[little*rhino]

one doc defers to the next to the next to the next.

around i go

i have so many medical issues i feel like a medical textbook

i don't know what is wrong over the past few days but i feel so tired again. Chronic bad mood, fatigue and inability to make any sort of decision... i just put on like 5 different outfits to go out.. can't figure out what to wear.. it's not like i am going anywhere important. i can't decide on anything, big decision or small. My head feels all foggy.

One doc thinks i have fibro, one thinks maybe/maybe not.. even though i have 11/18, which is the dx for fibro.

my pdoc keeps saying i must have lupus bc of all the other issues.. but my RNA test was negative. He says that can happen and still have lupus. That scares me.

i do have ehlers danlos III (sometimes known as the extreme end of hypermobility syndrome). It causes no end of grief. It has lead to crippling back issues among other things. i've had three tumors for god sake.

i'm sick and tired of being sick and tired

sorry for the self pity. i feel like wallowing today. i can't always put on the brave face and march ahead.I'll shut up now.

[Christina86]

((((((((((((Candika))))))))))))))))

I'm sorry. Sometimes I feel like a medical case study too... it sucks.

[CedarS]

I have fibro, chronic fatigue syndrome, migraines, and some hypermobility too. Big hugs to you.

I'll give you some ideas based on my experience, maybe something will help.

Once I got the diagnosis for fibro - and you definitely have that diagnosis too - I wasn't willing to debate it with any other doctor. If a doctor doesn't "believe in it" then they aren't the doc for me. Because I'm on medicaid I may at times need to work with a doctor on other stuff who doesn't believe, but I do have a primary doc who knows it exists and that I am diagnosed with it.

In this way I don't feel like I have to constantly reinvent the wheel. Going to doctors is hard enough for me, dealing with disbelief and rudeness is horrible, I've had more than my fair share.

I do a lot to educate myself. Sometimes a decent book on the subject and talking to another fibro person helps much more than a busy doctor. I keep tabs on what new books are out and available through my public library. I take everything I read with a large grain of salt - what works for one person might not work for me.

The self help info through this group has been a life saver for me, I've been part of their internet support groups, so helpful. I also use their book a lot:
http://www.cfidsselfhelp.org/index.htm

The web site is kept updated with new articles, lots of good stuff there.

Candika you don't need to shut up and it is fine to vent, express, share how you are feeling. The merry go round of doctors can be utterly demoralizing and exhausting. Plus you are dealing with health symptoms already.

Your fogginess might very well be stress plus fibro fog. That fogginess is a common symptom for many of us with fibro.

With you being told that you might have lupus - that is a rough one, but probably the best you can do is take good care of yourself anyway - if you develop further symptoms you can take care of that at the time. For me when I can it works best to deal with what is known and in front of me and to try not to worry too much about the unknown.

Of course that is easier said than done.

I think some of what we disabled folks go through is because our modern day culture tends to not be that understanding of disability - different abilities. Lots and lots of us have health challenges but our world acts like we are all supposed to be perky and energetic. And that we are somehow bad if we are human and imperfect.

I've had to simplify my life quite a bit, that has helped some. Distraction helps a lot too. Relaxing in bed with a good book is my favorite. Do you have some healthy distractions you can turn to?

We can't always put on a brave face and maybe we should not have to.

[Kiya]

(((((((((((((((((((((Candika))))))))))))))))))))))))))))))
I'm thinking we need a 4th dimensional solution (something ahead of where we are ather than trying to play catch up).
As you know, i'm dealing with a lot of the same stuff. My MD is calling it adrenal fatigue - which underneath that is the fatigue, IB, all 18 and then some of the fibro dx list, migraines, ... now female stuff to boot.
I think the medical community at larg (no offense to anyone!!) doesn't know what to make of this stuff. But we're not making it up, and it's not getting better. My MD expected me to be far better by now - instead I'm worse.
Hang in there hon, we'll get through one step at a time, all us sharing what we know. =(
****hugs!!****
kiya

[nightbird]

yes, hang in there.

we can search out these issues ourselves when we have to.

i remember being in my primary Dr. office months ago, telling him AGAIN my symptoms, (had for well over a year) and he handed me a referral for the one and walked right out of the office while i was speaking -

i felt like a f* idiot.

turns out i'm pretty sick, with no help from him at all. it took so long try to open his ears, it finally took other Dr.s to do so. Who's feeling like an idiot now?

