funkylicious ([info]_shegathersrain) wrote in [info]fibromyalgia,
@ 2008-10-10 16:26:00
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Current mood: sore
Current music:Dave Matthews Band

Hello...
My name is Olivia, I'm from New Jersey, and I'm 21 years old. I've been suffering from Fibromyalgia since I was 16 or 17 as far as I can tell. It started when my guy friends in high school would playfully punch my arm, and I would cringe in pain, though they had barely touched me. I also lost all of my energy, and the ability to focus or retain information that I was learning. I wasn't officially diagnosed until about two years ago. I started out with naturopathic treatment - from a doctor who I started seeing when I was 17 due to my disdain for and sensitivity to many medications - through detox, acupuncture, diet, exercise, supplements, and such. It absolutely helped me, but only to a degree. I learned that mild exercise, a strict diet, and taking the right supplements can help maintain a lower degree of pain, but my exhaustion, fibrofog, and everything else still held me back. I just found a medical doctor who understands my condition and truly listens to me every time I see him. He started me on a 5mg dosage of Elavil for my sleep disorder, which after a few months gradually increased to 20mg, without any luck. I still wake up exhausted and stiff. My daily pain usually hovers around 5-6, but on bad days it hits a 9 and I can't leave the couch. He prescribed me both Codeine and Fioricet for when my pain and tension headaches are especially bad. They have been helping to take the edge off, but nothing helps 100%, and I hate having to live medicated, though I've learned to accept it as a way for me to function and live my life for now. I go to both my medical and naturopathic doctors and combine their advice and recommendations.

I just joined today, so I figured I'd introduce myself. I look forward to hearing what everyone else does to get through the day. Tips are welcome! Hello to all.

Olivia




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[info]lelah
2008-10-10 08:35 pm UTC (link)
Hi there! Welcome! I am in NJ, too. I got Fibro about when you did, too (but I got it from Lyme disease that went untreated). I'm 30 now. What town is your Doctor in? I just saw a new one in Berkeley Heights. She put me on 800mg of Skelaxin, and gave me a prescription for accupuncture. I don't respond very well to any pain meds, either. So I guess I'll try this out. I take Ambien CR (12.5 mg) for sleeping. I was on Elavil when I was a teenager, though. It made me really groggy, if I remember correctly. Or that could have been the Lyme disease. Who knows!

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[info]_shegathersrain
2008-10-11 10:35 pm UTC (link)
My doc is in Hillsdale. The Elavil made me a little groggy and spacey in the beginning, but then my body got used to it. I thought it wasn't working, but after slowly getting back down to 5mg, my sleep has been a bit more violent (I knock things off of my nightstand, etc.). So maybe it was. Who knows! I have to figure it out.

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[info]house_draven
2008-10-10 08:46 pm UTC (link)
Hi, Olivia. Sorry you got to join the club.

The best advice I can offer you is to keep up with your exercise, no matter how rotten you feel. Even if you can only do a half workout on a bad day, try to push through and do it. It'll make all the difference in the world to you long-term.

That being said, it's perfectly okay to have bad days where you don't do anything else *but* your exercise, and don't let anybody give you any crap for it.

My other standard piece of advice is to learn about energy budgets and make one each day and each week and try to stick to 'em. Again, it'll make all the difference in the world to you long-term.

Good luck!

edited 'cuz I iz a writr who thunks grammer cowntz.

Edited at 2008-10-10 08:47 pm UTC

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[info]_shegathersrain
2008-10-11 10:37 pm UTC (link)
I hear you on the energy budgets! I always make the mistake of doing too much on my better days, and then I crash. Exercise definitely does make me feel better, because I notice a difference when I don't do it daily.

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[info]marraontheroad
2008-10-10 09:24 pm UTC (link)
I can totally relate to you in the catagory of nonrestorative sleep. So often I am exhausted and take a nap, only to wake up tense and worse than before. I also find my tension causes bad dreams sometimes, do you ever get that? I also was diagnosed at about age 17, for me it was after being diagnosed with EDS or Hypermobility Syndrome and having two major ankle surgeries. It took me ages to recover from the second surgery.
I second the others, to keep to some exercise even if it is hard. Sometimes moving and not resting helps more than just the resting alone.
Don't think of it as going through life medicated, think of it as your body needing some support and the medicine provides that support. People talk about how they don't want to be "doped up" or something but I am more focused and able to live my life than when I don't take my medication. Its then that I feel out of sorts and dopey.
To get through my day sometimes I drink soda even though I know I shouldn't, because it gives me that extra push to do a load of laundry or tidy up my room when otherwise I wouldn't be up to it. Don't be like me! haha.
I'm glad you joined the group!

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[info]_shegathersrain
2008-10-11 10:40 pm UTC (link)
Actually, I started having a lot of nightmares recently, but it was when I had to change my dosage of Elavil to 20mg. I thought maybe that caused it, but I'm not entirely sure. I'm hoping to figure out a good solution soon, because I can't take being so exhausted all the time!

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[info]choirlass
2008-10-11 05:00 pm UTC (link)
Welcome, sorry you have to join our group. One thing I've found that helps is massage. It really works well on the neck and shoulder pain and short circuits the tension headaches. Much nicer than a pill! Also, hot baths with Epsom salts are also a great muscle tension reliever. Best of luck to you as you figure out what works best for you.

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[info]_shegathersrain
2008-10-11 10:42 pm UTC (link)
I've contemplated massage. I'm always scared that it will be more painful than relaxing, but I guess even so, in the end it will help. Thanks for the suggestion, I might give it a go. The bath sounds like a good idea too! I remember reading somewhere about a Sake bath, and I tried it, and it helped. If I can find the link again I'll post it.

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[info]choirlass
2008-10-13 05:25 pm UTC (link)
You don't need to be afraid that it will hurt, your therapist doesn't want to do that to you, and most of them have had at least some training in helping people with fibromyalgia. Be sure to tell the therapist that you have fibro going in, and if your massage begins to get too painful, speak up! your therapist will then know to ease up until the muscle relaxes some. I've never heard of a sake bath, but a massage therapist I was seeing told me to add a six pack of cheap beer to an epsom salt bath, wow, was I ever looped after that bath! I slept better that night than I had in months! The upside to that is that generic beer is cheaper than sake most places besides Japan.

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[info]_shegathersrain
2008-10-14 03:40 am UTC (link)
Wow really?? I will absolutely try that asap! So the whole six pack plus how much of the epsom salt?

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[info]choirlass
2008-10-14 08:40 pm UTC (link)
She told me to use the whole box, I assumed she meant the small size, about the size of an 8 oz. milk carton. And the six pack was short cans, 12 oz. I believe. Hope you enjoy it!

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[info]_shegathersrain
2008-10-14 09:31 pm UTC (link)
Thanks! I'll let you know how it works out...

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