Coping With Fibromyalgia-CFS

I have fibromyalgia-cfs. If anyone else out there has this and has any ideas on making daily living, ie; chores, etc. easier and less taxing on the body, please share. I have days where I'm in so much pain it's hard to even take a shower. My hands hurt so much just holding a tooth brush hurts. So any ideas would be appreciated and if anyone else has this and wants someone to 'complain' to, send me an email.

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Valery from NJ

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October 13, 20050 found this helpful

hi hon, I also have that Devil. Day my Day. I do know what you are going through. Bless you . You can contact me at cinnamon44c @ yahoo.com (remove spaces) Maybe we can talk some . Debra

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October 13, 20050 found this helpful

Hi! I feel for you. My last bad bout, I was in bed for almost six months wishing I'd just die. Good news though I've beat it and seldom have a flare up anymore. Those flare ups only occur when I don't do what I know I have to. My husband is thrilled to have his wife back!! I'm almost 52 years old and feel better most of the time than I have in 25 years.

Before, I can advise you and tell you what I did; I need to know more information about you. 1. Are you a woman? Most of us with this DEVILl are!! 2. Are you on Hormone Replacement Therapy? I'll have other questions if you e-mail me! Or if you prefer to speak on the telephone I'll give you my phone number when you contact me by e-mail. I know typing is often difficult because of the pain!

My e-mail address is ChrstmasCarol @ yahoo . com (remove the spaces) (without the "i" in Christmas is correct). I'll be happy to tell you more when we can do so without too much delay. As well as anyone else who reads this who wants to know what I did. Carol

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October 13, 20050 found this helpful

I've had this for 19 years. Here's some of things I've done to help myself:

- Cut my work back to part-time

- Make sure I get enough sleep. I always hurt more when I don't have enough sleep.

- Walk daily.

- Take ibuprofen when I start to feel a flare up coming on. Seems like if I get ahead of the flare I can stave it off.

- Try to avoid a lot of stress.

- Have cut out almost all caffeine as it messes up my sleep and also makes my legs twitchy.

- Try to move around a lot during the day alternating positions. Seems to help with the pain.

- Try to find interesting, fun things to do as it takes my mind off pain and makes me less of a complainer.

- I try not to talk or focus on it too much as it seems to hurt worse when I do.

Just be patient and very tolerant of yourself. Don't push yourself to hard but do stay as active as possible. Best wishes to you!

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October 13, 20050 found this helpful

I have had fibromyalgia for 18 years (since 1987). It was so bad that some days I couldn't get out of bed or if I did I could hardly move. It hurt so bad that I once told my husband to call Dr. Korvorkian. He was not amused. My doctor put me on a low dose of antidepressant, not for my state of mind but he told me that fibromyalgia didn't respond to regular pain medicine and they found that the antipressants worked. I had to take four different ones before I found one that I could tolerate. I also took MSM and Magnesium maleate and I had a full body massage once a week (sometimes twice a week). Those things in combination helped somewhat but I would still get flare up quite often. A year and a half ago I saw a doctor who was a medical doctor but for the last 12 years or so has been doing holistic and natural healing. She had me start taking a vitamin and mineral supplement.

It costs me about a hundred dollars a month, but I no longer have to get weekly massages and at $60.00 a pop that alone saves me $240. I also don't have to spend money on the MSM and Magnesiun Maleate, and I was taking 5 pills of Elavil each evening and now I only take 2. I also don't have to take any vitamins because my Medical Doctor checked the ingredients in the supplements and he said that they contain everything I need. So, I'm spending about $100.00 per month but I'm still saving about $200.00 and I feel sooo much better. I had not been upstairs in my house in over five years and now I don't have any problem. You can't buy this stuff at WalMart or the health food store, you have to get it from a dealer. I don't know if I'm allowed to give out the name on this site but if you e-mail me I'll give you more info. I promise I won't try to sell you anything, I'll just give you info and then you can follow up or not. I became a dealer just so that I could get a discount. My husband also takes it and his blood pressure has gone down and his feet and legs don't swell up as much. Anyway, my e-mail address is: margarett @ juno . com. Remove spaces. Good luck!!

