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  • Lower back and hip pain

    I have been in a flare for what seems like forever now...the past couple of flares that I have gotten I have noticed severe low back and hip pain. The pain is so intense that it radiates down my legs. I am currently taking percocet for my pain and it does not work. When I asked my Dr. about the back and hip pain she looked at me like I was crazy and said that she has never heard of IC causing low back/hip pain. So, am I crazy? Also, others that take percocet, have you noticed that it does not seem to last very long? Any suggestions for a longer acting pain med would be greatly appriciated. I have several drug allergies: Vicoden, all NSAIDS, Tylenol 3 w/codiene, hydroxazine, BC pills, Sulfa, Tetracycline, and most anti-infalmitories and muscle relaxors. Also, is there an easy way to approach the whole pain med issue with your Dr.? I am a little scared because when she gave me the percocet she really stressed that I should only take it when the pain was extremely severe. She gave me 80 pills which lasted me 10 months I thought I was doing good, very few flares and usually I will just try to deal with it. When I went to get a refill last month, she kinda raised her eyes at me because the meds didnt last that long. As I said before, have been in a severe flare for about one month now my new rx of 80 is almost gone, I have used 50 in 45 days. I know she is not going to like this but when you have to take 2 pills at a time to get them to work....I dont know what to do. Any advice? Thanks

    Michell
    Right kidney removal 1992
    Diagnosed with IC 2002
    Nuerostim placement 2002
    Nuerostim adjusment (surgical) 2007
    Diagnosed with nueropathy 2007
    Diagnosed with essential tremors 2007
    Endometrial abblation 2007
    Interstim removal 2008
    Hysterectomy with bladder tuck 2008
    Vasculitis Unknown orgin 2008
    Fibromyalgia 2008



    Currently taking the sodium bicarb/lidocaine/hep bladder installs on a daily basis.
    Will start PT for pelvic floor dysfunction once healed from hysterectomy surg. on 2/21/08.
    I take 2400 mg of Nuerontin (800 3x per day)
    Valium 10mg 2x daily (morning and night)
    10 mg of oxycodone as needed for breakthru pain
    15 mg oxycontin 2x daily (morning and night)
    Cymbalta 20 mg 2x daily (morning and night)
    Lidoderm patches as needed
    Lidocaine gel as needed
    Pyridium as needed.

    I self cath 3x daily due to some retention from pain meds. Of course this is just a recommendation, If I am not having trouble or it is no convienent, I dont do it.

    Was told by my Rhumetologist that she is not sure what we are going to do to treat the Vasculitis and Fibro as they are both considered infamitory problems and I am alerigic to all anit-inflamitory meds.





    Me and my kids
    Susan age 16, Me, Whitney age 18




  • #2
    Are you taking any other medications for your IC? Sometime a low dose of an antidepressant will help with pain.

    Donna
    Stay safe


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    • #3
      Most of my pain is usually in the lower back and hip area. My legs ache too when I'm really "on a roll". I'm lucky in that my doc thinks the pain is IC related so at least I don't have to argue... but she's shy of giving too many pills also. I have to stretch 60 Vicodin for the month, and believe me, most months it just isn't enough. 2 pills a day when I need 2 pills every 4 hours... but for now it's the best I can do...

      Hope you're feeling better, and no- you're not crazy!

      Missy

      Comment


      • #4
        I sometimes have lower back and hip pain. After my cysto/hydro I kept having pain that would shoot down my left leg and down to my foot. My pain management doctor said it was nerve pain. He put me on Lyrica and it has helped alot.
        Work like you don't need money,

        Love like you've never been hurt,

        and dance like no one is watching

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        • #5
          Maybe you have neuropathic pain in your lower back and hip? You can't see it and people won't understand. Nerves themselves are affected and conventional pain meds doesn't help. When a patient suffers from neuropathic pains it is very very important to discover the underlying etiology and perhaps that can be treated to prevent further neuropathy damage.

