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Old 01-26-2011, 10:53 AM   #1 (permalink)
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Default Keeping fit with chronic pain

Spent some time thinking about the new diagnosis (fibromyalgia), and decided that changing the label on it doesn't matter so much, it's still the same problem I've dealt with the last 5 years and the symptoms aren't going to change just because of a new name. If a better diagnosis can lead to a better treatment, then bring it on .

But I know I'm not the only one trying to keep healthy in a body that seems to be fighting me every step of the way. So let's help each other. I'm making a place to post what helps and what doesn't, and venting is most definitely allowed. I know sometimes people in real life get tired of hearing it and we get tired of saying it, so here's a safe place. It's a fine line between keeping myself moving and pushing too hard. I'm hoping to find some kindred spirits working the balancing act too.
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Old 01-26-2011, 11:06 AM   #2 (permalink)
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Lizzycritter, I suffer from fibromyalgia too and it is definitely a challenge to stay focused sometimes. It has been really hard with the weather so dreary ( that's when I hurt the most) It feels like an extra 80 lb bag of something is on me and I just don't want to have to move because I don't want to have to carry this imaginary weight ( along with my actual weight) but it is what it is. So i try to look at anything positive I can and just work through the pain. I hope you can do the same... good luck Lizzy

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Old 01-26-2011, 12:52 PM   #3 (permalink)
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At age 40, I was getting seriously into bodybuilding. At age 42, I started to get REALLY sick and at age 44, I was diagnosed with fibro.

Many fibromyalgics (or fibromites as the books like to call us) have what is known as exercise intolerance. That means that what used to be my warm up now exhausts me. I miss being super active. I read what people write on this site and hey I'd love to try p90X or Insanity but for me that would be insanity. Sometimes I'm lucky if I can do ten minutes on the treamill and/or the elliptical and some stretches. But I do what I can do and I try to learn what that is. You need to move or you will hurt more but if you attempt too much, you will also be hurting, bad, possibly for days. At least that's how it is for me.

So I say go slow. You can always add. Fibro for me is all about finding balance. And being kind to yourself. If you are like most women, you have spent a lot of time doing for others. Now learn to do for yourself and by that I mean let others do for you. And remember that rest may be a four letter word but it's an essential part of the "fibromite's" vocab.

And by the way, all this sucks BIGTIME and anyone who says it doesn't, doesn't have fibro. Sorry. That was my rant -for now.
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Old 01-26-2011, 06:55 PM   #4 (permalink)
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Glad I got some replies, it's easier to cope knowing it's not just me and not just in my head. It's been bitter cold here, a little better today, out of the single digits at least. Cold weather makes everything that much harder. I don't feel so much like I'm carrying more weight, it's more like I'm moving through syrup. I find too as I'm reading up on it, a lot of the "tips" I'm finding for balancing activity and rest are things I've already started doing on my own, like anything important should be done early, and if I need to stop for the night, then the dishes can wait. If I push too hard, I will pay for it for the next 1-3 days, and that's been true for quite a while now. Hubs has been reading up too, and he thinks it makes a lot of sense. Being able to give it a name I think makes it more "real" to him, not that he didn't believe me before but he's very logic-minded so "I have fibro" makes a lot more sense for him than "I hurt but I don't know why".
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Old 01-26-2011, 07:21 PM   #5 (permalink)
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Look at www.fibromyalgiatreatment.com

You may not choose to go on the guaifenesin protocol (one method of treatment I'm on) but it gives a lot of info. And the first thing it says is You are not crazy.

There's also a book called What Your Physician May Not Tell You about Fibromyalgia by Dr R Paul St Amand. Also books and articles by Dr. Mark Pellegrino. Pellegrino is all over the internet with articles and advice but I prefer St Amand.

When I first got sick enough to know something was wrong, I did not know what to do. I thought I was dying; that's how bad it was.

What are your symptoms? if you don't mind my asking. It is vastly different for everyone.

One other thing: 40% of fibro people are hypcoglycemic. So low carb is a great diet for us. Not one I can unfortunately stay on but maybe it is of some help to you...
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Old 01-26-2011, 11:57 PM   #6 (permalink)
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Interesting, I self-diagnosed myself hypoglycemic about a decade ago, during college. I had a 5 hour surgery lab, 7 am til noon, no snacking possible in a surgical mask, so I'd get a large bagel with huge amounts of cream cheese and a latte on my way in, and be absolutely shaky, starving to death when class let out and I could get to my bag for a protein bar. One morning on a whim, I got a custard donut instead of the bagel, was really giddy for the first 2 hrs of surgery, and then I hit the floor. Literally. One instructor let me sneak out for food after that, the other one told me to suck it up.

