Going to a pain clinic for the first time eek!

[ICLori]

Hi, guys, traditional and non-traditional meds have failed to give me relief during flares (and I'm in a flare about half the time it seems, flares lasting several months at a time), so I finally decided to ask my uro for a referral to a pain management clinic.

Luckily for me, he gave me one.

I guess most everyone here on this board has reached the point I have, where you are tired of just gritting your teeth and suffering without help, and you've tried most everything under the sun with no relief.

So I'm gonna do the narcotics thing. I know Percocet gives me 4 to 5 hours of blessed relief.

For some reason, I am one of the 35% of the population that does not respond to morphine/codeine. In fact I am allergic to them. So it's either percocet or something similar, morphine ain't gonna cut it for me, LOL.

I sure hope the pain management clinic will be reasonable and not insist I take meds I am allergic to. (For some reason, docs tend to want to prescribe codeine over percocet...)

Has anyone else here been to a pain clinic before?

I am keeping a pain/voiding diary. Is there anything else I should do to prepare for the visit? What should I expect when I get there?

Oh and I'm printing tons of articles off about IC and pain and IC and how it's worse than end-stage cancer pain.

I'm worried they might never have heard of IC there, or might think it's all in my head, you know?

I was given 25 percocet to last me two months until my pain management appointment. So what I'm doing is using it just every other or every third night, for a few hours of sleep. It's not really great relief, I mean I wish I had relief around the clock, but it's better than nothing, and I could tell my uro was not very happy even prescribing that much. He told me it's a bad drug, stay away from it, don't want to take narcotics, etc. Hey he's not the one with IC pain, you know?

Anyway, if anyone has any advice for me, I'm all ears, thank you in advance! :) Well, I'm flaring, so I'm all ears except for my bladder which seems to be about 95% of my body at times, LOL!

Hope everyone here is doing well.

Blessings, Lori


:kiss:

[Katrina]

There are people here who have been to a pain clinick but that is not me. Have you tried any anticovulsants for pain yet....like Neurontin or Gabitril? Anyway that is one route they could go.

I hope you get the help you need.
Hoping for pain relief your way soon. Sending a prayer to God.

Best Wishes,

[ICLori]

Hi, Katrina, thanks!

Nope, haven't been offered those so haven't tried them. Am willing to try anything!

Are those meds that can be used on flares, or are they meds you have to take all the time and maybe after six months they start working but you still have flares?

Blessings, Lori

[ICLori]

From reading the posts on this board, I have come to the conclusion that pain meds are absolutely useless.

What I have read here leads me to believe that they will work for the first month, then I will have to increase to the max dose and I still will be in pain and they won't work.

So then I will have the IC pain AND be dependent on narcotics.

Am I right, is my interpretation of what I am reading here right?

So I am stuck peeing 40-50 times per day with no hope in sight, I guess. Wow.

Blessings, Lori

[lotsofgirls]

Hi,
I go to a pain clinic and its the best thing I have done this year. With my pain levels under control I have returned to a much more productive life. My pain doctor uses meds and other means to control pain, and I am getting much better at managing pain through things like pacing my day, taking hot baths when needed not just when the pain goes to high, using correct posture to lift etc, using relaxation.
Cath

[ICLori]

That sounds pretty good, thank you! I do like to take a hot bath each night, it seems to soothe my bladder.

I honestly don't mind the pain/urgency/frequency during the day, it's just annoying, more than anything but at night...oh gosh not being able to sleep is killing me.

I wish there was some safe, non-habit-forming, pill I could take that would give me, like, 10 or 12 hours of relief each night.

Wishing you a pain-free day!

Does that mean you are able to feel no pain or much less pain, without any pain meds now?

Blessings, Lori

[Dixiefireball]

I went to a pain clinic but it wasn't the right way to go for me that doctor played like he knew how to treat IC but i caught him in alot of lies with me knowing the answers LOL after he seen i was testing him he had a rude bedside manner.

I'm not saying this will happen to you I pray this is your answers you need.
i'm also alleg. to morphine and take perocets 10.325 which has helped my pain alot! plus heparin and marcaine at home treatments.

when going to the pain clinic i had two nerve blocks and my medicine was changed around alot until he could find the right one for me at the end i ended up on methadone but needless to say it wasnt worth it so i went back to my uro let him know what i was going threw showed him iwasnt a drug head and i was in true pain and he started treating my pain once again and he has taking wonderful care of me sinces.

please let us know how you are. I pray the pain clinic helps you Only if my uro's would listen to us and try to help us more like my uro did. we would all be better off.
also we would save alot of money too.
sending you hugs and prayers
Rhonda

[ICLori]

Thank you so much.

I'm lucky in that I get free medical care via the Army, such as it is, but things that are available in the outside world, aren't available to me.

