Bad News From 1st Physical Therapy Visit

[ibtracy]

I went to my first physical therapy visit and had the vaginal probe test done and the therapist said that I should be at a 45 and I'm measuring at an 18. She said I severe pelvic floor dysfunction but can be helped with extensive therapy. I have to go 3x per week for a month and then twice a week for quite some time and then down to once a week. She said since mine is so bad I'm going to require more therapy than usual.

She also did some trigger point testing for Fibromyalgia and altho she cannot diagnose this she's 99% sure that I have Fibromyalgia on top of IC, IBS & Severe Pelvic Floor Dysfunction not to mention my depression issues and chronic anxiety. I spent the evening last night crying on the couch because I just can't handle all that's going on. This whole IC thing is just more than I can handle right now and my marriage is hanging by a string. I'm hanging on for dear life and have about gotten to the point where I'm ready to let go. I can't give up for my girl's sake, they need a Mom.

It's so hard to deal with all of this. I'm still trying to recover from my hydro/cysto and I've got Bronchitis and Sinus Infection that I'm fighting with all of this yet too.

I need strength, too bad someone can't give me a pill for that or to get over this emotional overwhelming hump that I'm in right now. I just want to curl up and wish life away right now. I just don't understand what I've done to deserve all this suffering. It's getting really hard to handle all of this alone and my husband is in total denial!

:help:

[JAMIEL]

Well I am sorry that you were so discouraged by your first visit. Actually, I would say that something positive came out of it...HEAR ME OUT! LOL... IF you have PFD that badly, that should mean that a great deal of your pain, frequency, urgency will be coming from it. Once you complete PT maybe what you will be left with is very manageable as far as the IC goes...Does that make sense??? I also am just starting PT and my doctor feels that a great deal of my symptoms may be coming from the PFD because it is so severe. Once I calm down the pelvic floor my IC may be able to be managed better. My doctor is Dr Moldwin and he is wonderful!!! So no matter what meds I am on for the IC, they will not help the PFD...therefore I need to treat the PFD as well....Does that make sense??? I may not of explained it right but try to stay positive...It may take a while but you will get better. I have been doing the Estim machine at home everyday and I have noticed a difference with the frequency/urgency issue. Has your PT suggested Estim. My insurance does NOT cover it but it is worth the $100 for the month to start to feel a little bit better...

I hope I made you feel a little better...I am sorry that any of us have to go through this but just try to take each day as it comes....

Hugs,

Jamie

[ICNDonna]

I'm thinking that you may be fortunate that your biggest problem right now is the PFD --- because it can be helped. It may take a while, but there's light showing at the end of the tunnel.

Warm encouraging hugs headed your way,
Donna

[JAMIEL]

Donna said it a lot better than I did....LOL :bonk:

Hugs again!

Jamie

[shennan]

hang in there, girl.

i also started going to a pt. she is really nice. it hurt really bad today. she massaged around my belly button. wowowowowowow.....
it will be long road, but we are all here with ya. with these same directions that look foreign. my right arm hurts with spasms/ache/pain/shakes.

good luck...

gotta go lay down. my back hurts too.
took a pain med.

:)
sorry....
:cat:
shenna

[Sarojini]

:(

Tracy, I'm so sorry to hear that your PFD is so severe ... however, the others are right in that the PT will definitely help you out. I know it's going to be a pain in the :toosh: to go that many times a week, but it will make a difference eventually. As you know, I've been going to PT as well, and I really do find it helpful ... at first, it may make you flare up a bit, but after that you may be surprised at how much better you feel. I know I was!!

I'll talk to you soon...

