Well, it sucks. That's about all I can tell you, because it manifests differently for different people. When I first had symptoms 20+ years ago, the pain was mostly in my upper body. But in more recent years it's moved to my legs.

The medical community keeps coming up with new theories about fibromyalgia. Based on my experience, I think it's a disorder of part of the nervous system. It can begin with physical trauma, like a car accident. Right or wrong, I tend to blame the excessive radiation I had as a child.

I haven't been on this fibromyalgia message board in years, but it used to be a good one and probably still is.

If they have a discussion on MTHFR, check it out. If not, you might Google it and see if you can relate. I know it's an issue for me, and several supplements have helped. Not a cure, but enough help so that I keep taking them.

Whether an affliction is well understood or somewhat of a mystery to the medical community, isn't the best starting point a consultation with an attentive and proactive physician?

I'd go to a new doc asap. I hope you feel better soon.

Thanks for the responses. Snidley I have talked to primary care docs over the last couple of years and always hear the same thing--can't diagnose as fibro but probably is. There really is no way to definitively diagnose as such. Up until fairly recently the pain was not really impacting my everyday life and you just get used to it. Recently however it has gotten worse. My sister is on meds for it and she says it helps some (Cymbalta). I guess what I am hoping to find here is not a diagnosis but some down to earth information about how others handle this. Thank you for the good wishes.
Alisande, I will check for the forum you suggested. I feel that my situation has been a long time coming or at least getting to this stage. In the past 13 years I have lost my husband, my father, my brother, suffered a mental breakdown, sold my house and moved, had knee surgery, had colon cancer and retired, got a daughter through drug rehab and it just has been more than I could deal with and affected me physically. Anywho, I'll check out the forum and get some input from us ordinary people. Satine

Satine, it sounds like you had more than your share of bad turns. But you've come through it all, for better or worse, and you have your head up. Keep your good attitude, it's the most important thing.

Do you live near a medical school? Seeing an internist there wouldn't end with a pat on the head. Or how about your sister's doctor?

How about calling other internists and asking their office staff if the doc treats fibromylagia (assuming that's what you have)?

I'm sure that with your good attitude and persistence you can make progress. Don't take "no" for an answer!

Mine started in my thighs. It was like someone was digging their fingers deep into the muscles. Sometimes my skin is super sensitive and clothing rubbing or air blowing across my skin is like severe road rash. It has also started in my arms. I find it's worse when I eat foods in the nightshade family such as potatoes, tomatoes, okra, ect. I go to a reumetologist(sp?) for my arthritis and that is who diagnosed me. There is a pressure point test they can do to check for it but you have to get I think 8 out of 10 to be diagnosed with it. I am now taking Gabapenton for it. Supposed to be twice a day but I'm lucky if I remember to take it once as it can't be taken within 2 hours of taking an antacid which I take in the morning half hour before breakfast. I should set a timer but forget to do that also.

Are you sleeping well? Or is the pain making you restless at night? I was told to get at least 7-8 hours every night. It is hereditary. We think my 30 DD has it also. From everything I've read, I had it for years before diagnosis. Her symptoms are very similar to mine.

Prayers sent for you
Tami

Have you had all the blood work tests done to check for various immune system diseases? I think a Rheumatologist would be a good place to start they will run special blood labs for markers that are specific to those diseases, much better than a basic primary physician. Sjogrens syndrome has a lot of the same type symptoms, including major fatigue and pain. Having a specific diagnosis is helpful but not always possible unfortunately. But getting all the test done that can be done can help eliminate certain things and may just find something you did not suspect. That certainly was what happened in my case. It can turn out to be multiple disorders which causes a much more difficult diagnosis process. It literally took a team of specialist to find out some of what is going on with me, but I really have to say between my Rheumatologist and my Neurologist and the many tests they ran we were able to nail down specifically certain disorders and eliminate others. So we at least now know some of what we are trying to treat. And it has made a world of difference in my life.

I was made to feel like a hypochondriac for years by different doctors because of my symptoms. I was finally referred to a rheumatologist in 1984 who diagnosed it immediately because his wife has it. We went through different combinations of different prescriptions for several more years before I became frustrated and gave up. I just live with it now. I take Alleve or Excedrin PM if I absolutely have to.

AFAIK Cymbalta was formulated as an anti-depressant. It changes the chemical balance in your brain. You are less aware of the unpleasant feelings -- physical or mental.

So...doctors were right! It IS 'all in your head'. (Not LOL.)

I've had it since my late-20s. I'll be 61 in July. I didn't get it under control until I was put on Wellbutrin for pain / sleep management and took Magnesium Malate daily. I've been on so many pain meds over the years for FMS and severe spinal stenosis that I'm now in stage 3 kidney disease and cannot take anything stronger than Tylenol. Mine has always been in my shoulders and upper back but occasionally feel it in my legs.

Snidely I have suffered for the past 30 yrs with fibro. I has taken so many things away from me, and limited my ability to participate in life. It has cost thousands of dollars in medical expenses, from tests, to new doctors to medicines. I cannot plan for anything as I never know how I might feel from one day to the next, heck I never know from one hour to the next for that matter. It is beyond frustrating when for all intents I look "well" on the outside, but shattered in the inside. Its only obvious that being sick day after day, in constant pain that depression becomes part of it. Try to find a doctor who treats fibro, usually they are rheumatologists. They can run some tests to at least rule out other possible causes. Have you had your vit D checked if not start there, Sadly there is no one size fits all when treating fibro, its alot of trial and erro. What works for one can be a nightmare for another, so try to keep an open mind when researching others treatments/advice.Please pm me if youd like.