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October 13, 20050 found this helpful

I have it and RA too. Good days and bad. I agree that if you can walk any at all it helps. Even if it is around the outside of your house. The main thing is to keep trying. I gave up for years and was mostly bedfast but then had a remission and managed to get to walking. Right now I am in a flare but with more than just the fibro.The most important thing is to get enough sleep and try to reduce the stress. Anyone can contact me at aliceann29 @ yahoo.com

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October 14, 20050 found this helpful

You guys are so wonderful. I never expected such a great response. I'm also sorry you all have this nasty devil living in you as I do. I will write to each of you. A little at a time. I've not used the computer much for a few days since my hands hurt so much. Today they feel a little better and I don't want to mess it up. This weather change is really a bear to cope with. Thank you all again. You are all truly angels. Valery

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October 14, 20050 found this helpful

Hello, I can feel for your pain as I too have this problem. I stumbled on some relief quite by accident as also have Lupus and arthritis. I was told to try a product call Lakota so I bought the roll on form of this product. It is so easy to use and has given me hours of relief. One day I had so much pain from the fibromylgia in my arms I decided to try it on my arms. What a relief I felt when it actually worked on this too. It is worth a try, although it may not work the same on everyone. Good Luck!!!!!

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October 14, 20050 found this helpful

My sister-in-law has been diagnosed with this also. I mentioned this to a dear friend who is the office manager of a physician. She told me that this doctor always recommends a certain book to his new patients who have this illness. She said many of those patients have used many of the suggestions in the book and have gotten relief. I ordered the book recently (on Amazon.com) for my sister-in-law. I'm not sure if she has read it yet or made any attempt to try new things. I just try to be supportive and not critical. It seems to me to be worth a try. The name of the book is "Reversing Fibromyalgia" by Joe M. Elrod. My wish is that all of you suffering from this disease get relief. Don't give up!

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October 15, 20050 found this helpful

I'm 48 and have had Fibromyalgia since I was a child. It has a tendency to run in families, and more often in females. I've always pushed myself to work, so I could have a somewhat normal life, but it really isn't normal because of the limitations. I've worked for various doctors for 20 years, and here are a few things I've found that help me (everyone is different).

--Cut out as much white/processed food as possible (Breads, pastas, bagels, pretzels, etc.)

--Avoid all sugars. This is extremely hard to do, as the body seems to crave them.

--Eat high protein meals. For some reason, protein helps this condition.

--Stay away from caffeine and nicotine. They are toxic to your body, especially with this condition.

--Never over exert yourself. If you do, you'll pay for it later.

--Get as much rest as possible. I don't say sleep, because as this condition progresses, it will affect sleep patterns adversely.

--Take time to relax and destress.

--As someone else said, massages help tremendously, but are expensive.

--I soak in a tub, filled with hot water and epsom salts to draw soreness out. Hot showers also help, though not as much as a bath.

--Take a good supplement, along with EXTRA calcium and magnesium. Just because a multiple vitamin has the recommended amount of these minerals, doesn't mean that your particular body's needs are being met. Calcium helps muscles contract, but magnesium helps muscles relax--they must be taken in a 2:1 ratio. Few individual's bodies properly absorb these minerals, and people with fibromyalgia have a greater need than normal.

--Get some sun, 15-20 minutes daily, if possible, WITHOUT SUNBLOCK. It will help with the depression.

--Eat properly. I know that if I skip my vitamins or a meal, I can really tell the difference.

--Get a GOOD vibrator, not a cheap one. Use it regularly to relieve pain and muscle spasms/knots. Run it on the soles of your feet too (reflexology) to help remove toxins from your body. You'll be surprised at how good this feels.

--Use anti-inflamatories when needed, but as little as possible. They are medications, and there can be serious side effects. There will be periods when you can go without them.

--DO NOT allow any doctor to over-medicate you. I've had some that have tried to put me on medications that were too strong. They also effect the quality of your life. While they may take some pain away, they also insulate you from experiencing the joys of life.

--Do not be afraid to take antidepressants if needed, they may help you through a rough period, just be cautious.

--Live as normal a life as possible and do not give into the pain. It will try to take over and run your life. Remember, stages pass--you will go through bad times, but there will be many good ones too.

--Find something you enjoy and can do (it really doesn't matter how good you are at it). This takes your mind off the problems and renews your spirit. Even in bed, you can read a great book, crochet, quilt, etc.

