I have only been diagnosed for less than a year, but have had this for more like six or seven years. I can tell you that, for me, it has gotten worse overall, BUT understanding it and treating the symptoms has helped recently. Particularly helpful: Getting my night-time sleep regulated so I get at least seven good hours. Ambien helped me, but just get a sleep study done if you aren't sleeping well because a lack of good sleep makes everything so much worse!

Oh, and YES, it is very hard to come to grips with this. It is simply a maddening condition to have to cope with. You are certainly not alone in your struggles!

Two things that have really helped me are probiotics (not the drugstore crap) and digestive enzymes.

I can't believe that more research isn't being done to understand the mechanisms around Fibromyalgia because it just CAN'T be that invisible. There must be a measurable mechanism, and we need to find it. There are too many people with fibromyalgia who can't get treatment. At the same time, there are too many people with Lyme Disease, MS and CFS who are diagnosed with Fibromyalgia. Fibromyalgia mimics a lot of different things, and it seems that all of those other things can be just as elusive.

It sounds like they have run you through all of the same exact tests that I have been through. It drives me CRAZY because just after we run a test, I get a symptom and I wish we could run one or two over again to be for SURE sure that it isn't MS. I am pretty paranoid about it--especially right now because my left eye has been pretty well non-functional for 2 weeks now! I'm sure glad I've got that ophthalmologist follow-up tomorrow!

Oddly enough we are actually finding some things with me (epileptiform spikes, white matter anomalies), but nothing to quite explain the severity of my symptoms. Thankfully, it is enough to get me the treatment I need to keep myself going!

Here are a couple of links you may find interesting....

http://gumc.georgetown.edu/news/stories/218391.html

http://www.psychologytoday.com/blog/turning-straw-gold/201109/the-challenges-living-invisible-pain-or-illness

I guess we should be happy that all our tests come back negative but it sure is frustrating. Every time I've changed doctors they've made me repeat all the testing. It get's old.

Your ear problems sound like Tinnitus and the tummy trouble is probably IBS. Both seem to be common symptoms with FM.

Besides the ringing in the ear that seems loud enough that others should be able to hear it too, I also get a high-pitched squeal that just drives me nuts.

This came on suddenly for me in 1998 and is still going strong. I'm sorry to say that it seems like it will be forever because I've never had anything close to a remission.

It is very hard to come to terms with it when you are first diagnosed. You spend the first 3 yrs trying different treatment options and when those don't work you become your own doctor and learn new medical terms. LOL I think most of us have studied enough to become doctors.

You will in time settle in with it though and begin to know your body and what your limits are. Once you begin to accept the new reality you will learn to live again even if it wasn't what it used to be you can still enjoy your life.

I will never give up hope that they will find the key and unlock this prison that my body has become.

We get strength from each other and hold each other up during the bad times and laugh together on the good days.

I have had numerous tests that come back normal for overwhelming symptoms and I think how can that be? My left ear hurts freq and when a Dr looks at it - looks good -REALLY IT SURE DOESNT FEEL GOOD.

The last time I saw my former medical Dr he said you have had alot of complaints that I cant find a reason for - I said are you calling me a liar - he said nothing just looked at me - I now have a new Dr.

For me my fibro has gotten worse- have gotten many problems secondary to it also - chronic bursitis, chronic costochondritis etc plus I have back issues that actually showed up on a test- lol.

As Muneraven said quality sleep helps.

I really thank you all for your replies. I am really sorry that each of you are experiencing this struggle; but I am very grateful for your understanding support.

I am taking your suggestions seriously. I have been on a cycle of not being able to sleep, and also not being able to stay asleep. It has gotten pretty severe this last three months. I will maybe take a muscle relaxer tonight to try to brake the cycle. I also did exercise today (painful). I was able to get through it but I have been exhausted and in more pain all day. I know this is just the way it is going to be for me but thanks to you guys I have a better plan for coping.

Well wishes to you all.
Sincerely, RSimmons

I am really sorry, I can relate.
the ear thing sounds very much like tinnitus. I have it too. and it's no picnic. You may want to go to the DS tinnitus group. There are helpful ideas and support and you may want to help 'mask' the ringing and noise. try 'white noise' or ''pink noise' there are free downloads online. it may help if you are wanting to get to sleep or wanting to read. my tinnitus is pretty bad, and it is there continuously. I try not to focus on it. easier said than done I know. I have slight hearing loss too. I went to an ENT.

the tummy troubles. I would suggest trying to go gluten free. I know it is all in the media and lots of people are on the 'gluten free' band wagon. but I went on it before it got so popular and found it helped with digestive problems. I even feel it reduced the fibro fog too.

I did get my doctor to check me for celiac and gluten intolerance but things came back negative However those tests are sometimes not accurate and I of course was going gluten free when I got tested. And I found out later You are meant to be consuming gluten for a week or so before getting tested. so I wasn't going to do that and put myself through pain.

I basically go buy my body and how it feels and reacts and I find that eating gluten free agrees with me more.
I am not 100% GF as I sometimes stray and I actually pay for it at times. so the majority I am GF and feel it is worth the effort.

so maybe give it a try if you haven't already. start off with eliminating high gluten foods (wheat, rye, barley) for at least two weeks, not just a couple of days. and see what happens. be strict and carefully read labels for the two weeks so you will get an accurate read of what happens. If you need help just ask.
i am no doctor, no expert just throwing this idea out there and wanting to help.

I also take probiotics and enzymes. I get mine online. I believe it all helps to better my digestion and I don't get the tummy pain and toilet problems like I was.

The sleep thing. Only recently the insomnia has become more of a problem. getting to sleep is fine, it's the waking up in the night. If you are wanting to avoid taking drugs. You may want to look at melatonin and I am testing out a sleep formula currently and it's too soon to comment on it but I am being hopeful.

I am sorry you are going through all of this. I hope you can find things that can help improve the quality of your life.

Those noises in your ears are "Tinnitis" I hear constant loud to soft hissing in my ears!!!!!

I've got tinnitus, too. I had no idea that was a symptom of fibromyalgia! I tell you, I learn something every single time I read through this forum.