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Old 02-11-2008, 09:14 AM   #1
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Unhappy New here need help Please

I am new here and need help. I was have fibromyalgia, chronic fatigue, depression, anxiety, painic attacks. I dont know what to do it keeps getting worse and worse. The pain is not leveling off or getting better, the doctor I saw a few years ago said it usually gets better or levels off and stops getting worse after a year or two..mine is getting worse. Most days I feel drained to point I dont want to get out of bed. My memory is getting worse. The depression and anxiety is so bad I dont get out of house unless I have to. I have such a fear of driving that Im starting to feel like I am going to black out and just sit and sob in traffic. I feel so useless to my family.

I have very few friends..some left because they didnt beleive in fibro. and I even overheard a couple of people I thought were very good friends talking and laughing about me and my "fake" illness. They said it was diagnosis a doctor uses for someone lazy that they cant find anything "real" wrong with. I have isolated myself and spend most days crying. I had to quit job because of the pain and anxietys. I cant find a good doctor to hel that seems knowledgeable about fibro. the fear of driving keeps me from going but a certain "safe" feeling miles from my home to find a doctor..,My husband is tired of it all and doesnt understand why I cant just "change"

 
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Old 02-11-2008, 12:45 PM   #2
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Smile Re: New here need help Please

Quote:
Originally Posted by Tambeth66 View Post
I am new here and need help. I was have fibromyalgia, chronic fatigue, depression, anxiety, painic attacks. I dont know what to do it keeps getting worse and worse. The pain is not leveling off or getting better, the doctor I saw a few years ago said it usually gets better or levels off and stops getting worse after a year or two..mine is getting worse. Most days I feel drained to point I dont want to get out of bed. My memory is getting worse. The depression and anxiety is so bad I dont get out of house unless I have to. I have such a fear of driving that Im starting to feel like I am going to black out and just sit and sob in traffic. I feel so useless to my family.

I have very few friends..some left because they didnt beleive in fibro. and I even overheard a couple of people I thought were very good friends talking and laughing about me and my "fake" illness. They said it was diagnosis a doctor uses for someone lazy that they cant find anything "real" wrong with. I have isolated myself and spend most days crying. I had to quit job because of the pain and anxietys. I cant find a good doctor to hel that seems knowledgeable about fibro. the fear of driving keeps me from going but a certain "safe" feeling miles from my home to find a doctor..,My husband is tired of it all and doesnt understand why I cant just "change"


Hello, I am also new here. I have been diagnosed with fibro 3 yrs ago and it's very hard to get anyone to understand what your feeling. There's no proof to show that you hurt. The only way I got my husband to understand it/me more was when I had my next DR's appointment. I had him come with me. The doctor explained and answered all of his questions. Now, he helps me more and I have also started seeing a psycologist to help me to deal with the pain. I also go to physiotheripy everyday (paid by my employer). My pain started from an accident form my work place. Then, it turned into Fibro. I have been dealing with the pain for 3 years. I am currently going through a flare up right now. It's been 2 weeks and it's not getting better. I can honestly say that the visit to my doctor with my husband & physo, and seeing a psycologist has made a big difference.

I hope this helps and I wish you well
M

Last edited by mista0316; 02-11-2008 at 12:48 PM.

 
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Old 02-11-2008, 03:37 PM   #3
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Re: New here need help Please

Quote:
Originally Posted by Tambeth66 View Post
I am new here and need help. I was have fibromyalgia, chronic fatigue, depression, anxiety, painic attacks. I dont know what to do it keeps getting worse and worse. The pain is not leveling off or getting better, the doctor I saw a few years ago said it usually gets better or levels off and stops getting worse after a year or two..mine is getting worse. Most days I feel drained to point I dont want to get out of bed. My memory is getting worse. The depression and anxiety is so bad I dont get out of house unless I have to. I have such a fear of driving that Im starting to feel like I am going to black out and just sit and sob in traffic. I feel so useless to my family.

