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MRSSHOWME's Photo MRSSHOWME Posts: 252
11/17/12 12:13 P

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Creeklady - good luck. I am struggling so much after finally getting a diagnosis in February. I have tried most everything on the market, and just had a long meeting with my doctor yesterday about how things just still seem to be getting worse. I honestly can't remember the last time I had a "good" day - it was probably in July. I have had better luck with Savella than Cymbalta or Lyrica -though it certainly took some getting used to. I was so nauseous the first week or so I thought I would lose my mind. The one positive besides the limited help it does give me, is that it is one that doesn't cause weight gain. I have continued to lose since being on it, and given the state of my pain I have not been able to exercise at all. Wishing you the best, and hope you find help here. There are many wonderful resources in this group.

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11/5/12 8:08 P

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CREEKLADY1, Some people just have a real hard time adjusting toi the medications. It took me 2 weeks to adjust to Cymbalta. And there were some that I never did adjust to and had to stop. You need to work with your doctor to find what will help you. Everyone is different. WebMD has some list of herbal treatment s that some people take. It explains them and tell you what to watch for.

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11/3/12 9:36 P

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Hi folks....I'm new to this discussion and not sure as to what I'm to say. I have had fibromyalgia for a few years. My pain varys from time to time. Some weeks I have no pain whatsoever, then sometimes it hurts so bad I can hardly stand it. I have tried Lyrica and Cymbalta, but could not tolerate either. The only thing that I can do for the pain is pain pills. I try not to take too many but the pain is so unbearable...especially at night. I wish there was something else to relieve the pain but so far I have't found it. Any suggestion to relieve the pain would be greatly appreciated!

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10/18/12 5:42 P

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I had gotten to the point where I needed a prescription NSAID. The over the counter stuff just does nothing for me unless I get a headache. So I take Sulindac twice a day as well as the other medications.

Mark
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10/17/12 3:40 P

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I do also take one 200 mg ibuprofin every night during the week..

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10/9/12 5:33 P

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I have been so busy lately. I finally got to meet my new Rheumatologist. He was great. He reconfirmed my Fibro diagnoses so that he would know for himself. Even with all the meds I wanted to scream when he pushed on the Trigger points. He gave me some interesting statistics. 95% of Fibro patients also Have Ankylosing Spondylitis in some degree, and 95% of people with AS have Irritable Bowel Syndrome. He changed my meds mostly by adding some that would help me to sleep and even the IBS medicines is to be taken at bed time because it well make you sleepy. I have never felt better.

Pickie98. I only take my pain pills at night. They make it so I can sleep through the night. I only use the Cymbalta and Gabapintin during the day.

Mark
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10/2/12 12:46 P

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I am glad to hear others have that happen to them,,
one thing I did discover accidentally, is about my pain pills. I have been suffering in agony because teh pain pills knock me out so long and so deeply, that DD thought I was in a coma two weeks ago,, she could not wake me for hours.. scared her to death...
anyway, one of my co-workers told me that you have to keep taking the pill, eventually your body will adjust to it.. I took a half pill last Friday evening,, felt very drowsy, but I worked all day, too,, then took another Saturday morning,, ran errands, drove my car, etc.. did not fall asleep all day,, until dinner time,, I fell asleep for an hour or so in teh chair,, but that s not a big deal for me.. I still do not feel comfortable taking them before work or when I have lot of things to do in the car, but this is a huge break through for me..
I CAN be semi-pain-free for a couple days a week.

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LADY-JAENH's Photo LADY-JAENH Posts: 140
10/1/12 8:07 P

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Yes its normal to have pain free times followed by pain. Welcome to sp!

Lady Jae
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10/1/12 5:34 P

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I go thru times when I have no pain at all..then there are days and nights where the pain is so bad I don't sleep. Is this normal? I'm new to the disease and want to find out all I can about it.


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9/28/12 3:17 P

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So glad you are back!

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LADY-JAENH's Photo LADY-JAENH Posts: 140
9/27/12 11:06 P

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Hello all! I havent been around in a while. Trying to get motivated to move more and loose added weight, and hopefully it helps me with fibro pain. Been reading refreshing my memory on fibro info. Hope to be active here again

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9/27/12 4:12 P

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The only thing worse than having a bad fibro day is: going for your scheduled MAMMOGRAM on that day! I deserve the "Dork of the Day" award for that yesterday!

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6/9/12 1:42 P

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Mark you are such a good son.. my yard is awful, still do not have the pool liner or cover out of teh deep end hole,, it is very humid and 86 degrees,,98% humidity.. our asthma will not tolerate hard physical labor in high humidity.. indoor chores today..

