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  • #16
    You are NOT CRAZY!

    A lot of us get lower back and hip pain. My IC doc says it is very common in ICers. Sounds to me like your doc isn't versed enouph maybe it would help if you printed out your thread so she might see how many of us do suffer from lower back and hip pain. I have been in flare since April (My worst flare ever) and the lower back and hip pain are almost as bad as the bladder pain. Sometimes even worse. You might think also about finding a pain mgmt specialist who knows about IC. It took me several hours and LOTS of phone calls to specialists listed on my ins. before I could find a pain specialist that even knew what it was. I have to wait 6 weeks to get into see her but I think the wait will be worth it. I feel your pain LOL (Literally). Well wishes to you and hope you get the care you truly deserve.
    Mia Sowell
    Fort Worth, TX
    2 Kids
    Ethan (3)
    April (17)
    Husband Eric (Very Supportive)
    Clinically Dxed 04-16-07
    Symptoms Since 2004

    Meds:
    Elmoron 400mg 2x Day
    Atarax 50mg 1x Day
    Xanex .50mg 8 hrs As needed
    Vicodin 5/500mg 4-6 hrs As needed
    Xanaflex 4mg 1x Day
    Urelief Plus 6 hrs as needed for Bladder spasms
    Prelief as directed

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    • #17
      PT did help, too, but I think the chiropractor has helped more. The good thing about PT, though, was that was where I learned some different stretches for my back. My therapist said they're basically Pilates exercises if that helps. I was afraid that having someone press on my back would hurt my bladder, but my chiro knows I have problems with it and is sensitive to that. Of all my various docs, he's the one who most understands how inter-connected everything is.
      ~ Stacey

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      • #18
        Although back and hip pain can be related to IC, I do caution people with new or worsening pain to check with their doctor. There are other causes as well that should be eliminated. I know I'm quick to attribute any new symptoms to either IC or IBS, but that isn't always the case. A few years ago I ignored back pain and numbness down one leg and it turned out to be unrelated to my IC or IBS. By the time the symptoms became unbearable and drove me to the doctor, I required immediate surgery - but now that issue is resolved and the pain and numbness are gone.

        I hate to see people in pain unnecessarily. IC can have so many different symptoms for each of us and it's easy to assume new symptoms are associated with it. That may well be the case, but it's important to rule out other diagnoses.

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        • #19
          Shell I also agree with you. I thought maybe my hip and leg pain was just from IC, and I found out that I have a degenerate and a spur on my hip. I do believe IC can make your hip and legs hurt but it can also be something alone with it.

          I think maybe we just get so many aches and pains for no reason so we automatic assume it is IC. Thank you for the reminder.

          Take care, Trishann

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          • #20
            I have lower back pain that goes thru my hip and down my left leg and mine is from my bulging disc in my back which irritated my sciatic nerve...Did they say you had a problem with your back or have you had a CT scan or MRI done?I am on percocet also and to me it doens't provide a whole lot of relieve for my nerve pain..I am on Lyrica for nerve pain but has bad side effects(weight gain, and swelling of feet or hands)...Good luck

            Jennifer
            Interstitial Cystitis(Interstim Therapy)
            IBS
            Fibromyalgia
            Pseudotumor cerebri
            Type 2 Diabetes

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            • #21
              I went to the neurologist today for lower hip and back pain, and I told him about my bladder problems as well, and asked if they could be related. He did not say much on the subject, and thought that it was more likely the SI joint (connects the sacrum to the hip joint). The siatic nerve is likely inflamed as well, but after reading these posts I wonder if it really isn't the bladder. Anyhow he is refering me to a physical therapist who specializes in the problem, and also gave me Neurontin. Has anyone else tried it, and how does it do for IC? Thanks Di

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              • #22
                What works really well for my back and hip pain, is lidocaine transdermal patches. You might want to ask your doctor about them. I've had pain that wouldn't go away with morphine, just disappear ten minutes after I put on the patch. Of course, you need to have the root cause of the pain looked into, but these patches really help reduce symptoms.
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

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                • #23
                  My hip pain is deep inside the whole right hip area. It radiates around to the front too, and feels as if it is right inside the hip bone. I get tired of trying to figure it out. What bugs me is that if I spend the money on the physical therapy, and it's my bladder causing it then I've wasted MORE money on this crazy disease. I've had an MRI, and there is nothing visable.

