Well I Was Diagnosed Yesterday With.....

Decorating By Letmebeurdesignr Updated 21 Oct 2007 , 3:52am by giggysmack

Letmebeurdesignr Posted 20 Oct 2007 , 1:54pm
post #1 of 22

Hey Yall,

I went to the rhumatologist a yesterday. He stated that I do have fibromyalgia. Finally after 10 months of hurting and being sick I finally get a diagnosis. I kept being told that I had migranes and depression. I had to go outside the area 4 hours from here to a major hospital in the state to get this far. Dr 4 hours away did an MRI on my back because i was hurting in my back. He stated that I have degenerative disc disease, scolosis, bulging disc, and arthritis in my facet joints. He said that there was a very good possibility that i have fibro and he wanted me to go to a rhumatologist. I went to the rhumy and he confirmed i do have fibro. He put me on 75mg of lyrica and told me to take 1 last night and then when i woke up this morning if i feel ok then take another one..if not then take the next tonight then gradually increase to 2 a day. If that doesnt help then go to 150mg a day and then go to 2 a day on that mg if that doesnt help. he told me i had to exercise for at least 5 min a day and then gradually move to 10min a day. He said i would have to exercise the rest of my life and I had to come off of caffeine..Talk about hard to do!!! Im a caffeineaholic..lol

So far this year at work i have missed over 120 days. I called my boss to tell her what was going on and what i got diagnosed with and she said "well we need somebody thats gonna be here to work" i told her that i have been trying to work but i just keep hurting..im constantly in pain, especially in my back and my headaches are coming back. She asked if i had thought about total disability and i told her no. She said maybe i need to look in that direction. Does anybody have any suggestions on this? I feel so lost because im tired of hurting all the time and im always wore out and just tired. All this started after i had taken a fall in december and started getting headaches about 3 weeks later. I was very very active before that and after the headaches started i started getting alot worse. As i said previously. The neuros just kept saying i had migranes and depression so i wasnt getting any help.

I made my sister a bday cake last weekend and my arm started shaking and its never done that...kinda worried me. I had to take a break for awhile and try again. My arms have gotten alot weaker

Thanks

21 replies
TooMuchCake Posted 20 Oct 2007 , 2:03pm
post #2 of 22

I wish I had something specific to tell you other than send you a {{{{hugs}}}}.

I'm glad you finally got a diagnosis. Sometimes it's such a relief just to be able to put a name to what's been making you hurt.

I have a loose acquaintance who has fibromyalgia, and she is on pain medication and sees a pain specialist in Houston. Perhaps your doctor can refer you to a pain specialist in your area?

{{hug}}

Deanna

lchristi27 Posted 20 Oct 2007 , 2:13pm
post #3 of 22

Hi, first a ((hug)) for you, so sorry that you have been in so much pain, it's awful when you have no control of what's going on.

I hope your boss is understanding about your situation, if not do you have an HR department? Check with them as they can not release you from your job due to medical conditions. That is so frustrating, I'm so sorry, the job thing can be very frustrating.

My mom has fibromyalgia, but I think to a lesser degree than yours. She is on her way here, I'll ask her for info for you. Or, you can visit www.webmd.com. I have heard they have good medical info.

Take care of yourself, and I'll see what I can find out.
Lisa

cakenutz Posted 20 Oct 2007 , 2:16pm
post #4 of 22

Sorry to hear you have it. I've been suffering for 20 years with it. Have been disabled since 95. Its hard to deal with at times but once you listen to your body and don't exhaust yourself you will do fine. Just getting a diagnosis is a relief I bet. When I first got sick the doctors didn't even believe in fibro. Took 3 years to get ss now its a lot easier. Hang in there.

