Please, I need advice for so many conditions popping up!

[DianeRN]

I'm not sure where exactly to post this, I haven't been online in quite some time. I was diagnosed with IC a couple years ago and fibro right after that. I've been to pain management, and they've been wonderful, but all of a sudden, different things are popping up. I have severe back and hip pain- was given SIJ injections for that last weekend and now I'm suffering with bouts of incontinence. I called the doctor's office and they told me to go to the ER which I did and they did nothing. Just sent me home on Christmas Eve. I don't know if someone else has had such symptoms after nerve injections. I'm 45 and scared to death right now. I don't want to be incontinent now also!

[betsyannn]

Hi! Don't really have a positive reply to what you have asked, just wanted to acknowledge your post and kind of give you my perspective of my own personal view of this crazy disease and what I know. I think that we all have different but similar symptoms. When I read the post on the all of the different forums I have found that we all have pain. Acute pain. Severe pain. I have pain in my back, in my hip, on my right side, in my abdomen. Recently I had my first bladder spasm (it felt like I was a contraction like I was getting ready to give birth) and it radiated around my back. The pain was off the charts. I am only a year and 6 months out and I can tell you the more seasoned I get the worse it gets and the more new symptoms come. I haven't yet come across anyone who has the same treatment plan as I do. And I feel l am doing very well. Half the time I don't know what anyone is talking about but I just keep educating myself as much as I can. Take Care! God Bless.

[ICNDonna]

It could very well be the injections that are causing the incontinence. If that's the case, it should go away as the medications injected wear off. Have they done tests to determine what's causing the back and hip pain?

I hope you feel better very soon.

Warm hugs,
Donna

[amaranthe]

***OOPS!!! Sorry this was so long! I didn't mean to write a novel!***


Dear Diane

Hello! I am so sorry you haven't been doing well. However, it is nice to see you back here again. I DO remember you from before. You always wrote such thoughtful posts, (and of course, it is always nice to hear things from an RN's perspective.)

As for your recent issues, let's take these one at a time. First, let's talk about the incontinence following the injections. Although that is not a common reaction, YES, I HAVE read of other people sometimes having that happen after injections such as nerve blocks. I have also heard of the reverse sometimes happening, (complete retention.) In fact, I personally dealt with retention after having a nerve block.

I am not sure why this sometimes happens in a select few unfortunate individuals, but not to others. However, the good news is that this is usually only a temporary reaction that usually goes away after the injections wear off. (For some people it can be a few days, and for others, they last a few weeks.) (In my case, the retention lasted about 4 days.)

My Pain Dr. was the one who did my nerve block, but since my Gyno treats my IC, I asked him about it at my next visit. He wasn't sure why it would happen either, except he said that sometimes it works too well, (like in my case, causing the retention.) But, also, it seems that sometimes it can trigger the wrong nerve, causing the muscle to relax so completely that in causes temporary incontinence. (This is of course, only a theory, so please don't take this as medical advice or for fact.)

Anyway, I hope that helps set your mind at ease regarding the incontinence. I know it is very worrying when something like this happens to you, (especially if you were fearing that this was going to be permanent.)

I do think you should go ahead and make an appointment with your IC doctor to let them know what's going on and see if they can help you or at least see if he/she can call in a r/x to help you deal with this till it (hopefully) goes away.

As for your fibromyalgia, I also suffer with this, and like you I also see a pain management doctor. Although I take Morphine ER 2 x a day, and Morphine IR for breakthrough pain, for whatever reason, they don't seem to help with the Fibro. The one med that helps me the most for it is Lyrica.

The way I describe my Fibro pain is that it is a severe aching pain that feels like it is just under my skin, and on top of the muscle. (I know this is gross, but if you are a cook, you will understand this analogy: You know how when you are cutting the skin off of raw chicken to cook, there is this thin, white, layer covering the muscles of the chicken? Well, apparently, we have that covering our muscles too, and it is that lining that is painful in most people with Fibro. Anyway, somehow Lyrica seems to calm down the nerves in that lining and it really helps with the Fibro pain.

For a long time now I have thought it seems to be way too coincidental that with IC, we have problems with the linings of our bladders. Then, for IC patients like me who also have Endometriosis, we have problems with the lining of the uterus. Then, to have Fibro and have a problem with the lining of the muscles, just seems to me to be much too coincidental for these all to be different diseases! I truly believe that these are all caused by one thing and that these are all actually the same disease that is some strange, yet unknown, unnamed disease that effects the linings in the body. (Then, there are many IC patients who have problems with the lining of the intestines/colon.) Like so many other IC patients with this profile, I also suffer from IBS, (which makes me wonder if it is a lining issue there too!)

