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Agh! I'm officially falling apart!

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Posted 12/9/2007 12:21 AM (GMT 0)
Next week I am making an appt with my primary because I have a lot of things to go over with her.  But some of the things that I've been going thru is - my eyes (you'd know what I'm talking about if you read my other post), I have been breaking out in red pimple like things all over my chest, upper arms and back (6mp related maybe?), if I stand for too long or walk for too long I feel like I'm going to pass out, I get clammy, dizzy, shakey, panicy, annoyed with sound (possible anxiety attacks?), I have been having severe hip and lower spine pain and spasms (gonna ask to be referred to a rheumy doc 'cause I'm thinking I have arthritis is my spine), and headaches which feel like someone is taking an electric poker and sticking me in the brain - ONLY on my right side of my head and only in one location (this has been going on for a long time).  You ever get to the point where you just feel like EVERYTHING is going wrong at the same time??? Agh!  Ok, sorry lol vent over!
Posted 12/9/2007 12:28 AM (GMT 0)
Ha! I know just how you feel, Sherry. I got up this morning and had to fly all day (business, boo). I knew it was going to be interesting because my whole right side hurt. My shoulder that's been operated on twice, my knee that needs surgery, the hip, the ankle, the elbow, even my neck!

My wonderful ortho ends up checking a new joint as an add-on every time I see her. But she's told me that a lot of my joint pain is bursitis and referred back pain (good old sacroileitis.) My PT gave me some exercises for the back which help.

Oh, and I now have an area between the muscles in the front of my neck that hurts from my ear all the way to my elbow when it's touched.

I think you have good reason to have anxiety attacks! Hopefully your doc will give you some anti-anxiety medication to help with it.
Posted 12/9/2007 12:32 AM (GMT 0)
Yes, I know how you feel. I've been feeling like that lately, like I am falling apart all a sudden. Aren't they all signs of Fibromyalgia? Maybe not the red pimples, that is a sign of Lupus, though. Sorry not trying to scare you but I have been researching several diseases lately and trying to determine if my problems could be caused from the Remicade and if I REALLY have arthritis. Are you taking anything for the Fibromyalgia? I hope you feel better soon!
Posted 12/9/2007 1:08 AM (GMT 0)
Hey Sherry! I have definitely been there. And some times I hold stuff in b/c I am almost embarrassed to tell my hubby or parents something else is wrong! Definitely take a list for the doctor of everything you want to go over. Tell him/her to get comfy b/c it might be a long visit. Here's to hoping you feel better soon! Keep us posted.
Posted 12/9/2007 1:45 AM (GMT 0)
Here is the list of Fibromyalgia symptoms, it's pretty much everything you describe:

http://fmsymptoms.blogspot.com/
Posted 12/9/2007 3:07 AM (GMT 0)
I was diagnosed in an off handed way that I may have Fibro, but it seems at times that this is a catch all condition when doctors don't quite know what the heck is going on. I know many of the symptoms that I have can be fibro related but, I dunno, I guess it just seems too easy of a diagnosis if you know what I mean! I'm so used to my fibro being one way that for it manifest itself in another way, just seems sort of weird. :)
Posted 12/9/2007 4:09 AM (GMT 0)
Can I join in? I feel like I'm falling apart too =( Will it ever end???

The symptoms you describe after standing too long sound similar to the symptoms I get when I'm going to pass out. In the post I had about that, someone suggested I google vaggling (sp?). The Vaso somthing or other vagling type sounded exactly right... So, at least I had "words" to describe it - but no treatments!

Hang in there! I'm going to search for my bottle of superglue...
Posted 12/9/2007 6:25 AM (GMT 0)
Hi Sherry....I didn't realise quite the intensity of symptoms you've been going through! You never get a break girl!

