Fibromyalgia - Broadway, NC

Hi A.
I'm starting with a new medication called SAVELLA I just stared taking it and it works for me,
But this is my second medication I also take TRAMADOL also called ULTRAM this is a pain killer it is NOT a narcotic but it can make you a little lupy at the begining.
I take tramadol like is air I cann't funtion with out it
this is an illness that you have to take some thing for pain, there is no OH IT'LL PASS I JUST NEED TO LAY DOWN
not for fibromyalgia
the pain never goes away on its own, so take something for pain, I also take something for depression: LUMICTAL, it also helps, but this is mainly to fix my depression,wich I had way before fibromyalgia.
I'm a 30 year old mom of a 8 year old beatiful girl and I,like you was diagnosed right after she was born.

I hope this helps
L. S

I don't believe in fibromyalgia. I was diagnosed with it also many years ago. The pain and numbness was caused by Celiac's Disease. Once I went on a gluten-free diet all my symptoms went away. Fibromyalgia muscle pain is caused by vitamin dificencies, particularly vitamin D. As Celiac's, we don't absorb nutrients well and suffer from a myriad of malnutrition problems. I follow a gf diet and take vitamin D, iron, and sublingual B-12 in addition to a multivitamin. As a result, I'm pain free and drug free after many years of suffering.

The best way to get dianosed is to find a GI specialist who knows something about Celiac's Disease and knows the proper testing. The blood tests are notorious for false negatives. The intestinal biopsy is a good follow up.

I am sorry you have so much pain at such a young age. It must be especially difficult with all your responsibilities of parenthood.

I just want to give you some encouragement. My younger daughter had "fibromyalgia" and "chronic fatigue" and a host of other problems that essentially meant the doctors do not know what the actual biological problem is, so are giving labels based on the obvious symptoms (i.e. pain, fatigue, etc.)

But we eventually did find that by addressing dietary issues, gut issues, sleep issues, nutritional issues, mitochondrial issues, and hormonal issues all these symptoms were alleviated. It was a hard long road, but now at 21 years old (yes, it started VERY young for her) she feels better than she has... well... ever in her life. So there is a lot of hope that this will not be permanent.

My daughter is on a gluten, dairy, etc.-free diet. Was treated for Candida overgrowth (had extensive antibiotic use as a young child), uses supplements at night that help with sleep (http://itsnotmental.blogspot.com/2008/07/sleep-critical-y..., and uses supplements enhancing mitochondrial function, takes vitamin D3, multi-nutrional vitamin supplents, fish oil, etc.

Yes, it is a lot, but it gave her her life back.

Now, at least, there is a glimmer of hope that maybe someday SHE can be a Mommy.

I am so sorry for your pain. Have you tried getting in touch with Mayo clinic in Fla? They may have some meds that will help. So many times, the birth of a child can trigger some terrible problems physically.

Hi A.,
Just wondering if you've been tested for celiac's disease. It's a gluten allergy from eating food with wheat in it. I had almost the same types of symptoms after the birth of my daughter and thought I may have had the same diseases. Leg pain and numbness, intestional issues, sleeplessness/insomnia, weight gain, swelling in my joints, etc. A friend suggested I stop eating gluten for two weeks and before those two weeks were over ALL of my symptoms were gone! Apparently you can develop this intolerance after a major surgery or a major physical change-such as pregnancy. I know it's different for everyone but it may be that you've developed an intolerance to the protein gluten. Just a thought.
As far as handling the pain, when I was dealing with the daily pain I would take my girls swimming at the YMCA, swimming was a great activity that didn't cause too much pain. My prayers are with you. But,if you haven't already, research celiacs..you may be surprised. :)
Nikki

A., I work in the health industry; I have seen lots of women helped with proper nutrtion and detoxing their homes of harsh chemicals.

