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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
7/16/12 5:36 P

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Asking questions is what got me to SparkPeople! LOL

Go for it!
Kathy emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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NEWVINE's Photo NEWVINE Posts: 4,807
7/16/12 8:19 A

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emoticon Kathy your information was helpful. We are all different and you now have me wondering about some things. I have a few questions to ask when I return to therapy. emoticon

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
7/16/12 5:57 A

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NEWVINE, I have just a few comments... as usual! LOL

Some of the suggestions you mention really made a lot of sense. Moving heavy objects by rolling or sliding them... resting BEFORE you are tired... propping up books or reference materials to free up your hands... and avoiding holding muscles in one position for a long time--a BIG one for me, I get some horrendous muscle spasms if I'm static for too long! LOL

But...

I tried that "holding the knife like a dagger"... and I have to say that I just cannot do it. It makes my wrists ache even trying one stroke that way. Maybe I'm doing it wrong but...the thing about chopping or slicing something for me? As much as--maybe even more than-- the technique, it's having the right tools-- a sturdy SHARP blade is key. I have Cutco, they're guaranteed sharp for a lifetime or they'll refinish or replace them for free. They are well balanced, heavy stainless steel with a mirror finish, and they are wonderfully easy to use (especially with the techniques I learned... I watched some cooking shows in slow motion, to see how the chefs do it. VERY educational--I learned that the knife should be doing more of the work than I do! LOL).

I help in my friends' kitchens from time to time, and I can sure tell the difference when I'm not using the good stuff... ouch!

The other thing?

"Reduce all unnecessary bending, reaching and stretching."

I agree that it can reduce wear on the joints with the arthritis, but my doctor sent me to a physical therapist for both the arthritis AND the fibro, so I could learn how to use the joints without adding so much to the damage. Reducing movement, you may have less wear and tear, but you also end up with less mobility, since the joints will 'freeze' or stiffen.

I think the idea is supposed to be finding a balance... And of course, for the fibro, bending, reaching and stretching actually really HELP! LOL

Kind of a "Catch 22", isn't it? Been there... darned if you do, and darned if you don't! LOL

I guess the trick is figuring out where to draw the line for ourselves. We're all different, and listening to what our bodies tell us is another thing we all have to learn, huh...

Thanks for sharing the info you got... it's made me re-examine my routine activities again, and that's never a bad thing! LOL

Kathy emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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NEWVINE's Photo NEWVINE Posts: 4,807
7/13/12 10:39 A

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Hope you feel better soon. I have osteoarthritis in my hands. When I went to therapy they gave me run offs from The Rehabilitation Hospital of Altoona. I don't know it there is a web sight but it information has been very helpful.

Rest before you are tired slide or roll heavy objects Use lightweight equipment Reduce all unnecessary bending, reaching and stretching.

Avoid holding or using muscles in one position for a long time Avoid holding books or papers, instead support the book on a book rest or prop it on a cushion, leaving hands free

Use strongest joints available Carry pocket book or shopping bag on forearm by using elbow. When lifting or carrying small objects, lift on palms of your hands,using your wrist

Hold a knife like a dagger and use a pulling action to cut

To lift a saucepan, with pot holders put palms of both hands around sides of pan and lift
Hope this is helpful

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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
7/13/12 3:17 A

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It's a tricky beastie, isn't it though?

We all have slightly different versions of it, very individual... as is what works for each of us.

Personally, most drugs I tried for the fibro caused more problems than they solved, and it's been narrowed down to just SMALL doses of Vicodin twice a day (with more if I'm in severe flare), physical therapy exercises four times a week and lots of walking between, plus meditation, warm baths and ice packs, and SparkPeople.

Yep, this is part of my 'therapy'! LOL

The people here all are in the same boat, and we all have those days when we just want to cry and scream and give up... and we don't.

Instead, we listen to each other. We're not alone...

...and that helps more than just about anything. Knowing there is someone who understands...

