flare dragging on and on

[trytosmile]

Hope everyone had a great holiday. Now to the punch....I've been suffering from a 24 / 7 &$#(& of a flare for about 2 months now. I've been to my urologist to see if UTI and no. Where do I begin with the discomfort list. Pain is horrible all the time. IVoiding was easier earlier and now much harder. The muscles in the bladder and surrounding area are so tight when I void it is drip, drip, drip (for lack of a better term). I'm coming to the end of my rope. I'm one of the unfortunate patients where I'm not finding a treatment that has give me any substantial relief. I'm currently on my 18th type. What I am on helps but I still suffer daily with pain and discomfort. Headaches are now in the picture but guessing more a tension headache than anything. Low back pain increasing which isn't helping injuries sustained in a serious motor vehicle accident. In a nutshell folks I'm a mess right now. Hoping somebody out there will have a suggestion that I have yet to try. Me and my heating pad are best friends right now. Need to get this under control as it is starting to control me. Yes I know, don't let it but as I'm sure you all know that is sometimes easier said than done. This is how I started out with my IC, pain and discomfort 24/7 and then it went to good days and bad. I'm just scared I'm heading back to the 24/7 days and that isn't where I want to be. 2004 wasn't a fun year and I want my life back NOW. :cussing:
Thanks for listening

[vm]

I am so sorry to hear you have been feeling so badly for so long.... :( :( :( I don't know much at all about PFD, but when you spoke of how tight the muscles are when you urinate I wondered if you do have that. Would a muscle relaxer help at all or would it lead to retention?

Any chance you'd feel up to listing what meds you are on or have tried? It might help in terms of feedback.

I hope you find some relief soon. :kissing:

[trytosmile]

What is PFD, I've often wondered if not more going on down there. Treatments that I have tried are ...

Nova Trimel
Elimiron (the drug from hell)
Apo Oxbutynin
Premarin Vaginal Cream
Nitrofuantoin
Bladder hydrodistention (twice)
Clonzapam (for anixety, currently using)
Intravescial Heparin (twice)
DMSO
Ditropan
Phenazo
Ranitidine
Gabepentin
Cystocoscopy (4)
Potassium Sensivitity test
Pelvic Stretch
Amitryptyline (currently using)
Bextra
Hydroxyzin (currently using)
Cyostat
natropathic medicine and acupunture

I'm sure I have missed a couple throughout the years. When first having the problems I went to almost every specialist out there to eliminate all other potential possibilities. Ugmentation has been talked about but hesitant to do because of an already sluggesh bowel system. On top of all this I have an under active thyroid so on medication for that too. Lucky I have that under control. Just trying to keep spirits up, hard some days but push myself or I'd drown by all this.

[michelesgirl]

so sorry to hear you are feeling poorly...I watch my daughter struggle 24/7 with pain...no problems urination or burning...just body pain...extreme..
I'm courious as to why you stated Elimiron was the drug from hell ? My daughter has been taking it for almost 2 months..so far no improvement. She is taking amitrypline and hydroxyzine too..not to mention her oxycontin and oxycodone around the clock...she stays in her bedroon on a heating pad all the time...no life, just turned 21 last week. Can't hold a job because of the pain...anyone out there know if I can get her any disability ? we live in Maryland..Right now I am paying for her health ins. through Vobra from her last job but that runs out in 4 months...I pay all her other bills and her meds..thank God her ins. has a good prescription plan for now...

She cries everyday...mee too....

[hurt]

I have a lot of low back pain and I take baclofin ( not sure if this spelled right) is relaxs the muscles and I have IBS,IC and PFD. I take it once in the morning with my effexor and Two advil and I take it at night before I go to bed with my 2 vistirls (sp) and premaruim. I also drink 5 nestle bottled waters a day. If I dont do all of this everyday I will have a flare and then I have to go to bed and get on my heating pad and take Ultracet for pain along with everything else I already take daily. My husband and sons know if I say I need my heating pad to leave me alone until I start moving around or talking to them. Oh, I also take 2 10 baths a day in hot water and soak with the whirlpool jets going. So I can relate and unless someone has ever known what it is like to live everyday not knowing what will cause you to flare and hurt so bad sometimes you even think I would rather die than live with this forever, they cannot and we cannot expect them to understand what we deal with on a daily basis. So I said all that to say this, yes we get down but thank GOD it always eventually gets better for a day, a week, a month or even a minute and its those times that we can look forward too.... YOU DONT KNOW WHAT IT IS LIKE TO FEEL GOOD UNTIL YOU HAVE TRULY BEEN SICK. I love the times I feel good and I make sure everyone around me knows and enjoys them just as much as I do....