 

The side effects of this fit quite nicely as what I perceive you to be experiencing.  I felt weird for the week I was on it. 

http://www.rxlist.com/cgi/generic/omepra_ad.htm

Read this next one about side effects and 6-mp, but I've also extracted one part that is interesting that may  pertain to you.

http://www.rxlist.com/cgi/generic/mercaptopurine_ad.htm

"As there is in vitro evidence that aminosalicylate derivatives (e.g., olsalazine, mesalazine, or sulphasalazine) inhibit the TPMT enzyme, they should be administered with caution to patients receiving concurrent mercaptopurine therapy (see WARNINGS). "

I definitely think you need to be "investigated" more indepth with some considerations taken into account regarding all the med-mix  you're taking...maybe you need to be off the Colazal and change from Prilosec to another PTI.

Your fingers are getting worked down to the quick from hanging on for so long from feeling so crappy.  I hope you get some answers

 

quincy xx

Posted 12/9/2007 6:52 AM (GMT 0)
i want to know when they stop saying it's "autoimmune disorder" and just life. i've decided if they think that i am the "mystery patient" i shoudl be getting some kind of funding!!!! or at least a disorder named after me!!!!! i could be totally off base her because after all it's almost 2 a.m.!
Posted 12/9/2007 1:28 PM (GMT 0)
What does a TPMT enzyme do?

The dizziness, clammy feeling has only really happened twice and it's when I'm in a crowd of people like at the mall. These last 2 times were super scary, but you know now that I think about it - yes, it has happened to me in the past several times but maybe not as severe and at random events. hmm

And that brain poker feeling thingy - honestly has me sort of scared because I don't know what the heck that can be. It's such an odd feeling - like maybe I have a nerve that is twitching in that spot? I can't really explain that feeling.

Dawn, when you find that bottle, let us all know because I'm sure we all need it!!

Oh Princesscolon, I've been tested numerous times for lupus and it has always came back negative. Though at times I wonder about that too because I get a butterfly rash across my nose and cheek sporadically but mostly when exposed to intense heat. But no, I don't take anything for the fibro. I just deal with it.
Posted 12/9/2007 2:14 PM (GMT 0)
Oh! I forgot to mention! My Uc is back in remission! So that's a good thing anyway! lol It's nice to not see blood in the toilet for a change :)
Posted 12/9/2007 3:49 PM (GMT 0)
Hey Red, I read your post and WOW, that brain poker thing... I have EXACTLY the same thing... on the SAME SIDE.... I don't know what it is, but every time I feel any head pain, it's in the same spot and it's definately on the right side.... I always think the worst.. "OH MY GOSH, it's an Anyurism getting ready to burst!"... LOL Well, so far, no bursting, so I am just as flabbergasted as you as to what it could be.. And yes, It's been going on for long time with me also... I have NO idea what it could be... WOW too weird.. I remember once I got hit with a sudden pain attack there and I actually felt nausea like I'd have to throw up... Do they last a long time with you or are they short pains? Mine are sorta short and I also feel like a pressure feeling when it hits me... I am totally curious about this.. Hmmmm
Posted 12/9/2007 4:09 PM (GMT 0)
The pain shoots suddenly, lasts for a few seconds, then subsides or I feel a weird pulsing with pressure. Also, one day it lasted all day long, shooting off and on. I felt real strange! So odd that you have that too Susie! When I bring this up to the doc, I will let you know what she says it could be.
Posted 12/9/2007 5:38 PM (GMT 0)
OH man, that's totally what I have... I get the pulsing and pressure too, sometimes I have to stop what Im doing until it subsides.. but usually it only lasts for a few seconds, but then again, I can have it off and on for hours... WEIRD... I have had Brain MRI's and they didn't see anything, even with contrast, but at that time they were looking for MS, but I think if they saw anything bad it would have showed up then... I don't know either, does it ever feel sort of ticklely? Pressure with a tickle sensation and sometimes pain?
Posted 12/9/2007 6:28 PM (GMT 0)

SusieBuddy said...
that brain poker thing... I have EXACTLY the same thing... on the SAME SIDE.... I don't know what it is, but every time I feel any head pain, it's in the same spot and it's definately on the right side.... I always think the worst.. "OH MY GOSH, it's an Anyurism getting ready to burst!"... LOL Well, so far, no bursting, so I am just as flabbergasted as you as to what it could be.. And yes, It's been going on for long time with me also... I have NO idea what it could be... WOW too weird..