I have very few friends..some left because they didnt beleive in fibro. and I even overheard a couple of people I thought were very good friends talking and laughing about me and my "fake" illness. They said it was diagnosis a doctor uses for someone lazy that they cant find anything "real" wrong with. I have isolated myself and spend most days crying. I had to quit job because of the pain and anxietys. I cant find a good doctor to hel that seems knowledgeable about fibro. the fear of driving keeps me from going but a certain "safe" feeling miles from my home to find a doctor..,My husband is tired of it all and doesnt understand why I cant just "change"
Please dont give up on yourself, It took almost ten years of being treated for so many different things, tons of tests, never getting relief, the doctor scratching his head. My best friend once told me, she believed something was wrong but it just sounded so unbelievable that the doctors coundnt find anything. I knew something was wrong so i didnt give up. It was finally a rumortoligist and he didnt convince me that i really had this condition at first.

After i did a lot of research myself on fibro, it was like a big puzzle came together for me, now the trick is finding out what will work for you and what will give you the biggest relief. Not everything that has been prescribed for me has worked, so that was my homework to discover what worked the best. Not easy, makes you want to give up also but I realize i just have to help myself. I see some people on here have had meds work and then stop working. I can only discribe this conditon as being very frustrating I know my husband is tired of it also, i was so mad at him last night, i was the one who wrote the "no compasion from spouse"


The frustration that comes along with this condition is stressful for everyone but like you i started feeling the anxiety of it, the crying lately, depression,which i hate that word but must admit it, whew, i finally said it . Everything you have stated i have been going through, i lost my job and my insurance recently, so i have not had anything meds in awhile but i realized that this is too much on me and my family, i was screaming at the top of my lungs the other night, thats enough for me, so im getting to the doctor and im getting some meds.

Like me, right now you probably need some relief, than you can get some your mental stability back because i realize that im losing more and more everyday. For some reason after reading these message boards, it made me want to get things back in perspective. I have to be #1 and i have to take care of myself or im no good to anyone.... One thing at a time, this will be my first new step....... Same thing, memorys getting worse, pains been worse, fear, wanting to stay home most of the time because of fear, dont want to drag no one's head, etc, etc, just a lot of bad stuff.

I went on this message board very late last night after finding it by accident and after crying all day i was at my wits end. Now i have some relief because of it and its mental relief, i have already written on about five threads and it feels so good to talk about it, but i already feel better getting stuff off my chest, like talking about it and realizing im not the only one who feels like they have let their family down and guilty about everything and why arent i better and why am i suffering like this and nothings helping me at the moment but im one who believes everything happens for a reason and looked what happened! I found all of you out there.......

I cant find a good doctor who really knows about this stuff in my area either obviously after suffering for all this time, and i cant afford to go back to the rumortoligist right now, way too expensive besides the costs of the prescriptions, so im going to any doctor to get my relief meds than i can look for one who specializes in fibro, like i said one step at a time. im Putting this back into my own court. I feel like i have had enough and im the only one that can help get it back into control.

Dont be so hard on yourself, im sure many people with this condition have had their golden moments, like you and i are having right now. So hang in there and remember we are all here for you now take care of yourself and let us help with whatever else you may need

One more thing, people who laugh behind your back and call this a lazy deal are no friends at all, they should have at least went on the computer and looked it up before making judgements on you and dont be shy to tell them so or dont be shy to tell them to look on this message board. I have never ever been a lazy person in my life, as a matter of fact, i had so much energy you couldnt slow me down, i was schocked when my life suddenly took this turn and i couldnt understand what happened to me. I kept trying to be that person again but it wasnt happening and it took me a long time to understand why. Now just doing a load of laundry and cooking knocks the crap out of me. This is by far a fake illness and i hope they never have to go through it but sometimes the almighty has other plans for us and what comes around goes around. Dont let their insensitivty get to you, pick yourself up by your bootstraps and move as forward as you can with your new firbro friends....... Hope i made you laugh a little

 
Old 02-11-2008, 05:28 PM   #4
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Re: New here need help Please

Thank you both so very much for your replies. It helps alot knowing I am not alone. I feel so badly for not being able to work right now and know I need to get a job there isnt a day hardly goes by that my husband doesnt remind me im not working...we need money..my meds cost too much etc. etc. the biggest thing right now is the fears and anxietys. i feel like im useless im so terrified to drive i have nightmares my husband pushes me to drive on interstate for errands and i feel like running away im so afraid of driving...everything seems so hopeless right now..but again i thank you from the bottom of my heart for the replys and knowing im not alone

 
Old 02-12-2008, 06:58 AM   #5
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Backinthesaddle HB User
Re: New here need help Please

Mista my fms also came from a work related injury (cervical spine). Did your job have a issue or should I say workmans comp with fms coming from your injury?

