Devastated!!!!

[Kara Isabel]

Went to my pain management appt. today and found out that my doctor is weaning ALL his fibromyalgia patients off of pain medication and is going to manage the fibro with benzodiazapines (xanax, valium, etc)

I'm completely CRUSHED right now! He's weaning me off the mscontin and norco and I'm supposed to go back to a life of FULL TIME PAIN AND MISERY!

FInding another pain management clinic around here is IMPOSSIBLE because there are NONE. None that do medicine treatment anyways so I'm basically screwed!!!!!

I don't know what to do, my attitude is SOOO bad right now.

Again............WHY won't doctors take this pain seriously???????? WHY do they think its all in our heads??????????? I've already lost 7 lbs from the last cut in meds and now I just might waste away because I won't eat anything and I don't CARE anymore.........I give up!

I'm so crushed!!!!!!!!!

love,
Kara

[leelee88]

:grouphug:
Kara
I completely understand..I dont understand doctors..Mine will not even give me mild pain meds, so I suffer from pain every day..
I am so sorry you are going through this, but please dont give up, maybe if you go to him and plead your case he might see things differantly...
Good luck and God Bless You!:angel:

[jen74]

Hi Kara.
Wow, I am sorry about what you are dealing with. I dont get his approach as not everyone can take benzodiazapines. I know my GI doc has me take ativan which is like valuim for when I have severe stomach pain and nausea with my motility disorder. I do not take them all the time though as they say your body can become addicited to them in a short period of time. So like if you take them for more than 3 weeks straight everyday and try to suddenly stop them, you are going to have bad withdrawl issues.
I mean I just dont get it. If you are doing well with what you are taking, I think he should leave well enough alone, why screw things all up again and have you in pain. I honestly dont understand some of these doctors and their way of thinking. Good Luck Hon, and dont give up, if you have to, keep searching and maybe you will find another doctor, even if you have to travel a little further.
Jen

[blackcat25]

Hi,
Has your doctor said why he is doing this? If he's worried about addiction then surely he's got it backwards because benzo's are way more addictive than pain meds.
Wish I could offer more advice, but sending :angel: :angel: :angel: instead.
Hugs,
Blackcat:cat:

[patricia1]

I am so sorry!!! I will never understand why the wont believe the IC patients. If they could walk one day in our shoes just maybe they would understand

[ICNDonna]

Hopefully if you will work with your doctor, together you can find the right combination that will help with your pain.

Sending healing thoughts,
Donna

[dancemomof2]

So sorry to hear this. I don't understand why when someone is stable that they would want to mess them up. THis really stinks to hear this.

[jen74]

As sad as it is to say, most of these doctors are not in the business to help people, but rather to make as much money as they can. I would not be suprised if your doctor didn't have some deal going with the pharmacuetical company and is getting a kickback for prescribing these other meds. It just dont make sense that he would stop all his patients from using their meds for no reason. There is always a reason, and I rest assured it is a reason that will benefit your doc. I may be wrong, but it just seems fishy to me.
Jen

[Moonheart]

Gosh Kara!!! That is so wrong!!! :( I don't even know what to say. I think maybe you'll have to drive or be driven somewhere far away, or maybe can you go to a primary and get meds?

I feel ill for you. :(

[littlemyrn]

I am sooo sorry also. I wish sometimes they could live in our shoes for about a month, without all the foods they like, not doing the activities they like, and see if they feel the same way.

[Sarojini]

That is awful. :( I am always terrified I'm going to walk into my pain clinic and they are going to say something like this, because, yeah, doctors can get very strange regarding pain. I think it was Donna who asked if he had said WHY... if so, I'm curious....

:grouphug:

[ihurttoo]

I am so sorry to hear this too. I know that had to be a terrible blow to hear that, especially since you have done so well on your meds. But, please dont lose hope on this. First of all, you are not like all his other Fibro patients, you also have IC. He may no longer think that narcotics are the optimal treatment for fibro, but there are tons of Drs. that agree that thet are entirely appropriate for the treatment of IC pain. I would start with that angle first.

