can't imagine how bad it would be in a state where winter actually means consistent cold weather. Our high here today will be about 80 degrees. Tomorrow it will only be 50 though. :( That drastic back and forth is rough on me too.

I wish there was something I could suggest about your TMJ. :( The only "pressure" I usually suffer in my head is sinus related, and simply keeping my head elevated eases some of that.

I had to have a hysterectomy almost 7 years ago, and the hormone replacements made me feel awful so I just take an herbal supplement now. After I had the surgery, the doctor told me that if my hormone levels dropped too low, I could suffer insomnia. He wasn't kidding! I keep hoping that between the Estroven and the melatonin, I can ease it some. I guess it's working some. I can usually fall asleep before 1am now, where before I was still wide awake at 3 or sometimes even 4 am. That wouldn't be such a big deal if I didn't have to get up at 6:30 am.

I just don't want to be dependant on alot of pills to get through my life. Taking meds in the morning to ease pain and stiffness so I can function and then taking more pills at night so I can sleep. :(

Oh, 80 degrees would be sooo nice!! 50 tomorrow? You'd better bundle up when you go out!! he, he. If it was 50 here tomorrow you'd probably see people in shorts :D

Yeah, I've heard having a hysterectomy is not to much fun on the body. I haven't had one, but my cousins wife just had one and she was dizzy, sweaty, hot. I felt bad for her.

Well, as long as the pills help you that's all that matters! If you need relief, you need relief.

It's been nice talking with you. I have to start some dinner now. Kids and husband will be home soon!! :wave:

:D Nice talking with you too.

Thought I would jump in here when hearing about Ambien. BAD STUFF! I was on it for almost a year until my doctor told me to quit asking for it. I had lost all of my short term memory and was having difficulty driving to usual known places in town. Took me two weeks to be able to sleep at all without it but worth it. Now I am on Xanax because of the fibro and back pain. Just can't sleep without a helper. Am on occasional Vicodin and alternate with regular Tylenol. Have very bad Fibromyalgia with Chronic fatigue. My theory is that it is from inflammation and bad immune response in the body. I do have a liver disease and diabetes and can see why my body won't heal my muscles and joints after even mild exercise or when it gets cold out. So I am a pill-poppin gal who is just trying to muddle through life as happy as can be. I don't believe in suffering and try to live each day at the most I can. I think doctors think we are all hypochondriacs especially women who are overweight and people who look like they don't have lots of money. :eek: