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Old 09-28-2012, 11:05 AM   #1
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Unhappy I'm new to this and I'm so sad...

Hello,

My name is Jessica and I was recently been diagnosed with FM. My problems started a little over 2 years ago at the very end of my second pregnancy. After my daughter was born I always felt like I had the flu. It has progressively gotten worse and I was diagnosed about 2 months ago with FM after a very long wait to finally get in with a Rehumatologist. Whats worse is it just seems to be gettign worse, and worse, and worse with no end in sight.

I hurt everywhere and it is a pain that is really hard to put into words. Sometimes it burns but more often it is a horrible ache that feels like it goes all the way to my bones. It is just so horrible, I am only 31, I have 2 young children and I feel like I am 90. I can't do things with them that I wish I could. I am thankful for good days and I try to do as much with them as I can. I just can't believe this is my life now.

I cried when I found this board because I read stories from all of you and things jump out at me that sound just like me. It is a relief to find people who get it.

I was taking Voltaren but it caused my BP to spike so I had to stop taking it and today my Dr. is going to start me on Cymbalta. I'm a little bit afraid of it but I am honestly willing to try anything.

I have been able to find one trigger, EDTA. I have taken that out fo my diet and it does seem to make a difference

I'm just very thankful to have found this board and a few people that understand. My husband tries but he just doesn't get it.

Thanks for letting me vent!

 
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Old 09-28-2012, 12:54 PM   #2
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Re: I'm new to this and I'm so sad...

Welcome to te board!
Unfortunetly we all know why you're going through... It's far from the way we've planne to live our lives. Unfortunetly we have to learn to live differently.
I had probs for 11 yrs before fibro pain set in. After I had my last child recovery was really hard. I'd lived with fatigue for so long but it was at its worst... Then pain set in & got worst.
Unfortunetly it's been 3 yrs now & only gotten worst & continues to. I'm going to get a lip biopsy done to test for Sjogrens since its the most accurate & makes sense to me. I don't doubt the fibro, just know something else is going on & that's why it keeps getting worst.
I've always been against meds now I rely on them so much, especially tramadol...
I tried cymbolta & 100% against it... I wanted to talk to you about it before you start the med... I don't think it should be on the market...
It did help with my pain but my husband says I was kinda a zombie. What I really noticed is that it made the fatigue worst... I talke to my dr & decided to weine off slowely...
I ended up being sooo sick & the pain & fatigue was unbearable. Imagine the worst fibro pain, migrain like headache, lethargic then so nauseous & vomiting... For a whole week! I should have went to the hospital for dehydration. I couldn't keep anything down, not even a sip. I've had flares like this but they only last a day K I think the pains from goin of cymbolta was even worst. It really wa a nightmare! After that I talked to another person on here that went through the same thing but went to the hospital 3x because of it. I did some reading & found that its been very common with cymbolta withdraws... Even wiening really slowely...
I've been on nuerontin & Lyrica also. They also made fatigue worst for me but others like them.
I'm on savella which I've liked the best... It makes me sweat really bad sometimes & really easy which I've never been one to sweat...
Anyhow, please research cymbolta before trying it...
Some people manage med free. I have a friend that takes Vicodin & 9 IB Profren daily & works for her. I have a cousin that takes only Alieve & it's enough for her... I take savella & tramadol. i also take a miscle relaxer called flexeril for pain & sleep. it helps me allot but ive been trying not to take it. will prob have to start again though. im looking at possibly a more "natural" way... Not everyone is the same. You just have to figure out what works best for you.
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
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Fibromyalgia diagnosed 2009
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Old 09-28-2012, 03:41 PM   #3
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Re: I'm new to this and I'm so sad...

I know exactly how you feel. I was diagnosed a couple of months ago and when the doctor said "lifelong condition" I felt like he punched me in the stomach. He also said that the chances of complete pain relief is slim. I walked out of there feeling completely defeated and depressed. I even had some really scary thoughts for a while. I couldn't stand the thought of having this pain another minute much less the rest of my life.
Since then, I am feeling a little more positive. I've talked to a few people that have it that say that it's just a matter of learning your limitations and avoiding triggers and finding the things that work best for you. Right now I am just trying to learn as much as I can about Fibro so that I can learn to manage it. It's frustrating though cause I want immediate results and this is going to take time to figure out. From what I hear, what works for one person may not work for someone else. It's been trial and error for me. But at least I feel there might be a light at the end of the tunnel though. I talked to a girl that was in a wheelchair at one point from the pain but now she is managing her life without meds and she looks great. It gave me alot of hope.
I feel for you. I put this same kind of post on here several weeks ago so I know what you are feeling. I'm taking Tramadol, Flexeril, Naprosyn and Provigil. My symptoms have improved slightly. The Tramadol takes the edge off the pain, the Provigil makes it possible for me to get out of bed cause my fatigue is awful, and the flexeril relaxes my muscles at night so they aren't cramping and spasming. I still feel like crap but at least I can get out of bed and take my kids to school. I have small kids also. The guilt of not being the mother I want to be is horrible. My husband doesn't get it either. I think he tries to understand sometimes...but then other times he comes home and sits on his butt and waits to be served dinner when I am in pain. It makes me so mad. But I try to remember that he just has no idea what it is like. Now I am starting to learn to tell him when I can't do something. I am learning to say No and I am learning to delegate too. It's hard cause I used to do it all before.
I think it's just going to take time to adjust to the changes that have to be made. I have to prioritize now and find my limits and the meds that work best. Finding the right doctor is hard too. The Rheumatologist that diagnosed me has stopped taking Fibro patients because it is too frustrating for him. He said that there is no magic pill and that 25% of getting better is up to the doctor but 75% is up to the patient. I totally get what he means now. Meds only make it possible for me to get up out of bed and make the changes and adjust my lifestyle. I've started walking every day. It was hard at first but it is helping.
I hope that you can use all the info on this board to get some relief. This board has been a lifesaver for me. It helps to have people who understand and who can offer advice and support. I'm glad you are here. The women on this board are amazing and they get me through the tough spots for sure.
Good Luck to you on your recovery and don't give up hope for a better tomorrow.

 
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Old 09-28-2012, 05:11 PM   #4
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Re: I'm new to this and I'm so sad...

Hi There, jessica,
how much sugar do you have in your diet? This might be in the form of fruit juice or white breads/crackers etc?
Have a read of the note I put up about sugar and inflammation. Honestly, since I gave up eating sugar my life has completely changed pain wise.
In the past I used to dread catching a cold because it would always turn into a major lung infection and last year I had pnuemonia. This year I got a cold and was over it in 4 days.
I know I sound like an evangilist (sorry) but it's worth a try if you haven't already!
Don't give up!

 
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Old 09-29-2012, 01:36 AM   #5
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Re: I'm new to this and I'm so sad...

Hi Jessica,

Just wanted to say welcome to the board and you should find a lot of support here I too am newly diagnosed and started having most of my problems right after my last child. I have a 1, 2, and 3 year old. I totally understand about not being able to be the mom you want to be. When I have really bad days sometimes we will stay in our jammies, snack on fruits and crackers and veggies and whatever we find in the fridge. We will spend the day in the living room where I can lay on the couch or the recliner and put together puzzles, read books, color and watch movies. I don't worry about the house or anything and they LOVE the attention from mommy.

I have a very understanding husband who doesn't mind bringing home dinner or making us something simple when he gets home. He will help clean up the messes we make with all the playing because he knows it will drive me crazy.

No, it's not the way I planned for things to be when I dreamed of having kids. But that is ok with me. I feel like I am doing the best I can with what I have and that is all we can do.

I'm sorry you are having such a hard time right now. I hope you get some relief soon.

 
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Old 09-29-2012, 07:15 AM   #6
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Re: I'm new to this and I'm so sad...

hi jessica,
welcome. i am one of the oldies here. please know you will get the hang of this and it will get easier to cope with. it takes time. even tho it is for life it changes over time. you adapt, you stop being afraid and life takes on a new way of being.
the one super smart thing i did do was find a shrink and ask for new coping skills to be taught to me so i can be happy and somewhat productive the rest of my life. it worked.
i have gotten so good at it every time one of my doc's looks for the big C i just laugh.
i never made a plan for my life and how i wanted it to go. maybe that helps me be more open to the changes, who knows? giggle.
glad you decided to join us. you will get tons of ideas to try. give them a try if they are safe for you. each body is unique and responds differently.
peace,
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ps. take a deep long healing breath.
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Old 09-29-2012, 06:13 PM   #7
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Re: I'm new to this and I'm so sad...

Thank you all so much for your responses! I did do some more research into the Cymbalta and with all I read I have emailed my doctor and told him I don't really want to try that Rx yet. I would rather see if something less scary will work first. I am also trying to eat a preservative free diet this week and just see if that makes a difference for me. I know that the EDTA makes me feel bad very quickly so I thought maybe there were other preservatives that were triggers for me.

Today has been a much better day for me which has given me a more positive attitude. Funny how when you feel better it is easier to be happier

 
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Old 09-30-2012, 06:37 AM   #8
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Re: I'm new to this and I'm so sad...

in time you can learn to be happy in the worst pain. so glad you decided to rethink it. delighted to hear you are feeling a bit better. it's a relief isn't it? giggle.
peace,
blue
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