          The longest nerve in the body is the one that travels from your hip to your toes and is called the sciatic nerve. You might want to ask your Dr. if you have neuropathic pain and what the cause might be.

          I used to suffer with bad neuropathic pains that it was getting so painful and it affected my ability to walk, sometimes It made me loose feeling in my foot and I would trip and fall. I was young, but this is a big problem for elderly people now that people are living longer.

          A very common disease that can cause neuropathic pain is Diabetes. It is the most common. But I did not have diabetes. I learned that I had another common disease called hypothyroidism. My Doctors treat me for my thyroid disease, and now after several years I no longer have sciatica nerve pains in my lower back and spine. That means freedom from this neuropathic pain. I must remain on my thyroid medication for my entire life or my neuropathic pains will return.

          Definition of neuropathic, neuro means nerve and pathic means damage!

          Good Luck
          Silverfox

          Diagnosed with Hypothyroidism 3 1/2 grains Armour thyroid
          Diagnosed with sensoimotor polyneuropathy and autonoimic nerve damage

          Quote from my Dr. at IC conference: "identifying the source of the pain is not the same as defining the disease"

          Comment


          • #6
            Hi Capricorngirl,

            You are not at all crazy. Doctors don't know much about IC and are not very familiar with all the conditions attached to this horrible disease. I too, have developed severe lower back bain since my last severe flare up and the pain is moving further up as time goes by. I don't know if it is caused by long- term pelvic pain from ic, or being bedridden for two years, or if it a separate condition which is unrelated to ic like fibromyalgia or arthritis. All I know is that it has become chronic and pain meds do absolutely nothing for either pain. I'm currently on two pain meds and nothing. I hardly sleep and are desperate for this pain to subside. I have no choice but to have surgery because my pain and suffering is unbearable. I guess 35 years of ic can do that. I truly sympathize and empathize and wish I had the answer to rid you of your suffering. Hang in there. Try getting into a pain clinic.

            Marsi4

            Comment


            • #7
              Michelle no you are not crazy. I also have been in pain with my hip, thighs and legs. I have been through some test and so far nothing is explaining it. I don't know if it is IC related or what, I just know it hurts so much. I can't believe your doctor told you to wait until you have extremely severe pain to take it. Usually if you wait that long the pain medicine don't work as well. Since your doctor refuse to give you more pain medicine maybe what Donna suggested will help, I sure do hope so.

              I wish there were answers to why this is happening but I think Silverfox might have a point. Maybe it is a nerve thing going on. It could be so many things but while trying to find out what it is, you definitely need some help to get comfortable.

              Take care, Trishann

              Comment


              • #8
                My Name Is Angela And I Too Suffer With Ic And I Have Horrible Lower Back Pain. I Have Taken Lorcet,lortab,percocet Etc.....the Only One That Touched The Pain Was Percocet....dr Only Gave Me 20 They Were Gone In A Couple Of Days......i Am Scheduled For A Mri On Wed For My Back......i Had Never Even Heard Of This Until I Was Diagnosed...it Ia Horrible. And It's Almost Impossible To Work.....
                So Once Again ....no You Are Not Crazy!!!!

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                • #9
                  Michelle, I'm sorry to hear of your pain. I would suggest Elavil or some type of antidepressant. Sometimes doctors give Neurontin or Topomax for pain management. You may way to see a pain specialist specifically for your pain, and then use your IC doctor for other reasons.

                  Good luck! That sounds terrible!
                  [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                  [

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                  • #10
                    I have always had low back/hip pain that radiates down my leg (more so my right), and I relate it to my endometriosis since it's lasted so many years (I've only had my IC diagnosis for a few months). I think it's time for you to go to a pain clinic. My pain doc added meds for nerve pain (first we tried neurontin, then switched to Topamax) and that seems to help).

