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  • Pain Clinics

    I was diagnosed with IC last month. I'm 24 years old, and I live in Pennsylvania. I also have fibromyalgia, PTSD, and bipolar disorder. I recently went to a pain clinic and was appalled at how I was treated. The doctor at the pain clinic failed to acknowledge the existence of IC, even though he had the records from my urologist that prove that I have IC. He told me that all of the IC pain is "in my head" and is due to my mental health conditions. (I am in treatment for my mental health conditions and remain stable.) He outright refused to prescribe me pain medication of any kind and treated me like I was an addict. He also stated that I am "too young" for pain medication. I didn't even ask for a narcotic pain medication. I just asked for a pain medication. I have no history of drug/alcohol abuse. He ordered a drug test for me, so he will find out that I'm not an addict. He offered no alternatives to pain medication to treat my IC pain. He simply won't help me with my IC pain. He did prescribe me Lyrica for my fibromyalgia, which insurance is fighting. I'm not sure if insurance is going to eventually approve it or not. He also wants me to go to aquatic physical therapy for my fibromyalgia. I'm not sure how that is going to work, since it hurts to wear any clothing that is skin tight. The fibromyalgia is not an issue for me anymore. I've gotten used to it over the years and deal with it quite well. The only time that my fibromyalgia gets to me is whenever I am having a really bad flare up. I tried to explain how bad my IC pain is when I was speaking with the doctor, but he wouldn't listen. My IC pain is unrelenting. It's so bad that I can't even sleep at night anymore. I can't drive a car. I can't work outside of the home. I can't even wear a tampon when I'm on my period. I think that it would be pointless to see this doctor again, since he's already told me that he won't do anything for my IC pain. He refuses to believe that my IC pain exists. I am currently taking Oxybutynin and Elmiron for IC. I am also modifying my diet to be a lot more IC-friendly. My pain is still very bad, and I don't believe that I should suffer like this every day of my life. I'm not really sure where to go from here. How would I go about finding an IC specialist in my area? Would my Primary Care Physician and/or my urologist be able to treat my pain at all? Or is a pain clinic the best route to go for getting relief from my pain? After how disastrous and upsetting my appointment at that pain clinic was, I'm reluctant to go to another pain clinic. Any advice would be greatly appreciated. Thank you!

  • #2
    Hi,
    I am also in PA right now. I don't know where you live, but if you are close to Carlisle, PA I could give you the name of my pain management doctor. Well, his name is Dr. Jarod Gipe and he is really trying to help me. He doesn't understand IC, but was willing to call one of the authors of one the books who discussed an epidural type block. He has really tried to work with me, but refered me to another dr to try a pain pump and this was a disaster and that guy was the biggest jerk ever. He said he would start with Diluadid like I was used to because I told him I have retention etc with morphine - then the day of the surgery he says he is going to start with morphine and if it doesn't work he will change it. It was horrible. Plus I never saw him he went on vacation after puting it in and I only saw the PA. I ended up with severe retention from the Diluadid too and couldn't pee at all - I had all male nurses and ended up doing my own self cath becauset they had no idea what to do. Also they brought the wrong size and latex catheters (allergic). Then I got a spinal headache and had to drive the 3 plus hours back to have them take blood out of my arm and put it in my back- this has kicked off severe back pain and leg pain. I went back to my regular pain dr. and I may need an MRI but then what? Surgery on my back? I can't even make it through the day with the pelvic pain. My diet is just a few foods that don't hurt.

    If you want his number I would be happy to give it to you. He and his nurse do understand that I am in very severe pain. They get it. Some of the others have been so rude and even one wanted me to wait a year before giving me an opiod until I had undergone psychological testing. But, go in with cancer and people get it. This is a horrible disease and I'm sick of people saying it is not that bad. It is bad!! I would rather someone paralyse me right now - I guess this isn't possible? or take out my bladder. I have never been close to remission and the daily pain of this in addition to the peeing is crazy. I don't leave my house either. I can barely move most of the time. The only pain med that I can take without serious side effects is diluadid and now it is causing severe retention. I don't want to have to self cath for the rest of my life either. I wish some doctor's would get on this board and read and answer some of these questions or offer some advice for severe IC - when everything else hasn't worked.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

    Comment


    • #3
      Pain Management

      Thank you for replying to my post. Can you PM me the name and number of your pain management doctor? I tried to PM you, but it won't go through for some reason.

      Comment


      • #4
        Your urologist may also be able to suggest a different pain management specialist.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          Pain Management

          Thank you Teresa and Donna for your replies.

          Comment


          • #6
            Hi Cris,
            I second what Donna said, both from the practical angle of you needing a different pain management doctor, and also that your own doctor needs to be aware of how he treated you so he won't send any more patients there. I'm sorry you had this experience.

