Fibromyaligia??

Updated on February 05, 2013
K.F. asks from Hyattsville, MD
17 answers

Has anyone on here been diagnosed with fibromyaligia? How is it diagnosed? I have pains on and off, sometimes so bad that I can't get out of bed and also anxiety here and there, and tired all the time. So I went to a new doctor yesterday and he says he def. thinks it's fibromyaligia. But everything I've looked up about this condition seems so "general" for lack of better terms.
Thanks!

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So What Happened?

Thanks for all the good ideas!! My dr. is actually sending me to a specialist to see what he can do and what more he can tell me. My diet is alreay pretty good, we eat very rarely and are a totally organic family! I excercize twice a day already, and believe me I push my way through it, but it does seem to help stretch out my muscles and such. So we will see!! I still feel like it's just something they tell you you have b/c they can't find anything else wrong with you, but we shall see :)

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K.R.

answers from Washington DC on

You might want to go and see a rheumatologist or even a pain specialist, so they can run diagnostic tests to rule out other conditions that might be causing the pain. There might be something else going on and maybe it truly is fibromyalgia. Counseling could also be helpful with the anxiety or maybe even depression that can cause physical pain... Good luck to you!

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A.B.

answers from Charlottesville on

K.,
I have two friends who were diagnosed with it. One has been very proactive in taking care of herself and finding what works and what doesn't. For the one that is proactive, the doctor recommended to stop eating potatoes,tomatoes, and wheat b/c of inflamation. She is active again and has very few headaches and pains. My other friend who has not changed her diet, continues to struggle although she has been told of the changes of this other person. The doctor also recommended iron, a super B vitamin and calcium + vitamin D. If you are eating a healthy diet rich in fruits and veggies and a little meat, you should not need too many more vitamins. She does take a Tylenol pm occassionally as needed but not very often. She cleans houses so it is on a day that she does too much. But her color has come back and she looks really good. So, I just say try what she has done b/c it has really made a difference just from what I have seen and it didn't cost $1000's of dollars in medical bills. They cannot do anything for you anyway when it comes to fibromyaligia anyway! A.

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C.A.

answers from Washington DC on

Fibromyalgia is a general syndrome with no specific cause, officially speaking. From what I've observed, FM seems to be a combination of mental stress and dietary deficiency, especially in women who put themselves last. The official diagnosis is usually an evaluation of 18 tender points (Google "fibromyalgia tender points"); if you are tender in at least a couple of those points, you get the diagnosis.

I have several of these tender points myself, but I refuse to accept a FM diagnosis. Instead, I take care of myself with a combination of exercise (as often I feel up to it), improved nutrition, acupuncture, and calming practices including meditation, massage, and Reiki. It sounds like a lot, but I do a little at a time whenever I can. My energy levels and emotional state have greatly increased and some of those tender points have disappeared.

For me, "improved nutrition" has meant two things: changing what I eat, and filling in the gaps with nutritional supplements. I've been taking a Shaklee product called Vitalizer which provides vitamins & minerals, omegas, and probiotics. Last week I started a new liquid supplement called Vivix which contains natural compounds known to promote cellular repair. Now my physical and mental energies are so high I barely recognize myself. I'm not jittery, mind you, just able to do what I want to do without wondering if I'll run out of steam halfway through.

If you want me to explain any of these options better, just let me know.

C.

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J.F.

answers from Richmond on

Dear K.,
How's your raw fruit and vegetable intake?
From everything that I have read, fibromyalgia has everything to do with a lack of dietary enzymes from raw foods.
Dr. Humbart Santillo, Naturopath and Master Herbalist, in his book, 'Food Enzymes: The Missing Link to Radiant Health', talks about how a depletion of enzymes, naturally occuring in raw foods can lead to the tissue/muscle diseases of fibromyalgia, lupus and multiple schelrosis.
I would recommend his book by that title. (Find it by going to any bookstore and asking for this ISBN number: 0-934252-40-8.)
I would also recommend the book, 'Natural Choices for Fibromyalgia: Discover Your Personal Method for Pain Relief' by Dr. Jane Oelke. (Find it in any bookstore by referring to this ISBN number: 0-###-###-####-0-0.
Also, try increasing your daily intake of fruits and vegetables to the US Govt. recommended 7-13 servings a day. If you can't do that, I can offer you the next best thing, Juice Plus+ (17 fruits and vegetables in capsules, chewables and gummies, backed by 13 medical-journaled research studies). Read Dr. Oelke's recommendation of Juice Plus+ in her (previously mentioned) fibromyalgia book, pages 92-94. Also, learn more by logging onto my website at www.jpjenn.com. If you are interested, my contact info is on the website. You can also contact me at ____@____.com.
Blessings!
J. F.