[work it]

Tracy, you silly girl you are not alone, your husband my not be supportive of you right now but you have a cheerleading swad right her cheering you on through the internet :woohoo: You can do this Tracy. I am very sorry you are having such major discomfort but like others have said there is light at the end of the tunnel. Life isn't fair at times and we often wonder how much more we can handle (and not to get all religious) but the lord must think that you are very strong and knows that you will be able to come out of all this eventually with a smile on your face. Remeber we are all just a click away with the mouse. I am not far from you remeber and if you need help with ANYTHING let me know. :)

[windwalker]

Tracy, just remember, it will get better!!!!!! :) They are able to help you, may take time but the pfd will get better. Take care of yourself
Dawn

[ibtracy]

Thanks to all of you for replying to my thread. I guess now that I've read your replies, maybe it is promising that with therapy my IC pain and other symptoms will be more managable than they are currently. I guess I never thought of it that way. I think it was the shock of finding out that I do indeed have 2 more illnesses or problems. I was only looking at the negativity of things and not seeing "the lights at the end of the tunnel" that you've all turned on so brightly for me.

I don't know what I'd do without my IC family and the special friends I've made through this site. I thank you all so much! :)
Tracy K.

[AAF]

I really hear you. I don't have IC, but I have a very bad problem with PFD. I also have a very bad problem with migraines and the pain from that has left me emotionally drained. In addition to that, I have lupus, fibro symptoms and depression. It's all a bit much! I went to the psychologist today and she said to tackle one thing at a time and to concentrate on what is going to make that pain get better. She encouraged me to work with the PT to get the PFD symptoms under control and that is what I'm doing right now. I don't totally understand PFD though and there is only one person in my town who even does treatment. Anyway, I hope you can get as much support as possible and keep working at pain control. Last year I got my PFD under control after a few months of diligent treatment. I'm hoping I can do it again this year. Thank goodness there are folks who understand this problem. Blessings and hugs.

[Miki]

It seems there are no PT's in my town that do the PFD work.
When I heard about it, I called around. No one knew about it. But I do see a new URol on Fri. I am so scared to go. I am not sure I can handle the flares from the PT>

I just finished the book "a Headache In the Pelvis". I found the book to be very discouraging. I didn't like it. Esp. things like, if you are on Narcoctics it is rare that these messures will help. I don't understand. It is as if, if you have a low incidence of occasional flares, and not 24/7 discomfort as I do, then this is not the type of therapy for me. It doesn't make much sense.
I am so darn depressed by the whole family, husband situation that it has kept me more in bed. I know we all have the same problems, and wish that our spouses could understand the problems and pain we are in.
I surely don't have the answers, I just know that reading that book made me even more uncomfortable. It made me think, well just another type of therapy that won't work for me.
I am on the patches, and they really help my pain. I am trying out my own version of IC diet. I have taken out a lot of other things that were in my menieres, IC diet, because I was in flares for over 6 weeks with occasional 2-3 point days. Most of the other days were horrid with 6-8 points. It was nasty.
I seem to think maybe what I am doing is helping, since I haven't had a bad flare requiring break through meds for almost a full week. That is really good.
I know I have some PFD, and know that there are some very tight tendons and muscles in the vaginal tract. I think I would be scared to do the PT, for the flares, but if they worked after the flare went down, then I would be thankful.

Hang in there, and if you can get relief, that is so good. Obviously, others are doing so, therefore you should too.

Miki

[Iris5]

Miki-

I was so sad to hear that you were disappointed by the book, A Headache In The Pelvis. I too have read the book and have also met with Dr. Wise on one of his retreats. I believe that Dr. Wise is open to anyone trying his ideas, even those who take painkillers and narcotics. In fact, many of the patients that I met during these sessions had been taking high dosages of pain killers, but were looking for some other type of relief or way to lessen their meds. This included one patient who had suffered from Prostatitis for many years, and had been taking 10 Vicodin everyday. When I met this patient, he had been doing physical therapy for several months, and had just begun Dr. Wise's practice. Miraculously, by the time I met him, he was totally off painkillers.

Dr. Wise himself suffered from the chronic pain disease Prostatitis, and is an extroardinarily sympathetic individual. It was after hard work with physical therapy and relaxation techniques that he found relief. I think your words are a complete misinterpretation of his work is, and would encourage you to contact him.

