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schao 08-28-2006 01:56 PM

In tears....what do I do?
Hi there:

I've posted on this board a few times. I don't have an actual fm diagnosis as of yet. I posted before with all of my symptoms and all of the tests I have had done in the last few months. I am in so much pain--I just don't know what to do anymore. How do I know that the doctors aren't missing something serious? This is what is hardest for me---believing that they haven't missed something important.
Just to recap real quick, my symptoms are:
Spacey/disconnected/unreal feeling in my head--like im walking around in a dream all of the time
Brain fog
Extreme hair loss
Extreme fatigue
Pain everywhere---but mainly in my upper back/shoulder/neck area, and my low back/hips/butt/legs--my lower pains are SEVERE at night, but when I get up in the morning and get going the pain lessens
Chronic sinus infections
Constant breast/pelvic pain
Sweat alot, occasional night sweats

Those are my main symptoms, and the tests I've had done are:
MRI--brain, pituitary gland, lumbar spine--all with and without contrast
CT Scan--abdomen, pelvis--with and without contrast
PET/CT Scan--head down to mid thigh
Pulmonary tests
Blood tests galore
Pelvic ultrasound

The only things that have shown up are a past EBV infection I had--but I didn't know it, and I had an xray of my hips that showed mild DDD--but the doc said that shouldnt be causing me pain.
I'm being seen at the Mayo Clinic, but they are just about at the end of their rope as well. I just don't know how to believe that there is nothing seriously wrong with me when I am in so much pain and feel miserable everyday, and hurt so much at night.

Sorry, I know I've written a lot of this before, I just dont know what to do. Just be in pain and take narcotics all of the time? Right now I only take 2 at night to help me get through the night. I'm just in tears :(

Thanks for any thoughts,

aleenia 08-28-2006 02:06 PM

Re: In tears....what do I do?
i'm so sorry you are in a lot of pain :|

i just wanted to ask though... how did you get all those tests done? i've been to my doctor three times now, with an abnormal sed rate and cbc, and they keep sending me away and telling me to come back in a month to recheck my blood (my sed rate number keeps increasing).

i'm wondering, seeing as i'm in so much pain, why don't they test me like they have other people? i would've thought i'd at least have been given an x-ray.

if you have any advice, please pass it on. fyi, i'm with kaiser.

again, sorry to hear of your situation - i really do sympathize.

bluelakelady 08-28-2006 02:15 PM

Re: In tears....what do I do?
hi schao,
take a few deep breaths and run a nice warm tub of water with bubbles. you are in a cycle of pain, and yes you can hurt this much and everything be "healthy". if you have fibro this is a flare up. they can last a few days or months.
i remember feeling those same feelings. just know they missed something. they did not. i take pain medicine for degenerative joints. my jaw, both sides. amazing headaches. there are things that are really real and cause pain as well as fibro pain. if you have weak areas, like an old injury site, fibro loves to go there and have a party. a really big party. i have it in every aspect of me that has had surgery or injury as well as internal organs. even my eyes.
so little is understood. sadly this causes fear and stress. when a doc really has no magic to impart to you it is hard to feel anchored and secure.
please consider a nice bubble bath and a glass of ice water. do a bit of breathing and reconnect with your mind. we tend to leave ourselves when we hurt. maybe some soft music. then go curl up on your bed and give your body permission to rest.

bluelakelady 08-28-2006 02:22 PM

Re: In tears....what do I do?
hi aleenia,
for myself i asked for the tests to be done. for my peace of mind. just knowing all that is fine really helps me greet each day smiling. you bake some cookies or something and you sugar up your doc and the staff. write a list of things you want done. present it to the doc and when she/he asks you why you want these done you tell them i am sure it will all come out fine. however, i require the peace of mind knowing the results will give me.
so far it has worked every time for me. people, especially a corp as big as kaiser, always love to be treated special. because we all work hard and those bits of appreciation go a long way.

dougrobin01 08-28-2006 02:37 PM

Re: In tears....what do I do?