                    I agree with the Percocet; it doesn't last very long for me either, but, my doc doesn't want to add a controlled release. I guess I have to be happy that he gives me anything at all, right?
                    32 years old

                    former Med/Surg RN

                    endometriosis x 13 years (with attempted/ failed complete removal in June 2008), IC diagnosed with cysto/hydrodistention April 2007, second cysto/hydro in June 2008

                    Comment


                    • #11
                      I too have lower back/hip pain, but mine is from previous falls and back surgery that I had in 1998 which is now beginning to bother me again, which radiates all the way down my leg and sometimes numbs my foot. I have told my Neurologist this on the last visit and he said if and when it starts to really bothers me we will do something about it, but I really am afraid that means more surgery which I don't want right now. (besides, along with all of this pain I have inner thigh pain- which is connected to IC) so I have it all!!) all i am taking is vicodin 10mg. which doesn't last long, but it helps.

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                      • #12
                        back pain

                        I too have lower back pain and hip pain. My chiropractor explained it and it made sense. He said for sure that IC was causing it. He showed me a diagram with the nerves in the back connecting directly to the bladder. It all make sense. It is real pain and really related to our condition. I have had to take Demerol shots on the bad days. It still only slightly takes the edge off. It does not take it away. I understand the pain.
                        Interstitial Cystitis: Elmiron and Hydroxyzine
                        Depression/Anxiety: Remeron, Cipralex and Clonazepam

                        *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
                        * 2 hydrodistentions :

                        * currently on "Nabilone" for pain management

                        Taken the following:
                        Gabapentin no relief but could tolerate it
                        Lyricano relief but could tolerate it
                        Cymbalta severe depression/anxiety etc.
                        Topamax severe nausea and weight loss
                        Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

                        What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

                        Other conditions...
                        Vulvadynia (amytriptaline cream - no longer using to to irritation)
                        Severe IBS
                        Chronic Sinus pain (nasal rinse as need)
                        Migraines
                        Lower back and sacroiliac joint disfunction

                        Allergies: Erythromycin, scents and detergents

                        Comment


                        • #13
                          Lower Back & Hip Pain

                          I TOO SUFFER WITH LOWER BACK & HIP PAIN. I'M ALSO ALLERGIC TO MANY PAIN MEDS. MY SISTER WHO HAS FIBROMAGLIA BROUGHT HER TENS UNIT OVER FOR ME TO TRY & SEE IF IT HELPS. IT DOES HELP TO BRING THE BACK PAIN LEVEL DOWN, THEN I HOOK IT UP FOR THE PAIN IN MY LEGS. IT REALLY DOES HELP. SHE SAID THE NERVE ENDINGS ARE INFLAMED & HELPING THEM WITH THE TENS UNIT WILL QUIET THE NERVES DOWN TO BE ABLE TO FUNCTION. IT HAS MANY SETTINGS TO HELP FOR THE INTENSITY OF PAIN. HOPE THIS INFORMATION CAN HELP.

                          Comment


                          • #14
                            I have lower back and hip pain, too. X-Rays showed mild degenerative disc disease when I had them two years ago. I was 26 at the time. Bummer.

                            I tried physical therapy and that helped for a while, but the pain returned. I've had the most luck with a chiropractor. As was mentioned a few posts up, there is a nerve running straight from the low back to the bladder. My chiro also agrees that it's all related. I started by going in three times a week for adjustments and am now down to once a month. My pain is SIGNIFICANTLY better. RIght now, I'm a bit limited because of some insurance issues. Doing gentle stretches for my back also helps, so I am trying to do those at least once a day.

                            I don't take pain meds for it right now, but my family doctor did give me a muscle relaxer I can take at night. That really helps when my back is flaring. I take it for maybe three or four nights in a row at a time. It's also good in that I'm then able to rest and not be so uncomfortable and in pain that I either can't sleep or sleep very restlessly.
                            ~ Stacey

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                            • #15
                              lower back pain

                              Stacey,
                              Maybe I need to go to Chiropractor instead of PT I will check in to that.....all I know is that none of my meds help it....I'm so frustrated! this is so hard to deal with

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