Ive tried my hardest to do it on my own...but now i must ask for help.

[DaNa WaNa]

WARNING ITS KINDA LONG...SRY :confused:
okay my name's Dana and im 16. I got diagnosed with IC 2 years ago after 2 surgeries to remove an ovarian cyst and the ovary bc it was the size of a grapfruit and had twisted twice. No one though i would have IC and the doctor was shocked that i did. We liked my doctor that first diagnosed me so much, she was a little weird but she knew about IC. After the hurricane she never came back so we've been forced to switch doctors 1-3 times already. I am my doctor's only patient with IC and have been for many many years. We know he doesnt know much about IC bc he is a kid urologist. He doesnt know what treatments to do or anything, basically we tell him more than he tells us. And he actually came in to my hospital room the other day [[ill say about that later]] and proclared "DID YOU KNOW THAT FOODS CAN CAUSE FLARE-UPS?" yea that was on the paper we got the first day! This me friends is the genius were working with. Anyways, we like him and he is trying to help. He said i need to go to the hyperberic chamber and give that a shot. which we are. and thats helpful.

Anyways: my IC is gettin worse and worse as the days progress. in the past month i have seen me go from bad to worse in a heart beat. I havnt been to school except for the first day [[which if you know me i loooove school and miss it greatly]], i can barely move around at all without getting worn out. I have migranes, IBS and other pains as well...all of which have gotten extremely bad. my migranes have become unbearable it seems. Im having all these weird symptoms that we cant understand..which is one reason for posting..maybe yall have them too?:help:

headaches
really really bad muscle spams...unbearable muscle spams
nausea//vomitting very frequestly it seems
EXTREME fatigue
blurred vision. When i move my eyes go black, i get a back pain in my head and i fall alot.
rash...[[we think thats from a med]
worn out from anything. i got worn out from playing monopoly the other night so bad.
cant sleep..at all
tingling down my right arm, pains between my shoulder blades
bad bad lower back pains
muscle tingling
dizziness
muscle twitches
lightheadedness


basically things like that. theres more but ill stop there. and we cant find out why i have them. When i say easily worn out i mean i go to the kitchen to get water and im absolutely pooped. my dizziness/falling and such have gotten bad lately. my muscle spams are soo bad. At my aunts just 1 1/2 mths ago i got into a bad spell where i would have spasms so bad that you culd see them bulging out of my skin, then i would throw up and then go into severe stomach pains..then start over. We know that my IC is getting alot worse, whoever says it doesnt progress..for some ppl it does. Now vibrations from cars and music send me in excrutiating pain, i got more frquently, my pains are getting more severe. we all know its gettin worse. out of the past 3 weeks ive spent 2 in the hospital in severe pain. and i take my pains and shut up about em as im sure yall do so me complaining is bad. I wound up having my 3 surgery so far bc they thought my blood flow to my ovary was cut off and they flipped out since it was my last one and all. but they said my ovary and everything was fine. One of the nurses says she has some of the same symptoms and has lead poisoning so were going see a dr for that. My mom is taking me to all my drs, and helping me soo very much. Shes the only one that believes in me constantly and now if i tell her something is wrong she knows somethings wrong because i am very "hypersensitive" to my body as drs say, as im sure yall are. I know somethin is wrong with me but we cant find what and im literally physically and emotionally exausted. Im actually not depressed as i was though because in the midst of all this i got closer with God and realized, and i hope this help yall too. And now i use this quote constantly to tell ppl "Though i ma be physically and emotionally deteriorating...spiritually i am more alive than ever" bc i now depend on him. so see good things do come of it! But i want my life bad. i feel liike im bowing down to this and its not me. No one really knows how bad off i am exept my mom really bc i hide it most of the time bc i dont like ppl thinking of me differently. The instillations stopped working really a while ago, the meds dont help much anymore, They are going to do the hyperbearic chamber and then my mom talked to my pediatrician who says that he is talkin to my doctors and they want to put a nerve block in my spine. [[which im a little worried about cuz im only 16!]] theyre trying to help, and tryin to find out what else is wrong. But they dont wana give me any more meds bc im already taking atleast a manditory of 18-20 a day plus my PRNs. Basically i dont ask for help much, and im only complaining on here becusae i know that yall understand me more than anyone else does.