--Get out as much as possible. It helps retain normalcy in your life, gets you fresh air, exercise, and makes you feel that you are still a part of life.

--Maintain a routine whenever possible. The body functions much better on one, and it helps your family know what they can count on.

I know there are lots more small things that have big impact that I've forgotten, but I hope these help someone. Diet and attitude make a big difference in fighting this condition. Remember, you are not alone. Good luck.

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October 15, 20050 found this helpful

I also have fibro and was disabled for 6 months back in 93. The only thing that broke that bad spell was hydrotherapy. The first month felt like nothing good was happening, then I realized I wasn't in constant pain. I take ambien, lowest dose, to get the sleep i need, 1 celebrex a day and have altered the way i do things to lessen strain. I live in jersey too. p torpey @ hotmail. com drop me a line on a good day. Thanks to all who posted, nice to know I'm not alone!!

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October 16, 20050 found this helpful

I know about this disease too and would like to receive an e-mail from you Valery. My e-mail is dottylewis @ sbcglobal.net (remove spaces)

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October 17, 20050 found this helpful

Oh my gosh! I am so thrilled with all you wonderful gals that wrote. Though I am sad you all suffer as I do. I have made new friends here. Thank you all. I have known I'm not alone with this disease, but to be able to write and talk to others is so very helpful. I really dislike being home all day. But when I think of what it takes for me to just get up, shower and dress, well that's can feel like a full days work sometimes. Today I feel terrible. I know the weather change affects me and probably most of us with fibro/cfs. It's hard for me since I also have such bad hot flashes ( such a silly name for it don't you think) and as soon as start moving around they get worse. If it's too warm in the house I end up too hot. When the hot flashes/sweating are bad, most of the time, I feel like I'm being suffocated. I have to dress so I can strip layers off. It's exhausting too. But I try, and I am not very successful, to tell myself that , You wake up every morning and are able to get out of bed. Count your blessings. Boy can it be hard. Now I have all you wonderful people to also add to my blessings. Thanks to you all. Be well, hug gently.

Val

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October 19, 20050 found this helpful

Hello and I too have Fibromyalsia. My doctor ordered a sleep study for me and found that I also have sleep apnea. (you stop breathing while you sleep) he told me that this is a common thing when people have Fibro. He put me on a Cpap machine which forces air down your throat. I hate the dang thing but I do feel more energized in the morning and in less pain because I sleep better. I am able to maintain a part time job but I am also going through menopause and i sympathize with the woman who also was having hot flashes and night sweats. It gets lonely out here sometimes feeling like I am the "ONLY ONE" who have this disease. My family really does not understand. Thank you for letting me sound off and I hope you all have "Flare Free Days" ahead.

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October 19, 20050 found this helpful

If any of you would like us to start a Fibromyalgia group for you, we can do that. Just let me know through the contact form. One of you would need keep an eye on it for us but we can get it going for you.

Susan from ThriftyFun

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February 28, 20070 found this helpful

I'm a FM/CFS/ME sufferer (going into my 29th year). I'm also the founder of FM/CFS/ME Resources. We are working towards solving the FM/CFS/ME puzzle by investigating these diseases in their entirety. Our hope is to find a cause, which will point to a cure, thereby eradicating these illnesses completely.

Information is now being collected from FM/CFS/ME patients worldwide. We invite you to help us in our endeavor by taking our survey. We have two locations for our survey:

http://fmcfsme.bravehost.com/survey.html

http://www.geocities.com/mistysc_2000/survey.html

I'd like to invite you to visit us at FM/CFS/ME Resources. We offer the following:

* Doctor Search

* Disability FAQ's

* Private Forum

* FM/CFS/ME Awareness

* Coping with FM/CFS/ME

* FM/CFS/ME Survey

* Resources for FM/CFS/ME

* Support Group Listings Worldwide

Thank You Again For All Your Help,

Misty Roberts

Patient & Founder

FM/CFS/ME Resources

http://fmcfsme.bravehost.com/

Editor's Note: When I clicked on the link for the survey, a multilevel marketing site came up. Just close that window and you will see the survey behind it.

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March 29, 20090 found this helpful

I don't have any other ideas besides those the other ladies have listed. They were great.

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