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RCDC829's Photo RCDC829 SparkPoints: (1,132)
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1/9/12 12:38 P

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Good afternoon! I wanted to run this by you. I went to the dr on Friday. He doesn't believe fibromyalgia is a real thing. Well he said he believes some people actually do have fibro but that alot of times it is misdiagnosed and when the dr doesn't know he just says that's what it is. He also told me that he believes i have an issue with my bile duct. I had my gallbladder removed a few years ago and I have started having some serious stomach problems within the last year or so. Have you EVER heard of such a thing?

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AZGERRY1's Photo AZGERRY1 Posts: 13
1/4/12 11:22 P

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I have a new lease on life (at 70), after 12 years of severe chronic pain, fatigue, brain fog, sleep problems, poor balance, you all know the list. I seriously thought I had MS, was happy to find it was "JUST" fibro. I did get significant help from a chiropractor for some of the pain, bit more than that, I learned from him that de-acidifying my body would really help the pain - and it has.

I am hoping that someone else has worked on alkalizing their body, there is no spark team for that, but I need ideas, recipes, and discussions.

For me, this involved eating foods that are gluten-free, low glycemic index, and vegetarian. There are charts of foods that are acidifying and foods that are alkalizing, and animal proteins are acidifying. And here I thought chicken was so good for me. (beef is worse)

This has been a complete change in the way I view "diet." I don't eat to lose weight, and yet I have lost almost 30 pounds since last summer. They say that the fat that I have been carting around may have been my body's way of protecting vital organs from a toxic body. sadly, it's also why there is fat in the arteries.

Does anyone know anyone else who is working on this? And fibro friends, I encourage you to do some research; me, I feel like a new person. Before this, I was just waiting around until my time would come. Now I have energy, and am almost pain-free (most days without pain meds). Let me know (SparkMail) if you are going to try this approach, or if it is something that already has reduced your symptoms, and if you would be interested in partnering with me on this.

RCDC829's Photo RCDC829 SparkPoints: (1,132)
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1/4/12 5:26 P

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Thank you all very much. I don't sleep like I should and I guess I'm just going to have to accept that this is real. I have seen a neurologist, a rheumotologist and of course my primary care dr. All they want to do is give me pills and more pills. The neurologist was great and he's the one that ordered the mri on my brain to rule out MS. I don't like all of the medicine and especially the tramadol. I can only imagine what it is doing to my kidneys. I have an appointment with a new doctor on Friday which is an internal medicine dr. I called and got the appointment when I was at home one day in serious pain because I ran out of pain medicine. I don't want to be dependent upon those. The appointment clerk said he will see me as a new patient but only with a complete physical first. Ok!! Great!! I want somebody to do that. My gyno said my dhea and testosterone levels are extremely low and the sleep study dr said my iron level is low (but when I gave blood for a blood drive last Fri she told me it was good) . I've been taking the thyroid medication for about 4 years now. The same one. My dr checked it last year sometime and said it's level now. I take th Cymbalta for pain. I tried Lyrica and Savella and they made me crazy! The Lyrica was the worst. This is so frustrating and I don't have a clue what to do. I'm praying hard that the new dr will have some answers. Before this FM hit I was very active and about 20 pounds lighter :( I can't exercise now, I have zero energy. I know first hand that exercise gives you more energy but it seems that it is seriously impossible to do anything right now. I come close to dozing off at traffic lights. That's awful!! I need to eat right and I try but I don't feel like cooking most of the time. I feel like a horrible wife, daughter and employee. God has put some wonderful people in my life, especially my wonderful husband, and I don't want to let him down. My father passed away a year ago and I don't go visit my mom like I should and I feel bad about that! Grrrr!! I'm so sorry ladies to ramble on like this but whoooooo........it feels good to ramble!!! Especially when nobody around me "hears" me. Thank you all again.

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1/4/12 4:50 P

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You got a lot of good advice. Just remember you are not alone. Keep trying new things and asking for help.

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JAMER123's Photo JAMER123 SparkPoints: (226,049)
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1/4/12 3:27 P

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Good advice narrative, Susie. The fatigue is one of the major factor we have to work around. i you need to, use the sleep aids available to you. Trial and error is what needs to be done to find the right medications for each of us individually. What works for one may not work for another. Also, if your are going to a family practice Dr., ask for a referral to a neurologist as they can work with the nerve activity of FM. You may be trialed on a totally different med. Good luck in getting regulated.

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.

