Needing Information

Hi C.,
I was diagnosed with fibro when I was 16 (20 years ago) and it was still pretty unheard of at the time. Everyone in my life has been supportive from the beginning. My fibro now is not nearly as painful as it was 15 years ago. I try to exercise on a regular basis, which helps. I also switched to a sleep number bed about 10 years ago and that helped more than anything else. Just relieving the stress and being able to get into a deep sleep helps with relaxing and rebuilding the muscles. I was on amitryptaline (sp?) for many years which also helped a lot. Right now, I am able to feel pretty good medicine free. Good luck to you! It will be fine!

Please discuss sleep with your doctor. I started taking Amitriptyline at bedtime about 5 years ago and it totally changed my life. Fibromyalgia symptoms and depression symtoms lessened significantly. I encourage all women to discuss sleep issues with their physician.

My mom was just diagnosed with this also. I think it will really help for you to do as much research on the disease as possible so you can better understand it and what you can do to cope. Take a trip to the local library and search online, talk with your doctor and get all the info you can. This is a very real diagnosis. My mom was in excrutiating pain many days with no known cause until she found out she had this. She also felt like you that people wouldn't give credit to her for a real medical concern, but this has not been the case. There is much more research being done on this disease and people are generally understanding. She has been on Cymbalta for a couple weeks and has seen great improvement. She was on an anit-depressant and anti-anxiety med before the diagnosis and now with the Cymbalta added, she has finally gotten relief and had been able to lower dosages of other medications. She is weaning off her pain medicine too-which is percoset and very strong. There is hope and I wish you the best in finding out what will help you. Just don't give up and keep looking for answers until you get some relief of the fibromyalgia pain. I kept encouraging my mom to seek help and am glad that I did because she just has a whole new attitude these days. Best of luck.

I do not know much about fibromyalgia...but I bet it feels good to at least have an explanation as to why you're feeling the way you do. Nothing is worse than having an ailment and having no idea what's causing it.

I personally would hold off on telling anyone until all the tests are conclusive. If someone asks...maybe just say "they think it's fibromyalgia but they're waiting on test results." That way if it turns out it's not for sure that...you don't look like you have a different disease every day. you know.

I did have a neighbor who had it and she used to go get acupuncture. She said it helped...didn't totally alleviate the symptoms, but it did help some.

Good luck!