I was in the middle of a medical retirement which I wish I would have completed by now. However, as soon as I started the paperwork I went into remission so to speak. I stopped the process. So I know it will happen. I am waiting to see if I flare again bad again and will try next time if it gets worse. It is just amazing how I went through years of solid pain to go into a lesser then bad (not free but not as bad) pain. I swear I do not understand this FMS stuff.

I finally got that book on it and it is so good. So get as much infor as possible and know u will get relief.

 
Old 02-12-2008, 07:53 AM   #6
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Unhappy Re: New here need help Please

I am new here too. I am a 29yr old stay at home mom of 3. For at least 8 years and possibly more, as I put the pieces of the puzzle together. I have had a rollercoaster.

I am waiting for insurance to kick in again, to continue on my quest for a formal diagnosis but, my doctor believes that I have Fibromyalgia without question. She's just pretty much following protocal "just in case".

I have experienced the rollercoaster 10 fold, some days jump out of bed can function as if nothing is wrong ...I LOVE those days. Sometimes its not a full day...there have been numerous times Ill be having a "good day" then out of the blue the pain is obscene, it makes me dizzy and queasy and I have to lay down. Unfortunately I never know how that will leave me...if I'll be down for a few minutes, a few hours, a few days, weeks or even months.

For years I was diagnosed with depression, I don't know how many times I had to scream at Doctors, I AM NOT DEPRESSED! Everytime I heard it, I got visions of going on on Live broadcast TV and screaming it. It wasn't until the latest Doctor that she put the pieces together. How do you explain to Doctors, who don't SEE anything wrong. That any possible "depression" is due to NOT being able to do what you want to do, rather than the other way around. Usually Depression you withdraw and don't want to do anything, This is Me WANTING to do things I enjoy and feeling like I have been run over by a Truck and just CAN't do what I like.

I have been met by many walls in trying to get better. With no insurance coverage in sight anytime soon I can't continue my quest. I do have plenty of hope and faith that I can get to some sort of normalcy. **being able to stand for more than 5 minutes without having to sit down would be a huge difference**

My questions are: I have heard it gets worse, and IT HAS got progressively worse over the years but how much worse?

Do you all experience day by day/hour by hour or minute by minute rollercoasters of good and HORRIBLE...

Is anyone able to Work, I have been out for years, who's going to hire someone although I am capable of typing this post so I could! and would love to work from home. But days I can't drive, get out of bed....who would hire someone to work on and more often OFF. I struggle with this alot with 3 kids a house and living on one income is not working, not that it ever has.

I read a post about the posture pillow, I have a temperpedic pillow (regular pillow shaped), It has HELPED ....the fatigue in my neck, by a LARGE margin.

There are so many questions and things I want to add but this is already a novel. I really just appreciate all who share their stories, and experiences..Its the first time I really felt like I am not the only one. Thank You!

 
Old 02-13-2008, 12:23 PM   #7
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Re: New here need help Please

Quote:
the doctor I saw a few years ago said it usually gets better or levels off and stops getting worse after a year or two.
That's a bald-faced lie and that doc needs to be informed otherwise. FM IS a progressive disease. All of us here will tell you that.

There is a very real chance that you do have a component of depression mixed in, so don't balk at it or refuse to try anti-depressants because you "can't be depressed". Chronic pain causes depression, and that makes the pain worse. Which makes the depression worse. It's a vicious cycle. Many of the best FM drugs are anti-depressants. Nobody knows exactly why or how they work for FM, but they do. The one med that I will never go without is my anti-depressant. I can go days without taking any of my others, and often do.

