Devastated!!!!

[Kara Isabel]

Thanks SOOO much everybody.......the support and encouragement means the world to me! Especially since its 2 am in the morning and the pain has woken me up......probably for the day

I guess I HAVE to make him realize that I'm not just a "fibro" patient! I hope I'm up to the challenge, but I definately WILL take the suggestions given to me from you all.

much love,
Kara

[dg2901]

Kara..sorry to hear about your Dr situation.
If you need anything you know how to reach me.

Feel better!
Diana

[toby75]

Kara

What has the worst pain for you, IC or Fibro? Does the doctor even treat you for IC pain or just the Fibro pain. I also have fibro and know how bad it can be but I can sleep with it, but IC I cannot sleep with and if you can't sleep your body cannot function.

Does he treat other IC patients that have no other problems? If so is he continuing to treat them with pain meds?

Amy

[toby75]

Also, someone had posted that maybe he was getting a kickback for from the drug company to prescribe the benzos, although benzos are dirt cheap and come in many generics, so I don't think that would be why.

Maybe he is getting grants to start a new fibro therapy using benzos and to report how his patients react on those drugs? He definitely needs to give you an exact reason for the change. If he can't do that then he doesn't even know why, himself, he is making the change. If the change is truely beneficial to the patients then he would be glad to share new info on why benzos will treat fibro better!! Amy

[Kara Isabel]

Thanks Amy,

The IC is definately leaps and BOUNDS worse than the fibro on most days, but he does specialize in fibro......so I think he just ignores the IC. I'm pretty sure I'm the ONLY IC patient he has.

I better fight for ALL of us, ehh?

love,
Kara

[DaniBelle]

Grrrr!

Kara,

Is this the same doctor who cut back your MS Contin and wanted you to start taking the benzos even though you told him repeatedly that they don't work for you? Why are some doctors so stubborn. It's more than unfair...this attitude drastically impairs the patient not only physically, but emotionally just the same. I agree with Ihurttoo....when you get some strength back, get your hubby to help you compile your past pain diary, medical articles discussing Fibro and I.C., and start looking for someone else who can treat you for pain managment. I had trouble with my last pain mgt. doctor and was getting very depressed about it because I was barely able to get out of bed due to lack of proper pain control. It took about 3 months or more, but I finally got in to see a very caring, knowledgable doctor. I thought there was no hope, but I refused to give up. Please keep pushing forward to get the care you deserve. I will be praying for you..that your pain will stay away!!!. Keep that precious puppy close. My dog is almost 2 and he still cheers me up when he makes sounds like "Chewbacca"...sooo funny. Holding a puppy is like having Christmas everyday! Hang in there...I know it will work out for you.

Dani

[Kara Isabel]

Yes Dani! Its the same doctor, and from what I gather it is one of his Nurse Practitioners harebrained ideas!!!!!! And its not just me, I heard the WHOLE waiting room complaining about it when I was there! So atleast THAT was a relief that he's not just screwing me over, he's screwing a majority of his patients, and he even quit taking my insurance so its looking more and more like I'll have to find another doctor or DRIVE far. Do you go to a pain clinic for your pain management?

Ohhhhh.........My new puppy is really helping cheer me up through all this, I swear, she is bringing smiles to my face when I'm crying! SHe's such a doll!! Puppies are such a blessing I can't believe I went so long without one! hehe

Hugs,
Kara

[DaniBelle]

P.s.

I wrote to Saronjini a few weeks ago about a thread a while back in which everyone was discussing how we could help the world become more aware of I.C. and its related diseases. Having someone like Oprah do a couple of shows about it would be great. I don't watch Oprah unless it's a show which has something to do with women's health, etc.. I think if we all wrote letters to her (or someone else who is 'high-profile') at the same time, we'd have a better chance of her devoting a whole show (or two, or three!) to I.C and Fibro awareness. I'm at the point now, where I want to print up info on a weekly basis and go post it in grocery stores, doctor's offices, post offices, etc.., to hopefully reach some people. I just think about the thousands of undiagnosed women out there who are suffering in silence for fear they won't be believed partly because they don't understand what's happening to them. We live in the wealthiest (I think) country in the world and yet we let people suffer in pain needlessly every day????? It's shameful.

P.S. That's a long P.S.!

[SandyRN]

Wow Kara, I'm so sorry. I just can't believe he's doing this. My pain doc is just the opposite. He refuses to RX ANY benzo's at all unless it's a one time thing, and an emergency at that. He said that pain meds are much more effective for fibro and IC and that the benzos just don't need to be added into the equation at all. There have been times I literally begged him for some klonopin or something like it for the PFD spasms because it really helps that. Now, if I need something like that I have to ask my GP.

