Fibromyalgia - Austin,MN

One question. Are you on Depo-Provera? It has been linked to fibromyalgia. My fibromyalgia went away after I got off Depo.

I have been diagnosed. So has my mother

I have been tested for everything under the sun, lupus, RA, celiac, you name it. Both my doctor and I insisted on that before "settling" for the fibro diagnosis. I have almost every symptom. I remember sitting at the computer a few years ago before being diagnosed and reading it and saying "yes, this is what I have". I have never found that with any other disorder.

I can offer you TONS of advice. Too much to list here. PM me if interested. I stay away from night shade foods (tomatoes, etc). If you read up on fibro, you will see most of us have problems with those foods. You may be one of the lucky ones! I love tomatoes =(

My mother and I both suffer from terrible headaches from the fibro. Hers were debilitating migraines that kept her bed-ridden for days. She and I both have the sensitivity to certain smells, foods and medications

In my experience, nothing helps the fibro pain like mucinex. Yes, the mucus drug. Do your research on this. I was thrilled for this option as I had read too many worrisome stories about cymbalta.

The best advice I can give is to STAY POSITIVE - it was really hard for me to receive this diagnosis because it felt as if I had no control. At least if I had diabetes or something I could control it, to an extent. Really, for fibro, it is hard to control. But I was also relieved it wasn't something life-threatening. I had stomach issues so bad I thought it could be crohns, or worse. Nope, just IBS associated with this wonderful fibro! And do not let ANYONE tell you this is all in your head or that fibro is "just from stress". Talk with some good doctors and you will learn that couldn't be further from the truth. We have an auto-immune disorder, much like lupus.

Do your research, and PM me if you have any questions at all. I know how you feel!!!

PS - I am not on depo, and I also notice a huge difference when I eat wheat/gluten free, although my celiac tests came back negative.

Wow - GrammaRocks and I are two peas in a pod! I could have written all of her post, even down to the issues with avocados.

http://www.fibromyalgiatreatment.com/GuaiProtocol.htm ( I highly recommend the books by doctor Amand as well!)

I have fibro as well. What Christina N mentioned has validity, persons with fibromyalgia are chemically sensitive, it is an auto-immune disorder along the lines of MS, lupus, diverticulitis, etc. So while you have had symptoms since your teens, as have I and many others, things you starting taking after symptoms appeared can bring it on full force or intensify it. I for one cannot tolerate NutraSweet, it does a number on my body for up to a week after drinking even a part of a diet soda or food containing it :-/

Migraines (which I had since my teens and have lessened over the many years to maybe 3 or 4 a year), sensitivity to light, sounds and touch, heavy, painful periods, and tender points on my body that result in excruciating pain from the slightest touch, unexplained fatigue, and periods of depression are the earliest symptoms I had. In my 20's I developed sudden severe allergies to avocados and seafood, doctors are split as to if this was a sign of fibro. I also have bad reactions to things that would normally be helpful to a person, peppermint is good for indigestion, it gives me severe, painful heartburn. I tried drinking aloe vera juice for a time to help with all my tummy problems (I also have IBS), it caused my esophagus and stomach to burn as if on fire, the same thing happens with ginger, in ale and in foods, and ginger is usually helpful in calming nausea. I also cannot use aloe vera on my skin, it irritates and causes redness and burning pain. All of these seem odd to a person who doesn't experience them, people tend to think, OK...

I became aware of fibromyalgia about 11 years ago while researching my chronic pain and fatigue, I was unable to work, my husband (now ex) said I was lazy. When I found out about it I checked 6 books out of the library to prove to myself I didn't have it, but it pretty much confirmed it. It was a few years longer before I had medical insurance and a doctor's diagnosis.

My doctor never put me on Cymbalta because of my history with bouts of depression. No Lyrica either as it can bring on diabetes sooner, which I have a family history of. No Tylenol, she doesn't ever want me to take it, I forget why but it doesn't work anyway. I do take 800mg ibuprofen, Tramadol when the pain is bad. Baclofen for muscle spasms, first prescribed by a rheumatologist. She was the one who said there's pretty much not much they can do to help me other than pain relief, as I'd had it so long before it was diagnosed and treatment began. She said to try physical therapy but had her doubts as to how effective it would be. I did it for about 10 months, it didn't help me and sometimes brought on greater pain.