Depression presents differently in everyone. I am clinically depressed because of my FM, and I never wanted to withdraw from society and stop doing the things I love to do. The depression was in my mood and in the fact that I could cry at the drop of a hat. I did still want to do things and go places, I just didn't have the energy to do it. The week that it finally got bad enough for me to start on medication was the week that Michael Buble came to my state, and we went to the concert even though it was a 2 hour drive one way.

My mom's clinical depression did present with total withdrawal from life. But hers had more causes than just FM. Mine doesn't.

Please please don't say you're not depressed because you haven't withdrawn from your life. That contributes to spreading dangerous misconceptions about what depression is and what can cause it.

 
Old 02-13-2008, 01:39 PM   #8
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Wink Re: New here need help Please

Hello Backinthesaddle,

I had my lawyer helping me with everything. I already went to court once and won my case. However, before winning my case it was very hard on me. I wasn't being paid until I went to court. I was glad that I had short/long term disabilty insurance. So, I had applied for long term disabilty and it took them 7 months berfore they decided to pay me. My lawyer worked really hard. He was trying to work with there lawyers. This took a big toll on my relationship with my husband. We were living with only his salary. I remember I would go to see my Dr and he would tell me that I had to avoid any stress! I just told him that I thought he was funny. He knew about my problems with getting paid. But, what helped me a lot was that I never had any prior health problems. I would see my Dr once a year. So, I have been lucky that my Dr. was on my side. He sent me to physio which helps me a lot. I also have my psychologist which really helps me. My husband & I are doing very well. He has read a couple of messages on these pages and now he realizes that there is so many people with this problem. I myself was blown away by these postings. I now feel like I am not alone. I wake up a lot with my face hurting. I always thought it was the way I slept the previous night. Then I read that other people have that too! Also, having a hard time to talk is another problem I have. My Dr forbids me from working. I have a big problem with my neck too. I have a weird question to ask. Does you toe nails & finger nails hurt? At night I get that. When I go to bed just the blankets hurts my toe nails. I have to keep my feet out of the blankets. I am going to stop writing now. I am so sorry. I didn't mean to go on and on and on.

Well I wish you well.

Take care,
M

 
Old 02-14-2008, 01:31 PM   #9
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Re: New here need help Please

[QUOTE=Grapedy;3440146]
There is a very real chance that you do have a component of depression mixed in, so don't balk at it or refuse to try anti-depressants because you "can't be depressed". QUOTE]

I think what I said was misunderstood, I am sorry about that. Depression is real and serious. I have struggled with depression but usually after a long span of being down and in pain, so yes what you said is true. I don't know how to put into words other than an alternate example.

If you got a splinter in your finger and it got infected. You could put ointment on it to "help it" but that isn't resolving the underlying problem of the splinter itself.

I suffer daily in pain, but it isn't until it knocks me for a loop and I really cannot move or function that the depression sets in. But like you said, the pain in this instance can cause depression. Its those times when I wish antidepressants were more of a take as needed resolution.

Sorry for the misunderstanding. I have needed anti depressants that was not my intention to push them aside, but when doctors keep throwing depression at you and you KNOW in your heart of hearts/Gut that there's something more to it. You just want to scream!

 
Old 02-14-2008, 09:00 PM   #10
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Re: New here need help Please

Hello everyone - this is my first post, but I have been reading for months. I've had Fibro for about 3 yrs but was just officially diagnosed in 6-07. To be honest I am at my wits end... my Rhuemy has me on effexor 37.5 and that is it. Tried Lyrica but my system could not tolerate it -- my hands and feet swelled so bad and my heart went to racing before I ever got a strong enough dose to benefit me. Have tried many many things.. but like most of you they do not work. My primary doctor had me on Hydro 10mg and I was able to live my life as normal - go to work.... take care of my family - - LIVE! BUT my primary doc has been out of the office for 3 weeks and I of course ran out of meds the beginning of his 1st week out -- so now 3weeks with no pain meds and I'm dying. I thought at first this would be a good test to make sure that I was not addicted -- everyone says "no" to narcotics for long term because you become an addict -- well I have news for them - - I was on them for over 2 years and I did not become an addict just a person that could function in the real world with everyone else. So anyway I was set up to see another primary today and he gives me the same story about the addiction and that he could not and would not give me a script for narcotics. He tells me he is here to help me long term and prescribes elavil to help with the neuro transmitters and fiorcet (a combo of tylenol and caffeine) to take 3 x a day IF needed for pain. IF... IF... I am in his office - -my right arm and leg are twitching like I am in a freak show, my blood pressure is up due to the pain level and I'm crying because I am so desperate for relief and he says IF. He asked me the old pain scale question 0-10 and I say "9" and he says IF. I told him my little experiment of being off the Hydro for 2 weeks (well now 3) with no withdrawal symptoms BUT many symptoms of pain and he said "well it is just too big of a risk". I take this illness very seriously - - I weight train every other day (except this week) I walk every day for an hour (yes, even this week) I watch my weight and diet. stretch every morning and night and try anything and everything these docs throw at me and yet I have NO control over how to control MY constant pain. So much more to say - - but hand is hurting way too much and I have to go to work tomorrow where I can try to answer the phone and be polite and type while being in pain.