For instance - no way is the Army going to do interstim on anyone with IC, LOL, too expensive. So that's out. Botox is out, BCG, anything experimental is out.

I am hoping maybe the pain clinic will at least let me try a tens unit.

I keep hearing about these nerve blocks...has anyone ever been helped by nerve blocks, with IC? Ever?

Blessings, Lori

[Babs RN]

Lori,
Today was my 2nd trip to the pain clinic and they have been wonderful. In fact when I saw him today he told me that people with IC tend to get the brushoff and that as far as he is concerned IC pain is right up there for horribe pain. I have found some meds that are working we are tweaking the dosages. I'm also an Army wife and they will approve interstim or the intrathecal pump. Pain managent has been a good choice for me personally.


Hugs,
Barb

[ICLori]

Thank you so much, Barb!

You know my first Army uro even denied me Elmiron! Can you believe that?

I think it's not Army wide, I think this particular hospital I am going to is really bad. It does have a reputation for being the worst in the Army.

It's DeWitt Army Community Hospital at Ft. Belvoir, Virginia....have you heard of it?

In other areas, we are allowed to go to a civilian doc who accepts TRICARE. Not in the DC Metro area. It has to be preapproved. It's just really really weird in this area, and really really the worst healthcare I have ever encountered.

Anyway, I have been told no interstim. I might have to try to challenge that, though I don't know how I would even do so.

But it might be moot.

Today on the message boards here I read about taking prelief with tylenol to stop the bladder pain from acid.

It never occured to me before that pills have acid in them. So I never took Prelief with my tricyclics, and I got bladder pain each time. I assumed I was intolerant of those meds. My uro accused me of lying about the increased bladder pain, said it was impossible.

Anyway, I took it today with prelief - for the first time, it works like it's supposed to and lessens my bladder pain instead of increasing it.

I will have to let my uro know what the problem was. And the solution.

Apparently my bladder is just overwhelmingly sensitive to any acids in pills, from the inactive ingredients.

Thank you for replying to my post!

Blessings, Lori

[Babs RN]

Lori,
Yes, I have heard of Dewitt. I was a nurse in the Army when I met my husband so I got pretty familar with the way military medicine works. It is much harder as a spouse to get anyting approved in a timely fashion, that's for sure. I was in a different Tricare region when the interstim and or pump were even mentioned. I was seeing Loma Linda pain management at the time. I have been seen at Nellis and in Las Vegas and have had decent luck with the docs. Reason? I have realized that the Airforce rocks compared to the Army for medical Care--maybe because it is a smaller entity---who knows. I can only say that what took Army medicine 18 months to figure it out has been made tolerable in less than 6 mo. PM me and I will give you my number or vice versa if you want to talk,

Barb

[Morgan Stone]

Hi Lori,

I go to a pain clinic and was very fortunate that my Pain doc knew what IC was. We tried the fentanyl patch first but i was unable to use it and have been on oxycontin for 4 months now. My original dose was 20 mgs twice a day then it was raised to 30 mgs twice a day and now, its at 20 mgs 3 times a day which seems to work really well. The pills last about 8 hours and for the most part, i don't have any pain, other than an occassional flare here and there.

I do know someone who has used the VA for pain and they aren't real happy about writing narcotic scripts. I think they reserve the oxycontin for cancer patients and only like giving out the morphine.. so, Im glad you are trying a pain clinic that has the option to write you whatever they want.

Ive tried several things and the oxycontin is about the best for me. There is no "extras" in the meds so you only get pure oxycodone and that does less damage to your liver. I had a problem with acid as well and the oxys don't bother the bladder at all. Glad you found the prelief.. they say its wonderful.

Keep us posted and good luck to you hun!

[Morgan Stone]

ohh.. and I forgot to add this.. I was given a tens unit and it did not help in anyway whatsoever with the bladder pain. if anything, it made mine worse! But... it did help with the back pain. I have read that others had success with the tens tho.. so don't give up hope on it :-)

[ICLori]

Hi, thank you...I think I will still try the TENS just in case...

I was thinking I figured out how to take the tricyclics without them bothering my bladder - by combining them with prelief - but my joy was shortlived and premature because I woke up about 2 in the morning last night with my bladder in agony.

I just can't tolerate the tricyclics, no matter what I do.

And I don't understand that. I've seen only a few people on these boards who have increased pain from them, everyone else gets relief.

Why are we few so different?

My uro thinks I am lying.

I start to doubt my own perceptions, my own judgement and wonder if I am crazy.

Anyway, looks like pain clinic here I come.

Blessings, Lori
P.S. Edited to add, I am going to a pain management clinic but it is at Walter Reed Army Medical Center which means it's still Army medical care.....not a good civilian place unfortunately...