I think that If you think his techniques might help you, I would strongly encourage you to try them. At the very least, they may provide you with a minimum amount of relief, even if it's only for a few minutes. I myself found these few minutes to be very encouraging because at that time I was not finding any relief from any source except from Vicodin. To know that I could find even a few minutes of relief, drug free, just from relaxation techniques gave me a window of hope that my body would one day find longer stretches of relief . Now, with the help of medication (I've taken 4 per day for 18 months), strict diet (18 months), physical therapy (for the past 3 months), yoga 3x per week (for the past 3 months), and relaxation techniques, I find myself to be highly improved. I know it may be a long road, but I still hope today that with dedication and hard work, I may one day be free of all of my symptoms. I also think that one of the hardest parts of this disease is having the patience to stay with any one (or in my case many) treatment paths over the long haul, but it is really the only way.

I hope that all of you consider other options in your own path, and hope that you find that path that helps you!

[Miki]

hi,
I just felt that the book left me feeling incomplete. I wanted guide lines of how to do things. So I could try them.

I live in SLC, UT. So going to stay for weeks in SF is not in the cards for me.

I saw a new Urolo. Fri who was a total jerk. He kept pacing the room as if he wanted to get out of there and not deal with me.
I have had this "thing". (I tried to get him to actually say IC yes, IC no)
He said you have already seen 6 URologists, have had everything done, what do you want me to do?
He didn't suggest elavil, I brought up the trigger point PPD, and he went
"oh, I have information on my desk about a group that is doing that here in town"........YES! I said, can I get the info.
He brought to me a small green post it with a name and tele. on it.
I called the number and got a fax line! Great, I sent a fax to the number, and have not had a call back. Gotta love docs who are so concerned about getting things right.
He finally told me I had IC but mainly in the ureathal track, so that is what I should diagnose myself as, (call what I have)

He said that he could scope me again, but what is the point when another doctor did that 3 or so years ago.
One thing he said was the bladder can get smaller and hold less as you get older. Maybe that was why I was only blown up to 300 cc.
If that is the case, when I am not in a flare, just feel my not normal self, I can hold 4-8 oz of urine. What is that.???

He talked about trying Elmiron. I said why? My bladder seems to be able to stretch, and E. is made to heal the bladder's GAG layer, which causes so many people so much pain. I don't have the bladder pain. I feel like I have an infection and am on 3 days worth of antibiotics. I am at this point 24/7.
I always feel like I have to go.
He suggested doing a bladder dilation, I said I have already trained myself to hold my urine for 2-4 hours when I am "normal".

I am sure he was frustrated with me. I have had this for 22 yrs or so, and I am just wanting a Uro who is caring, and up on the new things.
I knew more than he did.
But then I am a ***** at times. I didn't like how he was walking around, not taking a history, not checking in with my feelings. I know there is little he can do for me. I just felt I should have a Urol incase I get infections or my flares get worse.

Of course he asked if I had DMSO treatments yet. Heck I had them back 19 yrs ago. They helped after I finally came out of the hell of pain that the 2.5 instillations caused me.

He said "you are a difficult patient". I think he meant, don't see me again!

OH well.

I was hoping to try the trigger point therapy, and was sort of angry that the book was really geared to males with IC. That would be good for them, since they have so little support since women are the ones with it mainly.
PPD, who knows.

So, if there was a retreat or something in SF, I wouldn't mind if it was a few days. But I can't stay for a long time, esp. if the trigger point stuff gives me major flares. Which I am sure they will.

congrats on your getting so much better.
I guess we are so individual.

bek : :mad:

[JAMIEL]

Miki,

I have been seeing an amazing PT that was recommended by my uro (Dr Moldwin). She is fantastic! I asked her how others would find a PT in their area that can treat patients with "IC" or "Pelvic Pain" and she suggested this website:

www.pelvicpain.org

Just go to "Find a Provider" and there are two PTs listed in Utah.

Hope that helps. I don't know how up to date the website is but if the names listed turn out to not work out for you I can ask my PT for other suggestions. She does a lot of traveling around the country lecturing and attending conferences on pelvic pain etc so she may other ideas.

Hope this helps!

Jamie

[Miki]

Jamie,
Thanks, I have contacted via email one of the docs, and one of the PTS.
I left another message with the other PT.