The thing about the linings is only my personal conjecture and opinion. I hope that no one reading this takes any of that to be fact or anything, since I am not a medical professional in any capacity. I am simply an IC patient who like most others here, is looking for answers myself, but hoping to offer help, hope and support to anyone I can along the way.

Lastly, regarding your hip and back pain, both are common with IC and Fibro. I see that your Pain Dr. wanted to go the nerve block route for right now. Since that didn't go very well, it looks like you are going to be needing some pain meds. Hopefully your Pain Dr. will put you on a good extended release type med and also give you a breakthru med. Since you are an RN, you are already aware of the fact that pain meds work alot better if you "get ahead of the pain". Once the pain gets too severe, it is very difficult to break it's spell. So, it is MUCH, MUCH easier to prevent the pain from getting too bad than it
is to stop the pain once it gets that bad. Hopefully, your pain Dr. will get you fixed up at your next visit. (Also, don't forget that if you haven't tried the Lyrica yet for your Fibro, ask your Dr. if he will let you try it.) I hope it works as well for you as it does for me.

I hope that your incontinence ends soon and that your pain gets better soon too. Again, I am so very sorry that you had to come back to the ICN, but it is still nice to you back. So, back!

Sending hugs of sympathy and support,
Amaranthe

[DianeRN]

Thanks so much to everyone for their support. My incontinence problem seems to have gotten better, but I have this fear it will come back. I, too, suffer from IC, fibro, IBS (I had a hysterectomy so no problems there). I go to a pain dr and have Morphine ER prescribed as well as break thru pain meds.

I also developed the worst RLS ever! I had a crawling feeling under the skin of my legs and such pain! It took awhile to find out something helpful, but Neruontin and Ultram worked for me. Lyrica just caused me to gain so much weight they took me off that. The disease itself and my lack of regular movement has caused me enough weight gain. I have a wonderful pain management dr., but when I went to the ER, they treated me like I was a drug addict and told me the doctor was prescribing way too much narcotics for me. I've had the same break through pain med rx since July without any refills, so I don't think I'm overusing my meds. I was treated horribly!

I've been denied SS twice now, and have a hearing in February. I'm so nervous about that. Has anyone had luck with that?

Again, thanks everyone for your wonderful support. I've got to come back more often and hopefully help some other IC patients. You're all great!

[amaranthe]

I am so happy that the incontinence is finally easing up for you and seems to be going away. But, I am very sorry you were treated so poorly at the ER. Unfortunately, (like so many others here have reported), I have also had many experiances similar to what you described where they saw on my med list that I take narcotics and became very judgemental. This has happened to me at both of our area hospitals. Even though I am on the lowest dose and have been on the same dose for many years now, they all want to preach to me about the ills of narcotics as well as to tell me how "narcotic therapy is inapporpriate for a condition like IC" and how I "should be able to get by just fine by just taking an 'occasional Tylenol or Ibuprophen," (as though it had never even occured to me to try one/or both of those.) GRRR!!! I HATE hospitals so much!

Regarding Disability, it is very common to be turned down (almost immediately) before you get to the point where you see the judge. I believe I read somewhere that 8However, don't let that dissuade you. As for your age, yes, it is young. However, lots and lots of ICers much younger than you have won. I won. I won mine in front of the judge when I was 34 or 35 and they backdated it 4 years, (making me actually disabled at age 30 or 31. (This also meant that they paid me backpay for those 4 years, which was a sizable chunk of change! ) And as for being an RN, my Mother is also an RN and she was granted disability too; (in her case for bi-polar.) So please do not think it is impossible for you either!

[bob04951]

Diane

Don't worry about your hearing. Go in front of that judge and pour your heart out. Be brutally honest, and I mean brutally. You really have to tell all, even down to every single pee, every single spasm, etc. Don't be afraid of it. These guys are not there to be nasty to you and they have a "counsellor" right next to them. Cry if you feel like it. You will be fine. Sounds like you have a real good case, and hopefully your attorney is adept. Good luck to you, let us all know what happens.