Hi! My daughter, Mary, told me about your question and asked me to respond.
In my case, I felt like I was going crazy before my diagnosis. For eight years I had pain with no apparent reason, chronic migraines and although I'd sleep for 8-10 hours a night (at least), I'd wake up feeling like I'd been hit and run over by a fleet of Mack trucks. I had a couple of sleep apnea tests (mild, non-obstructive), and no other cause for my pain. Well, there was a bulging disk, but it was within normal limits, possible bursitis... And there it sat for eight years, being treated with narcotics for pain, migraine medication and sleeping pills. I was going to a pain clinic where I was being prescribed morphine for pain. When I began getting more and more depressed, they added pills for that, too. When my weight spun wildly out of control (to almost 400 pounds), that was blamed for my pain. When diet and liquid meal replacement didn't help, I got gastric bypass surgery. That didn't help, either. Finally my insurance changed and my husband encouraged me to change clinics. There I saw an rheumatologist and mentioned that a friend on AOL told me my symptoms sounded to her like Fibromyalgia. He told me he didn't believe in Fibro, but referred me to Mayo Clinic in Rochester, MN for an exam. I thank God that he did! I went there with four folders full of the previous three years' medical records. The doctor sat in the exam room going over them with me and examined me, including the trender point test. That day I had 15 of the 18 points. He looked me in the eye and said I was a text book case and wondered why I hadn't been diagnosed sooner. I think it's because my previous doctors didn't believe in Fibro, either. I was so relieved to finally have a name for my symptoms! Yes, I know there are doctors who don't believe Fibro; I had an appointment with a doctor who doesn't believe in Fibro. But that's changing every day. It wasn't so long ago that people didn't believe in diabetes, autism, lupus and MS. It takes time to change people's minds.
The most important things you need to remember to making your life easier and more pain-free are: get enough sleep, don't over-do it and reduce the stress in your life. I know, you sound like me: Yeah, right. A friend of mine on one of my Facebook Fibro support groups recommended taking a calcium citrate with magnesium and vitamin D supplement before bedtime to help with sleep. I've never slept better since I've been taking it and I only take half the recommended dose! I no longer take a sleeping pill, either. Even when I have insomnia I feel better rested than I used to since I've been taking this. I don't know if it's the only reason, but I can't think of any other reason. I also take Lyrica and Savella. The Lyrica has helped with some of the symptoms; I don't get as much of the achiness and random pain like I used to. The Savella seems to be helping with the burning, numbness and tingling, but I've only been taking it for about two weeks. I took Cymbalta for three months and gained 40 pounds. I lost 15 when I stopped and started Lyrica. I've gained five back since I've been on the Lyrica. It makes me mad because I was only 15 pounds from my goal weight, now I'm 45 away.
I still take narcotics for pain, but I have other pain issues as well (degenerative joint and disk disease, some sort of sacrum issue). I'm taking Oxycodone now and my mind is much clearer than it was. The memory issues, or "fibro fog," I think are the most frustrating. At 45 I should be able to remember something that happened yesterday, two days ago or something someone asked me two hours ago, right?
I'm sure this is a lot more information that you expected or wanted, but I know I had a hard time finding much information when I first started looking. I view it as a mixed bag: it's not something I would ask for if I were shopping for a disease, but it's better than some things I could have. I'm just thankful I don't have something fatal (choosing to think positive).
No, this isn't curable and the symptoms are barely treatable. It's very difficult to have something the experts don't even agree on. We need to be pioneers and educate our family, friends, the general public and even our doctors about Fibromyalgia, even as we live with it. And we DO live with it! People with Fibro work, run marathons, have babies and lead relatively normal lives. It's just harder to do it now, that's all. But it's still worth it. Feel free to e-mail with any questions. As you can see, I tend to get kinda chatty ;)

I would highly recommend reading up as much as possible on fibromyalgia. There's a little controversy about it currently because it is so difficult to diagnose. But, having been through a serious health issue myself recently, it is a relief to finally have a diagnosis and a path to treatment.

In my case (cancer), I had no problem telling people what was going on - even before I knew my diagnosis. In my opinion, you never know who may be going through the same thing and be able to help. It led me to an expert in my kind of cancer, and I believe I received the highest level of treatment.

My other reason was that I knew my appearance and temperament were going to possibly change. And, they did. I lost almost all my hair and wore a wig because I had a very public job at the time. I wanted people to understand why I may not be myself, but it's a very personal decision.

Here are some credible sources of information for you if it is, in fact, fibromyalgia.
https://health.google.com/health/ref/Fibromyalgia
http://www.mayoclinic.com/health/fibromyalgia/DS00079
http://www.nlm.nih.gov/medlineplus/ency/article/000427.htm
http://www.webmd.com/fibromyalgia/default.htm

After doctoring with allopathic medicine my entire life, I never thought I would ever not trust a doctor. Ten years ago, I had my daughter. Starting after her birth I began getting progressively sicker as every year passed. High blood pressure, allergies, asthma, high cholesterol, atophic dermatitis, Seasonal Affective Disorder, Raynaud's phenomenon, arthritis, possibly Ehler-Danos and Sjorgens. Then, at the age of 40, I got horribly sick in Feb 2008. So sick, in fact, that my allopathic doctor didn't know what was wrong with me, coudn't answer my questions, and couldn't help me get better. Rather than handing me off to a specialist or giving my care into another doctor's hands, he DUMPED me. Yes, you heard that right. My doctor of 10 years dumped me.

It was the best thing he ever did, because it forced me to take a hand in my own health. In effect, his dumping me saved both my life and the lives of my husband and daughter.

How is that? Because we soon discovered after we started using alternative medicine that all three of us suffer from a genetic mutation that doesn't allow our bodies to detox or metabolize correctly. Because we can't use food/nutrition correctly, we have severe malabsorption and our bodies are suffering from lack of certain key nutrients. That lack is what has been leading to all of us not only suffering from colds and fllus, but also the chronic illnesses we've been coming down with.