It's just a shame that doctor's have so much control over our lives. They basically decide how we will spend our days and nights...either in agony, or a reasonably controlled state with pain meds. I wonder what he would ask for from his OWN doctor if he lived in the kind of pain we do.

Ya know, even if you were "just a fibro" patient, you would deserve pain control!!! How ridiculous is that??? I'm just floored. I bet he loses a lot of his long term patients by doing this.

If you have to drive a long distance once a month to get decent pain control then it's better than nothing. It's not right by any stretch, but it IS pain control, which is a lot better than what you have right now!

I'm just so sorry Kara. Please take care of yourself...wasting away is only going to make you feel worse. We care about you here and we worry about you very much.

You ever need anything please let me know.

Hugs, Sandy

[toby75]

You know what, Kara, you have nothing to loose at this point with this doctor in asking him for a referral to another pain dr that dispenses pain meds. Ask him or get his email address and send him an email telling him that you need pain meds for IC and since he cannot do this for you, is there another dr he can recommend.

Maybe by telling him this a)he will find another dr for you b)he will see how serious you are and how bad you hurt and maybe continue to treat you with pain meds. Either way it doesn't matter because benzos DO NOT control IC pain. You are in control with the dr now because you don't need him anymore and there is no fear of losing him b/c he will not be treating your pain.

Amy

[DaniBelle]

Just emailed Oprah Winfrey's producers

...with a plea for her to do an awareness program about I.C. and its related conditions. In the email (go to her show's website), I asked (pleaded) that they consider helping the world understand what I.C. is all about and that it not only devastates women, but their families as well. I also added that the majority of the medical community either doesn't understand it, doesn't care, or feels helpless (like we do). If we all bombard her with letters or emails, I think there's a very good chance her producers (and she) will help. I'm not saying that I think Oprah is the voice of healing, the voice that is heard when others' are not, but she certainly has a great following and people listen and watch her show mostly to be educated about women's issues...that's why I went for her. Just a suggestion. I'm getting tired of being tired, sad of hearing that my friends on this site are getting treated badly by the ones who should be helping them. It just doesn't make sense. Things need to change. We shouldn't have to be dealing with this ongoing 'guinea pig' mentality anymore.


Dani

[nyyankees20251]

I hate to say do this, but if you can get a chance or if there is anyway I would go to Canada and get some codiene. You can just buy it there over the counter.

It is shocking at the lack of understanding Doctors have. I don't think I have ever heard of a great doctor who gives medication willingly and understands the pain. I mean your doctor is deciding how the quality of your life will be without CONSULTING YOU!!! Do you think if the shoe was on the other foot he would let you do the same???? I wish you could get another doctor but I live in NOWHERE Vermont so I understand how hard it is to find anyone who can treat you.

Why are we so afraid in this country to treat pain. I know that I don't get high on anything I have ever taken for pain. If I wasn't in pain I would never look at another narcotic. As I know we all feel that way.

I hope you get some relief.

Laura

[DaniBelle]

It's ridiculous!

You can bet if any of these doctors were in any sort of pain, they would be self-prescribing pain meds for their pain, or have another doctor prescribe it for them. A good question to ask would be "Doctor X, if you were experiencing debilitating pain 24/7 and could not work, much less function, do would you hesitate taking pain medication to alleviate your pain?". I'll bet there would be total silence in the room after this question was asked..then they would come up with some way of evading the question and quickly leave the room. When my symptoms for I.C. were getting exceedingly worse, I was on vacation in Canada. I had noooooo idea I could get codeine OTC! I was taking Tramadol at the time, but the pain was not being alleviated with it. I feel soooo stupid for not knowing about the pharmacy availability there!!! I would have had a much better vacation!

Kara...I'm going to get that info for you about Valium, etc.. I looked up my doctor's name to see if there was an article about his work with anti-anxiety meds. I couldn't figure out how to search for it. I'm going to call my Gyn tomorrow to ask how I can get this information and if they don't know, I'll call Emory Univ. to ask them. In the meantime, get that referral to a pain mgt. center....you will be sooooo glad you did. They are there to treat your pain and will do everything they can to help you lead a regular life while having I.C., etc..

Dani

[nyyankees20251]

Also I wanted to add this....my cousin had a similiar situation and found out that her doctor had been paid by a drug company to take chronic pain patients off of their current drugs and try a new set. I wonder if your doctor is up to the same thing.......Just a thought.

[curlycue]

Ic