I'm kind of new to this board and have not been diagnosed yet either but I had a wonderful appt w/ my general M.D. last week. I went armed with tons of info I got off the web plus lots of great info from this site. I basically just told him, I think I have Fibro and lets look into it. I made him listen to me for a 1/2 hours with no interruptions as to exactly how I felt and why I felt I had Fibro.

Luckily, he was totally hip on Fibro and even got out his big black medical book and we sat there and compared notes. He was impressed that I had so much info already. He tested my trigger points and man was that painful! He scheduled me for a fasting blood test today but I screwed up so I have to reschedule. (can't eat for 12-15 hours and I'm a wuss when it comes to not eating)

Basically what I'm trying to say is, what's up with the docs you are seeing? I have all of your same symptoms plus some other odd ones and I've only been to one doctor. I think you just aren't finding someone who knows what the heck Fibro is.

Not getting off the subject but for example, this reminds me of when I went to so many podiatrists and orthopedists just so somebody could treat my heal spur. It took two years of excrutiating pain and misery until I walked into the last Dr.s office and basically told him he better do surgery or else! Yes, I had an attitude but at that point, how could I not? He immediately agreed and I'm now back to my old self as far as my feet go. Nobody else would even listen to me about having foot surgery. They just kept playing around with meds,cortisone shots, shoe inserts, splints and exercises which never worked. They dismissed anything I had to say which is highly upsetting and belittling. You're going through that whole ordeal now.

You just need to get a little bit of an attitude and take control of what you think in your heart is wrong with you. If it's Fibro, then say it loud and clear. If they don't want to go that route, then move on immediately to the next one until you get help.

Good luck!

schao 08-28-2006 05:15 PM

Re: In tears....what do I do?
Thank you all very much for your responses. That bubble bath sounds great--I think I'll do that when I get home today :)

Aleenia: I've had so many issues going on that when I go into the doctor I just ask for certain tests. I have a great internal medicine doctor who is open to anything I throw at her cuz she wants to get down to the bottom of my pain as well. Also, when you go to the Mayo Clinic you initially see an internal medicine doctor who you go over all of your symptoms with and then they order a whole bunch of tests that they think are necessary. I've gotten a lot of my tests done there, but not all of them.

I think the key is, as hard as it is, is finding the "right" doctor. I have no problems with any doctors I have seen, they really are truly trying to figure out what is going on with me. At the Mayo Clinic I was sent to see this neurologist for my dizziness issues, and after we talked for awhile--and looked over all of my test results he concluded that nothing neurological is wrong with me--but he truely cared and is still pursuing and helping me even though it is not in his area of expertise. So, I'm just hoping and praying that I can get a diagnosis and get this pain under control so I can start enjoying this beautiful earth we live on every day :)

I just get very frustrated at times, but I'm sure im not the only one.
Also, it's very helpful when you go to the doctor if you can take someone with you. If your anything like me--I forget alot of things, and sometimes I just break down--then that person can pick up the pieces for me. Be forceful with the doctors!!! (But in a nice way to where they want to help you) :)


klshipp 08-28-2006 05:29 PM

Re: In tears....what do I do?
I am not sure, but I think I have fibro. I am a 45 yo female and I have always suffered pain in my joints, mornings are really really bad. I am having trouble finding a doctor to understand just how bad my pain is. I think that because I function, and just bear with it, that docs just think it must not be that bad. I guess my main question is my ankles and lower calves are swelling. Does anyone else have this problem with their fibro?

bluelakelady 08-29-2006 08:31 AM

Re: In tears....what do I do?
hi kl,
see your doctor about the swelling. this is not fibro related. it could be edema and that does require attention.
how was your bubble bath? after working so hard a reward is in order. bubble baths seem to float the day and it's pain away. enjoy.

Glojer 08-29-2006 10:02 AM

Re: In tears....what do I do?
Klshipp all joint pain is not fibro related and if you are having swelling you need to see your doc, he/she may send you to a rhuematologist. Don't wait very long though edema is nothing to fool around with.


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