Kathy emoticon emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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MAYFLOWERCHICK's Photo MAYFLOWERCHICK Posts: 77
7/7/12 1:00 P

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Is there ever a day without pain? Seriously!!! My hands just hurt all the freakin' time. My fingers feel like they just want to stay in a partially curled-up position. If I couldn't see them, I would think that my hands were swollen twice their size. Of course, they are not. I am getting used to taking things one day at a time, making sure that I don't try to do everything at once (I had 2 baby oak trees that I had to plant this week--I did one earlier this week and one later this week), still trying to get more sleep in. But the constant pain, especially in my hands, is enough to make anybody crazy! I have osteoarthritis just about everywhere and I get injections, and I get radiofrequency ablations, etc. etc. and I thought I was in pain. I had major jaw pain earlier this year as both jaw joints have deteriorated due to arthritis. I have been on a soft food diet since February because of this and I was a major b**** when my sisters visited this year because I was just in pain! Well, when the fibro pain hit...forget the jaw pain! Really! My jaw hurts sometimes, yes. But my hands freakin' hurt! When I mow the lawn I now have to wear 3 pairs of gardening gloves and I still feel like I'm vibrating (remember the cartoons when the cartoon character would continue to shake?) On Tuesday, I am having my right jaw replaced (I have no other options at this point). Yea! Maybe real food eventually! After all of this, I'm just wondering if there are no-pain days ever? I'm on the generic of Neurontin (I can't spell it..!!) and take 12 capsules a day. Have a lot more energy than when I started it and less pain throughout my body. My hands have started twitching, which I have discovered can be from either the medication or possibly from the fibro? But the pain. I bear it. But sometimes....I just want to scream. So here I am...not screaming, but hoping that I am not complaining or whining. Just wondering as I still consider myself a newbie. And are there any good reference books? Thanks for listening and I'd love some feedback!

Karen Norrod
2010 TOPS Texas State Queen

"Moderation, not deprivation!"
"It's not a diet; it's a lifestyle change!"


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
5/24/12 6:49 P

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Ah yes, a life of bizarre repartee-- with random words that just sort of join the conversation uninvited... For some people it's worse than for others... I know of one lady who was an elementary teacher and had to quit her job because she was confusing the kids in her class--that had to suck.

But if your livelihood doesn't depend on getting it right the first time, once you get over the initial embarrassment it can actually be quite funny! LOL

My friends just take it in stride now...

... and you're right, a sense of humor is a must. And though you need both, laughter is so much healthier than crying... my doctor calls it "internal jogging!" LOL

Kathy emoticon emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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MAYFLOWERCHICK's Photo MAYFLOWERCHICK Posts: 77
5/24/12 12:10 P

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I am completely confused now! I was doing really well, and am still definitely doing better than I was before starting the Gabapentin. I am now on 3 pills/day. Last week I started feeling alittle worse, so I hoped that when I went to 3/day this past Monday, I would feel better, but I don't. On Memorial Day I start 4/day, so maybe that will do it, but I see my pain management doctor next week. I'm still hopeful though. I really do still have a lot more energy than I did before and definitely much less pain, but some of that burning pain is back, just not as bad. A somewhat funny story: for the past couple of months I have been forgetting words. Getting older, I've been doing that, but it has been different than that normal way of forgetting, if that makes sense. I was getting so concerned that I finally looked up online the symptoms of early onset alzheimers, worried that maybe that was what was happening. I was quite relieved to read the 10 symptoms and realize that no, that was not what was happening. I had joined the Fibromyalgia Network and was reading the journal that was sent to me this past Monday evening. There was an article in it about Fibro Fog and one of the bold type headlines in it was about word issues. I have been skipping over everything to do with Fibro Fog, only because I felt I was not in a "fog"; my brain felt pretty clear to me. I was not relating my word-forgetting to that. When I read the article, I had to laugh. If I had read the article one day earlier, I would not have had to look up the alzheimers information. I would have already known what my problem was! I have been chuckling over that throughout the week. I have to find the humor!!!

Karen Norrod
2010 TOPS Texas State Queen

"Moderation, not deprivation!"
"It's not a diet; it's a lifestyle change!"


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
5/22/12 1:06 P

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I am SO glad you're having some success with the gabapentin! HURRAY! lol

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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MAYFLOWERCHICK's Photo MAYFLOWERCHICK Posts: 77
5/19/12 1:47 P