            I don't know if you can take Elavil with your other medicines, but you might talk to your doctor about it - it can help with both IC pain and frequency. If you've not tried the IC diet for an extended period of time, like four to six weeks, you might try that also. None of my medicines work without following the diet.

            Wishing you relief soon,
            Kadi

            -------------------------------------------------------------
            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

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            • #7
              Pain Management

              Thank you Kadi. I will ask my doctor if I can take Elavil.

              Comment


              • #8
                Have you talked to your uro about rescue treatments or DMSO? they work for me maybe they would for you.

                I know every icer is different though, as far as that so-called doctor that told you your pain was in your head is a un- sympathetic jerk.

                I would not take his advice or see him again, I also would make it perfectly clear to your uro of how he treated you.

                Any doctor that tells you its all in your head need to see a shrink themselves and they need to walk one day in our shoes.

                If they felt the pain we go through they would be down on there hands and knees asking for forgiveness.

                Its a shame this day and age these so-called doctors are not educated to understand or have comppasion for there patients.

                I hope and pray your uro can do more for you and you find a understanding pain clinic.

                I had a very unpleasant experience myself with a pain clinic, because I could not make it to there pyscology meetings due to severe pain they refused to give me pain meds.

                I never went back my uro gives me DMSO treatments and I take urolo blue for pain.

                So far knock on wood I am pretty much under control, I stick strickly on the IC diet.

                My first uro was a nightmare and I suffered about three months in his care.

                Thank the lord I have a good uro now and I pray alot as well.

                I pray there will be a cure soon for this depilitating desease, or it would be nice for everyone to go into complete remmission until they find a cure.

                Bless you and keep in touch you have people who understand and this is a good sight for information.
                <center>
                <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                </center>

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                • #9
                  I am so sorry that you are in so much pain. I see a Pain Mgmt Dr. myself, but I can tell you it was very, very difficult to find one to treat me. (I have to go out of state and drive 5 hours round trip.) I have to go there once a month and am not happy at all with the fact that I rarely ever even see the actual Dr. Most months, I see the NP who just continues the same meds, (and wont switch anything, even though I have been on the same meds for 6 years!) I have only seen the actual Dr. about once a year in the 6 yrs I have been going there. And when I first started going there, he insisted on trying nerve blocks, TENS units, and neurpathic meds first, (even though I had already tried the later two.)

                  On top of all that, I had literally tried everything else first before I was sent to him, (having suffered for several years.) Most Pain Drs wont r/x pain meds until you have tried everything else first. I think that's part of the problem. Since you have only been d/xed for a month, you havent had time yet to have done that so I think that's why you were turned away.

                  The good news is that the IC Diet helps most patients alot (if you follow it very strictly). Also, most URos r/x Elmiron, but it can take up to 6 mo to know if it will work or not. They also usually start you out on Elavil, and sometimes a neuropathic med and also sometimed they will try instills or meds for overactive bladder, etc. There are tons of things to try.

                  I hope that something will work for you. Meanwhile, no one should have to live in pain. Remind your Dr. at every visit about your pain level and ask for something else to try while you are waiting for Elmiron and the other things to work.

                  I hope you feel better soon!

                  Hugs,
                  Amaranthe
                  I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                  D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                  Meds: Estrogel (due to total Hyster)
                  The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                  (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                  John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

                  Comment


                  • #10
                    I just came back from a visit to the Pain Clinic at Massachusetts General Hospital. It was a well researched referral. It was also a nightmare if you look at it one way or a skit from Saturday Night Live if you look at it another way.

                    I was dx thirty yrs ago and tried all the treatments available at the time. I couldn't tolerate intrvesical treatments. I didn't use narcotics because they weren't helpful. Valium was a lifesaver; no used it then. Also, I retrained my bladder using a TENS device. When I hit menopause I was almost symptom free with the meds I was taking: Valium, hydroxizine, Cystoprotek.

                    Three yrs ago I got the shingles and lost my remission. It's been up and down. My worst symptom is INTENSE itching under the bladder wall. It can be so bad I start shaking and hear myself screaming.

                    My pcp, who I need a divorce from, was shocked that I was using two five mg. diazepam suppositories and tried to block my specialist from prescribing them. My psychiatrist, who originally wrote oral diazepan and the neuro I see for sleep fixed things.
                    She gave me the "slippery slope" speech. Since I haven't moved on to anything else in thirty five yrs this seems absurd. She insisted on a pain clinic. Been there, done that, but thought I had a good referral. Twenty yrs ago there was one good i.c. pain doc in Boston. He retired.

                    I will go right to the punch line: "you could get a small vibrator to relieve the itching." I HAVE ALLODYNIA; TOUCH IS BRUTAL. IT ALSO SETS IT OFF.