Thank you so much for this info, and the site. I had never heard of this site before.
I do know that the U of U is not on my med insurance, and that might pose a problem.
We shall see if they can even do anything for me. They might just blow me off as the new Urol did. Who knows.

You are lucky that you live in the NY area and therfore can get to see Dr. Moldwin.
I believe he is at the Long Island Jewish Hospital. That was only about less than 30 mins. to get to from where I grew up.
If I was still in Great Neck, LI, NY it would be an easy jaunt to see him, but I moved to Utah in 71, and so I am stuck with the world that is 30 yrs behind times.
(I can't believe that I have been in UT. longer than I lived in NY. Heck, I still consider myself a displaced NY'er.)

You were very kind to give me this information.

Miki

[Miki]

Jamie,
LIJ, I think is called the north shore hospital now. Shows how old and how long I have been away from NY.

Miki

[JAMIEL]

Well not to make you feel any worse but the awesome PT that I see is in Great Neck...It seems none of this can be easy for anyone of us suffering. Sometimes that the most support and understanding comes from complete strangers. (This board). I hope that information I gave you leads you down a better road and please let me know if there is anything else I can do. My PT is wonderful and would be happy to pass along any information that she can.

Hugs,

Jamie

PS: The hospital that Dr Moldwin is at is still Long Island Jewish but it is now part of the North Shore Health System or something like that...

[Miki]

Why is the world so small sometimes? Wow, your PT is in Great Neck.
That is so bizarre. Just that weird connection, of your giving me inform. and you are seeing a Pt where I grew up. It is not a big city, or anything like that, but it is a hike for you from Jersey.

I have contacted the doctor on the Website, and the PT's.
I actually found another PT who is doing the work in my own Pain Clinic!!
Go figure?
It was so round about, I don't know if she will be covered on my insurance, but I think she will, since the pain management clinic is covered, and they do all sorts of stuff under that umbrella, even tho the docs etc are really on another insurance. It is too complex for me.

I get to see the new PT on Mon next week. I hope this might give me some help. I am so afraid of getting my hopes up. Sort of like the new Urol. I had hoped he would be kind and caring, instead I wait 1.5 hrs+ and he doesn't even act like he is listening to me. He was very disingaged with me, and paced around his exam room like he wanted out really fast!
Maybe he did, after all he was 1.5+ hours behind.
I am sure that would make me nervous too.
I will give him one other chance, and then I will complain.

I have an appt in 6 weeks to see him, and see if the PT stuff worked.
I thought he would just say bye and good riddance, but he wanted to know the results.
IC is so tricky, I guess anything that might help me, could possibly help his other IC patients. I just hated the way he treated me tho.

With faith that he will be better the next time I see him.
And with faith that MAYBE, just maybe the PT can help my pain. :hmm:

Miki/bek
I thnk I signed one of my posts with my usual ID: bek.
I use my real name on here, get confused! :hmm:

[Iris5]

Miki-

Dr. Wise's workshops are only 2 days long. During the workshops, he goes through the relaxation process many times, so that it is demonstrated to you and you get the hang of it. And he's from California, so I would be surprised if he didn't have a workshop on the West coast sometime soon. Although Dr. Wise's book was geared toward men with prostatitis, I think he feels that the same premise can be applied to women with IC, because the muscles and tissue in our pelvic region radically affect how that entire region feels. I believe that when one of our organs is sick, the muscles and tissues around it begin to "guard" that organ, causing a domino affect of contracting and tightening all the muscles in that region. In addition, these muscles and tissues tend to tighten up more when we have any physical or mental stress. I believe that this is where the majority of our pain comes from, so if we can learn how to relax those muscles and tissues, and return them to a normal state, our symptoms will be drastically reduced if not put completely into remission. Why else would so many people suffer the same symptoms after their bladders have been removed?

Of course, no one has the answer to this question. And I think that one day they will find that IC is really many diseases, not just one, and that there won't be just one cause or one cure for everyone. That must be why there are so many different routes to remission for so many people. Why not try them all?

