Hi all. I wanted to introduce myself to the tribe. I've visited this site almost every day for over a year, but just recently joined. Call it pride I guess, but I really hate to admit to anyone I have fibromyalgia. Just recently I've become very open and honest with my family and friends about what's going on with me. I have all the usual symptoms. Way too many to list. I am very fortunate to be able to work part-time and I have a super supportive partner that takes care of all the chores that trigger my flare-ups. I would say very very rarely do I ever have a day without any pain at all, but at least it travels and only seems to settle in one place at a time. I recently went through a radical detox diet and have been faithfully stretching every day. The diet and stretching really seem to help. I don't want to resort to any medication quite yet. I feel like I need to save that treatment for when I can no longer function and do the things I love. For now, I take many supplements and lots of advil, etc. when needed. I have 2 questions. One, does anyone here recommend any supplements besides what I am taking. These include: selenium, magnesium, Vit B12, fish oil, Vit D, calcium, and Coenzyme 10 ( I have family heart history) . I've thought about glucosamine, but didn't know if it would be helpful? My second question is, does anyone here seem to injure easily? Each time I start to feel good, it's like I seem to push myself one step too far. Desperately wanting to just be "normal", I'll try and do activities that someone my age should do without a problem. For example, it seems to take little effort for me to pull muscles, or cause pains that will last for over a week. Even simple yardwork, vacuuming, or today I just stretched a little too far for something. I really try to remain positive, but there are days, like today, where I start off feeling great, and then BAM! , I hurt myself and now I'm fighting frustration knowing I will face days of pain.
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Re: new member
Fri, April 25, 2008 - 2:21 PM[waves howdy to Michelle]
1) Supplements: something I used to take that used to work well fer me (but I haven't found since out on the market fer a long while) was a pill that wuz a combination mega-B-vitamin complex, magnesium, manganese and malic acid (mighta had a couple of other viatmins, I ferget) -- I'm currently running with a B12, plus a regular multi-vitamin and fish oil meself (useta do the CoQ10 as well, and will probably go back to it once I figger out which of the things I'm taking now are and aren't helping [grin])
Glucosamine is another thing I tried early on and decided to discontinue fer now -- my opinion is that it's something you should only be taking at the point when yer doctor and/or physical therapist looks at yer bones on yer X-ray and *winces* (YMMV, of course, of course...)
I do *personally* disrecommend that Dr. Frank's spray stuff though (although I wouldn't blame anyone else fer giving it the same shot-in-the-dark try I did...)
2) Overextention: If I had a dime fer everytime I've done something 'simple' and paid fer it in pain, I could buy and sell Bill Gates [/end hyperbole]
Yeah, it happens -- even something as simple as taking one of my dogs out fer a walk can be hazardous if they decide to cross in front of me unexpectedly (or spot a particularly tasty looking squirrel), and force me to put weight on one of my knees at just the wrong angle.
I still try to pick and choose my activities with an appropriate amount of caution, but (short of becoming a 'bubble child') I figger you really can't always successfully avoid all of those potential situations and still have a 'real' life.
...but anyhoo, welcome to the fun-filled word of fibro! [/end gentle sarcasm, replace with smile...] -
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Fri, April 25, 2008 - 2:22 PM...oh yeah, this 'fun-filled WORLD of fibro' is oftimes strewn with typos, too [grin]... -
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Sat, April 26, 2008 - 5:53 AMThanks for the advice Andrew! I'm already glad I joined this tribe. Just knowing I'm not alone with this "crazy" stuff is very helpful. -
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Tue, April 29, 2008 - 11:34 PMFirst off howdy to ya and welcome.
Supplements I'm not taking a multivitamin like Centrum because a lot of those vitamins don't work well together and just end up canceling each other out. I'm not exactly sure how to explain that, but my doc and pharmacist both said pretty much the same thing. I take Vitc C for boosting my immune system, Vit E because of all the skin/nail problems, Glucosamine Chondroitin (not the one with sulfates) for my dear bones because as my doctor put "dear you have the bones of a 50 year old" - I was 29 at the time; my chiropractor was less thrilling when he showed me the neck and back of an 83 year old and it looked like my x-rays! ACK! Vit D cause its the sun vitamin and I forget now why that's important other than I work overnights. Fish Oil and Flax Seed Oil b/c I have the early stages of cholesterol showing up in my arteries. I've found that they have other benefits as well especially the Flax Seed Oil and my digestive system. Since i started it I have not had any boughts of constipation/ diarrhea which is always a bonus! I'm sure as time goes on I may add or remove some of these since I have not always taken these supplements.