Our subsequent "tests" from the naturopathic doctor showed severe heavy metal toxicity; severe depletion of several key nutrients; in mine and my husband's case we have severe casein allergy and severe soy and gluten intolerance--my daughter has mild gluten intolerance; I have discovered that I have adrenal fatigue and am missing several key nutrients in detoxing, antioxidants, and the immune system. All it takes is having food/nutritional problems you don't know about and your entire system gets completely and totally out of whack.

I also read an article today that stated 59% of the world's population of adults is severely lacking in Vitamin D3 and that without Vitamin D3 we have most of the chronic diseases we see nowadays. Cancer, heart disease, diabetes, MS, Lupus, SAD, etc.,--all of these illnesses are, in large part, caused because of inadequate levels of Vitamin D3.

I urge you to do some of your own reading. The womentowomen.com Web site has some wonderful information for women and how to address all different sorts of health problems (made better by lifestyle changes, to include eating organic, getting away from processed foods, and using nutritional supplements to erase nutritional deficiencies). Other sites with loads of info on all natural living include mercola.com and naturalnews.com.

Most people want the government to take care of them and their health. Unfortunately, the government and big business are only interested in one thing: profit/money. They really don't care about you and your health. Do some reading and investigating with an open mind and looking at all sides of the issue. If they cared, then why are babies being born with over 300 known toxins already in their cord blood? If they cared, then why do we have to fight so hard to have organic food and no antibiotics in our meat and clean water to drink? Why are the fish poisoned with mercury and displaying four fins and both sex organs? Why are we told we have to take pharmaceutical drugs and get vaccinations when whole, natural foods have been around for millennium--a far longer period of time than drugs? Why are we NOT given a voice when these big issues come up for vote? And why is it that it takes literally hundreds of thousands of protests against something before a bill can be stopped--when it should only take a general outcry from the public?

I didn't stop to look, see, and question until two years ago. Now that I have and I know the true state of our world, it scares me. But I'm going to keep on fighting, because I have a young daughter who has to live in this world after I pass on. I want to do what I can to help her have, hopefully, a better world to live in. One in which she still has the freedom to choose what she wants to do to and put into her body.

I truly thought before I went to see the naturopathic doctor that I had Lupus, or chronic fatigue, or even fibromyalgia. And, in truth, I might have been coming down with one of them. But, after changing my nutrition/eating habits, my symptoms of arthritis and fatigue--actually, almost all of my symptoms and aches and pains--have been going away. There is something to be said for consuming raw and fresh organic food. I'm glad to be where I am now--on the road to recovery.

I've been diagnosed with fibro, too, C., so I do feel for you. My diagnosis came about seventeen years ago, and it seems to me that the general understanding and acceptance of this disorder has increased even since then. So, with those who can support you, I would not hesitate to share your tentative diagnosis. I would agree with the advice to wait, though, to be generally open about it until you have a "final" diagnosis, just because people may not understand the process of elimination that this diagnosis entails.

I was so miserable with my health situation that about fifteen years ago, I decided to take charge of making it better. I instituted a variety of changes including exercise (even tho it wasn't pleasant; starting small - even just walking! - and working faithfully at increasing what I do), regular chiropractic care, massage, and a supplement program. These things have made a huge difference for me in my pain and energy levels. If you'd like more details about the supplements I use, feel free to send me a private message.

You're in my thoughts and prayers.
Blessings,
A.

so sorry to hear about your challenge. If you want, I can email you some info from friends who have gone the natural route with success (Prescription meds have so many side effects). I will say up front that they use many Shaklee products (which I market) and have changed their lifestyle as much as possible. Let me know if you would like the info - I'd be happy to share.