It is the place to start - not with drugs. Always start with the non obtrusive. I have friends that are in total remission of a fibro diagnosis with just good vitamins (and there are not a lot out there), antioxidants and getting rid of toxins. Quality is a huge factor - For example, there is more antioxidant protection in grape juice than in a $40 bottle of MonaVie. :(

I can send you some testimonies if you would like.

JoyBoudreau
www.joyboudreau.com

I was diagnosed with fibromyalgia right before my son was born 10 years ago. I understand having to deal with the pain and fatigue along with a full-time job and kids.

I know it sounds crazy, but what worked for me is an exercise routine. I've been able to totally stop the meds (and the pounds they piled onto me). I only get the pain bad now when I don't work out. I started out easy with tai chi and light weight lifting with a pbs show called Body Electric. After a few years I was able to hike and do yoga and a full aerobic workout too. When you work out, it forces your body to create the chemical you need to repair your muscle, that's the same chemical that relieves pain and which people with fibro don't create enough of on their own. You might find working out helps you deal with the stress too.

I'm sure it's different for everyone, but that's what worked for me -- I hated taking the meds. The other thing I had to do was quit a job that had me working nights, I found out that was leading to bad sleep and more pain. I still get the fibro exhaustion and numbness sometimes, but have a lot less pain and more control when I can work out. Some people see a physical therapist too to give suggestions about exercises to help get started.

Good luck, I know it's a miserable time. Please e-mail if I can help with anything else I've learned about fibro.

There is a natural supplement that a friend of mine has taken for this and gotten good results. Message me if you are interested and I can get you the info. M.

my sister contracted this after:

facial reconstruction surgeon passed MONO onto her during the surgery which affected an epstein barre mutation on some chromosome, dev'd not into epstein barre but chronic fatigue and fibro which went undiagnosed for YEARS bc it hadn't been named/validified as an actual illness or accepted by the medical community - especially MALE dr's.

She's had it for almost 20 years now. The thing that helped her the most was getting a magnetic mattress, and wearing the magnetic bracelets. I know it sounds weird and I have no understanding of WHY....I just know it worked for her. In no way did it cure her, but it did help lessen some of the pain when nothing else did.

She still did BEST when she slept ALOT and was under no stress. Any type of stress and any lack of sleep caused massive flare ups. Typically it evidenced as unbearable skin pain - she felt like her skin was on fire and couldn't bear to be touched or touch anything - even to wear clothes.

You have my utmost sympathies. My suggestion would be to find a specialist if there is such a thing yet (I know alot of dr's still are very skeptical and think it's all in a woman's head). Also, given what my sister when through, I don't see any way you could expect to continue working, given the stress level that holding a job carries, much less that of a teacher (both my parents were teachers). I hope I'm wrong about that. If it's anything like my sister's fibro, my suggestion would include a sabbatical (medical leave), a specialist, or even making changes in order to become a SAHM so you don't have the stress and can rest more.

Good Luck!!!

Have you seen a rheumatologist? That is who I went to when I was having pains throughout my body. I would get a second opinion since no one else had come up with the same diagnosis.

I have heard that a baby aspirin and a magnesium pill taken daily should really help with the migraines. I used to take them and did not have a migraine at all. Also, find out what your migraine triggers are....stress is one as you mentioned but there are several which you can google online. For me I found out that I cannot have the green granny smith apples! Who knew?? Also, the sun, if it reflects at all in my eyes, I get one. Try to do your own research and learn a little more about your conditions. Go to a neurologist too if you have not seen one, they can help with the migraines. There are now shots you can take so you don't get one. You can also maybe get on a daily pill to prevent them. I can't imagine how horrible these issues are, you really should keep pushing and researching to get some help. Good luck

A.,
I know that things are rough right now. I cannot offer advice on the fibromyalgia but on the migraine end I can. I have suffered with migraines since I was young. I had a doctor that told me to do a headache/food diary. Everyday I wrote down everything that went into my mouth, food, drink, candy,gum. Even if it was a handful of nuts or M&M'S. I could definetly link my headaches to chocolate, aged cheese and wine. I never drank a lot of wine or any other alcoholic beverage because they make me sick (spend the day close to the bathroom) Maybe you have food triggers to things that bring on the migraines,or make them worse. God Bless and Good Luck!

