Dealing with a new diagnosis of fibromyalgia...
#169543 - 04/13/05 10:11 AM
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steather
Reged: 01/29/03
Posts: 345
Loc: Phoenix, AZ
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Hello all!
I know I haven't been active, ever, in the living room....and I stopped participating in the Recipe forum as well. It's just gotten to the point that I only have so much energy to get through the day (so many spoons, if you will! I really appreciated that analogy, Casey), and reading and responding to everyone's posts are two things that I just gave up doing. And most of the time nowadays I'm in so much pain that the thought of typing makes me cringe.
Well, anyways, I was diagnosed with fibromyalgia today. And I just want to cry! On top of EVERYTHING ELSE that I have to deal with (which certainly doesn't help with the fibro, that's for sure), I now have to accept that I have a chronic condition, that I can't beat, no matter how determined I am. SIGH. Deep down, I knew I probably had fibro, but since most doctors are quacks and think that the pain and the sleeping problems and the inability to think straight are all in my head, then I've been able to live in ignorance, and denial. Not anymore! I finally found a doctor who could relate with me (her sister has had fibro for 18 years), and help me see a light at the end of the tunnel. On top of the sleep medication (she now has me on elavil??), she's throwing all these other anti-inflammatory drugs at me, and physical therapy (won't that only make me hurt worse? I hope not!) and anti-depressants. Up to now I've resisted drugs, and have dealt with my IBS naturally, and have gotten that under control for the past couple years. SO I am overwhelmed at the thought of taking all this stuff, just to get through a day. There's so much to learn, and read up on, and again, the thought just drains me. And then there's dealing with the fact that I am struggling in school, and there is no way that I can continue being a full time grad student. I feel like such a failure compared with the other students! But after the worst year ever, I have finally hit my rock bottom, and I just want to feel better! And stop crying everyday!
I guess I'm just looking for outreach at this point, and possibly some info on the best meds to take? What does everyone know about SSRIs? I know that the best way to start feeling better will be to get some sleep! I was taking ambien, and that didn't help, I actually still woke up throughout the night and felt like a zombie the next day. I'm just hoping that eventually I'll be able to sleep on my own....for a while there, before I was prescribed anything, I would get maybe 2-3 hours of sleep every 3-4 days.
Thanks for your help!
-Heather
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Heather
"Quod me Nutrit me Destruit"
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I don't have fibro (at least as far as I know!) so I'll only be the tiniest bit of help, but I just wanted to give ya some *hugs* and reply so this gets bumped up! There's quite a few people on here with fibro, but it's just a matter of them seeing this post and offering their insight.
I can give you some encouragement about the physical therapy - a friend of mine has fibro, and she's found that staying active has really helped her a lot. In her case, she doesn't do PT, but she works in her garden and gets exercise where she can. Staying active seems to help with the pain. Definitely give it a shot!
Elavil might help you with some of the pain, too, in addition to the sleep. My boyfriend was just prescribed it for migraines! The pharmacist explained that it's prescribed for so many things now... give it a try, it really might help. 
That same friend who has fibro also tried Ambien and said it was useless... you're not alone there!
I know reading and researching is overwhelming and exhausting right now, but you might be interested in http://www.fibrohugs.com/
Hang in there... and check back, I'm sure you'll get more helpful input when some of the other fibromites check in.
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I don't have fibro either but I just wanted to give you *hugs* to and wish you all the best!
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I can use all the *hugs* I can get right now! (So long as you promise to be gentle  )
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Heather
"Quod me Nutrit me Destruit"
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Hey Heather!
I checked your profile to e-mail ya....but it's not listed. Mine is Ruchily@yahoo.com
I was on lexapro and it helped me out. I was also on amytryptaline and then nortryptaline. For sleep I was on ambien for a bit. But I encourage you to try magnesium malate for sleep. It has helped me more than ANYTHING when it comes to getting a good night sleep. You can also eat a banana as it has calming effects. But I would try one thing at a time so you know what's working!
I am off all meds right now. I am controlling the fibro with diet and lifestyle changes. This does NOT mean the fibro is gone or that my life is perfect. But things are MUCH better for me. PLEASE do not give up hope...
And please don't spend a lot of time at fibrohugs.com chat room. The info. there is helpful....but for me at least, reading the posts depressed me and left me with little hope. Stick around here...Linz, Tissy, Nelly, Laura, and all us fibromites are POSITIVE and that is the BEST medicine! Being depressed takes away another spoon as it uses up negative energy. (NOT easy to be positive...that's why we're here to help you smile!) 
The best suggestion I was given on the boards when Iw as diagnosed was to CHILL and take some ME time and to get some good books on fibro and read a little each day to get informed.
I was also given a lot of ((((((((hugs))))))))
And support.
And love.
So be sure to let me know if you need anything...let any of us know! We've been where you are......so we understand.
"miss Heather...you're fibro frog fighter is here!" 