[trytosmile]

Elimiron...drug from hell...why you ask. It could turn me from Cinderella to Sybil in 2 seconds or less. I was on the drug for 6 months in total, finally my urologist took me off. It wasn't helping with the IC symptons and I was suffering very much from the side effects of the drug. I have a low tolerance to medications and I'm required to take the minimum doseage, which makes medication less effective. i suffer on a daily basis from body pain, urination pain during and after voiding, burning pain...the list could go on but it is to long and to depressing. I am on disability myself and have been for over two years now. Doctors are not optimistic that I will return to the workforce. That is hard to adjust too. I am only 39 and had a management position in the financial workforce. My job consumed most of my day and I loved it. Now I have to put in the hours and it is very hard. I've had to give up all the sports I loved to play. But having said all that I try to think positive and create a new day for me. No I can't work, no I can't play baseball but there are other things I can do. Hard to accept at times but I just have to remember I'm alive and I can survive this. Your daughter is in so much pain has she been to a pain specialist? I went to a pain clinic and to a pain phycologist. Both gave me some ideas to try. I think half the battle is in the mind. I know first hand sometimes easier said than done. give your daughter a huge hug for me. I know what she is going through. It isn't fun and yes effects the world around her, she is lucky to have a mother that is there for her. Hugs to you too. If she feels like talking let me know and I can pass on an email address. sometimes just talking helps.

[michelesgirl]

I think Christina is experiencing the same side effect from Elimiron...she is extremely moody...I thought is was a personality change due to all the narcotics...oxycontin is known to make people mean...of course if I had to deal with what she does every blessed day I'd be mean too...She is seeing a pelvic pain specialist and I have been trying to get her to go see the pain psychologist I found...
I guess we have a long road to go before we can figure out what works for her...the diet is soo hard...I wish I had someone to make me a menu of what to make everyday for her that is IC friendly..I have the list of foods...I guess I'm overwhelmed..

Michele

[trytosmile]

This is very overwhelming, don't try to understand it all at one. Yes, diet is so important and is different for everyone. In the IC website. www.ic-network.com you can purchase a cookbook, A Taste of the Good Life. I found it very helpful. Some other books of interest that I have purchased and read are:

A Headache in the Pelvis
The Interstitial Cystitis Survival Guide
Managing Interstitial Cystitis and Overlapping Conditions

All helped me alot. I have others but unfortunately I can't remember the names and they are in a storage unit with the rest of my life. I'm in the midst of redoing a century farm home (well the contractors are) and all my belongings are in storage. I've so many books that have helped me through all this and are good tools to refer back too when needed.

[baybiker]

Hi all-

I just had a hydro and the doctor burned a lot of scar tissue off (1/3 to 1/2 of my bladder capacity was filled with it). I have spent the last month on the couch. Now, I'm starting to feel human again! I am on Detrol, Oxybutin, and I just went off Pyridium. I was taking Vicodin as needed. The things that are helping me (besides the meds). The IC diet has helped. It's difficult, but worth it. If anyone complains about how difficult it is, they should think of me. I was a vegetarian for over 20 years. Now, I've figured out that all soy products (including tofu), beans, and nuts bother my bladder. I have had to change my entire way of eating.... chicken sure does taste fleshy. But, as selfish as this sounds, I feel more important then a chicken.

Exercise has helped a lot. I tried to walk 15-20 minutes a day. Every step, I felt like a had to pee. It wasn't fun. Some days I could not do it. But, it helped my back a lot.

Baths, sometimes 3 a day (I'd sit in there for 30 minutes to an hour at a time). I still am taking at least one per day.

Heating pad, my best friend (following my husband).

I stopped all vitamins,except Calcium.

Meditation- it might sound silly, but I believe in God, and I try to build a relationship with her every day. (And, I feel it doesn't matter what you believe in- God,Allah, Buddha, the universe- we all are traveling up the same mountain, we are just taking different paths. Just connect to what you believe in- even if it is just yourself.)

Having a support group. This group has helped me a lot. There is also a chat that goes on every other week. I feel very lucky to have the IC-network.

I'm also going to try thouse self-hypno tapes that the IC-network sells. I would love to get off the meds.

Am I still in pain? Yes. But, I'm up to 45 minutes on the Precor now (low impact running machine), and I plan to go back to work next week. I'm hoping that I'll be OK. But, as the saying goes.... "Man plans, God laughs".

:)

I hope this helps,

-Traci

[vm]

Here is a link that talks about pelvic floor dysfunction (PFD):

http://www.ic-network.com/iclifestyles/april02.html

Also, if you go to this link it will let you use google to search our site for info:

http://www.ic-network.com/search.html

[vm]

Hey, Traci - I like your style. I have often said I believe most of us are taking different paths up that same mountain. :)

[trytosmile]

Want to thank everyone for all their support and recommendations. Thanks for the information on PFD. I can relate from what I've read so far. Will discuss with my urologist at my next appointment. I go once every 6 weeks so coming up. This afternoon is a bust. I have about as much energy as a turtle. My kitten is making me even more tired watching her play. Man I wish I could have an ounce of her energy.... lol

Thanks everyone