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Old 06-08-2012, 10:23 AM   #1
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Unhappy Looking for answers - HELP PLZ

Hello All, I have just recently been diagnosed with Fibro. To all of you out there that has suffered with this for many years my thoughts and prayers are with you. I apologize as this is going to be a little long winded. I have some questions well allot of questions, but there a few that are my main questions at the moment I have and figured the best place to ask them would be on here where I'm on contact with ppl that have dealt with this for some time......
So here's the first question - Is it common to have fibro come on suddenly and extremely fast? Ive read so many places that many have gone years and years without a diagnosis. And had symptoms come one slowly for years. For me this has been a pretty sudden thing. So sudden that part of me feels like maybe it is something else but bcuz all my tests so far have beed neg and brought the Dr to Fibro. And if it truly is Fibro, I do realize I am lucky to be able to address it so quickly and not wait forever. Basically I went home to visit family for Xmas, they live 5 hours away from me left the friday before new years to head home. Got home and was really achy and tired. The next day I was even more achy and tired but I just figured it was from the 5 hours on the road. Well every day got a little worse until I went to A Hot Air balloon fest early Feb and all I did was walk around for a few hours and check out the balloons and vendors, nothing crazy. Well that next day I swear I was hit by a truck. So I dragged myself in to my family doc. He started tests and I just cont to get worse. All my joints hurt and my body ached so bad it almost felt like my muscles were on fire. RA & Lupus tests came back neg but there was inflammation so he sent me tho the specialist. All these symptoms have come on so stinking fast, I feel like at this rate I'm going to be completely decrepit in just a few more months. Which brings me to my next question - Has anyone been treated with prednisone with success? I have read steroids do not help fibro bcuz there is not inflammation involved. In Feb I was started on 100mg gabapentin 1x daily at night. Then March was taken to 300mg 3x daily with some minor relief to the muscle pain but joints still killed so in april dr left me at 300mg 3x but added prednisone 5mg 3x daily for 5 days then 2x daily for 10 then 1x daily after that. Well oh my about 1 week in I was feeling amazing. Pain level was maybe 2-3 which is nothing after being at close to 9-10 for 2 months. I was in heaven. Well I know that steroids are nasty little things and you shouldn't take them for long periods of time. In May after just a month the dr took me off the prednisone and upped my gab to 600mg 3x daily. Well my rebound of pain has been excruciating. 10+ pain level. All the muscle aches that had left before the steroid are back 10 fold and my joints are terrible. Yesterday I could barely walk. I went to see the family dr bcuz I can't get in to see my rheumatologist till end of month. He's out of town. All I have for the pain is tramadol which doesn't due much as i have a rly high tol to any form of pain med and used to have a rly high tol to pain period till all of this started up. Fam doc started me on savella. I've read up on all the side affects to all the meds and I know everyone reacts differently to meds. So far i'm only on day 3 at 12.5mg 2x daily and haven't noticed a change good or bad. We will see.
I just can't seem to shake this feeling that there is something else going on. Maybe I am wrong. I am not a medical professional. So I'm hoping someone one here might read this and say - Hey that's how it happened for me. And yes your diagnosis is most likely correct. I'm just extremely frustrated. Tired of the pain and the lack of energy. And just plain feeling like crap all the time. Just before xmas I was playing co-ed softball and now I'm luck if I can walk down the hallway at work without tears. Thank you for taking the time to read all of this and hopefully I can get the answers I am looking for.

 
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Old 06-08-2012, 10:36 AM   #2
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Re: Looking for answers - HELP PLZ

Hi welcome to the board. Like you mine came on suddenly but took a long time to be diagnosed. I went from feeling normal to feeling like I have been hit by a truck. My RA and lupus came back negative but my CPR and esr show inflammation. My rheumy thinks I have something else like RA that will show in the future, it is not unusual to have more than one thing going on.

As for prednisone it has been a life saver for me, I have been on it without a break since oct 10mg daily, sometimes 15 if I have a really bad flare, at the moment i am trying to reduce it to 5mg a day. It can get me put of bed during a bad flare and while I know it's not good for you long term, I have 6 children and at the moment I only worry about the short term and looking after my family.

Different medications work for different people and it can take time and cause frustration getting it right.

You will not always feel this way, it is a learning curve and everyone is different. You will find what medication suits you and what will trigger a bad flare.

Look after yourself and keep posting on the board it really helps.

Ann
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Old 06-08-2012, 10:56 AM   #3
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Re: Looking for answers - HELP PLZ

Ann,

Thank you so much for your response. Just knowing there's one other person that it has hit like me is a huge relief. My CPR and esr show inflammation as well. And it has been mentioned that I may have RA show up down the road as well too.
I understand needing to look at the short term at the moment. I am single and as much as I want them have not yet been blessed with kids. But, I can't afford to miss work as I have no one to help me pay my bills and I need the insurance. I think maybe I'll ask the Dr to start the prednisone again at the 5mg since it seemed to help me tremendously. At least long enough to get me to a point where I can start exercising again and working towards some of the more holistic ways to help with the fibro. And then hopefully get to a point where I don't need it.
Thank you again so much for your response. I have to say it is nice to finally have somewhere to go to talk.
Hope you have a wonderful weekend.
Jamie

 
Old 06-09-2012, 07:37 AM   #4
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Re: Looking for answers - HELP PLZ

welcome to the boards jamie,
i was also a sudden onset. flare ups are the same. take deep breaths when you hurt. slow and deep. eat healthy, stay hydrated, get a bit of exercise each day. even a 3 min. walk counts. i walk around my house outside on tough days and around the yard on good days and up the mountain on super good days. my favorites.
most important of all is to relax. the stress of worry is feeding fibro what it loves. i don't take meds for fibro. i have other junk i take meds for and it's enough! giggle. i think we all spend the first year freaking out that they missed something. sometimes we are right, sometimes we are wrong. push and push till you feel you have exhausted every possibility with your doctor. then you can focus on learning how to be a wonderful happy human with fibro. it can be done.
i have said this before and will again. i feel fibro has enriched my life. it slowed me down. with the assistance of a great shrink i learned skills for coping with life and health in a peaceful way. more in tune with my personality. worry is a waste of energy and it was bugging me that i was worried all the time. just not me.
i hope you make great friends here. i have been gifted with many. we are fun, helpful, and always willing to listen even if we don't have an answer.
peace,
bluelakelady

 
Old 06-09-2012, 10:36 AM   #5
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Re: Looking for answers - HELP PLZ

Welcome to the board!
I'm not sure if I had mild fibro or what for 11 yrs. Spent that time going dr to dr. When I finally figured that I was stuck with it & luckily couldn't get worst, it got worst. Then it's gotten worst & worst the last 2 1/2 yrs. It has then taken this long before drs agreed there is something else going on.
The thing is, you need to be tested for everything incase there is also something else going on. Not to mention the safety of mind.
If you feel there is something else going on, keep pushing for more tests. With time you'll find out if there is something else also going on & also except the fibro.
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Old 06-11-2012, 09:43 AM   #6
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Re: Looking for answers - HELP PLZ

bluelakelady & thefarm

Thank you both for your responses. It is so nice to have a place to go to and talk. I don't share much with my family for the simple fact that they live so far away. My grandparents health is not great and the last thing they need to to is worry about me at this time. It's not life threatening so I feel there is no need to share this with them. My mom knows my diagnosis, but again I don't share how bad I get at times because she's got much on her plate as well and the last thing she needs to do is worry as well, since she's so far away. So I put on a strong face and pretend all is well for her. So besides a few friends that try to be supportive but don't really know how, I'm alone in all this. Which tends to make it worse. Then I remind myself it's my own choice family wise. So this board is a blessing.
Today seems to be bit of a good day. Some small aches and pains, the worst is my headache. This new med seems to be helping for now. I'm just concerned about the possible side affects. Severe Headache be one of them. Mine is a mild ache fore now and if this is all I have to deal with as a side affect I will take it as it is much better than barely being able to stand or walk cuz my knees hurt so bad.
Thanks you again - May you all have a blessed day.
Jamie

 
Old 06-11-2012, 07:22 PM   #7
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Re: Looking for answers - HELP PLZ

Hi,
I am sorry you are having such a rough time. I dont remember how quickly mine came on, I just recall always feeling sick and sore and I was tired of it. I have since had flare ups that come on suddenly and that is just awful, which sounds like how you have felt.

I don't take anything, I just try to deal with it. Yes, it is frustrating to live with this, but like bluelakelady said, it makes you slow down in a good way and really decide what is important to you. It is a true trial and error to find the way to feel better. Trying not to overdue it is one good piece of advice I can give you.

Keep reading and asking questions. Hopefully you will find some ways to better get a grip on this.

Feel better.

 
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