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emoticon I really appreciate everyone's input. I wanted to give y'all an update! I saw my pain management doctor this past Monday (May 14th). We discussed the choice of medications. I had assumed they would put me on Lyrica. At that point I was willing to pay the $65/month (and would have submitted paperwork to the drug company to try to get it for free as I cannot afford that) but I was in so much pain and so tired I would have done just about anything! Instead, he suggested Neurontin, or the generic Gabapentin, which I would not have to pay anything for. Of course, I was all for trying that! They sent me off with the schedule (absolutely crazy!!) and I picked it up that afternoon and started it that night (1 pill/day). Thursday I started taking 2 pills/day and Monday I start taking 3 pills/day). By Friday, I felt like I had a new life. I still have some pain, but my energy level has increased incredibly and the pain has decreased. I feel that I can start walking again. I am still resting and trying to make sure that I get plenty of sleep. I hope that I don't have to work up to the whole 12 pills/day (I can't imagine how I would feel at that dosage!!) but now I just feel like a person again. I'm going to try Tai Chi and that dance walking that was suggested. I really appreciated all of your support; I can't tell you how important it was to me at a time that I could not figure out what was happening to me. This is a great group and I plan to stay active here. Love you all! Thank you!

Edited by: MAYFLOWERCHICK at: 5/19/2012 (13:48)
Karen Norrod
2010 TOPS Texas State Queen

"Moderation, not deprivation!"
"It's not a diet; it's a lifestyle change!"


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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
5/13/12 2:04 P

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I tried Lyrica... for two days. I gained 15 pounds in two days. I have other health issues where weight gain is a definite hazard, so byebye Lyrica... but it's different for all of us, and there are a lot of folks out there who do quite well... so just take it a day at a time, and see... it may take some time for you to find anything that works for you.

I take small doses of Vicodin every day, with extra available when I have flares--but I rely mostly on meditation, exercise, heat and ice therapy... and rest.

Surprising how much help a good night's sleep can be! LOL

We're here whenever you need to vent or ask a question...

Kathy emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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WRITINGDIVA1's Photo WRITINGDIVA1 Posts: 294
5/13/12 2:04 P

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Hi Karen,

Welcome to the group. I wasn't officially diagnosed, other than a side comment from a doctor who was treating me for something else. She didn't want to treat me. But she pushed the sore points/joints (sorry don't know what they are called) and they were painful.

However, I noticed that once I started taking some meds for people with fibromyalgia I felt amazing. My chiropractor was helpful as well. I also had an acupuncturist who worked with me as well. None of them told me that I had fibromyalgia, however, they all used a protocol which I have since found out is used for fibromyalgia.

I was told from an RN that this is a collection of symptoms. There is no magic bullet. Good luck to you in your search and remember that the most important thing for you to do is to listen to your body and honor it. That means resting, watching what you eat, and finding the exercise modality that works best for you.

Good luck! emoticon

The pounds are sliding off...


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MAYFLOWERCHICK's Photo MAYFLOWERCHICK Posts: 77
5/12/12 4:26 P

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emoticon I have been meaning to say thank you for a few days now, but have been kept busy, which can be good when you have chronic pain! I loved all of your comments and I really appreciate them all! For some reason I feel really lost with this diagnosis (and it is officially a diagnosis now)--maybe because there seems to be no rhyme nor reason for it. Why just all of a sudden? I go and see my pain management doctor on Monday and am looking forward to getting put on medication. I know I cannot take Cymbalta--I have major depression (lifelong issue!) and tried that and was so sedated that I could not get behind the wheel of my car. So I will have to go with Lyrica or something from that class of drugs. From what I have read, Lyrica can make you gain weight. That doesn't make me very happy or excited to start the drug! How frustrating!

Karen Norrod
2010 TOPS Texas State Queen

"Moderation, not deprivation!"
"It's not a diet; it's a lifestyle change!"


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NEWVINE's Photo NEWVINE Posts: 4,807
5/7/12 7:38 A

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emoticon I have found some good advice here and have tried some of the things others are doing. Find what works for you, but start slowly. Good luck with your jaw replacement. Will keep you in my prayers.

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JAMER123's Photo JAMER123 SparkPoints: (214,799)
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5/6/12 9:26 P

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emoticon Karen and emoticon to our team. Most of us have multiple conditions that we are living with every day and trying to work through chronic pain. I use water exercises and deep tissue massage. It takes time to tolerate deep tissue but in the end, it has kept me out of a wheelchair. We are campers and I walk when I can and feel like I can.
Again, Welcome!!

Eileen

Slow & steady makes a winner of us. Even if we hit pitfalls, get up. Know that a new day is right around the corner.
Try to be all that you can be. Work at it a day at a time.

"Be not afraid of going slow; be afraid if standing still" (Chinese Proverb)

With God all things are possible.

