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  • #1

    What do you take for pain that is helping?

    I posted earlier regarding missing those of you who are still around and care. I have an appointment tomorrow with the chronic pelvic pain specialist. I am unfamiliar with the pain meds that are out there as of late because I've been in the dark for so many years by taking the same regime for 5 years.

    What do you take for pain that helps you?

    Here's the original post:

    Hello New Friends and Old Pals! I sure need you all and miss your support! I really could use some friends right now. I'm hurting..............

    This has been the worst year of my life. It keeps getting worse and so does my bladder/pelvic pain. I'm in the worst IC FLARE EVER. We just bought a house and now my Husband might lose his job. We can barely pay the mortage as is. My pain is out of control. I can NOT LOSE MY CHRONIC PELVIC PAIN DOC OR MY MEDS. I'm on disability and can apply for part D for meds but I think that costs more out of my disabiity check each month which we can not afford!!! We are running out of options here to manage this. Maybe I should have posted this in pain managemet but I've been flaring like this since we decided to move 9 months ago. Now the house is ours and I don't like what has come with it. I don't know where to turn to or who to talk to. I have no friends and no family left to talk to about this stuff. My Go to people have heard enough. What do I do?

    I was friends with some of you a long time ago when I was a moderator here way back when............I thought some of you might be interested to see our 10 year wedding Anniversary/Vow Renewal Photos. Let me know if you have trouble viewing them and what you think. You can leave your comments right there on the page.


    Here is the link to the photos taken June 29th, 2011 of or 10 Year Wedding Vow Renewal

    Share this album with anyone by sending them this public link:
    http://www.facebook.com/media/set/?s...10bb7af&type=1

    Thank You for looking at them!!! It was the 2nd best day of my life!!!!

    If any of you want to talk or remember me. Hello! and I miss You ALL!! I still pray for a cure for all of us every day and night and did not forget any of you but I did forget phone numbers and ours has changed. PM me if you want to chat!


    Love and Hugs,

    and old Friend, Kara Reese
    Last edited by Kara29; 10-04-2011, 09:47 AM.
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
    Tags: None
  • #2
    Just in the past few months, I have come to a conclusion. I think that my flares are probably 75% caused by my reaction to stress. I am an anxious overthinker, worrying about things that I can't control, especially at work. When something really awful happens, I have to deal with it, being the top boss. About 1-2 weeks later, I get a terrible flare. They are getting worse each time. When I get off on vacation, they almost stop entirely within 2 days. I am about 3-4 years away from retiring and am trying to figure out a way to cope.

    For pain, I use Hyophen (since I can no longer get Prosed) and then Hydrocodone 2-4 x a day when it's really bad. I also have a tens machine that helps a little. Baking soda helps the burning, but I have to only take a little once a day on the really bad days. Heating pads are in just about every room of my house and my office. I take elavil, detrol, elmiron and aloe vera. I also take buspar for anxiety.

    Bless you, I hope your husband doesn't lose his job. I just can't imagine the stress you both must be under! Sending you lots of good thoughts!

    Comment

    • #3
      I agree. Stress is a big pain maker. I'm still taking vicoden 3 times a day. Heparin/lidocain instills once a week and hydroxyzine at bedtime. I had to drop the TENS because it stopped helping and started making the pain worse. Kind of strange but maybe after so many years wearing it 24/7 the bladder got tired of it.

      Comment

      • #4
        Hi Kara,

        Firstly, I am so sorry you are under so much stress! I know stress isn't a huge factor for my IC but it is for my Vulovodynia (tension and all that)

        I use oxycodone if my pain is bad which doesn't get rid of it, it just makes me not care. As for vulva pain (if that is still a factor for you) nothing better than a hot bath, you have most probably tried this though. My mum used to get a mixture of morphine and codine - Codydromol or Cocodamol I think it was called for her joint pain for lupus in the uk but that is not available in Aus. I would imagine it woud be in US though?

        You look beautiful in your pictures, love the dress.

        I was wondering how your vestibuleectomy worked for your pain? (Sorry I am newer than you here and havn't read old posts.

        Thanks,

        "you never know how strong you are, untill being strong is the only choice you have"

        Claire xxx
        TMJ Dysfunction 2009
        Vulvodynia and/or PFD 2010
        IC, based on symptoms alone 2010.
        PCOS March 2012

        8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

        Currently using: IC Diet...pain meds as needed
        Medications / treatment tried and discounted:
        Fluconazole 150mg 1 per week for 6 months (yeast)
        Endep 25mg - 4months
        Lyrica 75mg - 2 months - FLARE
        Oxytrol patch - I think this caused retention.
        Countless creams, lotions and potions.
        Cystoprotek - no change in symptoms
        PT - for 1 year
        Various herbs and supplements

        Comment

        • #5
          Hi Kara,
          long time no see! Congratulations on renewing your wedding vows...that is amazing!

          I cannot help you with your question...I take whatever I can get for my IC flares! Right now I am taking Tylenol 3 and it does nothing for my pain! I'm still healing from pelvic organ prolapse surgery in August and I am flaring like crazy! I'm in a bit of a dilema with my Uro because I had a conflict of interest with her and had to go to another Uro for the surgery! I don't know how she would react to me asking for help after the fact! The uro that performed the surgery is in another state so she really isn't accessible to me.