The fibro fog is something I have off and on, when I just can't think. And the arthritis contributes to the pain, grrrrrrr!

So I deal with it and do what I must. I'm raising my almost 4 year old grandson, he helps me work through the pain, the fatigue is harder to overcome. I avoid what makes me feel worse. Attitude helps a lot, it was what it is so I accept it and move on.

My advice is to research it online, everyone's experience is similar, yet different. We all have different symptoms, the chronic pain and fatigue are the keynotes for us. What works for one doesn't necessarily work for all, it's a lot of trial and error. You'll probably be surprised to find out how many people have it, too, many of us don't share, some because people are not always understanding of our "hidden" illness. We look fine so we must be faking :-/ Ask for a referral to a rheumatolgist, a big help to someone with fibromyalgia, and necessary to truly diagnose it. Start physical therapy, it hopefully will help. Find a support group.

Know the potential side effects of Cymbalta -
http://www.cymbalta.com/Pages/sideeffects.aspx

Next month is Fibromyalgia Awareness Day, May 12th, so you should be hearing and seeing more about it. Stay informed as new research and findings appear. I saw this on Facebook today, some good guidance:

"Fibro 360 Community | Fibromyalgia and Fatigue Centers 5 hours ago

Is there a diet that will “cure” fibromyalgia?

No. However, a diet full of fruits and vegetables may supply your body with additional antioxidants and nutrients like malic acid found in apples, and calcium found in deep green vegetables. Antioxidents are considered to be beneficial for minimizing the destructive effects that can occur in tissues when the body generates certain reactive chemicals, called free radicals. An excess of free radicals is harmful to the tissues, which is likely why researchers have discovered that reduced antioxidant protection corresponds to greater muscle pain, and increased fatigue levels.

Doctors recommend that you try to minimize the amounts of preservatives or chemicals that you consume in your diet. This is because your body will require more antioxidants to clear them from your system, and many patients are chemically sensitive. Moreover, there are certain chemicals in foods that tend to cause more problems or magnify fibromyalgia symptoms, such as aspartame, commonly known on the supermarket shelf as Equal or NutraSweet.

In addition to a healthy diet, several vitamins and nutritional supplements have been found to be beneficial for a variety of chemical imbalances to help you improve the quality of your life. For example, melatonin is known to improve the quality of your sleep, although it may not be a strong enough hypnotic to get you to sleep. Vinpocetine, a substance extracted from the periwinkle plant, has been known for years to improve brain function. Supplements also can help with gastrointestinal distress, muscle function, fibro fog, and fatigue."

I'm on Cymbalta, but for anxiety. The doctor that gave it to me is my psychiatrist, so her default position is that Fibromyalgia doesn't actually exist, and the pain I feel and all of the other symptoms of Fibro are actually due to anxiety and depression rather than the other way around. It's really the only issue I disagree with her about, but moot point.

The Cymbalta has been great for the anxiety, but it doesn't do a thing for my pain.

I've had some success going completely vegetarian and following the Feingold Diet as much as I can. Sometimes I waver, and when I do I can feel a major difference. The CFS kicks in worse too. My sensory issues become worse.

If you have an android or smart phone, download Manage My Pain or Manage My Pain Lite. It's a Chronic Pain Symptom Tracker and it's fabulous.

I worked at chiropractic office, that treated fibromyalgia. There are physical therapies that do really help. There are some nutrition things you can do, if it's possible you might visit a nutritionist. Beyond the physical, I have seen it can been incredibly draining emotionally. One woman specifically, told me she found a fibromyalgia support group, and it helped her incredibly. It's one of those things you don't really "get" until you have it, I suspect. She made some great friends and she said it was so important in her staying positive.

Also, I know some of the fybromyalgia sufferers had food allergies. Wheat, in particular.

Sorry, I have not experienced this on my own. I wish I could be more help, but I do hope you start feeling better!!

I was on Cymbalta for my fibro along with gabapentin, klonopin and something else. Sorry, the name escapes me. I have fibro and chronic pain not otherwise specified on top of PTSD, severe anxiety, migraines and a few other issues. Yes, I'm one messed up woman.

Anyhow, the Cymblata helped me but no drugs will ever fully take away the pain or discomfort of fibro for me. I went off of all meds because I did not want to do severe damage to my body beyond what is already done. I figured that for me since meds weren't working any longer anyhow why put myself through upping the dosage and going through the roller coaster that is medication management.