Don't worry about what everyone else thinks, just do what it takes for you to feel better and live as full a life as possible!
Hugs,
K.
You may contact me through my website: http://K..myshaklee.com

If you're in the Milwaukee area, please make an appt with Dr. Matt Frahm with Maximized Living on Capitol Dr. in Brookfield. He's a phenominal holistic chiropractor who focuses on finding out why we have the symptoms we have and helping our body to function the way it should. I know he can help you and help you get off some of the meds. Here's his website to checkout and I know he's having a customer appreciation day coming up where he'll do an exam and xrays for free. maximizedlivingdrfrahm.com. Email me privately with any questions!

you have a lot of great info here. One thing that has helped me A LOT is a fish oil supplement.

I urge you to contact Nutritional Weight & Wellness. They can counsel you on very effective foods/diet changes to make that can help with autoimmune type diseases. http://www.weightandwellness.com/ Start by perusing their website, then schedule a private consultation. (No, I do not work for them. I just know they help a lot of people)

my mother has fibramyaglia. she takes methodone for the pain, and she does just fine. keep your head up high and take one day at a time and u will by alright.

Dear C.
Fibro is difficult to diagnose so it will be nice in the sense of actually getting a diagnosis finally. My friend with Fibro had said the same thing...felt like she was crazy with all the issues. When you are ready to feel better, let me know and I will assist you in dealing with this autoimmune disease.
May God guide you,
L.
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I was diagnosed with RA 4 months after my son was born (about 2 years ago now) when I was 33. It is a scary diagnosis and it took me about 8 months to come to terms with it.

My best advice is to research your diagnosis as much as possible, and give it some time to sink in. Life is more challenging & painful with a chronic illness like this, but you will find your inner strength to make it through. And be sure to talk to your doctor about finding the right meds to control your pain & discomfort and ask your family for help if you need it (ie...a nap, extra time to get ready, ect). My RA is under control with the right combo of drugs, and I have a few bad days a month, which I have learned to cope with over time.

Best of luck to you! Please feel free to contact me directly if you like.

Hi Mom...
I am a Physical Therapist and a Reflexologist.
I often meet people with this diagnosis and can understand fully why it leads to mixed feelings. In my experience, the diagnosis should be the last thing you focus on. Focusing on the areas of your life which might need attention seems to be the best approach i.e. nutrition, healthy thoughts, forms of exercise, and bodywork. There is soooo much out there to consider...none are a quick fix. Consider alternatives like Qigong (has helped many women with same exact diagnosis)or Gentle Yoga . If your area offers bodywork like Reflexology or Reiki these too can put you on the healing path and give you some control. You ultimately can change the pattern and progression of this disease. Keep an open mind...the opportunities to heal are out there!!!!

I wouldn't be happy with that diagnoses at all. I've been told by many of my doctor's that it is a catch all. Meaning if they think there truely is something wrong with you but they don't know what you get that diagnoses. I guess something is better than nothing. But personally because of insurance I don't want a catch all diagnoses. That means it's a pre-existing condition and they aren't sure what it is.

Although Arthritis was one in it's day... but now they know it is lots of things. Or rather lots of things can cause joint pain.

Hi C..
I was once diagnosed with Lupus in my early twenties only to have them be incorrect-- turns out just too much elastin together with restless leg.
Getting a diagnosis only provides information-- however it can cost an arm and leg in insurance later on so I'd caution you on that as I'm also a medical professional.
I'm also a wellness coach. I saw someone refer you to wellness people-- there are good things you can use that are natural that help with fibromyalsia symptoms.
I have a client who wrote a great letter-- I'll email it to you if you want to read it. Yes-- I am affiliated with a nutrition line-- and if you want more information, I can get that to you. One lady said for the first time she was able to go for a walk pain free with her husband after using just one product-- you never know. I became affiliated with them as the products relieve my restless leg symptoms so I don't have to use medication-- along with many other reasons now I won't go into.
My email is ____@____.com If you do write-- put momsource in the subject line.
I am on call for my medical career from Monday for the following week and my kids are off school-- so a bit busy and I'll email as soon as my schedule permits.
I do know there are great options out there. Don't concern yourself with what others think!!

About me: 49 yo perfusionist, wellness coach also doing a nationwide online biggest loser for up to $599- next one starts Apr. 6. , wife, mom with 8 yo twin girls.