My symptoms started about 5 years ago with elbow pain and a lot of forearm tension on the right, never really adequately explained IMO, they called it repetitive motion injury even though I never could figure out what I did that was repetitive. Then tendonitis, tennis and golfer's elbow, both the inner and outer sides of the elbow, which from what I could research, shouldn't happen together, should be one or the other. It got bad enough I ended up in PT, on antidepressants for lack of sleep, rheumatologist consult for 27 x-rays and 14 vials of blood that showed nothing at all, meanwhile started having same symptoms in the left arm and right hip. Got a half dozen braces to sleep in too, 3 for each arm, and carpal tunnel added to the list. Had a nerve conduction study too, that was fun, and also mostly normal, except one borderline low speed nerve. Right hip was diagnosed as a weak ileosacral joint (where the spine/sacrum and pelvis meet), more PT which did help and I still do those exercises to keep it in check, it pops out sometimes and causes nerve pain down my whole right leg into the sole of my foot, blanking on the name of that nerve It's a common thing too, did I mention sometimes I can't remember stuff? lol I do a lot of walking into a room and forgetting what I went in there for, I have to-do lists everywhere, if it's not written don't expect me to remember it. Slow progression of joint pain and tendonitis over several years, now it's pretty much everywhere, went to hands then ankles and toes and lately knees pretty badly. I do have back and neck pain but I don't notice it so much unless I'm thinking about it specifically because something else is usually more distracting. Simple things leave me wiped out, I often don't put groceries away for days because I'm so tired from shopping I have to push myself to get the cold stuff in the fridge/freezer. I haven't missed work because I'm stubborn, vomiting and fever are the only things that keep me home, or a sick child. But sometimes the kids don't get a bath and dishes are often left undone, laundry not folded etc. I got put on Celebrex not quite 2 years ago for osteoarthritis, even though x-rays only show minor arthritic changes, it was good for the inflammation/tendonitis too. Some debate from my primary doc over whether it was osteo or psoriatic arthritis, I've had psoriasis since age 19 but always has been pretty minor, just knees and elbows, and didn't even think to tell the rheumatologist, that visit was so long ago. Been to at least 4 different orthopods, 2 PCP's and the rheumatologist, been tested for Lymes disease and bartonellosis since I work in vet medicine. The Celebrex hasn't ever resolved the pain, but it did reduce it enough that I could put my son (about 9 mos then) on one hip and have one arm free (couldn't do that even when he was a newborn), and enough function to get to the gym, monitor my diet, and lose a bag and a half of kitty litter, but since winter set in the Celebrex hasn't been enough most days and I am a royal b-word to live with when my pain levels are high.
Somewhere in there too I've had MRI's of both arms, CT and MRI of my head, and a surgical consult for biopsy of the right elbow, that guy didn't want to cut into me and he's the one who put me on the antidepressants and sent me to the hip guy, good doc that one. I was pissed at the time because I wanted the biopsy, and an answer, but I'm glad now he didn't want to do it.

Wow, that's a lot longer than I expected it to be lol. As for the new meds, it's only day 3, so far tolerating it OK but not noticing much, dose increases tomorrow. I'll keep ya posted.
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Old 01-27-2011, 02:33 AM   #7 (permalink)
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Wow you've been through the wringer. The loss of memory stuff is called "fibrofog." Neat that there's a term for it, huh? A little chronic illness sarcasm there...

A lot of us diagnose ourselves re hypoglycemia. After fainting and getting the shakes from lack of food, I figured it out... Bring food, Hope. When I don't DH does so we don't have to go on frantic protein hunts.

I will comment more but speaking of tired...

By the way fibro people tend towards insomnia. Have you noticed that? And of course anyone would be a royal b-word when she's exhausted and in pain. Screw the groceries, I say. They'll put themselves away. Or will the elves come do it....
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Old 01-28-2011, 11:29 PM   #8 (permalink)
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So day 5 on the meds, and I have to say I'm in a lot less pain, but the last 2 days have been awful on the nausea front. So dietwise it's been whatever I think will go down, which oddly enough is mostly fruit and celery with peanut butter, and exercise is out of the question. Finally around 3:30 this afternoon the nausea seems to be easing up a bit, I'm hoping it stays that way and I don't wake up sick, I've thrown up the past 2 mornings Still feeling very "medicated" and my back is a little stiff but it feels like normal pain, if that makes sense. So it's a mixed review so far. If this nausea dies down I will be one happy camper. If it doesn't then this isn't going to work for me.

And insomnia and I are good buddies. I lost count of how many times I woke up last night. So much for going to bed early.
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Old 02-03-2011, 07:02 PM   #9 (permalink)
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I'm sorry to hear you're having trouble with your meds. I have heard Savella can cause extremely severe nausea.

I tried Cymbalta and it made me feel like a zombie so I am on Lyrica which seemed to help but now seems to be making my blood pressure go sky high (I'm already on meds for it.)

The thing that seemed to have helped the most is the guaifensein protocol and I am going back yet again on the hypoglycemic diet (no sugar, lowish carb.)

I've been having trouble with muscle weakness so I am just going to try to keep up at least a light stretching routine. Good luck!!
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Old 02-05-2011, 08:52 PM   #10 (permalink)
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Thanks : ) I go back to the doc Monday, so we'll see. My morning drive is still in the dark this time of year, and that makes me kinda nervous, but... one day at a time. Yesterday and today I've been eating everything that isn't nailed down. Next week I need to get back on the food log.
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