moodswinger Posted 20 Oct 2007 , 2:25pm
post #5 of 22

My husband has had Fibro. for 10 yrs now! Came on because of a wreck we were in, and got worse from his bi-polar disorder. Believe me, we know what you are going through, and my prayers are with you. He has been on a medication for 5 yrs now, and it has turned his life around! It's Cymbalta! You may have seen the ad on T.V. It's basically prescribed for pain associated with Depression. It is a wonderful medication! Talk with your doctor about it!
It's great how the whole medical profession is finally starting to embrace the diagnosis of Fibro as a true medical disease! When we were told he had this, it wasn't really accepted, and he was treated like he was just lazy, and tired! It was very discouraging, and made him feel useless!
Also, another thing you need to do, is buy alieve for daily aches, and get on a high potentcy multi-vitamin, and folic acid, and B12. Trust me, I know this sounds like I am pushing you to "med-up", but this has worked dramatically for him! I hope some of this helps, and God Bless, hang in there!!

Melvira Posted 20 Oct 2007 , 2:24pm
post #6 of 22

I think you should consider taking a break from work, (whatever your monetary situation can handle) get your meds straight, get the pain under control, then, when you are feeling more 'controlled', find a job that will work for your condition. I can understand your boss' attitude because they certainly do need someone who can work, but you need a job that isn't going to kill you! Or at least make you WISH you were dead! Find something that fits in with how you feel once you get things under control!

Keep your chin up, and know that you can always come here to blow off steam or get a few pats on the back on a bad day! icon_wink.gif We are here for you, and we understand the trials and tribulations you're going through. {{{HUGS}}}

Letmebeurdesignr Posted 20 Oct 2007 , 2:32pm
post #7 of 22

Thanks lchristi27 for the hug and the reply. we have an HR dept but i dunno if i can be released due to medical reasons...talked to hubby about disability and he said that he wanted me to go to the pain dr first on monday and see about the facet blocks in my back then see how the meds help then go from there...i dunno what to do..i have problems working but if the meds and facet blocks help then i can keep working but i wont know anything and it could take awhile before i get relief and will still be missing work until then but i dotn wanna quit just in case all this helps..I have been on that site that you gave me and a couple more

cakenutz, thank you for reply...im sorry youve had to deal w/this so long..it has drove me close to being depressed cause the drs wont listen. i aint depressed but it just kinda irritates me..imma write all them other neuros a letter and tell them what ive got and then they will know i wasnt playing..whether they believe in it or not i know how i felt and they didnt listen to me. One neuro told me "dont call him just because of a headache"..i never went back to him again.

Anyway, thanks yall..i love this site..such a great support group.

cakenutz Posted 20 Oct 2007 , 2:27pm
post #8 of 22

Sorry I sounded so short had to run. Once you get to rest you will feel much better. Once I didn't work anymore I could take care of me. You will find that on different days different parts of your body will ache terribly. And yes weakness is always going to haunt you but thats when you learn to figure out how much energy do I have to spend right now, Can I do this or will it put me in bed for a few days. Example I rest up when I know a big events is coming I don't do anything to fatigue myself. Then say I actually get to go to this event If I'm not to tired and shut down. I might have a ball, But I know I'm going to pay for it. Not thenext day usually but 48 to 72 hours afterward. In time you will adjust. I fought agaist it for years to no availbut once I slowed down to figure myself out I do much better. Right now I could scream I hurt so bad, but My pills haven't kicked in yet. I take vicodin for pain cymbalta, wellbutrin and neurotin for fibro. Dr wanted to give me that lyrica but I told him I was on to many already. Got to go for now pm me if you want to talk debbie

Letmebeurdesignr Posted 20 Oct 2007 , 2:41pm
post #9 of 22

TooMuchCake and Melvira, ty for your reply and hug..sorry it came after i had already sent mine..lol..

moodswinger, i was on cymbalta..it didnt do anything for me at all..aleve, tylenol, nothign like that helps..ive been on over 50 different medications this year alone tryin to get rid of whatever i had but nothing helped..the rhumatologist said that pain meds or anything else will not help. actually makes it worse..i told him i know..ive been tellin drs that the meds dont work

ctackett Posted 20 Oct 2007 , 2:35pm
post #10 of 22

My prayers are with you. It's terrible to be in pain and not be able to pinpoint it. What about the company's medical leave act? You could take 12 weeks of unpaid time off to get this undercontrol and your company can't fire you. There also short term disability if your company has that available. I don't know what your job is but could you work from home? Maybe data entry or something?

Letmebeurdesignr Posted 20 Oct 2007 , 2:48pm
post #11 of 22
Quote:
Originally Posted by cjstor

My prayers are with you. It's terrible to be in pain and not be able to pinpoint it. What about the company's medical leave act? You could take 12 weeks of unpaid time off to get this undercontrol and your company can't fire you. There also short term disability if your company has that available. I don't know what your job is but could you work from home? Maybe data entry or something?




cjstor, thank you for your reply...I work for the police department in data entry...i type in police reports all day and sit at the computer for 8 straight hours which puts a strain on my neck and back and then my hands and feet go to sleep sitting there..Ive been on medical leave like 2 times already and dont know how much more time i have..i might have to check into the short term disability thing though..i wished i could bring home my work but its all confidential and i cant. gotten to where i dont even get on the computer much cause it bothers me to sit here for very long. ill check into the short term disability thing though..maybe i can get that.

shadowgypsie Posted 20 Oct 2007 , 3:07pm
post #12 of 22

I take Cymbalta also, I fell from a ladder while at work onto a concrete floor. With out the cymbalta I have dibilitating pain and headaches. I was told it was from an untreated concusion.
I could not do a sit down job for any length of time.
Standing is just as bad.

I have found that if I have been still for a long time I start to hurt, If I do a few stretching exercises it helps to relieve the pain.

I have been doing this for 5 yrs now.

heavenlys Posted 20 Oct 2007 , 3:22pm
post #13 of 22

I am soo sorry to hear of your diagnosis. My mom suffered for over 15 years before she got a dr. to listen to her and sent her to the rhuematologist. She is on disability and struggles with her pain. She is now on a pain patch. It was hard for the drs. to find a drug that worked and didn't make her a zombie. SHe has tried them all!!

The exercise is a huge key. Swimming is really good for fibro patients. Diet can also affect the disease. I would definitely check into that online. My mom doesn't follow that very well so I can't remember the details for sure.

Good luck and remember that the more educated you are about he disease the more involved you can be in the treatment.

shortNsweet Posted 20 Oct 2007 , 3:15pm
post #14 of 22

So sorry you have to deal with FM...I have had it for 24 years!!! I was one of the very firs tpeople to be diagnosed with it that long ago. I went through SO many mis-diagnosis before FM came into the picture in the medical world. I even went through 4 needless surgeries on my hips ( where my pain all first started!), only later to find out they were all not needed. I was on medicine for SO many years, that the side effects made me have to go off of them( they effected my heart). Now I just live with the pain. Unfortionately, it not only effects muscle and soft tissue ( which feels like joint pain) it also effecte some other soft tissues like my esophagus which gives me bouts of very painful esophagitis...and I've even had a few bouts of inflammation of the lining of my heart! Sheesh...I never know what's going to flare up with me! FM is what keeps me frommaking as many cakes as I 'd like to make! My back always flares up and spasms and of course, my hands suffer the most. It's NOT fair to have this stupid disease...but of course, it could ALWAYS be worse!
Hang in there, and you can ALWAYS e-mail me if you need some support or just want to whine to me!
Feel better soon!

ahuvas Posted 20 Oct 2007 , 3:50pm
post #15 of 22

I had a similar situation - I was sick during the last two years of high school - lethargy, stomach pain and constipation but because I didnt have the most common symptoms (weight loss, diarrhea) the doctors ignore me and the school sent me to the school psychologist because they thought it was psychosomatic due to stress. Instead I had crohn's disease and was only diagnosed when a doctor thought he would do some additional tests even though my bloods were "clean". I dont have much advice except hang in there, take your medication and find an online/local support group plus most importantly EDUCATE YOURSELF.