Do you ever notice a link between an increase in symptoms and physical, emotional or mental stress. I believe that some people feel stress in their shoulders or neck. I just feel it in my pelvis. Whenever I have a stressful day at work, I feel worse. When I go to my physical therapy, practice relaxation techniques or yoga, my symptoms dramatically reduce. Do they totally go away? No. But they are reduced, and something is better than nothing.

My symptoms sound pretty similar to yours. I usually feel like I have to go, or like I have a bladder infection. When I have a bad flare, I pain and have to go a lot. But generally everyday, I just I have an uncomfortable "itch", I guess it's like pressure, it's hard to describe. But best described as feeling like I have a bladder infection. Of course, I never do. It's just the IC.

When I was first diagnosed, my flares were a lot closer together, and when I had them, the pain was very bad, I had to go every 20 mins, and I would often cry.
Now my flares are a lot further apart- I have learned to manage them through diet and lowering stress levels and exercising. Of course, I still take 4 medications everyday - Elmiron 3 pills, Pyridium (1 pill to help control the "itch" when I'm at work), 1 Macrobid to prevent infection and allow my bladder to continue to heal in a calmer environment, and 1 detrol to control spasms. But my 2 doctors, and 1 PT are hopeful that I will be able to wean myself off all of them by next summer. I think all the things that I am doing - coming at the IC from all angles (diet, exercise, physical therapy, and medication) have all helped together. It's hard work - I don't know if only one of them is helping or a combination of everything, but I am determined to stick to it, and see it through.

I can see why someone may be cynical about trying alternative therapies. I know I was very skeptical. They seem pretty touchy-feely, and alternative therapies are not highly recognized by doctors. We live in a society that tells us that medicine and operations are the only way. Well, operations and medicine by itself didn't work for me. The first doctors that I saw didn't have any alternatives for me other than medication or more surgery. I wasn't getting anywhere. So I decided to take a more proactive role in my healing - I was tired of surrendering myself to doctors all the time. I sought out new doctors, and new therapies. Because of this, I feel better emotionally, I feel more in control of my life and my health. And I have a much brighter outlook on life that is full of hope. I really hope that you consider trying some of these other options. After all, what do you have to lose?

[Iris5]

Oh Miki, I almost forgot. Dr. Wise is connected to Stanford, and he seems to know doctors and PT's on the West Coast. I'm sure if you call him, he would direct you to someone. I also know that he is very willing to talk to patients on the phone. He is busy (there are so many of us), but he will get back to you within a couple of days usually.

Good luck!

[Miki]

hi,
Thank you for the reply. I so appreciate it when someone takes the time to help another person.
This will be short, due to dogs crying to come into the house (3 siberian huskies)
And ER is on.

I have made an appt with a PT who does the trigger point, myofacial massage stuff. Plus a bunch of other things.
What the heck can I lose?
I have been flaring on and off for the past 3 months, I can't figure out why.
I have tried changing diet, going off certain meds, then adding them back again.

I just don't seem to have an ans.
I do have a LOT of stress in my life right now, and that could be it.
Plus the fact that the break through meds are not helping.

I took an actiq lollypop tonight for the first time, It seemed to help very quickly, spaces me out, but who cares, I just want some relief.

The new anti-depressant I was given today has urine retention, or hesitation as one of the problems in side effects. DAM. I hope this will NOT be me.

I will wait till after this crafts fair is over before I change the meds.
I might stop one other med again, but I really hate to, since it helps my mood to be so much better.

I must run.

Thanks for all the info.!

Miki

[Iris5]

Miki-

I am so happy that you are willing to give some alternative strategies a chance. I should have suggested, though, that you call Dr. Wise in California or Rhonda Kotarinos (her information is all over this website) before you go to just any PT. She does a very specific type of trigger point release therapy. The first PT that I went to was horrible - I actually was in more pain, and had to stop. I wasn't getting any better. The therapy involved the PT putting a probe inside me so she could see my muscle strength on the computer - I would squeeze then release. Then at home, I did about a million kegel exercises. Although it helped improve my flow, it made my pain worse.. I was really disappointed and frustrated because I thought PT would be my ace in the hole.

