dizziness and fibromyalgia...who knew?

It has been awhile since I've blogged, not because I am suddenly "well," but because things have been pretty much the same.

Sort of.

The dizziness waxes and wanes. I guess that's just the way it is going to be.

On the other hand, my fibromyalgia has been horribly horrendous lately.

I had a 3-week migraine-a-thon around Christmas where, literally, every single day I had a headache - and most of those days it was at migraine level.

That pain seeped into my neck, then into my shoulder, where it has been living quite uncomfortably.

I went to a few days of physical therapy. After some major snow storms, that kind of fell by the wayside.

I'm chalking all that up to "typical" fibromyalgia.

I've also developed a new agony - gum and jaw pain.

This, too, appears to be a fibromyalgia-related ailment. Not as common as migraines and muscle pain, but fibro patients do complain of this type of pain, so.

As I learn more about fibromyalgia, I have become aware of another common symptom:

Dizziness.

Isn't that interesting?

I was diagnosed with fibromyalgia about 2 or 3 years after the vertigo first invaded my life. However, I remember having fibro symptoms several years before that. In fact, I have found old journal entries where I wrote about debilitating fatigue and body aches which were taking place way, way before the first vertigo attack.

So, which came first?

It is true that many who have chronic dizziness develop fibro or fibro-like symptoms from the body's constant fight to keep balanced and make sense of the mixed messages that it gets from the brain versus the world (very detailed explanation here).

However, I remember being sick before the dizziness. IF this dizziness is from the fibro, that is.

I hate that it is such a mystery.

Health Rundown

Lately, I've felt a little like a health project.

At the end of August, I had minor surgery on my elbow to try to correct numbness in the fingers in my left hand. The surgery is called cubital tunnel release. The recovery has been pretty fast, but the numbness is pretty much the same. It can take up to a year for the numbness to subside, or it can stay the same. Thing is, without the surgery, I was risking further numbness and wasting to my hand, so I had to try it.

Tomorrow, I have an EMG for both of my hands because of pain and more numbness. I had had a carpal tunnel release in 1997 in my right hand which seemed to help for a while. Apparently, though, carpal tunnel syndrome can return. Or something.

So there's that. A few days ago, I had an endoscopy and colonoscopy because I have had constant heartburn and acid, no matter what I ate. I already know I have a hiatal hernia, which I had been diagnosed with over 20 years ago. When I woke up from the procedure, the doctor told me I have a small ulcer in my small intestine. Why not, right?

Aside from all this, I have an upcoming appointment with an orthopedist to check out my neck. I've talked before about the issues I have with compressions on my vertebrae or whatever I have. My neurologist has not been a tremendous help. In fact, I can't get an appointment with my neurologist at all, just the nurse practitioner. Not to minimize nurse practitioners, but I am not convinced she knows what to do with this condition. She keeps changing the information about it; it's serious, it's not. It can affect this, it can affect that, no it can't. I just don't think she knows. The office won't let me see the doctor. Just weird. So I'm going to an orthopedist. Let him check out the situation.

And I am going to go to a pain management center for my fibromyalgia. I have also been seeing that nurse practitioner for the fibro, but, well, same story. She's also been monitoring my migraines. The pain center should be able to handle that as well.

The balance issues have been status quo, I suppose. Don't move my head fast. Don't let myself get too hungry. Don't bend too quickly. Stuff like that. It is a part of me.

That's my wobbly life for now.

why are we settling?

so I had an appointment today with the nurse practitioner.

this is with the practice that diagnosed my balance disorder and now treats my migraines and fibromyalgia.

they also track the balance disorder, but basically feel that since I've been through balance therapy and, since I've had it for so long, there's nothing more to be done.

however, I think that is a load of crap.

and I'll tell you why.

they've only recently diagnosed this disorder (well recently in the scheme of things considering how long I've had it) and I've had a whole lot of improvement since they have AND ALSO

since then they also discovered that I have herniated discs in my neck.

now, the nurse practitioner gave me this little gem today.

she said that "most people have herniated discs and have no problems with them."

may I take the time here to call bullshit?

seriously now.

they discovered these herniated discs in my neck, not on accident, but because I was HAVING PROBLEMS WITH MY NECK SO THEY DID AN MRI!

she said that, unless the herniated discs press on nerves, do they cause headaches or tingling in the hands.

