I think I need to Vent

[Crohniac]

:ymad: :ymad: :ymad: :ymad: :ymad: :ymad:

Hello again all. I am writing this morning just to vent some stuff. I know that this is a good place to come to if I just need to get something off my chest. OK here goes.

I hurt all the time. It is migratory pain so I can't pinpoint where it is and try to fix it and it moves around too fast. The newest symptom is pain along my ear canal. I have what seems to be a permanant sore and dry throat and it gets worse when I open my mouth or chew. I can never get enough sleep so I am always tired no matter if I got 9+ hours or not. My joints ache (and there is no relief from this) so I take a mild pain pill every 6 hours that does help a little bit. Headaches, blurred vision, shakes, increased heartbeat, light-headedness - all things that I will most likely experience in a regular day.

I have had blood drawn to test for arthritis, RA, heart condition, anemia, vitamin b12 deficiency....the list goes on. Nothing has come back positive......I am sure that the meds I am taking are reaking havoc on my inner self.

This damn disease is so not fair. The meds are so not fair. The suffering through something until your doctor can make time to see you, is so not fair. Some would say "Life is not fair, it could be worse" but I want to say that no one should have to be in pain without knowing what is wrong unless his/her team of doctors have been working round the clock to make sure thatv they find and try to fix what is wrong. Sure, it may sound easier said than done, but I have to fight for every appointment I can get with my GI doc and I am told that he is the best on the coast....so I try to remain patient. I just want to not hurt anymore. I want to wake up feeling refreshed for once.

Sooooo, now that I am done complaining (mostly because it hurts to just sit here and type and my headache is preventing me from looking at the screen) I shall say bye for now. Hopes that the next time I am writing here I have some positive stuff to say.

Oh BTW, my bum is the only normal thing about me right now. Hooray for that! :ylol2:

 

[D Bergy]

Do you have a Magnesium deficiency? Or is that something they did not check for.

D Bergy

 

[Crohniac]

I am not 100% sure. It is something that I shall look into though. I will leave no stone unturned!!!!! I will see my gastro in July and have him run nesessary tests that my Primary provider missed that relate to possible Crohn's related stuff. We'll see how it turns out!

 

[Kev]

Dealing with constant pain? Been there, done that.. Whatever it takes for you to either get a moments relief, or simply to take your mind off of it.. you go right ahead!

For me, I started writing.. It didn't take the pain away, but it stopped me from always thinking about it.. You know, counting down the minutes to my next pill (not that they worked very well - gave me about 1 - 2 hours of pain relief - even then not all of the pain went away - but enuff so I could grab a nap - but they constipated me and that led to even worse pains later on - a viscious cycle)..

Sometimes, I don't think our doctors get it... Perhaps your next visit the thing you want to concentrate on is really getting the message across to the doc that what you REALLY need at the moment is locating the cause of the pains, and alleviating those that can be.. (without the side effects of pain meds making things worse)..

hot baths, comfortable sleeping environment, or just ranting on here when you've got to.. like I said before, whatever it takes to get you thru the day... you go for it

 

[DanSJVDavis]

I hear ya about the pain. Right now they're trying to see if I've got Spondylitis. I'm 'bout constantly in pain in my back and chest. I dread sneezing. The doctor gave me some Tramadol for the pain, but I can't take it for very long as it makes me real constipated.

 

[TammySue62]

TO CROHNIAC
Could you be going through pre-menapause?

Hang in there.I have been dealing with pain everyday also.

So damn frustrating,especially when Your own GI cant help us.

I cant even sit on my bum from having these freagin fistulas.

Having CD can suck big time.

Goodluck Tammy :confused2:

 

[old hat]

Did they do an ANA test?

 

[Clair]

Venting is good for the soul and stops you going crazy!

:ybatty:
I completely understand your vent, this is my first visit to the forum having been diagnosed a few weeks ago! Had cancer recovered and now have Crohn's, if someone knows of a place you can exchange bodies for a fee, please tell me because it seems I got a broke body, no fair!
I don't want to be taller or curvier I just want a body that doesn't require medical attention quite so often!!!!! Grrrrrrr
Getting used to a new way of eating is also a little strange, all the foods I considered 'healthy' for years are now real no-no's, it really is a case of what you can eat (list is shorter) than what you can't eat...EVERYTHING!
As for pain and bloating, I find swimming helps and avoiding gassy drinks....and at a push a very large Gin and Tonic...not good I know but a girl can only give up so much in one go!
Best wishes to you all, thanks for the hints and info, I am learning a ton of stuff!!!

 

[Sojourn]

Definitely not fair to anyone involved. And yes, of course, it could be worse but that's not always a consolation. Strange about the ear canal pain. It sounds like you think a lot of your problems are from side-effects of the medications you're taking. I hope your Docs can help you pinpoint the sources. I just got out of the hospital and have a tube coming out of my stomach to drain the abscess. Very unsightly not to mention the way it's affecting the skin around the incision. And, of course, painful. I'm taking the painkillers to go to sleep at night but sometimes I just enjoy being high so I stay awake. Not a habit I want to develop.

 

[Cara Fusinato]

I have ear canal pain too, but I can directly link it to my cat jumping on the counter and bumping my elbow JUST a I was using a Q-tip to dry out the water from a shower. Dr. says it bruised the eardrum.

I feel the same way about this. NO FAIR! Pain at times, diet restrictions, and the likely slow closing off at the stricture point until some day, surgery. NOT FAIR!

However, since I am being positive this week . . . it could be multiple sclerosis or fibromyalgia or ALS (Lou Gherig's) or Huntington's or cancer, so I will shut my mouth and deal with the little discomforts.