                    I came with good lit from the ICA on pain. I also had everything clearly written out. The fellow, who was great, read it. The doc did not.

                    I also get retention but can handle hydroxizine and gabapentin. She gave me a scrip for another noreleptic, which I did read about. I can't take most meds used because of retention. I came home, took all my meds at once and am physically comfortable. They knocked me out enough that I'm not suicidal or homicidal.
                    Since I'm still married to my pcp, when I see her next wk I will tell her SHE has to find a pain doc.

                    Comment


                    • #11
                      ok so i have tried to post the same message and had it erased twice. I guess I'm just not suppose to post it. I just wondered andrea, what meds you finally received? How severe is your IC? I also have retention with meds really badly and went to see the uro today. He told me bascially he couldn't help me and I had tried everything. He gave me the Elmiron and Atarax when I ask to try them again. He said if they didn't work before they won't now. SO i have cried all day thus putting myself in severe back pain and bladder pain. I am so sick of this.
                      Last edited by Snowden1; 04-21-2011, 08:27 PM. Reason: found lost post
                      Teresa

                      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                      Comment


                      • #12
                        andrea,
                        what did you finally end up getting? What meds are working for you? I just wrote a book here but hit a wrong button and lost it all. Basically, I have severe retention too. I went to the uro today and all I have done is cry because he told me he "couldn't help me." He said I had tried it all. (Not yet). He gave me Elmiron and Atarax like I ask for but said if they didn't work before (I tried 40 days they wouldn't work now." So I am a HOPELESS CASE - basically is what he said AGAIN and I just cried and made my IC flare and my back worse. I ask for an MRI, but he ignored my question and told me to stay away from surgeries basically. So I can't travel far and I don't have someone to drive me. My husband will take a month in between school in June to try to help take me to a GOOD dr. I just don't know where that will be. I am just so sad I try to hold on to some hope and then they offer nothing and what they offer is at my suggestions and I'm told it won't work. Why are people so cruel?
                        Teresa

                        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                        Comment


                        • #13
                          Andrea, if you have been taking the valium for 35 years and havent fallen down the "slippery slope" yet, then I highly doubt you are going to now! The very idea is absolutely ridiculous! I think it just must be some standard speech she gives to everyone on those meds and that it must not have occured to her how long you have been on them. Either that, or she is just plain crazy!

                          I know you dont want to go to a pain clinic, but it might actually be a good idea since they stay abreast of the most current treatments for chronic pain. Also, they arent inhibited about r/xing things that other Drs are. So, I do think you should give a pain clinic another try. (However, I will warn you that it might take trying a few to find the right one!)

                          Snowden,
                          I am so sorry you had such a horrible Drs appt. I think the cruelest thing a Dr can say is that they think you have already tried everything and that they cant help you. (Especially, when it isnt even true, such as in your case!) Personally, I think the odds are pretty high that you know more about IC than your Dr does. (After all, you have been a member here for years and years and are on here almost daily reading and giving advice. So over the years, you have studied IC extensively and you know your body better than anyone! So please dont lose hope!

                          I think you are on the right path with giving Elmiron another try. After all, (as you probobly know already), it can take up to 6 months for it to work, and when you tried it last time, you didnt try it for anywhere NEAR that long! So, trying it again makes sense. If it doesnt work for you or you have too many side effects from it, then you might want to consider giving Cystoproteck (or whatever it's called) a try. (You know what I am talking about, that med that people take who cant take Elmiron.) You definately need something to protect your bladder wall and help simulate the lining to your bladder. I would imagine that without anything, you are probobly in a tremendous amount of pain. So, definately give Elmiron another try.
                          I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                          D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                          Meds: Estrogel (due to total Hyster)
                          The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                          (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                          John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

                          Comment


                          • #14
                            Go to your PCP. They are more likely to give you pain and sleeping meds. My does so knowing all my conditions without question. She is wonderful and does not treat me like some kind of drug seeking addict.
                            Your Friend,
                            Michelle

                            Diagnosed: 10/16/09

                            Elmiron, 100mg 2x per day
                            Imipramine, 10 mg per day
                            Diazepam 10 mg for sleep
                            Zyrtec
                            Zovia, birth control (ongoing-no periods)
                            Probiotics
                            Hydrocodone, 2 pills a day (at any time of day)

                            Comment


                            • #15
                              I am going to give the Elmiron one more change and hope that I don't have the same issues as last time (nausea, blood in stool, etc). I am going to start slower and try 1 pill a day then try two then try three. I don't know I may not even get past the first pill - who knows. I did try the Cystoprotek and actuallly thought it may be working for me until I started getting stomach and GI trouble from it. It's like you trade one thing for another.

                              Thank you so much for your response. Everyone is most helpful here.
                              Teresa

                              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                              Comment

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