[littlelaw]

IC help

I am not even sure if I am posting this message in the right place, but here goes...My name is Tara, I am 32 years old, and I was diagnosed with IC a couple of months ago. I have been on Elmiron for two months now, however my symptoms; (frequent need to urinate, never experiencing relief after urination - always feeling like I have to pee), have only intensified. I understand that Elmiron can take a long time to "kick-in", but should I be concerned that after two months, I am feeling no relief, and that my smptoms have only gotten worse? My biggest problem is sleeping. Since early-September of this year, the IC symptoms that I experience at night have turned my world upside. I often go 2 and 3 nights w/o any sleep whatsoever, because no matter what I do, and no matter how many times I void, I ALWAYS feel like I have to pee again. How can anybody fall asleep properly when they feel like they are going to pee themselves every minute??I am so sleep deprived that I cannot really function day-to-day. Since my diagnosis, I have lost my job, and am very nearly housebound, because I am either peeing every 5 to 15 minutes, and/or the pressure on my bladder makes me feel as though I have to pee every minute of the day, whether I have to or not. As well, I feel ill a great deal now, (nausea, dizziness, headaches, et cetera), because I am sleeping so poorly. I am posting today because I am terrified, and wondering if I am ever going to get my life back. I hope that anyone who has IC can help me with some of my questions and/or concerns. Mainly: (1) I understand Elmiron can take a long time to "kick-in", 3 to 6 months, but should I be concerned that after two months of taking it, I am feeling no relief? Is Elmiron supposed to make you feel worse, before it helps make you feel better; and (2) Will I ever get my life back? Am I ever going to be able to sleep properly again? I am so tired, but mostly scared to death. If anyone can help me at all, I would appreciate more that I can say.

Thanks,

Tara

[passion4life]

Welcome


You will find many travelers on your same path. Before discovering this site, I thought no one could possibly understand what I was feeling. By God's grace, I found the encouragement and support needed on this site.


Because I did not really understand this disease, I could never quite comprehend the disease and the things I could do to help myself. First, start with the diet. I started the diet in October and have seen improvements. These improvements have been slow but I can tell the difference.

Also, I am on Elmiron. I started Elmiron in August and progress has been slow but I can tell the difference. The dr. said it would take 3 to 6 months. Most people on the site said it could take as long as a year. So, I decided to give it a year. Started to see improvements in month five. One of the members wrote that taking Elmiron is like painting a wall with a toothbrush. I have held on to that analogy when my days did not quite go as well as I would have liked.

Also, when the frequency and pressure is to much, I take AZO.


Sorry for the reason you found the site but I am glad that you did find a place with people who share a common bond.

Perhaps some of the other members will post what they do to fall asleep and stay asleep. I don't have much experience with those types of meds.

Have the best day you possibly can!


Praying for the cure

[bob04951]

Tara,

So sorry for your problems. Have not heard Elmiron making things worse, it could just be that your IC itself is worse. You do have to give it a 6 month trial to be fair, but if it is making you sick, you might want to talk to doc about it. My hub gave it a 6 month trial with zero results, other than a nasty looking under skin rash, which he still has after being off it for a year. He was obviously allergic to it. For those it helps, it is worth sticking it out to see....

Will say Hydroxyzine has been a huge help. It took a few days to kick in, and once hub learned to take it early PM, he was not so drowsy in AM. It truly has made a diff, altho he has not been able to reduce his pain meds a lot, he has reduced some. It seems to help with frequency the most. (He's got a pretty bad case IC). He is actually able to sleep sometimes for 2 1/2 hours. Totally understand the sleep deprivation. He was a zombie for a long time, he actually LOOKED like one. You get used to it, I guess. He can basically sleepwalk to the bathroom. It just becomes routine. Nap when you can. Power naps are really helpful.

Are you following the diet? So important for most. It's really not so bad. Bob is actually also on a restricted diet for blood thinners and fluid retention, so we are REALLY limited, but it is healthy, and he's lost a few pounds. He is very sensitive to preservatives, which some are, some are not. Tomatoes are deadly for just about all. Also caffeine.

Hang in there, and consider Hydroxyzine. Bob takes 50 mg at nite, and it has truly helped with his sleep quality. Good luck dear. Jill, wife of Bob

[betsyannn]

HI! This is for Tara. I am not on Elmoron (sorry my spllng is wrong) my doctor chose not to treat w/that. I was diagnosed in June. So I am new to this as well. I am quite overwhelmed with this disease and have found that day to day is new. New symptoms arise the fatigue is horrible. Starting to feel like a hypochondriac and wonder if its all in my head. It truly sux. I take 600 mg of gabapentin at night. It will induce sleep and also for me, and produces a numbing affect on the nerves of the bladder. I also have urinary retention and also feel the urge to pee. I take bentyl. And a hyco something it relaxes the bladder and calms down the spasms. Those have a helped me alot. I hope you find your way. I have found that every ones symptoms are not the same and not all are treatments are the same. Gods Blessings to you.

[Linda May]

injections

O>K> I have got to have something called block therepy i believe they inject my neck with steroid because i am having problems in my neck and elbows. I hope this is not the same thing that made your ic worse. Someone please let me know if it is the same. I ask my nerologist if it would interfere with my ic and he said it would'nt.