When our Dr. won't educate us as to what is wrong and help us heal, we have to do it ourselves, and find another Dr. to assist us in our desire to be well and beat our health issues.

i'll be finding a new primary dr. when all this is over - and letting him know, in writing, why i don't trust him to help me resolve health problems.

I'm going to find a talented, caring female Dr. next time.

Best to you figuring things out and getting some help to recover.

peace,
night

[Blue93]

(((((((((((((((candika)))))))))))))))))))
No advice here, just wanted to say I care
And u are not whining or anything
or if you still think u are, whine away... Better to get it out once in a while then keep it all in after all

Blue

[HALLIEBETH87]

*big hugs*

[ErinBear]

I was in a similar situation one time, where I had a lot of difficult medical problems and it was all very confusing....and nothing was getting resolved. I don't know what your insurance situation is, or if you have medical insurance. If you do, you might try calling your health plan, and see if you can be assigned a case manager to help you navigate all of this, and possibly work with these doctors - or refer you to someone who can give you more definitive information if necessary. I was assigned a case manager at one point and it really helped me. She checked in with me periodically, and kept an eye on things, but the best thing of all was that she found the internist I see now, who is such a brilliant physician. He oversees my care now and is the best physician I've ever seen. Sometimes health insurance plans will assign case managers when patients have a lot of health issues going on, and it can really be a big help.

One way or another, I hope you'll find the help you need, figure out what the trouble is, and start feeling better! My thoughts are with you.

Take care,
ErinBear

[little*rhino]

im in canada, so thankfully insurance isn't an issue for treatment or doctors and i have drug insurance. i have seven specialists at this point. All that has done is mean there are more of them to share me around to without anyone making anything any better. i don't think we can get case managers here, that's sort of what the GP ends up doing.

fibro fog? i hadn't known that before... i will research it. thank you.

you're right.. i need to tune out the bad docs. i just want some answers now. The main stuff is bad enough, but the mood stuff is driving me to despair. It's hormonal, no doubt about that.. you can time my moods like clockwork. But nobody will DO anything or tell me what is happening. It seems i react to progesterone. The best i can find online is PMDD and all they suggest is an SSRI AD. Those thingsdon't work for me. Does this mean i get to spend more than half of the next 10yrs upset, crying, irritable, etc?i can't bear the thoughts of that...

isn't the slow degeneration of my joints and spine enough?

this is a big whine.. i normally just take the pain and do what i have to in life. i never say why me... it doesn't help any. i'm just tired. i cannot go through years of this, being myself for two weeks and crazy for the other two.

thanks for being so supportive

[Kiya]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
nightbird said:
we can search out these issues ourselves when we have to.
I'm going to find a talented, caring female Dr. next time.

</div></font></blockquote><font class="post">

Amen to that!

no advice, going through the same hun, but *big hugs*

[little*rhino]

Originally Posted by Rainbowzz

no advice, going through the same hun, but *big hugs*

These past two weeks have been a nightmare. i am crazy.. no, really, i am. Frantic every waking hour.. cant think.. cant decide.. frantic. i lay awake. Last night i drank myself stupid just to escape for a few hours. Bad idea. With my meds i could kill myself accidentally.

i want these hormones to STOP

i get one, maybe two weeks of partial relief.. one in which i feel normal, then deterioration over the next three. No one will hlpe me.

[jbug]

I just wanted to say I understand your frustration. I live in the states and have had my share of doctors just say its all in your head get over it.

Jbug

[sunrise]

Originally Posted by Candika

i want these hormones to STOP.

Is it artificial hormones you want to stop? Or do you mean your natural hormones? In either case, is there something your gynocolegist could do to control your levels? If you're taking hormones, could you stop, or try different ones? If you aren't, maybe you could try a drug that would suppress your hormones? I'm just thinking outloud... I hope you have a good gyno and can get some help. And if you don't have a good gyno, can you switch docs? I'm so sorry you are not feeling well these days.