If you have the courage to begin, you have the courage to succeed.
~ David Viscott

MN. Sparks Fat Kickers Team Leader www.sparkpeople.com/myspark/


 
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,822
5/6/12 1:11 P

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Yep, the others are right, last study I read about said that it takes fibromyalgia patients an average of SIX YEARS to get a diagnosis--because it's a process of eliminating everything else!

Exercise will help the arthritis and the fibro both--but it won't eliminate the fibro pain. It just keeps the joints mobile, and the muscles strong, so your body is more stable, and it thus increases the POSSIBILITY of healing because you're healthier in other ways. Its also good for your internal organs...

And to answer your question, I LOVE Tai Chi...!

I used to do it regularly before I was diagnosed, had to have surgery and that was that... I didn't get back to it for YEARS-- but I found a website last fall with a demo tape I can follow along with for free... I use it for warm-ups about twice a week, then I do my physical therapy stuff, and at the end my new thing before cooling down is 'dance walking' to some of my favorite tunes--though I DON'T live in the city... I can do either one right in my own home/neighborhood--and it's free! LOL

Just for kicks, you can check these out:

www.taichi18.com/?gclid=COLZ9uOVhqsC
FQ
FpgwodynW65g


www.youtube.com/watch?v=Ib3Duz_6a9M&
fe
ature=relmfu


Give them a try and see what you think... do warm up before the dance/walking though-- depending on the music you choose, it can be pretty vigorous! LOL

Nothing is worse about this disease than letting life pass you by, so even if it hurts, I'm out there trying... and I hope you will be too.

Take things easy, start small and take baby steps, and rest when you need to... and check in with the gang here FREQUENTLY, because...

... You're not alone in this, and it isn't an easy thing--but you're alive and you deserve to feel alive!

Welcome to the team!
Kathy emoticon emoticon

Edited by: I.M.MAGIC at: 5/6/2012 (13:13)
"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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TRY2KEEPGOING's Photo TRY2KEEPGOING SparkPoints: (35,458)
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5/6/12 11:09 A

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Welcome!!!

I hope you get answers soon my friend. Most of us take years and a lot of frustration before we have a diagnosis. Sounds like that may be the case for you. Exercise in general can be very helpful. I consider exercise to be one of my medications! If I don't exercise my pain gets way out of control. Just start for 5 mins. That's it. Do not overdo. Build slowly. I now do 30 minutes a day. On days I do not feel motivated, I tell myself to do 10 minutes. Once I start moving, it does get easier and I usually end up doing the full thirty.

Good luck to you!
Kathy

You have to take care of yourself in order to be able to take care of others

Be kind to all because everyone you meet is fighting some sort of battle.



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MWATERTOP's Photo MWATERTOP SparkPoints: (1,216)
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5/6/12 11:09 A

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Hi Karen, my name is Mindy and I am 53 years old. It's great to meet you. I have fibro, diabetes, a back that is all messed up and hyprothyroidism. that doesn't help cause that causes weight gain along with some meds that do the same. emoticon

When I feel like I can't take another step in life, He always carries me.


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MAYFLOWERCHICK's Photo MAYFLOWERCHICK Posts: 77
5/6/12 10:35 A

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Hi Everyone! My name is Karen and I'm 50 years old. I'm still waiting for blood work results but after reading about fibromyalgia and the doctor saying she thinks that is probably what it is, I'm pretty sure. I have osteoarthritis in every joint and about to have my first joint replacement--in my jaw--on July 10th. Evidentally it takes awhile to make a well-fitting jaw joint! I try to use humor to get through things but it has been harder and harder to do that lately. I had lost 109 lbs. and over the past few months (for reasons that I think I'm going to blog about) I gained back 19. Luckily I was able to stop the eating, and I have been able to lose 5 of those pounds. With the constant burning pain it is so hard to do normal regular everyday tasks, much less exercise! I have been absent from SparkPeople for awhile and have made attempts to return. I want to come back because I know something has been missing. I knew that everyone in this group would understand the pain that I was feeling that nobody else would. How do you get yourselves moving? Does Tai Chi help anyone? I have been thinking about trying that because I have heard that can help with arthritis, but I don't know if that helps with fibromyalgia. I'm glad to be here and that there is place for me to be!

Karen Norrod
2010 TOPS Texas State Queen

"Moderation, not deprivation!"
"It's not a diet; it's a lifestyle change!"


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