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K.S.

answers from Washington DC on

i dont know too much about it but my mom has it. i think its one of those things where they rule everything else out first, then call it fibromyalgia...like pcos...its the same way. there might be a blood test of sorts they can do, i cant remember. as for treatment try researching something homeopathic. you can find things to ease the comfort. you will probably have to do a few different things to treat the various symptoms, as there is no magic pill. i do beleive i heard something about a pill in the works. keep up w/ research and bug your dr and/or find one that specializes in this disorder. hope this helps some.

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A.M.

answers from Washington DC on

Hi,
The symptoms are very "general", but I have read that a cluster of symptoms is used for a diagnosis. See if you can find this on-line or in a health-related book.

You may want to consider acupuncture whatever the diagnosis as it can be very helpful for many types of pain. Go on-line to the Maryland Acupuncture Society or Acupuncture Society of Va.. The website will give you names, addresses and phone numbers /zipcodes to find a practitioner near you. Good luck!

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L.M.

answers from Washington DC on

K.,
I have several friends who have this condition. It is real and a challange to find someone who knows it well. There is a blood test. I have also worked with many people in my holistic healing practice with fibromyalgia with good results.
I can say that sleep is a big component, as well as a clean diet. That means limiting the amount of processed foods, sugars, animal products and dairy. Eating plenty of fresh whole foods, fruits, veggies, whole grains. Also acupuncture has been proven to work very well.
The wholistic approaches with some allopathic meds are a wonderful combination.
Please feel free to contact me if you want more info., referrals to good practitioners near you or have other questions.
L.

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T.R.

answers from Washington DC on

I too was diagnosed with Fibromyaligia Pain through my Nurologist doctor who gave me an EMG test. This test is a bit painful because of the shock waves that enter through the body to the nerves. I too constantly experience pain in my lower back, legs, toe and the touch of the skin surface. Some mornings it is very difficult for me to get out of bed, but I have to start my day early in order to get up. You may first want to get tested to see if this is what you really have before they start placing you on various medication.

KaTrina R.

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W.J.

answers from Roanoke on

I was diagnosed with Fibromyalgia right before I started college 11 years ago after years of being told I had arthritis. The first thing I want to say is that fibromyalgia is a real thing that causes real pain. Don't let anyone make you feel like it's in your head or that it is caused by something you are or aren't doing or eating. However, it can be managed very well by working out and trying to get more sleep. People who have fibromyalgia struggle to sleep well, but that is the single most important thing for us. Getting more sleep helps our bodies to re-charge and heal over night. One thing that helps me is to take a brisk walk every day and to go to bed early. Going to bed early is frustrating for me because I feel like my mind is still running around, so I try to focus my thoughts on only one thing (like focusing on my breathing or singing the same line of a song over and over again) until my mind finally calms down. If I start this earlier than I will eventually fall asleep, and usually fall asleep earlier than I do when I try to stay up later to wear myself out. While I still have some sort of pain every day it's not bad, and most days I don't even think about having fibromyalgia. Be patient with yourself because when you first start working out it'll seem like it's worse, but just cut back a little. Don't Stop! Cut back until you feel invigorated by it, and then slowly add more to it.

I hope you are able to feel better soon.

Melynda

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K.R.

answers from Washington DC on

Hi, K.,
I been working with Melaleuca for nearly three years. A group of folks with fibromyalgia developed a recommended course of treatment based on Melaleuca's vitamins and fish oils, to relieve the pain, fatigue and depression which can go along with it.

We can talk further if you are interested. I give regular web presentations where we can disuss your questions. Let me know if you want to check this out and see if it gives you relief.

take care,
K.

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A.B.

answers from Washington DC on

Not sure if you're in your late 30s early 40s, but I am. Recently went for tons of blood tests for joint pain. Ruled out arthritis, lupus, etc. All negative results, praise the Lord; but, left me wondering if I was crazy. A friend, who's in her 50s, told me that pain is not unusual in your 40s. Just your body's way of letting you know you're aging. I could have saved over $100 in co-pays had my drs. just looked at my dob. Irony is I have 4-year-old and 9-year-old, who have tons of energy and don't understand why mom is moving slower and slower and is always forgetting things. Folks have warned me that memory loss is typical of motherhood regardless of age, but I beg to differ. Tips: I've recently tried swimming and working out, lightly, which has relieved some of the aches. I am also trying to schedule a real nap time. I have noticed that I feel refreshed after a nap. I now remember my parents needing more naps in their late 30s and early 40s. Also, not sure if you've been checked for anemia, but a good multivitamin in addition to some B12 might help. Plus cutting back on meat or eating smaller quantities or lighter meals. See if that helps any. If you are younger than age 35, then I would still try these suggestions but start a journal and see if you have too much activity going on. You are a single mom with a very young, energetic son. It's not surprising you'd be tired and you spend time with your 3-year-old goddaughter. You're working, too? I'm tired just thinking about your schedule. If you own a single-family home and/or townhome and manage all of that space on your own, then it could be that you're just exhausted and that's also normal. Attending PTA meetings, daycare meetings, birthday parties, family events, etc. and working full-time can wear out anyone.