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
6/9/12 1:23 P

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Hi all. Been busy trying to clean and fix up the garden at my Dad's house. It is really neglected. All ready I have things coming back to life. It was cooler then normal all last week so I took advantage of it. Yesterday though, I could tell I have been overdoing it as the Fibro flared up. Today is a soso day but much better then yesterday.

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6/8/12 2:22 P

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Thank you Chris! I will hunt for it!

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6/8/12 1:42 P

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My daughter also taught me about OTC pain patches. They come in various sizes. Regular drug stores sell them and even in the grocery stores near the pain creams. Chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
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30 lbs. gone. Now to work on the next 10 lbs.


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5/29/12 4:14 P

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Fibro mom of five dealing with this for over 20 years. Still can't figure this out. What has kept me going is a few spots of what I call remission. I felt normal and forgot I had this "syndrome" for a while. I dream of a cure or at least sincere acknowledgement of our pain. Not only physical but emotional and mental pain accompanies it. I call it a "disease". This is my first day on here and my first comment. I read so that I can learn what tricks have helped others and pray some of them may help me as well. Thank you all for sharing personal and painful experiences so that others may benefit.
Bless you all.
P.S. If anyone has the answer to _continuing_ pain relief and/or sleep help, please share it.

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5/28/12 3:19 P

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Chris, do you know the name of the Mg cream? Our ancestors knew about which they spoke,eh? We used it all the time for muscle soreness,, pain..

Edited by: PICKIE98 at: 5/28/2012 (15:20)
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5/28/12 8:50 A

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Just a note about Epsom salts. My daughter taught me that the magnesium actually goes through your skin. that is how it helps the pain. Now they make a lotion with magnesium in it. Chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
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30 lbs. gone. Now to work on the next 10 lbs.


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5/26/12 9:08 A

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Well, I am confessing to you all:I am never going to ASSUME things without asking the doc first. I still have some soreness in my hand, but it is tolerable,, I did the ice, wrap, rest,etc thing,, after work,, will wear my brace this weekend.. seems to help some. Stubborn=stupid sometimes..

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5/24/12 2:31 P

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Well, apparently being stubborn is not all it's cracked up to be: I think I ruined my surgery.. my hand is screaming in agony since I did that yesterday!! Shooting pains worse than before the surgery. Never again....

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/24/12 12:02 P

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Pickie, I did fairly well now with the asthma unless (like you) I hit an incline (or stairs). Working with my physical therapist we worked on endurance and pain relief more then any thing else. Having worked up to just doing a little every day to being able to do a lot. But I still have my limitations and I get exhausted easily but I push my way through it to get things done. Like you I also over do things and suffer for it later. But I am so stubborn and determined that I just do it.

Sprinter, that is great that you are finding less pain.

Mark
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5/24/12 9:40 A

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That's a great saying! I get inspiration from others with Fibro and oesteoarthritis.I never thought i could exercise and be healthy.I'm in the early stages of being fit and already i have less pain and loads of confidence.I'm focused on change and enjoying it.
Thanks

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5/23/12 2:43 P

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Mark, are you able to walk at a normal pace, or does your asthma kick in with your restrictions? I can walk for miles until I hit any incline, then the asthma jumps right in there!!

It seems you get things thrown right and left to try to deter you doing any exercise, but you are sure a persistent guy!! I applaud you!!

So I just blogged about my pool, just climbed out of the wall o f it, am in agony with the hand that I just had surgery on, stupidly, I was using a ratchet to remove about a hundred screws holding the walls up,, I am in so much pain I had to put my brace back on, first time since my surgery.. Why do I keep trying to do things my body screams "NO!" to?????
I think I am still kind of in denial about my fibro.. arthritis was bad enough,, I am trying to prove to myself that I CAN do this,, the body painfully darned near wrings me inside out before I get the message, "No more of that ".. AM I slow, or what??

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/20/12 10:24 A

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Yeah, AS (Ankylosing Spondylitis) is the worst problem that I have. But the Neurological problems from Fibro cause more pain and is harder to control. The AS has really limited my mobility and the fusion it has caused in me ribs has lead to severe asthma due to restriction of the lungs. It also caused scar tissue to form in the lower 3rd of each lung limiting my lung capacity to 50% of normal. But I make it through it and am joyful for each day I have.

Mark
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5/19/12 5:51 P

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Mark, I was poking around SP and read some of the info on Ankylosing spondylitis. I now feel (almost) lucky having fibromyalgia! thinking of you, Chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
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www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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5/19/12 5:42 P

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Even JFK napped!