B. J

Just wanted to throw this out there, my sister in law was diagnosed with fibro 6 years ago as time went on she felt it just wasn't fibro. Turned out she had Lyme disease and had it for 6 years untreated. I always thought Lyme disease was no big deal, course of antibiotics and you are fine. Well seeing how my sister in law has suffered, Lyme disease can be bad and much harder to treat then most doctors know. Not trying to diagnose you but Lyme disease is so overlooked. Three people in my neighborhood have suffered from it. She had a western blot test i believe to confirm the diagnoses which is more accurate than the Elisa test. She also sees a specialist in Fond du lac, WI for Lymes. At that time she was dignose with Fibro, there was no test to confirm it just ruling out all other possiblilites. People told her to be careful with that diagnoses because unless that is an actually test to confirm the dignoses, it COULD be something else. Not that you don't have it or that you are not suffering but that it could be something else.
Also my mother in law has Lymes and was first diagnosed with Gout, then RA and when we knew there was no way she had either and pushed her to get more testing, then she was diagnosed with Lymes.
Good Luck with whatever the diagnoses is!

Hello C.,
I am sorry that you are going through this tough time. I have two girls, after my second I noticed that I had some anxiety issues. My head would start spinning, I would get short and crabby with my kids. I also had many other things going on, I am a normal, very healthy person. So for me to be going through some issues, was not normal for me. I read the symptoms for estrogen dominance (which are listed below) and noticed that I had 10 of the symptoms for estrogen dominance. I am currently using a natural progesterone cream. Our own bodies create progesterone, as we get older our progesterone decreases. Estrogen dominance is very common nowadays with our current environment.

Here is a website to help you: www.johnleemd.com

THIS INFO IS SOMETHING EVERY WOMAN SHOULD KNOW!!!!

You can make up your own mind if it is a fit for you. It is safe and easy to use! There are thousands of testimonials on the health benefits of natural progesterone.

I have loads of information on lupus, fibromylagia, and other symptoms that I can email to you, just let me know!

HERE ARE THE SYMPTOMS:
PMS
Fibromyalgia
Osteoporosis
Dry eyes and mouth
Irregular periods
Sleep disturbances
Hot flashes
Lack of concentration
Vaginal dryness
Dry-thin-wrinkly skin
Fibrocystic breasts
Bone mineral loss
Depression
Thyroid Synthroid
Menopause
Water retention
Loss of sex drive
Unexplained weight gain
Mood swings
Irritability
Uterine fibroids
Fatigue
Bi-Polar personality
Inability to handle stress
Early miscarriage Infertility

Trouble becoming pregnant or carrying a baby to term
Breast, uterine, or ovarian cancer
Lactating
Migraine headaches
PMS or irregular periods (teenage or adult women)

Thanks for giving me the opportunity to help you!
C., if you or anyone else would like to contact me, I would be happy to help you further!!
L. Pasley

My mom was diagnosed a couple years ago, and I'm a little afraid that I may have it too. I don't know a lot about it myself, but I do know there are a lot of other sufferers out there; don't feel you're going through this alone, and don't let anyone tell you it's "all in your head"! I'm seeing an endocrinologist next week and having some tests done, and don't really know much at this point in time, but if you want you can feel free to email or message me; I'd be more than happy to talk or to get you in contact with my mom, she's a member of several fibromyalgia support groups and would likely be an excellent source of information for you. I really hope everything goes well for you!

Links from my mom's facebook page:

Amy Jill's Fibrochicks & Roosters (support group for people with 'invisible illnesses' like Fibro and Lupus)
http://www.facebook.com/group.php?gid=305351718506

Fibromyalgia Duck Travels - I actually don't quite understand this one. It appears to use rubber duckies to raise awareness about Fibro?
http://www.facebook.com/group.php?gid=113079464439

Christian support group for Fibromyalgia sufferers - I don't know your religion, but this is apparently a religion-based support group
http://www.facebook.com/group.php?gid=96979233180

National Fibromyalgia Association's official facebook page
http://www.facebook.com/fmaware

Best of luck to you! Hope any of this helps, and please, do feel free to send me a message!