maggie_14 Posted 20 Oct 2007 , 4:08pm
post #16 of 22

Hello,

I just called my sister after reading your story. She suffers from fibromyalgia and was not diagnosed after 3 years of going to doctors for different issues. It was very frustrating for her, because people didnot understand this desease and thought it was just all in her head. She was able to do an early retirement from the government and she is also applying now for disability. She mentioned this book to me "How To Lighten The Heavy Load of Fibromyalgia" by Karen S. Grove. My sister mentioned that reading Karen's struggle with this disease has helped her cope with it. It has exercises, (which she said she cannot do, but if you can, go for it!!) and other good information. My heart goes to you and I will keep you in my prayers because I have seen my sister suffer, but I have also seen very good days. Just keep a good support system dear friend!!

ValMommytoDanny Posted 20 Oct 2007 , 4:16pm
post #17 of 22

I have it - three years before they DX'd it and they had me on Lyrica and Tramadol - then Tramadol - now Tramadol and if it really gets bad Hydrocodone w/ APAP - what a pain this fibro is - I am having a heck of a time moving, and gaining weight, etc. etc... Also, I can't afford to lose my job so I do that for 10 hours a day and am destroyed when I get home, seriously destroyed... it's just me and my son so it's bad and I have to figure out how to make it better... icon_sad.gif But this does do a number on your head too. Don't forget that aspect - this stuff can throw you into depression fast, I haven't taken anything for that but believe me, I am about to ask for something - certainly changes your life.

Big hugs to you, icon_smile.gif

kaseynh Posted 20 Oct 2007 , 4:36pm
post #18 of 22

Hello...sorry to hear about your diagnosis. I too have FMS, have been diagnosed for approx. 10 years. I have a personal motto to live by, "I have fibromyalgia, but fibromyalgia doesn't have me!"

You have to keep moving, it doesn't make sense but it is true. The reason we hurt so much is we don't get deep restorative sleep. I have been taking Lunesta for sleep for about 3 months and it helps. Prior to that I was on Trazodone for years to help with the sleep. I still have to gauge my activity level. If we go away for a couple of nights, I have to have at least 2 days recoup. time before returning to work.

You will find what works for you, it can be a lot of trial and error where meds are concerned. Don't be afriad to speak up for yourself, your know your body the best!

Feel free to e-mail or PM me! Gentle hugs {{{ }}}

all4cake Posted 20 Oct 2007 , 4:38pm
post #19 of 22

You must be so relieved that they finally identified the culprit. It is a sad feeling when one has to repeatedly see a dr. for the same thing and the dr. is looking at you like you are some sort of hypochondriac or just trying to get a Rx for pain meds.

It's more like..."find what I got and tell me what my options are so IIIIIIIII can decide how IIIIIIIIIIII want to deal with it!"

I hope you are able to get it all under control soon.

MnSnow Posted 20 Oct 2007 , 7:06pm
post #20 of 22

I too, ahve Fibro. I have had it for 16 years now. You can manage it with regular rest, reduce stress (that's a big one! ) and definately a hot tub!

The most important is getting naps and eliminating as much stress as you can. I changed my life style, reduced my stress and get rest and I am fairly pain free. NO MEDS! Since making all the changes, I was able to go off all meds which I am thrilled about. Many of them cause weight gain, which in turn contribute to pain.

Please feel free to PM me if you want.

Good Luck! Remember, life isn't over because of it.

Oh yeah...Fibro is considered a diagnosis in which to get disability and Social Secuirty.

lomikesa Posted 21 Oct 2007 , 3:42am
post #21 of 22

I am sorry to hear about your diagnosis. a big hug for you.

giggysmack Posted 21 Oct 2007 , 3:52am
post #22 of 22

All my best to you. And my prayers so that you find pain management.

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