To back your arguement, start keeping a pain journal. I know you used to keep one. Hopefully, you can find it and show this Dr. the evidence of how bad off you were prior to narcotic therapy and the vast improvements you have made while on it. If you cant find it, (or if I am mistaken and you didnt ever have one), then go back and print out your old posts here from before you had pain meds and then some from after you were on them and show him those. The difference is dramatic!

I would also take your husband with you to the appt, so he can "testify" as to the dramatic difference in your functioning and quality of life since you have been on pain meds.

I would also print off several of the articles on pain mgmt, including the ones of Dr. Brookoff's about the rat and his others. Also, the one about how the quality of life of IC patients has been demonstrated to be worse than (or similar to that) of patients with end-stage renal disease.

If you are still working, I would explain to him that it is because of your pain meds. If you are on disability, I would explain that it is b/c your DRs and the US govt all agreed that you are in that much pain. You get the idea. Use every tool you have.

You are a very eloquent woman and are always very persuasive. I truly think that you can change the mind of your Dr. when you do your "full-court press". But, if you still cant, then it is still no reason to give up. You see all of our signatures and know what meds we are taking. You know that there are heck of a lot of us on heavy duty pain meds. We all get them from Drs, so there ARE DRs out there who believe in our pain and believe in treating us compassionately with pain meds, if that is what it takes. You will find one too. You may have to travel to get to one, like I do, but you WILL find one. I have to travel 5 hours round-trip once a month to mine, and believe me, it is no picnic those days. As a matter of fact, I suffer worse that day and the next, than the whole rest of the month, just b/c of the drive. But, I have to do what I have to do in order to have pain meds the rest of the month. We are all stronger than we realize, and you will do what you have to do too.

I pray that your Dr. changes his/her mind. I know if anyone can change it, that you can. Please get your pain diary in order and your info printed off, and then make an appt to sit down and talk to your Dr. soon. Please let us know what happens. I am so upset for you, I will be worried sick until I know that you are okay.

Hugs,
Amy

P.S. If you need any support, feel free to pm me and I'll give you my number. Also, if you think it would help, I'd be glad to send your Dr. a letter from another patient's point of view who has Fibro and IC to tell him how much the pain meds help me function and that as a Moderator here, I have heard the same from patient after patient. I will also send copies of lecture transcripts with my letter, as well as copies of my medical records so he what I take and how it has impacted my quality of life. I will do anything I can for you. There is no detail in my life that is too private to put in my letter, if you think it will help you. Like I said, just say the word, and I will get right on it!

[curlycue]

:pray: :pray: :pray:

[sacausa]

Wow, that's awful! I seriously don't understand those doctors. I've luckily never encountered doctors who did not want to prescribe medication for my pain... on the contrary my doctors have always been way to free with prescribing pain medication....... In what part of the country are you? I seriously just don't get why these doctors are so reluctant to treat pain!

[Briza]

Kara
This must be so frustrating!!!! I know from some of your other posts your dr was already messing with your pain meds, and trying to add what was it, xanax? while lowering your pain med dose...so it seems like he was already up to something. What a stinker. And what Blackcat said seems right on target...benzos seem to be much more likely to become habit forming than pain meds. Ihurttoo has given excellent advice...I've only had that one pain clinic visit last week so I don't think I can add anything to what she said. Only thing I can think of is to take your bladder photos, if you have any from a hydro...I showed my pics to the pain dr I saw last week, and I don't know if that made it easier for me to get treatment, but he was definitely impressed (that's probaby the wrong word!) by the inflammation of my bladder. Even the before distention pics showed a lot of inflammation. And as someone who takes anti-anxiety meds regularly, I KNOW that while they relax me and make the pain more tolerable they do not reduce my pain, and I think you experience worse pain than I do. Best wishes...keep us posted on how things are going! :grouphug:

[andrea1]

Wow- I'm so sorry. I can imagine just how you feel. I went through months and months of doctors refusing to help me because they didn't believe that I was really hurting. I guess for now, I would try the OTC and home remedies until you find a doctor that works better for you. Keep coming here for support... Best of luck!

[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!!:pray: 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]

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]

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]

...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]

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]

:pray: :pray: :pray: :pray: