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Old 09-13-2012, 06:50 PM   #1
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What to expect?

So I had my appt with the rheumatologist and she seems to be leaning toward fibro. I go back in a little over a week to get test results and hopefully, finally some answers.

So I know all doctors are different and all patients are different, especially when it comes to fibro. But I was wondering, if it is fibro, what will happen next? Will I be referred somewhere else or will the rheumatologist treat me or will I go back to my family doc for treatment? Will I be offered medications at that time? I don't feel like I am functioning well at this point so I hope something is done. She did give me mobic at my first appt but that does nothing at all for me. Ibuprofen helped more but she said I was taking too much.

Like I said, I know all situations are different but maybe you can tell me what happened right after you were diagnosed.

 
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Old 09-14-2012, 07:17 AM   #2
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Re: What to expect?

hi,
sounds like your doc is a mimimalist with meds. depending on how you look at it a good thing or a bad one. you will stay with the rheumy if that is your choice. i have my fnp handle it all and check in with rheumy if needed or once a year.
the first rheumy showered me with drugs. the seconds said get a shrink (smart man, i did). the third wanted to give me drugs, same with the 4th and 5th and gee i lost count. the guy i have now does not push it with me, just tells me my options and i decide.
i do not take meds for fibro. my body does not like them. many people are helped by the meds so be your own advocate, look up drugs if she suggests them. always let your doctors know in a respectful way that you are in the drivers seat of your life. they are here to help, not drive.
peace,
bluelakelady

 
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Old 09-14-2012, 06:41 PM   #3
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Re: What to expect?

Ok. That helps. Just didn't know if the rheumy was just there to diagnose me or if she would continue treatment.

I'm not sure where I would stand on taking any kind of drugs. I've been reading about the ones offered for fibro on this board and I think they sound kinda scary. I've always been sensitive to medications so I'm sure I would get any possible side effects, lol. So I guess we will see next Friday when I get my results and I tell her that the mobic she prescribed is not helping as well as my ibuprofen was helping.

So could you tell me how you deal with the pain without taking meds? Things like heat, rest, massage? If you have this for a while do you learn more how to avoid pain? I mean, I have obviously been med free but I don't feel like I live a very normal life. I would LOVE to get some normalcy back.

Oh, and I guess I am jumping the gun a bit because I'm not even sure if I have fibro. It's just that all of my preliminary type tests have not showed anything and the further testing that they ran was to r/o other things for a fibro diagnosis.

 
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Old 09-15-2012, 07:46 AM   #4
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Re: What to expect?

i have weekly massage, use heat all the time. my car seats and my office chair. i have a hot tub, adore it. i go for mini walks 20 to 30 times a day. each of those 5 minute foray's is exercise. i see a chiropractor when needed. do p.t. when i feel the need.
mostly i learned to be okay with hurting all the time. i am so used to it now it is the way of my life. i still do things i want to do or have to do. giggle.
redefine normal every day of your life. there really is no such thing, normal. ever met one? not me. we are all a bit different.
as for avoiding pain, it cannot be done. what you can do is adapt to it and find ways to do what you want as you are. i rest up for big events. if a gathering is a week away i rest the two days before and stock up on energy. works most of the time.
if you have fibro it will always be unpredictable and that's just a fact of it. you can rage against it or adapt to it.
peace,
blue

 
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Old 09-16-2012, 04:24 AM   #5
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Re: What to expect?

Ha!! You are right about that! Ask anyone around me and they will say I am not normal and for the most part I don't think they are either! lol. I love that. Redefine normal, huh? Yeah, I guess you're right about that. Fibro or not I am currently dealing with daily pain, so it fits.

I love the idea of mini walks. I have wanted to get some exercise since my baby was born a year ago but a trip to the grocery wears me out for 2 days!! That leaves me 20 pounds heavier that I was after delivery!! Mini walks, I think I can handle that.

I currently use a heating pad and soak in a hot bath. I can't afford massage or physical therapy right now. My insurance sucks and up to $5000 would be out of pocket!! I already started pt and had to quit. Ugh! I think it was helping too.

The rest of it I don't want to hear, lol. It's just about dealing with the pain, there's really no getting rid of it or avoiding it? Yuck. But I definitely am one who will deal with it and learn to live with it gracefully rather than bucking it. Who has the energy for that? But that is just if I go to the rheumy for my results next fri and she doesn't tell me I have something COMPLETELY curable and one tiny little thing will once and for all put me out of pain. A girl can always hope!

Thank you so much. I have found some suggestions here I plan on putting to use.

 
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Old 09-16-2012, 07:26 AM   #6
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Re: What to expect?

giggle, i knew you would not want to hear the part about eternal pain. giggle. honestly, once you get the hang of it, it's not as horrid as it seems now. i have been playmates with fibro for almost 2 decades. i have had years to think and adapt.
hey, i hope you are a quick fix too! that would be cool!
oh, check with massage therapists who work from home. many have a sliding scale. i pay whatever i can. be it a bag of tomatoes from my garden or 20 bucks. i get at least an hour of massage. not everyone is about money. for some it is the healing art and they are the givers.
peace,
blue

 
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Old 09-16-2012, 09:39 AM   #7
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Re: What to expect?

Thanks again. And hey, I've got plenty of tomatoes!! And brown eggs, ha! I also bake novelty cakes (when my hands allow) and make delicious homemade bread. I have lots to barter!! Maybe I should look for someone who works out of the home.

 
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Old 09-17-2012, 07:36 AM   #8
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Re: What to expect?

giggle, i also take eggs and bake breads. whatever i can. two times a framed photo i shot of a flower, once a bouquet of dried flowers. a budda scented oil burner. giggle. i have been with them for about 2 years now.
when they had a place at the hospital i paid full price. now that they are home it's whatever i can bring. twice i have gone with nothing and been treated just as good. i'm lucky, they love me and think i am special. so are they!
you could try angies list i think it's called. i see adverts on the telly and a friend of mine used someone from there for i don't remember what and was very pleased.
i am going to paint today. my friends daughter is having her first baby. when i paint all pain goes away. the mind is stronger than the body.
peace,
blue

 
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Old 09-17-2012, 08:38 AM   #9
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Re: What to expect?

bluelakelady, how do you go about finding someone on sliding scale basis? I'm on SSDI/SSI and I can't afford to pay what some places want to charge. I tried massage envy and they tried to push a deep tissue massage, which would have KILLED me...lol. Any info would be appreciated. I sure can knit up a storm lol. Not that it gets that cold here, but sometimes it does.

 
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Old 09-17-2012, 08:40 AM   #10
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Re: What to expect?

Oh my goodness, I totally agree!!! If you can lose yourself in something, it's the best pain reliever ever!! My husband works long hours on sat sun and mon. And while distracting to a degree it's hard to chase around after a 1, 2, and 3 year old and not focus on the pain, lol. But it is still my FAVORITE thing to do.

My husband will be home for the rest of the week (when he's not hunting) and he's a HUGE help. I get to work on my 1 yr old's 1st b day cake. A 2 tiered African safari theme with handmade giraffes, elephants, and zebras. That should be a nice distraction!

I'm sure plenty of people here would agree that you are special also

 
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Old 09-18-2012, 07:06 AM   #11
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Re: What to expect?

It's good that the rheumatologist is doing tests. There may things that can be tweaked too besides the pain. I hope your doctor will give you something for pain or refer you to someone else. I go to a pain specialist myself. I take a combo of Lyrica and Cymbalta and they work really well. I also do water aerobics, get massages regularly and have a hot tub and take walks. I eat healthy and try to get good sleep as all of these things help with the pain. Getting your mind off of the pain, with work, hobbies and activities is always a good thing. Keep relationships with people that are good for you. Toxic relationships can really aggravate matters as well as stress.

Keep positive thoughts and I hope you find a path that is best for YOU!

Pam

 
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