Before I go I wanted to say THANK YOU - - I have read many of your posts and it is nice to know that I am not alone... although today I feel pretty alone.

And to ask for your advice - - what do I do now??? I feel like I have exhausted all my options. I live in the Charlotte, NC area and the temp is up and down like a roller coaster so I know that has a lot to do with it.

Thanks in advance for all of your welcomed comments.

 
Old 02-15-2008, 06:03 AM   #11
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Re: New here need help Please

welcome to this wonderful board! we all hear you when it comes to pain and everything else these fibromites do to us. just a suggestion, my rheumy is also my pain doc. i see him 1x month and if i need meds then, he writes me for 1 mos. worth.
by the way, could you tell me what lyrica did to you? i have been on it for 3 mos., tired all the time (the other day i nodded off while eating a sandwich!) plus i have put on 10 lbs. in 3 mos. when i asked the doc about this he said to try it a little longer, and everything should balance out.
best of luck in getting some help for your pain.......bevann

 
Old 02-15-2008, 11:03 AM   #12
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Re: New here need help Please

Hi, I am sooooooo sorry your feeling like this. I know cuz I feel like it too on days.

I used to work, I am on ssd. It makes me feel useless sometimes, and my X husband used to remind me, that we need the money and I should work. So I do understand. I feel even guilter when he would say that. Dont they know we DONT want to feel like this. I want my old self back!! Then there the people who say,, she looks ok, and we feel like we are lazy, but we are not!!!!1


hang in there tammy

 
Old 02-16-2008, 02:19 PM   #13
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Re: New here need help Please

There are certain anti-depressants on the market, that for some unknown reason, help to decrease pain in FM patients. Remeron, Effexor XR and Cymbalta are the ones with the longest proven track record.

I'm on Remeron and it's taken at night. So it does three things for me. It halts the depression, helps the pain and helps me sleep. And all of that in one pill! Even though I'm showing no depression symptoms right now, I'm not going to stop taking it because of the pain help I get from it.

So again, don't completely rule out trying anti-depressants long term. Especially any of the 3 that I mentioned above. Nobody knows why or how, but these 3 work in such a way that it significantly decreases pain levels for most of the people who take them. I take Remeron for fibromyalgia. Not for depression.

 
Old 02-16-2008, 03:17 PM   #14
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Re: New here need help Please

Mista0316,

Oh, you have been through a lot, as well as we all have. My husband does not understand. I wanted to let you know that I used to wake up with my teeth and upper jaw horribly throbbing, and also talking or too much talking can be extremely painful. It has gotten much better now that I am on LA med. It is not a roller coaster like it used to be. I take 1 pill every 12 hours. I have not been officially been diagnosed with fibromyalgia, but my doctor feels I might be in the beginning stages of it. I have been disgnosed with tmjd and myofascial pain syndrome.

It is so helpful for me to read everybodies posts and know that I am not alone. We can help each other.

 
Old 02-16-2008, 03:20 PM   #15
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Re: New here need help Please

It is time for a new search for an FMS doc. Alarm bells went off when I read your post elaborating on how your physician said this condition levels off. Apparently, he/she did not go to FMS school. You deserve to have better treatment by someone who really understands this condition.

Blessings,
Kirstee

 
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