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
www.caring.com/
www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/19/12 2:39 P

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That is great that you are having lower pain. The 8 hour release Tylenol is very helpful but because of the cost I just use the regular Tylenol and take it as needed.

I slept almost all day yesterday which caused my dad to say I was lazy. I had to explain to him again that some times my body just needs a rest. Hopefully he understood.

Mark
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5/18/12 5:36 P

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Hopefully, I figured out why I was sleepy for 5 whole days! I need Tylenol for fibro pain. But stores did not seem to be stocking my tylenol 8 hr. I substituted Care One Arthritis 8 hr. It has the same amount of acetaminophen. As soon as I can find the 8 hr. Tylenol , I will go back to it.

Now--good news-- my pain is less. I have had no pain killer last evening and all day today.
this is really unusual. Dare I hope...

Chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
www.caring.com/
www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
5/18/12 10:55 A

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That looks interesting but I have not tried it. I looked it up on webMD and it either helped people or made them sick. Seemed like about 50/50 by the reviews. Most recommended a lower dose or to take it just once a day.

I have been very busy the last couple days. Now it it catching up to me. My arms are burning really bad and I had to drag myself out of bed when my puppy (Abbie) wanted out.

Mark
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5/14/12 4:07 P

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From Fatigued to Fantastic! by Jacob Teitelbaum, M.D. advises using ribose for fibromyalgia fatigue. Has anyone tried that? I thought it was helping me have more energy. But after 2 weeks I am having low energy again.

And apparently there are clinics following this treatment method. I live in Connecticut and there is a center in Stamford, CT. that is well over an hour from me / But they do phone conferences with a doctor. Has anyone participated in this?

Thanks, Chris

GOAL: Reduce A1C,BP,tryglicerides,and weight. HOW? By not eating added sugar, using Omega3s, base meals on veggies, water aerobics at least 3X week and using NuStep when I can't get to the pool.

CAREGIVER SUPPORT PLEASE SEE THESE LINKS:
www.caring.com/
www.agingcare.com/

30 lbs. gone. Now to work on the next 10 lbs.


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5/10/12 12:16 P

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Joined the Gym here in Ridgecrest yesterday. Mom and Dad are all ready members there so I got a discount and they get credit for a new member referral. Was only able to work out for a short time after going through all the sign up stuff before they were ready to go. I think with the gym and with walking Abbie every day I well be getting some good exercise now.

Mark
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5/9/12 4:27 P

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We love newbies!! Welcome!!

Welcome back to you too, Mark! I understand what you are doing,, my mom is now in assisted living,, I am sure they really appreciate what you are doing. What a great son!
I hope my DD loves me enough to make the right decision when it is needed.


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5/9/12 11:52 A

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Welcome to the team and to Sparks. Feel free to ask any question you might have. Join in to the chats.

Mark
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5/9/12 12:22 A

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Hi I am knew to this site and fairly new to Fibromyalgia as well. I was diagnosed at the start of the year. It was a relief to finally know what was causing my problems. Still trying to figure out what works and what doesnt.

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5/7/12 9:42 A

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I am Back. I moved to my parents house to help take care of them. So far this seems to be a good move.

Mark
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5/4/12 11:59 A

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I stated last year that I could no longer afford to go to my rheumatologist, had to go off my Rx. meds that were not generic. I was in constant pain since then. I finally was able to go to my family doc and her prescribed the generic forms of the fibro med regimen that the specialist did.. I am doing much better, have even made a habit to walk many miles in the trails with DD.
The meds double-duty for my severe arthritis too.
It is very true that everybody needs to cut a pattern for themselves, and sew it to fit their needs.

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5/1/12 5:33 P

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Thanks for the advice GIRANIMAL, I will try that tonight!

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5/1/12 4:37 P

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LOTUS_532 -- sorry this isn't in time for your exam (I hope you made it and rocked it!) but sometimes, oddly enough, an old-school hot bath with Epsom salts or a moist heat pack is the only thing that will dull the pain (by loosening the muscles) enough to get me functioning.

~*~
Angie
~*~


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4/30/12 12:46 P

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I am struggling a lot today with my pain. I was able to force myself out of bed but my back hurts so bad that it hurts to sit or stand. I have an exam at 3 today and I am trying to study but the pain is definitely affecting my ability to focus. Any pointers?