Strange.  I'm not sure if it's the same, but I get really bad "headaches" usually only on the weekend mornings.  It is usually the right side of my face/head and it feels like its even tied to eye strain, particularly with my right eye.  It is a pulsating kind of pain, throbbing.  I have wondered if I have a vascular problem of some sort, ie vasculitis.  Then after speaking with someone who had an aneuryism it really freaked me out.  Sometimes in the AM at work I feel super spacey and off, and I have no idea if it's related.

Is this worth asking a primary doctor about?  We get so many things going wrong that I've gotten to the point where I basically just deal with everything.  But at some point, I guess things need to be checked into?

Posted 12/9/2007 7:22 PM (GMT 0)
I am at the same thinking point. I basically deal but when things go on for too long or becomes more severe then I go to the doctors and sometimes that's not always a wise thing - to wait for too long either.

I wouldn't even call my episodes headaches because it's so random and short lived. I always say my brain is twitching! lol Because it sort of feels like when your eyelid twitches but in the head instead.
Posted 12/9/2007 7:37 PM (GMT 0)
Oh, Sherry!

  The brain pain might be migraines. Migraines are usually on one side of the head. After that ,they can manifest thenselves in a gazillion ways. Sometimes not even head pain. That said, I get hormonal migraines usually lasting two days. But, the migraine monster loves to play, and sometimes I get what I call hiccups and my Dr calls stuttering. Headaches lasting from a minute to twenty.It might go on for a few hours or a few days.

 Hugs and prayers to you, Dear.

Merry

Posted 12/9/2007 8:38 PM (GMT 0)

Red_34 said...
I wouldn't even call my episodes headaches because it's so random and short lived. I always say my brain is twitching! lol Because it sort of feels like when your eyelid twitches but in the head instead.

I get this, too. I don't know if it's the same as yours, but I always used to tell my boyfriend that sometimes my brain twitches...he didn't understand what I was talking about! Mine wasn't painful though and it would only last a second or two.

Sorry to hear you're having to deal with so much. That must be so frustrating and hard to deal with all of it. Hope the doctor can help you with at least some of it.

Posted 12/9/2007 9:13 PM (GMT 0)
sherry!!!
((((hugs)))) and hope you get to feeling better soon. glad to hear your UC isn't bothering you!

after you enjoy your christmas, just come out to visit me and we'll warm up at the beach! :)
take care
Posted 12/9/2007 10:02 PM (GMT 0)
Ha! If only I could Heather! I would be there in a heartbeat!
Posted 12/10/2007 6:52 PM (GMT 0)

Hi Sherry,

I am sorry to hear you are feeling so rotten.  I wonder if it is side affects from remicade?  Either way it can't make you feel any better knowing it is.  Let us know what you find out.

Stacy

Posted 12/10/2007 7:30 PM (GMT 0)
Thanks Stacy :) I go see my primary tomorrow morning to get to the bottom of all this. I feel absolutely horrible today! My hips are on fire, my ribs hurt and my lower back has been spasming on me all day. I'm going to ask to be referred out to a rheumy doc. I'm not on Remicade yet though I read that Remi can be used on certain types of arthritis if that is what I have.
Posted 12/10/2007 7:39 PM (GMT 0)
A little confused Sherry, they do use Remi on arthritis?  I do remember reading it was first used on rheumatoid arthritis.  That would really suck as it doesn't seem to help you.  Are you running a fever?  Do you feel like you are inflammed all over?  I sometimes get that and it can be very painful.  Can this be your fibromyalgia?  Let us know how you make out.

Stacy

Posted 12/10/2007 8:26 PM (GMT 0)
Interesting. Im on omeprozole (have been for a year) and in the last month or so ive broken out with little red bumps on my face, neck, head and upper chest. they look like zits and are tender. wasnt sure what they were, maybe this is related.

Sherry, do you get regular blood tests to make sure everything is ok? I go every week and get pretty much everything checked out.
Posted 12/10/2007 8:27 PM (GMT 0)
Hey Red.... the eyelid twiching inside the brain... that's SO GOOD, now I have a new way to explain it to my PCP... LOL
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