          Today I'm going to purchase a TENs unit...it used to help me when I was in pelvic floor therapy. I hope you can get relief soon!

          Aleet7
          DX'd with IC 5/08
          other Dx's~SVT: had Catheter
          Catheter Ablation Aug 19,2010
          Migraines, PFD, Hypertension,
          Prolapsed Pelvic
          Organs and Degenerative Disc
          Disease, Kidney stones, Insomnia
          Two bulging discs w/tears and osteo
          arthritis in multiple joints in the spine



          Current Meds:Elmiron 400 mg per day
          Benicar Hct 40-25mg for Hypertension
          Norvasc 2.5
          Vicoden as needed for pain
          Cymbalta 30 mg
          Prelief
          CystaQ
          Prosed
          Lidoderm Patch

          Psalm 121
          I will lift up my eyes to the hills from whence comes my help? My help comes from the Lord, Who made heaven and earth.

          "Be Kinder than necessary because everyone you meet is fighting some kind of battle"

          Comment

          • #6
            I used to vicoden for pain but my new doctor won't prescribe it so he had me try tramadol which helps alot more than the vicoden did. I also use pyridium, tyenol, ice bottle sometimes, and heating pad sometimes.

            Good luck hope you find relief.
            Nicole


            Me and my cat chewbie he is my BFF
            __________________
            Diagnosed 3/13/08
            Symptoms August 07
            Current Meds - Elmiron 100mg 3 X daily, elavil 25mg, and Tramadol 50mg

            Kidney stones August 07

            Cystoscopy with Biopsy 10/22/07 by Uro who did not know what was wrong with me sent me to U of M 3/13/08. Was in pain from August to now. I have found some relief with the medications.

            Diseases -- Diabetes since 1990 -- Stroke 2000

            Comment

            • #7
              I used to take hydrocodone for years but the new pain management doctor won't prescribe it to me.. I now take 60mg of cymbalta and 600mg of neurtonin. combination seems to help.

              Comment

              • #8
                Let's see... I have taken MS-Contin (extended release morphine, worked pretty well until after a year or two I developed tolerance), OxyContin (didn't work at all.. which is weird because the short-acting oxycodone, ie. Percocet, works well), and most recently, methadone. I took methadone for about 5 years. However, it recently stopped working and I got ticked off and decided to get off it, with my doctor's help. I am now down to 5mg per day from 30mg per day and in a few days I'll be down to zero - am managing with Vicodin only. It doesn't work that well either but it's impossible to get Percocet, which, like I said, works well for me, so I gotta take what I can get.

                In addition, I do take Lyrica (mostly for fibromyalgia but I did notice a bit of a reduction in IC pain as well when I went on it years ago) and Elavil.

                They've got a few new sythetic opioids out there, including one called Opana and a few others... these are pretty rare as far as I can tell in the IC community, but they are out there.

                And of course, there are the Neurontins and Cymbaltas, etc. I've never taken those, so I don't know if they work or not.

                I sure hope you find something to help - and that your stress level decreases soon!! *hugs*
                ****
                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

                • #9
                  Hello there,
                  I have seen some of your past posts before and have seen some of the things you have gone through and wish things would get better for you. I do several things for my pain. I do nerve blocks every time I see my pain management doctor which is biweekly, these are just surface never blocks nothing to deep. Today I had my first epidural nerve block for my IC pain and I'm hoping for some relief to last longer then a couple of hours like the biweekly ones do. I also take MS Contin 15mg in the morning and 30mg at night as well as tramadol 3 times a day as needed for breakthrough pain and then when the pain is really bad I have Percocet 5mg for that. It really helps me to have lesser meds like tramadol because sometimes the breakthrough pain is not bad at all and other times I have to be in a car for an hour or two at a time and it's unbearable so it really helps having different meds for the different kinds of pain I have. For me the nerve blocks and pain meds are the best treatment plan for me. My doctor has told me he thinks a spinal cord stimulator is my best bet for pain management but I'm just not ready for that step quite yet. I hope that helps and we can chat anytime if you like.

                  Jessica,
                  Meds I take on a regular basis:

                  Elmiron 2/twice a day
                  Elavil 1/once a day
                  Low Dose Valium 1/once a day
                  Atarax 1/once a day
                  MS Contin 15mg twice a day
                  Tramadol for breakthrough pain
                  Sanctura XR once a day
                  Percocet for breakthrough pain
                  Pyridium as needed
                  Orthro Evra patch continuously
                  Lydocaine gel as needed

                  Diagnosed 4/2011 by a wonderful doctor but have had disease my whole life. This disease got progressively worse after my last child which was two years ago and have been looking for a good treatment plan ever since.
                  Had Cystoscopy done 9/2011 found severe IC
                  Had Hydrodistension done at same time
                  Taking this disease one day at a time

                  Comment

                  • #10
                    Just had to say hi to you Kara....I've not been around in a while either and just wanted to say hello!!! I have thought about you often and wondered if you'd ever gotten any relief. I hope by this point you have some peace in your life and are doing better with the pain.

                    Sandy
                    *IC-- Summer 2004; PFD--October 2005
                    *Fibro--Fall 2000; CFS-- Fall 2000
                    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                    Total Abdominal Hysterectomy--adenomyosis--9\08

                    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                    Comment

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