Overdoing or as the case may be not overdoing it and pulling a muscle, injuries. I hate to say it but I've pulled muscles in my sleep. Gardening, and my other "normal" activities take some planning on my part. I do some gentle stretching and start out slow before tackling anything too taxing. Afterwards I almost always head for the shower or the hot tub. I will even go so far as to take my pain medications and muscle relaxers before I do "normal" things just to ease the aftermath of "pushing" myself. Biofreeze is one of my favorite products. You can get it on the web, from a good masseuse or chiropractor. It's like Icy Hot without the stink. The ice packs are always in the freezer or cooler and the heat packs are near the microwave before I start any activity because I never know until the pain hits which one I'm gonna need. I keep a nice lavender or mint scented lotion on hand for post shower, because the scents are so relaxing. The thing is the everyone even "the normals" do these same things when they push their bodies too far. Just because our bodies are more easily pushed doesn't mean we're all that different from them; instead it means we plan better for the pain we know will follow. -
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Wed, April 30, 2008 - 4:56 AMThanks so much for the advice Riane! I forgot about biofreeze. Someone at work let me borrow some once when I was having horrible neck and shoulder pains and it really helped. I'll have to look for it. I never really thought about taking anything prior to activities as a preventative thing. Sounds like a good idea, especially before working in the yard. -
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Wed, April 30, 2008 - 6:21 AMWelcome, Michelle. Sorry I missed your earlier post. I understand how hard it is to own up to the diagnosis. I've been suffering from pain for about eight or nine years and still cringe a little at the word fibromyalgia. Just this week, I was a the doctor's to start a new trial drug and she was reviewing my blood work and I was still looking for some kind of "real" condition. FM is just so vague and misunderstood.
I'm a big fan of muscle relaxers, but watch out. Sometimes, I worry that I rely on them a little too much after all these years. I used to take them only at bedtime and now I take them throughout the day. And be careful of taking them before doing things because you might not notice when you've pulled to far. It's the same with the heavy painkillers. If you don't feel the pain while you're doing something, it's easier to hurt yourself.
As for vitamins, I just take a regular multivitamin and eat as much fresh fruits and veggies as I can. I've been thinking about glucosamine and chondroitin, but haven't tried it yet. My budget is pretty tight at the moment and it always seems to expensive when I look at them. But like I said, my blood tests have always looked good and I'm not showing any deficiencies anywhere, so I think I'm okay. I'd love to go truly organic, but again, that takes time and money that I don't have right now. I'm getting better though. Baby steps, hehe.
Oh, and someone was wondering what vitamin D does. It's actually needed for you to absorb the calcium. I don't think it really serves any other purpose. That's why dairy products are fortified and calcium supplements should automatically contain vit D.
I'll have to look into that biofreeze. It sounds good. My pain is usually like a burning in the muscles, especially the shoulders and neck. It's like my whole trapezius is on fire. I had a doctor do something called a stretch and spray and it sounds like that might be the same thing. It was really helpful, but it turned into a fight with the insurance because they didn't want to pay for it.
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Wed, April 30, 2008 - 8:29 AMNice to meet you Heather! It's just so wonderful having all this support. I could just kick myself (although I don't want to cause further injury), for not joining a long time ago.
And you are correct about the Vitamin D. I work as a Bone Densitometry Technologist. (big word for I run a scanner that tests for osteoporosis). It's especially important to take Vitamin D if you live somewhere like Ohio (where I live), because your exposure to the sun is very limited. The sun is a natural source of Vit. D and unless you drink tons of milk, you really don't get much through your diet. -
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Wed, April 30, 2008 - 9:05 AMIt's ironic how many of work in the medical field, yet so many in the field don't understand. I was in an RN program until a few weeks ago and working as a nursing aide when my condition forced me to quit everything. My mother, my aunt and my sister are all nurses and they just don't get it. They are the folks that never ever call off sick and think less of anyone who does. The don't mean to be cruel, but it's so hard when they make those comments. My sister came down pretty hard on me and said that she's in pain and she still goes to work everyday and I just wanted to cry. They just can't comprehend pain so bad that you have trouble even getting out of bed. Heck, my biggest thrill today was that I actually got a shower, got dressed and went to the store. Sad, but that is a huge accomplishment for me right now.