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4/26/12 8:14 P

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Hi I'm new to the group, but not the disease. At age 8 I was diagnosed with Lupus SLE, and have managed fairly well to keep a normal lifestyle - but within the past few years I have developed fibro as well, and that has caused me to limit my activity, and gain way too much weight. With achy pain, ontop of lupus fatique and joint damage, I've notice a couch potato type of life has started, with some munchies by my side. SOOOO not good! So I set a goal, and have started 15 minutes of walking each day - even on the most painful days 15 minutes can be pushed through. And munchies have disappeared. Little changes, slow and steady, like the turtle not the hare!

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4/18/12 4:24 P

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Ack, I think it is! It's been awhile, thankfully, but I have gotten headaches so bad that my scalp would hurt, like when you've had your hair in a too-tight ponytail for hours. emoticon Hope you're feeling better now!

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4/13/12 6:31 P

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ooh-ooh, is it possible for your hair to hurt? Bad fibro fight day.. darned rainy weather,,

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4/9/12 3:54 P

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Glad you had fun! I'm back and ready to Spark!

Martha
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4/6/12 12:03 P

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Hope you have a great time in Aruba Martha.

My fibro did okay on our scuba trip. Because most were boat dives, there was lots less effort put out getting in and out of the water, especially the boat where we turned around from our seat and fell over the edge of the boat. The long flight to Hawaii is what caused the most problems, but I got through it. I tried to do some stretching when I got out of my seat for the restroom.




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3/29/12 12:06 A

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I'm off to Aruba for 10 days. Take care of each other!

Martha
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3/27/12 10:50 A

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That is great that you have more energy and able to do more. I push myself on things like that and then I suffer afterwards but feel that it is often worth it.

Mark
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3/26/12 2:59 P

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Yes, my CA has Vit D, and I take senior centrum equivalent.. that has all of the other trace minerals and stuff I need,, I am in the process of purging mercury from my system this month and next. I started taking chlorella.. when it is finished next month, that will be done. I do not feel as sluggish, I have noticed that..
the 7-keto has boosted my metabolism somewhat so far,, this is the start of the third week on it..

DD and I have started taking long hikes in the marsh a few miles from here... I would never have done that before,, the nice weather helps..

Raw spinach has alot of natural CA... you can even toss a handful in your smoothies.. you cannot taste it,, I also put flax seed in my smoothies..

we are all the same, but also different in ways,, we have to try things to see what is effective for US.. everybody here has so many great ideas and experiences.. It has changed my life...

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3/26/12 10:21 A

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Wow, the Calcium is one that I never thought of as causing a problem. I take it because of my Ankylosing Spondylitis and because i am on Prednisone. And I also take 1000mg per day. One thing about it though. My Rheumatologist told me to get one that combines Calcium, Vitamin D, Magnesium and Zinc. They are all needed to make the others work.

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3/25/12 2:20 P

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Yes Pickie, she is going to have me take 500mg of calcium instead of 1000mg daily. I am also going to work on increasing my dark green vegetable intake, so I get the natural calcium there.

I also noticed that when I put my shoes on this morning to go to the gym, my heels were not hurting like they have been, so I am guessing whatever is causing that is getting back to normal levels.

My fibro was acting up really bad last night in my hips and arms. I was probably in and out of sleep for 3 hours, after which I got up and did some gentle stretching and drank a bunch of water. I have to do what I can to minimize that from happening with the flight on Thursday. As we all know, fibro can have a very fine line between not enough and too much.

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3/25/12 6:51 A

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Thank you for that info CT.. could you split your calcium tabs,, take half a day instead of whole? So far, it sounds like your doc has it planned for your body to cooperate with your meds.. hope it all comes together so you can finally do that study!!

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3/25/12 1:20 A

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Well, I got rejected for the d-ribose study because a couple of my bloodwork numbers were too high: uric acid, creatinine, and calcium. I sent the results to my primary care doctor, and she is concerned about the numbers that corrolate to kidney function, but she wants me to make sure I drink plenty of water (especially the week before I do the blood draw), and very limited use of my robaxin (because that is the only medication I currently take that is filtered through the kidneys). We will do a retest in a month.

The calcium number I think is that I overdosed on it since I have been taking it daily since August. I was having gut upset (nauseated feeling) and my aching was getting worse. When the aching kept getting worse despite efforts in other ways. After doing some research, I found out that calcium and vitamin D overdose can both cause those side effects, and also that calcium numbers can go out of range if there is too much vitamin D in your system. Within 2 days of stopping the calcium tablets, I was feeling great relief. My doctor wants me to take some calcium, so I will start with 1 tablet daily after returning from our trip the beginning of April.