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ANNAELIZA's Photo ANNAELIZA SparkPoints: (1,951)
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1/4/12 2:37 P

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My suggestions might be ones you have heard before but they may bear repeating.

Please ask your pharmacist to review your meds. Since you have a thyroid problem your metabolism can be a factor in effectiveness. You may also have the diminishing effect of one med interferring with another. Thyroid meds are very tricky and on some people the generic is almost useless. Do you take Cymbalta for pain or for depression? It is very possible that the anti depressant aspects of this drug is actually dragging you down. Ask if the dosage is too heavy or if you need to take it every day.

How do you spend your week ends? Do you try to catch up on housework, entertaining or special projects because you felt miserable all week? We all do this and with FM it doesn't matter if you are young or older. Try to schedule less doing and a little more down time and remember to pace yourself. And, more importantly; ask for help with chores that aggravate muscles and tendons. If you have energy through the week use it sparingly and rest frequently.

How about the TV and Computer? Your brain needs quiet time to calm down before bed. The screens on both stay fixed in the senses for several minutes after turn off and it postpones refreshing sleep.

Next, be sure you have enough Vitamin D and B-12. Both these vitamins are absoption agents and are extremely important to nerves. And look into magnesium and malic acid. Epsom salts baths are a good relaxing way to get magnesium if your doctor says it is OK.

Fibromyalgia is a phantom condition to the medical world but it is very real to those who have it. You must be ready, willing and able to plead your own case and be the one who actually identifies what works and what doesn't.

Family problems, personal problems and job worries that cause stress need to be looked at and conforted because no prescription in the world is going to hold off Fibro until stress is controlled. So look into doing positive things for yourself and find out what's out there that isn't necessarily pharmacy.

Hope this helps. God Bless. Susie





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SARAHTAIT's Photo SARAHTAIT Posts: 26,163
1/4/12 2:18 P

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My doctor prescribed nuvigil which is a loger lasting form of provigil...a medication that the military uses for fatigue. It helps a lot but I must admit that it makes me really more tired the following day if I don't continue to take it.
Are you on vitamins? B12 sublingual can help fatigue also. Hang in there...fatigue is part of the wonderful fibromyalgia experience and you must be sure to get as much sleep as possible. People with fibro seem to require more sleep than normal folk.
Hugs,
Sarah

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CINDERRELIC's Photo CINDERRELIC Posts: 7,621
1/4/12 2:02 P

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Chronic tiredness can be the symptom of something minor or major and should not be ignored. Do ask your doctor about the tiredness. One thing you probably need to ask about is a blood panel test to make sure leukemia is not factoring in. It is doubtful, but it is the safe approach. My DH was extremely tired and did have leukemia and they kept misdiagnosing it. He was on a thyroid medication, too, that mimmicks the symptoms of leukemia so they let it go over a month after they found it thinking it might be the thyroid medication, which is not that unusual, so you might want to check the side effects of your thyroid medication. Without the test with some thyroid meds you can't tell which it is.

And then of course, most likely, it is a symptom of FM which makes this condition even more frustrating because you don't know for sure without the tests what is causing your symptoms and if it is "just the FM", as if that isn't enough, or something else that needs looking after.

Some people have tried D-ribose and say that helps with fatigue, others have tried exercising more, still others have received benefits from homeopathic herbs. However, the most benefit to me is being sure that I get my 8 hours of sleep which sometimes requires a little extra help from medication and when needed getting rest (with eyes closed) during the day. Those of us with FM just can't seem to keep goingfrom morning til night without it or we wind up in a major flare. We have to recharge more frequently than others.

Edited by: CINDERRELIC at: 1/4/2012 (14:41)
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RCDC829's Photo RCDC829 SparkPoints: (1,132)
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1/4/12 1:05 P

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Hello everybody! I have been fighting this stuff for close to a year now and I'm tired. Seriously tired. I've been thru the ringer and so has my bank account. Sleep study, mri on my brain, blood, blood and more blood, prescriptions that I get and cannot tolerate once I have paid for them, And now the tiredness is so bad that I can hardly keep my eyes open and work Mon-Fri 8:30 to 5. It seems once I finally get off work and head home and attempt to cook dinner (which is rare lately) and iron and shower and all of that fun stuff that it's 11 pm already. I got married 2 years ago, my father passed away last year and I just cannot find a solution to making everything go and hurt and be tired all of the time. Currently I take cymbalta, gabapentin (for hip and leg pain), levothyroxine for thyroid, prilosec and about 4 tramadol each day. Any suggestions?

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