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Re: new member
Thu, May 1, 2008 - 5:13 AMI'm so sorry Riane. It's really hard when you can't find support from your family. I do think it's crazy that many people in the medical field don't understand this condition better. If you had something more tangible like Rheumatoid arthritis there would probably be more sympathy. Unfortunately for us, there isn't a blood marker to test for this, or imaging that will show this condition. I really believe that is the only reason Fibromyalgia gains such little respect as a legitimate disease. People like us, know how very real it is. I had trouble putting on my shoes this morning to come to work. I'm 37 yrs old. That is not normal "aches and pains" everyone goes through. I don't here my peers saying "wow, I couldn't even tie my shoes this morning I'm so stiff". Maybe if they were 70. I'm very fortunate that my mom is a research nurse. Her site was one of the sites that tested Lyrica for Fibromyalgia. So she understands that this is real. -
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Thu, May 1, 2008 - 5:40 AMIt's so funny that you mention shoes. I was just telling the nurse at the rheumatology clinic about the changes I've made to accommodate my condition. One of them is to wear slip-on shoes, so I don't have to try to bend over and tie laces.
I definitely agree that FM is not seen as legitimate because there is no real diagnostic, but it also sucks that there is no real treatment. I've always bemoaned the fact that it's not like a broken arm, where you can see an x-ray, set the bone, wear a cast for a few weeks and you're good. Or even with RA, you can test and know that is really the problem and get whatever treatments are available. It's so vague and poorly defined that it's hard for doctors to recognize it and hard for patients to accept.
I'm doing a drug study now with riboxetine. There was one page to sign if you're willing to let them do DNA research. I signed right away, just hoping that someday, somebody can figure out a better way to diagnose and treat this nightmare!
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Thu, May 1, 2008 - 10:55 AMI just realized I wrote "Riane" in the above post. I meant Heather. Sorry. -
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Thu, May 1, 2008 - 10:55 PMHeh heh I do that all the time in real life. Pretty embarassing when I call my female coworker by my male coworker's name and vice versa! -
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Sat, May 3, 2008 - 8:14 AMwhew...sorry it took a bit for my two cens worth... life with fibro is never dull....
Let's see... my current regiem includes no soy (cause i'm intolerant) and I do half the Guif-protocol...in that I do not use anything with petrol-products, do not take asprin or anythign with proplyne glycol etc... (love dr. bronners)
So... I don't each much variety wise...as you may guess... I also have chronic fatigue, IBS and bunches of otehr nifty acronyms (as do many of us here...far to many of us...)
I take probiotic in the morning, really helps with nasuea and digestion... I take the magnesium - every other day... don't know why, but my bod doesn't like it daily, I take B-12 (B-dots...lvoe em), and then a mix of chinese herbs that are fairly cheap overall.... these have helped a lot with fatigue and my kidneys/liver seem to be functioning far better... I will go get them later and type it all in for you...they are in the room where my man is sleeping...he deserves to not be bothered just now...)
I'm nearly 10 years in...so I also take some other things... natural and pharmaceutical... but those are all actual drugs. I agree with your choice to wait.... I wish I'd had the forsight. I also strongly recommend you don't ever take actual pain pills... no opiates at all... unless it's for a short while like a "normal" would...
Neurotin has done wonders for many of us... others have a prefered cocktail... keep asking, we'll keep sharing! -
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Sun, May 4, 2008 - 5:44 PMThanks Paidia. Nice to meet you. I've read many of your posts over the last year before I joined. Feels good to be part of this community. =0) -
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Sat, May 10, 2008 - 11:29 PMI'm like you, Michelle.
I've been a member of this Tribe for ages, but rarely post, because if I post that means I really have IT! -
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Mon, May 12, 2008 - 11:40 AMI'm glad you posted though Melissa! Nice to meet you!
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