If you have a problem with nightshades may I suggest an elimination diet? You wouldn't believe how many "healthy" foods can mess up an individual. I wish I could suggest a book but I've been through them all and found it to be a very individual thing. I also have arthritis and keep it in remission through diet change and have been three years free of medication. I stay clear of gluten, dairy, soy, and try my best to keep out sugar, nightshades, corn and all processed foods (usually if I am at a restaurant or someone's home I will have these but never gluten). Sounds boring and difficult but I found what I used to eat is habit and now this new way of living is my new habit. No regrets here.

Here is a link that might be useful: http://chronicfatigue.about.com/od/copingwithfmscfs/a/eliminationdiet.htm

Thanks all. I am going to start with a rheumatologist since I do have arthritis in knees and hands. Hopefully this will be the beginning of getting to the bottom of this. I feel like I am just wasting my life laying on the couch much of the time. Other times I can get around pretty well. Guess I just had a really bad couple of days and just have to do something about it. Thanks for all the support and suggestions. Satine

Cookie, your reply intrigued me, what do you eat in a typical day? TIA

Cookie, I will check out that link. As I don't eat tomatoes, and almost never eat okra, my big problem is potatoes. I love them. It wouldn't hurt to cut out gluten either, but I'm not going to cook two meals all the time. DH won't eat my old allergy diet. And with prices the way they are, I don't think I will anymore either! Of course, if I did, I'd weigh a lot less, as I could, and did, loose 10# a month by not eating what I'm allergic to. Garlic,wheat, beef, yeast, dairy, chicken and turkey, being the biggest. I can't eat garlic except in very small amounts at all. The rest just manifests in weight gain, and if I go overboard on dairy (read ice cream!). I don't drink milk and don't eat a lot of cheese.

Tami

watch the salt intake Satine,for starters-that too,will not help any type of arthritic joints.

I too,have fibro,have had for years,and was blood tested as proof of it

Now I am on a biologic medication,Remicade for my Crohns disease,which is helping "everything"......some days it just pays to stay in bed tho-thats the only way to get thru it.

Satine, as someone else has pointed out, Cymbalta is an anti-depressant. Have you seen the TV commercial that says, "Depression hurts"? It's true; depression can create pain.

Cookie makes an excellent point. I react horribly to solanine, the offending substance in nightshades, and have had to give up potatoes, tomatoes, eggplant, peppers, artichokes, okra, and blueberries. I miss some of these, but dealing with the symptoms they produce would be intolerable.

Snidely's posts assume there is a known effective treatment for fibromyalgia. This is not true. Every couple of years the condition is redefined; that's how amorphous it is. The information on fibromyalgia (FMS) is confusing at best. Some of the recommendations contradict each other. Every so often a pharmaceutical company comes out with something marketed as an FMS drug. The sufferers on message boards discuss these ad nauseum. Some people think they may have been helped; others find the drug made them worse. And some aren't sure. I've never been tempted to try any of the drugs myself.

I rarely get FMS flares anymore, and I think giving up those foods may be responsible for that. Still, one thing that is guaranteed to put me in a bad flare is walking too fast. Sometimes when I'm feeling good I want to increased my stride, but I don't dare.

As for other FMS symptoms, I still startle easily, dislike loud noises and bright lights, and am generally hypersensitive to stimulation. I have days when I'm brain-fogged. I have the classic FMS "window of opportunity" to get to sleep at night. It's a brief window, and if I ignore it the price I pay is insomnia.

Right now I'm more concerned with the symptoms that have remained following a couple of bouts with tick-borne illness. There are some who say FMS is caused by a tick bite. I've never really bought that, but who knows? There is so much we don't know.

For the past 5-6 months I also do intermittent fasting (my younger sister started and loved it). I hated it at first but once I adapted, I love it too. But, when I used to eat breakfast it would be 1/4 cup quinoa with 1 tbsp coconut oil, 1/4 -1/2 chopped pair or a bit of raisins, 1 tbsp of almond butter or cream of rice with same toppings, or a couple scrambled eggs with couple handfuls of spinach, or Udi's gluten free toast with almond butter and sliced banana. Lunch would be some chicken with a salad or a bacon and avocado sandwich on GF bread, or soup of some sort, dinner would be meatballs or any meat and vegetables. Snacks would be raw nuts, rice cake with almond butter and banana, raw vegetables, piece of fruit, smoothies, rice milk scoop of coconut oil. I also take supplements - probiotics, vitamin D and fish oil, glucosamine, MSM and magnesium. I do slack with supplement now that I have my energy back and have no more pain. Workouts are a must too. I started out slow but am now doing high intensity interval training. Three years of figuring this out is pretty worth it to me.
Moving to biologics made me uneasy but I was reacting to my DMARDS and Celebrex and to be honest they just weren't really working and was tired of the monthly blood testing so I didn't think I had anything to lose by researching alternatives. It took me a long time to fully commit to the diet and it is difficult to figure everything out but I wrote down everything (symptoms and food, how I felt, all my aches, etc). Sorry this is so long but I hope it can be worth it for someone else.

Not at all, alisande, I was assuming nothing. Comments that are brief and quickly pulled together are easily misunderstood. It's a two way street, we misunderstand others and are misunderstood ourselves.

As a result of having an inattentive physician, she made make her own diagnosis and was looking for anecdotal comments. Instead, I suggested her starting point should be with an good internist who wants to get involved and then, if necessary, point her in the right direction. Or a rheumatologist, whatever, that may or may not be the right direction to start with but hopefully, again, a good one will redirect her care if needed.

I have nothing but sympathy and concern for all who suffer from chronic conditions, whether they're diagnosed and being managed or not.