Sending you love, prayers, gentle hugs, and a heating pad,
Ruchie
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Formerly known as Ruchie
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Being diagnosed with Fibro is not the end of the world, although at first it may seem that way. But you will eventually have good days as well as bad days. Right now it sounds like you are in a flare up. It always seems darkest to me when I am in a flare. But on good days I think to myself I am alright and I can keep this thing under control and not let it rule my life.
I also fought taking meds for the fibro but I eventually gave in and took them because I had to sleep or I was going to breakdown. After I got months of mostly good sleep I slowly came off my meds. I only take valerian (herb that helps you to sleep) and extra strength tylenol for the painful days and Naproxen (rx pain killer) if I absolutely have to. I also exercise now and try to intake as much H2O as possible. This has made me much less achey and I have more good days then bad days. But OH BOY watch out when I do have a flare up it is really painful and depressing.
Everybody is different and has different extents of Fibro. I believe I have a mild case. I am still able to work full-time. Others have severe cases and meds are the only relief as well as therapy. But it may be possible for you to do it w/o meds eventually. Just like the IBS you have to experiment, trial and error to find out what works for you.
Good Luck and if you ever need to vent there are several Fibromites on this board besides myself. Ruchie, Linz, Nelly, LauraSue, JenX just to name a few.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Okay, firstly, try an believe me when I say the first major just-gotten-diagnosed flare is the worst!  Not least cos you have no idea how to manage it! But it WILL get a bit better...promise!
Re. a-d's...elavil and me didn't get on (I got INSOMNIA from it!  ) but I take Celexa for my Fibro and love the stuff. It really helps.
I take a Valerian and Hops mixture to help me sleep. I've never tried AMbien as my doc won't prescribe it for me, but the herbs work most nights.
I second Ruchie on the Magnesium Malate btw! And if you can get a mix that contains manganese as well, all the better. It helps me with the pain AND the sleep...such a wonderful thing! 
I don't actually recommend anti-inflammatories...Fibro has no associated inflammation and they can make the IBS worse. I take Co-codamol (Tylenol with Codeine) for my pain and love it...it even heps with the mental problems. The only thing you have to watch for is that it's slightly constipating.
PT is a great idea as long as your therapist knows something about Fibro. Exercise is essential to staying mobile...just be super careful to not overdo it! Just walking 5 minutes down the road and back everyday will help.
Good luck. Feel free to email me if you want. This is rather disorganised as I'm a bit froggy..sorry! 
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Hi, so sorry to hear you're another member of our Fibro Club! Yes, it is difficult to adjust to the concept of a chronic illness with no cure. The process of dealing with that is very similar to the grief process, because you are grieving the loss of your "healthy" self. So give yourself time, feeling all the feelings, denial, anger, bargaining and sorrow, and you'll get through it to a place of acceptance, where fibro doesn't dominate your life, it's just part of it, like dentists and car repairs and other routine maintenance of life!
DON'T RESIST THE DRUGS!! They are extremely important to you now. If you had pneumonia you wouldn't resist penicillin. If you had diabetes you wouldn't resist insulin. If you broke your leg you wouldn't resist a painkiller or two. It's okay to take prescription drugs that are medically necessary. And there are a number of excellent medications that can help you manage your fibro symptoms quite effectively, and new ones coming on the market all the time.
Elavil is the gold standard of fibro treatment. I've been on it for around two years, since just after I was diagnosed. It promotes deep Level 4 delta sleep, which we don't get due to something called alpha-EEG anomaly sleep disorder. You are absolutely right that none of the other symptoms can be effectively addressed until your sleep disorder is managed and you erase the HUGE sleep deficit you are walking around with. (That's why it's so common for us to wake up feeling exhausted or like we've been hit by a Mack truck during the night! The technical medical name for it is "unrefreshed sleep.")
I also take other sleep meds, some every night, others just as needed (like Sonata). It's really a matter of trial and error of what your doctor thinks might work best for you. Everyone is different. (Okay, before you ask, my other sleep meds are generic Benadryl, the antihistimine that makes you drowsy, and Xanax.)
As fair as pain meds, studies have shown that the most effective, lowest side effect med for fibro type nerve pain (as opposed to muscle or tissue pain) is Ultram, generic name tramadol. I take it together with Extra Strength Tylenol generic version, and it helps me tremendously. I can always tell when I've missed taking a dose on time, because my back starts getting that fibro achy flu-like feeling.
There's a ton of info on the Internet when you're ready to start researching and there are several excellent books about it too.
Good luck to you and hang in there, it DOES get better.
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Laura
Keep it simple!
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LS, You ROCK!
#170261 - 04/15/05 05:02 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Kudos, LS! I don't have fibro, but if I did, you're the gal I'd come to. You say the right things and provide the right support. You're one terrific gal.
Thanks for being there for our fibro folks.
{{{{Hugs}}}}
Bevvy
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Ditto, Linz!
#170262 - 04/15/05 05:04 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Linz, you and LS are FANTASTIC! What a team! I know if JenX were here, she'd be right in there with you guys.
Thanks for being so terrific. I hope your financial situation is turning around for you.
{{{{Hugs}}}}
Bevvy
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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