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  • Need input for upcoming appointment

    I am going to see my Dr next week and I am hoping that I can get some relief for the pain I have been in for the last 3 months. I asked my Dr to change my pain med because I was having awful side effects from taking Methadone. It worked wonderfully for pain but I was having uncontrolled sweating at the worst time. When I say that I mean I would start sweating in an instant and my hair would be soaking wet, I couldn't leave the house. So, he changed me to Oxycontin, this isn't working for my pain at all. I get relief for about an hour or half an hour and then wait until I can take another. I wake every morning in agony, I can hardly walk to the bathroom. I spent Thanksgiving in the er at my Mom's house because after driving to her house to visit, the pain was so uncontrolled I couldn't calm myself down.

    My Dr doesn't give anything other than b&o suppositories for breakthru pain. So I need to have a good pain med that works. This pain is causing me to fear leaving my house and making my already depressed state worse. Last time we spoke of trying dilaudid and I think morphine. Does anyone have any experience with these. Do they work well? I am afraid I will wind up back on the Methadone, which like I said works so well for my pain and doesn't wear off. I just hate the side effects!!

    Pain is my main symptom. It controls my entire life. I hate it so much. Suffering for these past months has my PFD flaring terribly and now my lower back is in a mess as well. I spend my days laying down because walking, standing, sitting all hurt me.

    I am also planning to look into accupuncture, so if anyone has any input on that, I would appreciate it a lot.

    Sorry this is a long one. I hope some of you can give me some input on what has worked for you.

    Thanks so much,
    S
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

  • #2
    I have read posts by members about both of the pain meds being suggested --- and some for whom methadone is very effective --- sometimes it takes a while to find which one works best with the least side effects.

    I hope you find something soon.


    Donna
    Stay safe


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    • #3
      I am not really sure what to suggest, other than telling the doc that the OxyContin isn't working. I had the same issue when I tried Oxycontin several years ago - I got a bit of pain relief for 1-2 hours, and then nothing, so you're not alone with that one. I guess the only thing is to see if he'll try another med.

      The ideal would be to take a long-acting narcotic and then have a short-acting narcotic for breakthrough pain. There is a huge amount of research on this out there, and this is the way most pain specialists handle chronic pain. However, since I have the same doctor as you, I know that getting that type of regimen from him is going to be like pulling teeth. I'm frustrated too, because I know what works for me (for me it is methadone 2x a day with one to three Percocet for breakthrough in between) but I can't get the Percocet/breakthrough part now that our urologist is handling my pain control.

      I guess the best thing I can suggest is to keep a pain diary in which you write down when you have pain, how intense it is, what you do to treat it, and if the treatment helped or not. Then take it to the doctor and see what he says. The other thing I can suggest is to be referred to a pain clinic. Two new ones have opened up here in Winston recently, and one of them is at Wake Forest Baptist, so you might want to look into that.
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.

      Comment


      • #4
        Thanks Jen,
        I am thankful that he will treat my pain and I completely understand how he feels about "only giving so much". It is easier to just see one Dr but I might have to try pain management. I tried that here once before and the Dr asked why I just didn't use pirydium??!!?!?! There is somewhere in Charlotte I have kept the name of if I ever need them. Not sure what to do, will have to talk to him next week. Good to know that he is familiar with this not working for others though.
        S
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          Hey Sail,

          The combo that works for Bob is Fentanyl patches (expensive!) and oxycodone for breakthough and pyridium on bad burning days. Don't ignore the pyridium, it really helps some folks, and you don't have to take it all the time. Also hydroxyzine at bedtime actually allows him to sleep for sometimes 3 hours, which is a miracle. Especially on patch change days. Good luck, I'm sure your doc wants you out of pain, and you have to be honest about how you are feeling. Hope you get some relief. Jill, wife of Bob

          Comment


          • #6
            I am very honest with my Dr and have an excellent relationship with him. I see one of the top IC Drs in the country. I have already used the Fentanyl and didn't like them. Also, my pain doesn't respond to pyridium and I take hydroxyzine nightly. I am on the best regimen of treatment for IC, we are just trying to find the right pain med for me. It isn't always easy to do, that is why I was asking for input.

            Thanks for your input,
            S
            Link to the patient information, everything from What is IC? to Disability
            http://www.ic-network.com/patientlinks.html

            American Urological Association Clinical Guideline
            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

            Comment


            • #7
              Hey lady........i am sure you and Doc will find the perfect med! And thanks again for coaching me through today....don't know what i would do without you. Have my list ready to take.....and here's to hoping i will find the right pain med tomorrow myself......i am so tired of this pain....makes working full time harder by the day. This will be our year! Lets get together soon! Glad we live close!!! Hope u feel better too with that cold!!!!


              Mere
              Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
              Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
              Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
              IC Handbook Link: http://www.ic-network.com/handbook/

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