DOES SHE EVEN LISTEN TO THE THINGS I HAVE BROUGHT UP IN MY VISITS?

I have been going there for at least a YEAR for migraines and telling her that the migraine medicine does not work.

and, I have gone for an EMG IN THAT OFFICE for TINGLING and NUMBNESS of my hands, which has gotten progressively worse.

can somebody please tell me how what I said is DIFFERENT from what she said?

ok, so she decides that I can see pain management for the treatment of my migraines (I guess that's what I'm going for pain management for...I am still planning to bring up the whole hand tingling thing to them anyway), and that will involve shots in my neck or shoulders, so that is listening to me, I guess.

then she does my neuro part of my exam and that makes me dizzy.

it's the looking down that does it.  doesn't that say something?  it's still my neck.  why can't someone put two and two together????

it happens on a delay, too, not immediately, but within, I guess 4-6 seconds. and lasts quite a while.

it comes in waves, too.  awful.  thinking about it makes me want to get dizzy again, but I'm fighting it.

I don't understand why I can't discuss these issues with a neurologist, you know?  why do I have to keep having a nurse practitioner GUESS at these things?  it's really pissing me off!!

every time I TRY to make an appointment with the neurologist, the staff tells me that I am just MAINTENANCE and that I only need to see the NP, but I don't feel that this is accurate.

I don't know about other patients, but I have had this vestibular thing for almost 13 years.  that's a HELL of a long time to be dizzy.  we are talking almost ONE THIRD OF MY LIFE.  I am sick and tired of being dizzy, to be perfectly honest.  and I imagine, so is everyone around me.  it's draining physically, mentally, emotionally and financially.

so, WHY IS IT that MY issues are less important than any other patients?  I am not what I would call better.  I am not satisfied with the extremely casual attitude the NP had today when she said to me, "some people have vertigo for a very long time."

it has not even been considered that my vertigo is coming from the problems in my neck.  I have been to physical therapy for neck MANY YEARS AGO.  WHY IS NO ONE CONSIDERING THIS??  HOW DO I GET SOMEONE TO LISTEN?

I guess I'll try the pain management doctor, but who knows?  this is almost, but not quite as frustrating as when I had no diagnosis at all.

and, from what I see from others like me, it happens all the time. our issues are, somehow, less important.

go on any vertigo message board and you'll see dozens of frustrated people just like me. or worse. it sucks.

excuse me while I complain

I haven't written in a while (obviously).

I haven't had much to say.  I've been home, doing not much of anything and I hate it.  the dizziness still comes and goes.  for no good reason.  I've quit trying to understand it.

I haven't been doing much about it, either, though.  that's probably a bad thing.  but I'm just frustrated and, aside from Stacy, absolutely NOBODY could give a wild you-know-what (controlling myself) about how I'm doing or how my life is going or just anything at all. so I don't care anymore.

yeah, it's one of THOSE days.  why?  I'll tell you why.  because people say stupid things to me and expect me to suddenly NOT be dizzy and back to the way things used to be or

they just don't talk to me at all

nice

it's not that I'm complaining about being dizzy.

it's that they say stuff like, "why aren't you driving?" or "any job yet?"

I'm pretty much talking about my mother, I guess.

because nobody else calls at all.

I went to a rheumatologist to see if I can get better treatment for my fibromyalgia.  she said she "wanted to get to know me better."  that is doctor code for, "let me make sure you are not a drug addict before I give you different medications."  which, in my case is ridiculous, because if she just took a look at what I was taking right now, she could see I was not taking ONE addictive medication.  hell, she could give me a drug test, or get my records from other doctors.  instead, she is wasting my time.  so, I continue to be in pain, have sleeping problems, thinking problems and, well, I'll wait.  she did tell me to add fish oil to what I take everyday, so I did.  no change.

 anyway, that's about it on the health front.