A.,

I was diagnosed with fibromyalgia at 25 by my family doctor. I do not believe in such a diagnosis and refused to believe it and still do to this day. In my opinion it's a diagnosis that is given when no one has a clue what is wrong with you. I work in healthcare and fibromyalgia is a disease that is stereotyped with prescription drug abusers. Most people that take care of patients with this "illness" brush them off as lazy, drug seeking, people. With that said, I do believe you have the symptoms you say you are having because I too had those symptoms. I'm now 31 and don't have any pain, fatigue, or other problems. I changed my diet, lost weight, and began to excercise even though it hurt really bad. I refused to be labeled something. The bad thing with fibromyalgia is that when you are labeled with that illness and you see a doctor they just give you more medicines to help you COPE not help you get over it. YOU have to be the one to do that. All medicines will do is help you COPE. If you want this to be resolved then you have to get up, even when it hurts, and make yourself do. You are 28 years old and you should be able to do anything physical activity moderation with fibromyalgia. Don't let fibromyalgia limit your life. You need to refuse to let the doctors lable you with it, change your diet, make yourself excercise and overcome this battle. Others will tell you that they have suffered with it their whole lives. That's because they settled with COPING rather than getting over the illness and beating it. Don't cope, make yourself get beyond it to a better life. There are some integrative medical doctors that do acupuncture and massage therapy that should help you too. I'm not sure what area you live in but check with your local hospital and see if they have a integrative medical doctor that could see you and do alternative treatments instead of taking medication. I hope I didn't offend you because I really believe that you are in pain and hurt. I know you think you now have an "illness" to identify what's wrong with you but no matter what your physicians say - it is a label that you will have and in healthcare, it's sad to say, but it's not a good label as I mention. Good luck.

I have found the most help for my issues from seeing a Naturopathic Physician, an ND. The first thing one would do would be to put you on an anti-inflammatory diet - eliminate wheat/gluten, and lots of other foods that cause issues in some people. It might seem crazy at first, but it has given real relief to people. They have so many other natural treatments to help the body heal itself, without drugs. You can find one at naturopathic.org. I started going to one because of unexplained weight gain, infertility, polycystic ovaries syndrome, fatigue, etc. Now, I've just had a baby (yeah!) and feel so much better! All without drugs.

I went to a seminar last week where a former Miss America had the same problems. She went to all whole foods and all natural and organic body products. Check out the website www.emg.org to find out what is in the current products you are probably using. BY changing your diet and body care products you can probably help your condition. I would also take a look at the products you are using on your whole family. You will be shocked!!!

I'm so sorry to hear of your pain. I highly suggest that you look into natural therapies and try to go see a chiropractor that is part of the Maximized Living network - fibromyaliga can sometimes respond wonderfully to that sort of treatment and I've heard of people who were able to get off medication completely and feel SO much better. Good luck...

Several of my friends have the same disease and have tried everything. I found a wonder juice called MonaVie. They have several levels, but the Active has worked wonders for my friends. It is 80.00, deliverd, for 2 bottles, and that will last you about a month. Well worth the investment. You would know in less than 10 days if it is helping you or not. www.monavie.com
Good luck and God bless!

LATE EDIT: Check out "Allergy elimination" on-line. I don't know much about it, but I've seen some very chronically sick people become very healthy using this process.
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Continue with your computer research and do as much research as you can. Check the higher quality sites and the lesser quality sites. Check as many links as possible and read as many blogs as possible. Get a true global perspective.
Meanwhile, eat healthy, take vitamins, reduce your stress.
Work with a psychotherapist to learn how to distance yourself from the stress at work so it doesn't control your body.
Try yoga or ask your doctor for physical therapy even though you are still having pain so you don't get too deconditioned.
Only use medical practitioners who believe in the diagnosis.
Good luck!