Once we get the numbers back to normal, I will try the d-ribose on my own. I wanted to let everybody here know that we have to be careful even with over-the-counter supplementation, because that can cause overdose/side effects just as bad as prescription items.

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3/20/12 3:02 P

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I think it is wonderful that you have such a good doctor. The one I have now is also really good. They seem to be hard to find. It is very important that the doctors keep in contact with each other. It always surprises me when my primary doctor all ready knows what I talked to my Rheumatologist about and the results of any the appointments.

Mark
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3/20/12 2:31 P

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Kerry, you are lucky to have found her! I will bet that she is very organized too. People like that tend to think things out ahead and try to organize things into a pattern. Kind of like a mechanic or accountant. They want to see how thing work together. She sounds like a keeper!!!

My family doc is the same way. I had an appt. with him yesterday.. I had a bag of all my meds, supplements with me and he very patiently asked me what they were for, how long I was taking them,etc. HE also re-ordered my anti-inflammtory, pain med, told me to take a half pain pill so I did not go zombie like I do with any pain med.
HE is very appreciative of me insisting that the specialists send copies of EVERYTHING they do, to him. Two of them tried to tell me that since THEY ordered the tests(MRI, cat scans, labs,etc) that they are THEIR information. I informed each and every one of them that I am paying them for a service and all of that info is owned by me FIRST. If they choose not to share with my family doc as I request, I will go to another specialist. SO far, every single one of them has complied.
My doc supported me in trying my new supplements for boosted metabolism, mercury purging form my system.
My BP is down, cholesterol too..

I am not due for more labs until May,, unless something happens,, happy happy.. hope the pain management helps.

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3/20/12 2:30 P

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WILWOMAN, the rheumatologist you saw sounds like the typical type. I got to the point that on my first visit I would ask if they believed in Fibromyalgia and treat it as well as my other problems. I finally after three attempts found one that did and he has been wonderful.

I have been laid out with the sinus infection which then turned into and ear nose throat infection and has now turned into pneumonia. The last three weeks have not been very fun.

Mark
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3/19/12 10:16 A

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Are there pain management doctors where you live? I started seeing one in the summer and among other things she takes the info from the other doctors and seems to tie everything together. One thing I have noticed in the past is that the multiple physicians I see seem to work against each other like they are competing where she does not do that.

My life tomorrow will be the result of my attitudes and the choices I make today.




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3/19/12 9:21 A

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My doc said I have fibro but I have other rheumatological conditions going on. A lot of my blood work is abnormal (ANA pos, Weak RA pos and now my immunoglobulins are out of whack. Thank goodness my new Neurologist ran these test because the Rheumy my PCP sent me too totally blew me off and did not even run any test on me. Said you have fibro just go home and take Tylenol. No bedside manner at all! My response too him was why would I take Tylenol when my PCP already has me on Hydrocodone. Needless to say I am never going back to him again. My pain level is not too bad today although I have Asthmatic bronchitis so I am not feeling too well. Hope to kick this soon so I can get off of the oral steroids. They have made me gain about 7 lbs in 2-3 days! oh well this too shall pass. Hope everyone has a great day!

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3/13/12 3:27 P

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1grnthmb, antibiotics should never make one feel dizzy,, those small four spaces in the front of our head are like gyros: any fluids or whatever in one and not in another, throws us off balance, not to mention our ears, when that fluid drains to unknown territories!!LOL!
If you were taking a drying agent or another med for that, I would say that could be it.. drink lots of water, let that fluid thin out..picture your sinuses with jello-like stuff in them,, drinking water keeps the fluid thinner since our body temp dries the fluid out slightly..

I started taking white kidney bean extract(for carb metabolism); chlorella (for purging mercury out of my system); and 7 keto for metabolism. all supplements, I just started them last night, so will see what happens ,, giving it all a month or two.. I have a doc appt. March 19, he is very flexible with my choices and I will abide by his decision.. Dr.Oz had to do lots of talking to get me to do this. I researched all of it online,,,

another supplement that he endorses is bacopa. Our health food store never heard of it, Puritans Pride has it with another substance that I am not familiar with. so I did not order that.. Bacopa has been used for hundreds of years as a memory enhancer. It is supposed to improve ones' memory.. not sure if or when I would take this,, I am more concerned about the above issues.. as long as my car knows the way back and forth from work and church, stores and hospital, I will bow out on that one, but disallow it. Any input??


Edited by: PICKIE98 at: 3/13/2012 (15:29)
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3/6/12 7:43 P

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Hi, Been feeling very dizzy. I do not know if it is from the antibiotics I am taking for a sinus infection or from the sinus infection itself.

Mark
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