Then I found Rhonda. Her PT protocol is quite different the what a lot of urologists use. It is designed to stretch all those muscles and connective tissue back out (read her guest lecture transcript on this website). She maneuvers and massages all of my muscles and tissues from my knees up my back. And my homework is to do a few stretching exercises at home. She also suggested yoga and lots of walking. I now see Rhonda once a week, and I do yoga 3-4 times a week. I practice Iyengar, but hatha yoga should be ok too. Almost all the other types of yoga are too strenuous. You can't rely only on your PT to help you once a week - it will really help to expedite things if you become more active. Gentle exercise is really the best thing. If you don't exercise in between, you will lose a lot of the progress in between your visits.

The first couple of times I went to Rhonda, I was in a lot of pain while I was there (yes there was screaming), but when I got off the table I could feel that my legs and hips were more open- I was not as tight. The first few times, I felt a little beat up the next day - like I had been bruised, although no bruises were visible. Sometimes I still feel a little bruised, but for the most part I feel better.

I don't know if you have insurance or not, but if you do, you will need a prescription from your doctor. PT can be very expensive, especially when you have to go for so long. My sessions are $140 each. I am expecting to go for a period of 12-18 months, although at some point I won't have to go every week, just every other week. But still, it is costly. But if it makes me better, then it is priceless.

Anyway, my point is - try to investigate a little before you choose any randon PT (even if your doctor highly recommends them). Like I said, my first uro suggested my first PT, and it was bad. Then I found Rhonda, and actually picked my new uro solely on the fact that she would allow me to go to Rhonda.

I also wanted to ask you about your meds - what pain meds do you take? Sometimes I take Vicodin (especially helpful when I eat the wrong thing). But I found that when I have physically overdone it, I take Flexeril (a muscle relaxer). Last year I was in a car accident (some idiot rear ended me) - and my back was in a lot of pain. My primary care physician gave me Flexeril and I was surprised to find out that the Flexeril actually helped my IC a lot. This also helped me make the causal connection that my muscles and connective tissue were strongly related to my IC. When my muscles relaxed, my symptoms diminished. That's when the light bulb went on and I really started to seek out a new PT.

Sorry my responses are so lengthy - I hope they help you in some small way. And I hope that you find some relief from somewhere soon. Just remember that you have some control over your disease- you have the power to get motivated to try to make yourself well. Good luck!

[Miki]

hi,
I didn't get to go to my appts on Mon. I spent most all day Sun. at a Chanuka bazzar. We were selling Jewelry (I make), and cell phone covers with crystals on them..Daughter makes.
I was so exhausted from this 8 hour day, I got home, and went to sleep.
I didn't get up (except to eat a little, or take meds, pee etc) for the rest of Sun. All of Mon and I felt really sick on Tues. Today, I am better but still tired. Trying new med (anti depressant, so who knows what is causing what!)
As for what they will do, I don't know. I do know that I am pretty loose with my muscles, had to be to be a ballet dancer. I can still do things other people look at me like I am nuts. If anything, I need more strength in my lower body now. I am so weak. Stretchy, but weak. Can't do half the things I used to be able to do and hold. I would think that would be a good thing.
It doesn't seem to do much. I have become so inactive, and I am not disliking it. I have been so active for 50 of my 58 years, and an just plain worn out. I do like it when I exercise, but I can't seem to get myself on a bike or the treadmill at this point.
Plus the stupid thing keeps flaring. I was up at least 5 or 6 times to go pee last night. Not a lot either. I usually can make it thru the nite when I take my Zanaflex. (sort of like flexeril, but for MS patients...makes me very tired, and makes me weak) I can deal with that if it helps my bladder, I don't think anything is working any longer. I am at a higher level constantly for the past couple of months. But meds are not working as well to cover the pain.
So, to bed I go. It is the easiest place to feel better, I can lay down and bend knees etc etc, heating pad.
I am just still worn out from going out and doing so much on sun.