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R.B.

answers from Norfolk on

I was diagnosed in 2003. What a blessing to have a name! I highly recommend this site: http://www.fmpartnership.org/. they have so much good information from both doctors and patients.

Another good source that is more general is the American Chronic Pain Association at http://www.theacpa.org/. They have some great resources for both patients and family members about how to deal with chronic pain. They also have some fibro links. Oh, and a great local support group that meets once a month.

Good luck!

-R.

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K.W.

answers from Richmond on

I wasn't diagnosed with it, but my father was. It took almost a year to get that diagnosis. They kept sending him to get tested for various diseases like rocky mountain spotted fever & lyme disease, etc. They FINALLY settled on the fibromyalgia 6 months ago and started treating it by prescribing arthritis drugs. I know that it's in the arthritis family & I THINK (all my research is 6 months old so its a little fuzzy in my brain) its related to rheumatoid arthritis in some way, but it effects the muscles instead of the joints.

Good luck

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L.T.

answers from Danville on

I have been diagnosed with fibromyalgia since 2006 but now that I think about it I think I have had it longer. I go to a chiropractor, I try to walk everyday, I have been taken cymbalta since diagnosis now they have a new drug Lyrica, I try to make sure I get plenty of rest and I am a single mom of a 12 year old daughter. I have family and friends that are supportive. Also make sure I take a multivitamin and eat healthy.

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B.S.

answers from Washington DC on

I was diagnosed with fibromyalgia at the ripe old age of 22. After many tests, and trips to the rheumatologist, gynocologist and PCP, I was told this is a diagnosis they give when they can't explain any logical reason for your pain. You're right, it's a general diagnosis and not very reassuring, it seems to be linked to depression, anxiety or in my case, out of whack hormones(which can cause the latter) all of which mess with your sleep pattern. You're basically not sleeping deep enough to give the muscles their rest which causes the pain and that is why they prescribe the anti depressants, in the hopes that they'll help you sleep. Before you begin a bunch of meds or costly physical therapy, I would definatly look into your anxiety issues, starting a light exercise routine and getting some "me time". Have you spoken to your doctor about testing your hormone levels? Luckily, it is something that can go away - don't listen to people who treat this like a death sentence- it did for me, I'm 26 now and haven't had symptoms in 3 years. Turns out my hormone levels were crazy because of ovarian cysts, and irregular periods once they figured that out I was able to stop the sleep aides, anti depressants and move on with life. Chances are there's something else happening with you, make the doctors work for you and figure out what that is. Good luck to you, I hope this helps. Please contact me if I can offer any more advice.

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R.D.

answers from San Francisco on

Hi my name is R.' and yes I was diagnosed with fibromyalgia a few years ago,, and believe me if u have it there's no questioning it,,,, but there are different levels of it,,as it was explained to me
Mild,moderate, and server and in my case off the ricture scale. It is hard to diagnose because it has all the signs of other arthritis ( RA,,,OA ) it's very trickey. It's diagnosed by tender points ( there are 18 of them ) through out the body as well as other areas of concern, i would say that it depends on how accurate your doctor is with your examination ,, my doc listens to me when I tell him something is not rite and he takes my pain my feelings and my concerns into consideration, so make sure you and your doctor are on the same page when it comes to your health,0especially when dealing with a disease as complicated as Fibromyalgia. Best thing for is to keep doing Tory own research and talk as well as ask your doctor questions. I hope my info had helped alittle bit and may God Bless

Updated

Hi my name is R.' and yes I was diagnosed with fibromyalgia a few years ago,, and believe me if u have it there's no questioning it,,,, but there are different levels of it,,as it was explained to me
Mild,moderate, and server and in my case off the ricture scale. It is hard to diagnose because it has all the signs of other arthritis ( RA,,,OA ) it's very trickey. It's diagnosed by tender points ( there are 18 of them ) through out the body as well as other areas of concern, i would say that it depends on how accurate your doctor is with your examination ,, my doc listens to me when I tell him something is not rite and he takes my pain my feelings and my concerns into consideration, so make sure you and your doctor are on the same page when it comes to your health,especially when dealing with a disease as complicated as Fibromyalgia. Best thing for you is to keep doing your own research and talk as well as ask your doctor questions. I hope my info has helped alittle bit and may God Bless

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