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                  • #24
                    I get a shot here and there in my hip for the pain. My Ortho says it's Bursitis

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                    • #25
                      Sometimes they give cortisone shots near the sacroilliac joint and that might help. Its not permanent, and the pains can be there after it wears off.
                      It's smart to try to figure out the cause. When I had this painful hip pain I was sent to physical therapy and by the second session the movements were causing my pain to increase and it just made it worse, I couldnt stand the pains. The therapist just said I should not do this if it makes it worse.

                      I was desperate, and thought a new mattress would help me and it didn't. I found that resting was helpful, so I found a way to lay that seemed to make it better, on my side.

                      It took a while, but I finally learned that my pain was coming from edema(fluid in the tissues) putting pressure on my nerve. It was the nerves that came out of the lower sacrum and some go to the bladder down there. You cannot see this kind of nerve pain on an MRI. My Doctor says the pain was coming from within the nerve itself. I found some pictures of the nerves in that area of the body, but I do not remember where I saw them on the internet. I had had so much nerve pains in other places, that I suspected by my own instinct that it was caused by a systemic problem. With some very good luck and prayers answered, I learned that I did have an underlying illness. My Doctor was so happy to treat my illness and with care and patience, over time (many months) I noticed my pain was less. I began to research it further, so I could piece together all the clues and understand my pains better. More time has passed and I continued to improve and never again had the painful low back deep in the hip pains. I continue to do my own research on neuropathic pains when I have time, so that I can help my Doctors help me. I always fear it will return but it never has. Its difficult to relieve neuropathic pains (nerves damaged in my case due to edema pressure)as most traditional pain meds don't work on this type of pain. Hope you all feel better and don't let up on your search for the truth.
                      Last edited by Silverfox; 06-15-2007, 05:43 PM.

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                      • #26
                        Wow, this thread has helped me a lot. I have had hip, abdominal, back and leg pain for almost 3 years now. I can't even count on my hands the amount of tests I have had for this pain, all to come back negative. Several CT Scans, MRI's, Bone Scans, Blood Work, X-rays, basically every type of test there is. I even did an EMG, which hurt like crazy. Not once was it ever brought up that this pain could be from my IC! This pain started very oddly...In December of '05 I drove around all day and then the next day the pain started. It started in my right abdominal area and shot down my the side of my right leg, all the way down to my foot. My foot was numb and sometimes hot. I have had this pain ever since that day. It was so bad that I missed many days of work, and have spent tons of $ on tests. I have basically learned to live with the pain. It isn't as bad as it used to be, but when it gets bad, it gets BAD! I can hardly walk, driving is nearly impossible and nothing helps the pain. Thankfully I am going to the best Urologist in the state tomorrow for my 1st visit with him & if he's the best, then he should be able to explain this pain to me. I 100% sympathize with everyone that is experiencing the same pain- it's unbearable. It's of course even harder to deal with when my IC is flaring. If I find out anything of significance tomorrow I will post it here.
                        "Give what you have. To someone else it may be better than you dare to think."
                        -Longfellow

                        History of IC, Vulvodynia, Endometriosis, Adenomyosis, Polycystic Ovaries, and Cyst's on my Spine.
                        Update as of 6/27/07- Endo, Adenomyosis & Polycystic Ovaries are gone because I had a Hysterectomy in May of 2005! Still battling IC and what was thought to be Vulvodynia, now thought to be PNE.
                        Meds: Paxil 40 for IC, Clonazepam 1 for Restless Leg Syndrome, Seroquel 100 for Bipolar, and pain pills as needed.

                        You can find more info on me here:
                        www.bellaperlina.etsy.com
                        www.bellaperlina.blogspot.com

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