I take Duragestic patches...50ugh. I also take valium, zanaflex, and other meds, that I take for other things.
Had an IBS attack on Sun night or Sat. Naturally that flares me up a bit.
Then a stomach thing again on Tues.
Oh well, enough.

I don't know what this PT will do, and I think I am only allowed 30 visits anyway. So, I can't afford to do a year or more of the PT.

I will have to see if it really does anything, or just gives me flares.
I have had horrid flares from doing kagels. Pain Doc told me to stop it, and not keep up any type of work that will cause pain. After all that is what we are trying to avoid.

I do understand the theory behind all this, but I also understood the DMSO they put in me, that I couldn't stand. IT was total insanity of pain for a week or more, then another instillation. I could only get through 2.5 or so of the 4 times.

I am ultra sensitive to pain, and I have had so much muscle pain and soreness while I was dancing, I decided I would not go thru that again.
I hate being sore, anywhere. I have NO pain tolerance any longer.

Bek

[Iris5]

I'm sorry to hear that you have been having such a rough time lately! I'm sure your IBS is not helping matters much. A friend of mine has horrible IBS - I really feel for you that suffer with that horrible condition.

I too have been flaring up, but it's my own fault - doing stupid things. One day I forgot to take my medications in the morning - pyridium, elmiron and detrol. Luckily I had two of them with me, but I didn't have the detrol. Boy did I feel the difference. Normally I can hold it for 2-3 hours, but I was going every hour. It's amazing how quickly the body reacts. I was actually a little disappointed because I was going to try to go off some of my meds soon. I guess this little goof showed me I'm not ready yet. Has your doctor ever tried Detrol? Usually it's prescribed for people diagnosed with "Overactive Bladder". But who has a more "overactive" bladder than an IC patient?

I hope you don't do those kegels. I had a horrible time the first time I did physical therapy - I did biofeedback once a week, and I was supposed to do kegel exercises 2x daily. The kegels sent me into horrible flares. The second I stopped I felt a lot better. I don't know why they're recommended to anyone who has IC. Although they improved my flow some, it really irritated everything else. I'm glad those days are over.

I hope that Thanksgiving will give you some peace and cheer you up! Take care!

[Miki]

kegal make me nuts, and did flare me a lot when I was with a PT 4 yrs ago who was doing biofeedback.
I tried the detrol and it made my spasms worse. I felt like I couldn't go to the bathroom, and that is the problem anyway. I always feel like I have to go, but don't have anything come out. It is weird, but the overactive bladder stuff makes my whole system go into a flare.
I have stopped 2 of the meds the shrink gave me, and my bladder (uretha) is pretty much back to baseline. (thank goodness)
Now I am supposed to see a new PT about this and I am so scared to do anything that might make it flare again.
I have now moved from Zanaflex to Flexeril, and Vicodin and dilaudid.
I have not had to use the meds, except to try them out as I felt a flare beginning, and they helped. So, I guess I will see.

Thanks for your post.

[Iris5]

I have been having a flare now for several days, and have had a hard time getting my symptoms under control, but I think I'm just stressed out because when I'm at work and I'm distracted I actually feel better.

That's really funny that you are taking Vicodin and Flexeril. I take those too when I have a flare (although I've never tried them together - I'd be too scared.) But they make me sleep well. (I try to stay away from them during the day because then I can't drive).

I hope things settle down with you soon and you feel better!

[Miki]

IRis 5,
I am pretty narcotic dependant, using a Fentynal patch. Tonight I got a really bad flare and it jumped from a 4-5 to a 8. I took Actiq, the lollypops of fentyal.
It took down my flare from an 8 to a 3+ in less than a hour.
I know that the flexeril and dilaudid doesn't work too well now.
I am trying to stay off my flare meds, esp the Vicodin, so that I won't get used to it, as I did the lortab, and Oxycontin.
I just wish I wasn't so "delicate" about these meds. I don't mind taking them, but 1/2 don't even work.
I used to take a Flexeril back in the day before all this, and it knocked me out for a day or more.
Now, I don't even feel the darn things. doesn't even help me to sleep.
I don't care as long as they will WORK. That is my main goal now.

Miki