I was taking 30mg of Cymbalta 3 times a day. So sorry to hear of your diagnosis and hope you're able to manage things well. Best of luck to you.

Just my advise, before settling for a fibro diagnosis - get tested for celiac.
I was diagnosed with rheumatoid arthritis due to chronic joint pain, headaches, fatigue etc... I did not have stomach symptoms and neither did my son who also has celiac. Turns out I was misdiagnosed - I have celiac disease and gluten free diet has cured my symptoms.

I take cymbalta for a neck injury that causes pain - it works great and no side effects.

I use ice to minimize the pain. I freeze it in Styrofoam cups so you can peel off the tip of the cup and hold it while using the tip of the ice to rub.

It really works well. When my pressure points are tender there's not much to do except ice them down and take some Tylenol.

My friend take Lyrica and had excellent results with it. It deadens nerve pain which is what Fibro is.

Hi L.
I'm a wellness coach part time and do a process of elimination with the suggestions you have been given.
Depo- valid if you are on - go off and test.
Gluten/celiac- very common and could be the cause. This can develop over time.
Missing supplements- one of the big ones is how a body processes proteins. I stand behind a line of products I use myself that amazingly after 40 yrs took away my restless leg (not why I tried them- more humoring my friends at the time). I have had 2 clients successfully rid the fibromyalgia symptoms using them and know of others.
It's more about how you want to approach your diagnosis.

I work in the medical field as a former lab scientist now perfusionist and don't take meds 1) any more than necessary with all the side effects 2) physicians are not trained root cause but on treating symptoms 3) med school does not teach nutrition as a basic get back to what worked in past 4) unless a drug has been around 7 years, the true side effects are not apparent nor as controlled for pulling bad ones.

Don't get me wrong. I believe in medicine and despite using great supplements I still have med issues and need new knees from hereditary arthritis and wearing them out with tons of exercise.

It's more a process of elimination. Do one thing at a time for a good 3-6 mo and find out what might be your ticket to health without meds.
Don't you find it odd that all of a sudden all of these people are being labelled as having fibromyalsia?? Genetic and processed food changes more likely ??
Sadly- some of the options are costly- from a $ stand point.
There in lies the decision to go cheap on meds, or determine what might be causing your ailments.

I agree- the light and headaches- migraine related. Sounds like you have 2 things going on simultaneously? I had migraines for years- hormonal imbalance that went away with nutrition and now menopausally they are very low grade to a longer headache I can deal with.

I wish you the best, hang in there, follow your gut and find what is best for you. If you'd like any more info on what I know, feel free to email directly at bjarmoluk at yahoo.

About me: 52 yo hobbling now til replacing knees but still exercising and taking bwca trips ; ) mom of 11 yo fraternal twin girls, perfusionist and part time wellness coach

B. J

I don't have personal experience with it, but my old gym had a swimming class in the therapy pool for Fibromyalgia sufferers.

I'd really watch that Tylenol-4. Codeine in there.

I think there are lots of fibro support groups out there. Look for O. in your area!

My friend was diagnosed and did her own research. She began taking an assortment of vitamins and more or less cured herself. She now sells vitamins and is a huge believer in them. She got me started and I was able to fend off my health issues. If vitamins are something that interest you and you would like her name and number private message me.

I was diagnosed myself a few years ago. I was devastated. One of the first things you learn is that every single person responds to different treatments. Meds did little to nothing for me so I quit them after a year. I do yoga daily, walk and swim for exercise - staying in shape helps tremendously reduce "flare ups". I also wear magnetic bracelets and necklace -- reduces my daily pain. With my morning vitamins I take Coral Calcium -- also reduces my flare ups intensity -- take another at night if I've done alot of physical activity or had a lot of pain during the day. Electric blankets help my pain when it's all over! One of the more annoying aspects is sleep -- sometimes I just CANT -- other times I could sleep for days! It's important to get as much consistent and close to 8 hours a day as possible -- helps mood and pain and headaches.
Learning how hard to push yourself and when you just can't anymore becomes really important also. Feel free to private message me -- I know some others with this but it always helps to have contact with people in the same boat. Keep your chin up -- it's tough but manageable.