So basically:


does anyone know what the weird syptoms may be from?
do yall have them?
do yall know any other treatments?
is yall IC this bad too? bc ppl ive talked to ppl and they all say no and mine keeps getting worse and idk how much longer i can hang on before i have to let it take over me completely


Thanks so much for everyone. You are all in my prayers for i wouldnt want to wish this pain on anyone..and if i could take all of your pains away and take them as my own i would gladly do so in a heartbeat. I hope yall all have better IC filled lives than mine. Im praying!:pray: And in time...i know we can all beat this even if we still have it, we just have to help each other.. which is what this chatting is all about. So thanks for whoever thought of this great idea and thanks for all who help so many others everyday. Yall are the best!

love yall!
-Dana :angel:

[ICNDonna]

It sounds like you have something besides IC going on. Have you seen a doctor of internal medicine? It's possible that part of your symptoms are medication induced --- if you're taking all of those meds in the same, that could be the fatigue problem. You might take a list of all of your meds to your pharmacist and ask for a list of interactions and side effects.

I hope you find some answers soon. You sound very miserable.

Warm hugs,
Donna

[ShePurzz]

Great post from Donna --- I agree with all she said and suggest you see and internist asap. It sure does sound like more than IC. However, with the muscle spasms -- I also get these horrible and they bulge and I do sometimes get the nausea from the pain of that... I get TORADOL injections for them -- I have also had "PROLO INJECTIONS" which work well and is not medication -- the doctor used a sugar water to inject into the joints where there is pain -- if you don't have joint pain *I have this from younger year accidents that damaged a couple of joints, as well as an auto accident where my wrists were fractured*

In the joint, the sugar water injection acts as an irritant -- it hurts for a couple of days if they got it good -- but you don't take ANY anti inflammatories -- you want your BODY to produce the healing power *your brain thinks there is a problem and sends out natural fibro blasts to heal that area naturally* and you end up getting 'natural medication' sent to the painful area -- the results are amazing and often one or two treatments does the trick -- this is permanent healing to these areas.

In the muscle with spasms -- the doctor doesn't even really need to inject anything, but often uses some saline -- it is poked into the spasming muscle and that helps the muscles to untwist and relax -- I have had this done on my neck and shoulders because I get horrid spasms there -- basically we think it is from the fibromyalgia, but because it comes so often, I think it is more anxiety and stress related -- don't really know exactly WHY I get it, but I do get powerful relief with these treatments -- neither involves medication so there isn't a problem for the bladder.

Regarding the muscle spasms and migraines, I have had TORADOL injections -- however -- this medication is very painful when you are getting it -- ask the nurse to inject it SUPER SLOWLY and the pain will be much less than if she just shoots it in -- picture a dog with very sharp teeth biting you in the rear end -- it is horrid if injected quickly!!!!!!!

I strongly urge you to take Donna's great advise above and get another doctor to look at you as a WHOLE -- that's an internal medicine doctor -- and they will look at all of your problems and help to sort what pain/problem is coming from what source.

I hope you will feel better soon and try the deep breathing techniques that I posted on another thread -- just search on BREATHE and you should find it. It got a president's award -- so hopefully you will find it there. Also, for sleep, I posted another about Sleep Hygeine and you can also find that in the presidents award thread -- it will give you some really good stuff for sleep -- IF YOU CAN IMPROVE YOUR SLEEP HYGEINE, you will surely get better sleep which is nearly always the reason for SOME of our problems -- especially the fatigue and fibromyalgia.

I do hope you feel better soon.

God Bless you with a great day!!!
Mary
(Shep)

[kadi]

Also agree with Donna. Have you had a complete workup, with comprehensive blood tests? And talking with the pharmacist about all those meds is a great idea also. It's a huge amount of medications to be taking all at once... Hoping you find a great internal medicine doctor & are on the way to recovery soon!

PS. Have you got a home teacher? You will want to set that up with your school district soon if you are unable to attend classes at your school. You should have your parent call your counselor to see what paperwork needs to be collected from your doctor & what needs to be filled out to keep you on track for graduating with your class! If you are ill, it is probably better to do this than "independent study" - I've had a number of students do independent study, but it's really designed for students who are in class, but take a short trip. Some subjects just can't be learned without a teacher's help (like foreign language).

[Tabbi]

There could definitely be some drug interactions, especially related to the fatigue. In addition to blood and other tests (Lyme disease-that's common where I live), also consider other therapies like chiropractic or acupuncture. I don't think they can cure on their own, but they help a lot with the symptoms.