I have finally had it-I'm giving up - page 2

I'm giving up on ever being painful or even close to it. I spent a whole year in and out of the hospital with kidney stones, bladder infections, etc. Finally found someone who would actually listen and give me a... Read More

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    Besides medication, there are a few other things that may help while you wait for the prescription problem to be solved. Avoiding alcohol, tobacco, and acidic foods has helped some sufferers. There are treatments such as distending the bladder , which is done under anesthesia. Sometimes, painful bladder spasms are associated with interstitial cystitis. Using biofeedback to learn to strengthen and/or relax the pelvic muscles can help. There are other techniques, also.

    The squeeky wheel gets the oil- Don't give up!

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    Hi ER-RN2....just wondering...are you married??? After the birth of our first child, my wife developed severe migraines...tried everything "preventative" and it either made her puke or didn't help. She had been thru 3 PCPs and a pain "specialist" (read: idiot) who had nothing to offer her. :angryfire
    Relief came when I found her a new PCP who was also a Hematologist/Oncologist. His first statement to her after reading her hx was " This is ridiculous, they're not treating your pain." OH MY GOD SOMEONE ACTUALLY LISTENED!!!!! That was 6 years ago, and even though she doesn't see him anymore - he is the one credited with (literally) saving her from a lifetime of pain. The treatment he began is still used by her every day, and she has some other meds for breakthru pain.

    Don't give up...

    Oh, and I asked if you were married to tell you this: It's a helluva lot harder for a doc to say he's not going to do anything if your husband/significant other is in the room with you to back your statements up. I made it absolutely clear just how miserable my wife was and the good doctors (there are a *few* left in the world) started her on a treatment plan that still works. Light a fire under the butt of your doc- there are things he can do for you.

    I'm sorry for your pain. I hope you get your life back soon.

    All the best,


    Quote from ER-RN2
    I'm giving up on ever being painful or even close to it. I spent a whole year in and out of the hospital with kidney stones, bladder infections, etc. Finally found someone who would actually listen and give me a diagnosis-interstitial cystitis. I was so relieved...I finally knew what what wrong and now I knew what to do about it. Boy was I wrong. I was spent the past 2 years doing everything I could to stop the pain-and I really mean everything. Never given anything for pain. Finally got thrown to a pain specialist-"because I don't know what to do for you". Spent over 2 months to get in there and finally...someone listened. I got a script for 1 month of topamax. It helped some-it was loading doses. Today I went to pick up my scripts and my insurance won't cover them--and they are not narcs. So I am just giving up. I wish I knew what I did to deserve this. I feel like I have a knife in my right kidney and bladder. All I do is scream and cry when I get home because there isn't anything else to do. I live on tylenol and motrin. I know that long term use of those aren't great but at this point I don't even care. If I had an hour of being pain free I don't even know what I would do.
    OK...I'll stop venting....Thank you for listening...
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    please dont give up you can still get some help
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    please dont give up, you can still find some help
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    there are many treatments for interstitial cystitis - including some cheap medications - some bladder treatments by urology, and then finally sacral root stimulation implants.

    go online and read up about it...
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    I know I'm probably late to post on this forum, but as a chronic pain sufferer, I want to put in my 2 cents. I have been a nurse 36 years, and for the past 6 of those years I have been in constant pain. I was diagnoses with 3 level disc disease (disc degeneration) + osteoarthritis of the spine. I'm still working, I have to use a scooter to get around. IO'm lucky that I'm in a position to do that. otherwise, I'd be unemployable. I have a PCP who finally prescribed some opioids for me, but has been trying to taper me down for the past 4months. I cannot stand to cook a meal, doing laundry is very difficult, as I can't carry it up and down stairs. I have had PT/OT out the wazoo, plus back injections --no help. Surgery is not an option. My reason for posting here, is physician's do not listen to their patients in pain -- if we don't hear you, then we don't have to do anything. I am considering changing PCP, knowing I will be branded a "doctor shopper" and a "drug seeker", but hey, all I want to do is try to keep working and maybe be able to cook a meal once in awhile. This does get so depressing, and when I brought up patient rights and what was his alternate "treatment plan" he started rattling off meds we'd already tried, or are currently using to supplement. Is it just me, or does medicine not get it????? I have a right to pain relief, so I can have some sort of a life.

    discouraged and depressed
    morghan:angryfire :angryfire
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    I realize that your original post is a year old, however I wanted to give you some info, in case you are still suffering, or someone else reads this who has IC and is suffering.

    I also have IC (Interstitial Cystitis). It can definately be debilitating, however, there are lots of treatments. First of all, I recommend that you visit www.ic-network.com It is THE site for information about IC.

    There are many treatments that you havent tried yet, so please dont give up! The standard treatments are Elmiron, ( a med to coat the bladder), Antihistimines (such as Atarax, to inhibit mast cell production in the bladder), Elavil, (an anti-depressant that also seems to help some with Neuropathic pain..which some believe some forms ofIC to be), Vesicare (or similar meds which help with urgency and frequency and also help with bladder spasms), Urimar-T or similar meds, (these also help with urgency frequency, and help with the burning upon urination), Neurontin or other drugs in the anticonvulsant family (if yours is thought to be from Neuropathic pain.) There are many more, but these are a good starting place.

    Also, of tremendous importance is following the IC diet. There is a link for this at www.ic-network.com This single steps helps some of the milder cases so much that many are able to control their symptoms with diet only! However, it usually takes a few months to see a noticable difference. Some examples of trigger foods for most: Caffine, spicy foods, alchol, cigarettes, citris foods, acidic foods and beverages, and many more. PLease check out the link I gave you. You will be so glad you did!! OH, one more thing!! NEVER drink cranberry juice, no matter what your well meaning friends and family may tell you!! It is EXTEMELY acidic and will cause you SEVERE pain!!

    As for pain relief, most ICers cannot take NSAIDS, including Motrin. If you are taking it, that alone could cause you to go into a flare!! Several patients do well with meds instilled directly into their bladders via small caths (5 French, aka Infant feeding tubes). These are called Rescue INstills, and can be done at a home. They contain Marcaine or Lidocaine (To numb the bladder), Heparin, (to thin the walls and help the Marcaine absorb), and Sodium Bicarb (to neutralize the acidity that may be increasing your pain.) I do these at home now, daily, as needed.

    Also, there are good pain clinics out there who can help you if pain is a big factor. However, many Uros will only send you there as a last resort, after everything else has been tried. (Not, all, but a great deal of them). I currently utilize the services of a pain clinic. I am on all of the above, in addition to 30 mg Kadian (24 hour extended release Morphine), and Lortab 10mg for breakthru pain. However, it was NOT easy to get referred there and was a long time coming. I also have Lupus, Endo (that had grown thru my bladder), Fibro, Vulvar Vestibulitis, and a few other things. It STILL took a long time to get pain mgmt, which I find inexcusable. Even then, at my first appt at the pain clinic, the pain Dr. asked me, (in a very demeaning manner), "Is IC honestly that bad? I mean, I dont have any other IC patients under my care! If it were REALLY that bad, wouldnt I have other patients being sent to me with this?" To which I replied, "Yes it is honestly "that bad", and obviously my URo thinks so, or he wouldnt have referred me here. And obviously my Gyno and PCP agree with him, since they wrote letters for me to disablity stating that they agreed with him that my pain is incapacitating and agreed with him that I should be declared legally disabled! And since the SSD Drs agreed, and a judge, I am now medically and legally disabled b/c of it. However, if the word of 3 of my Drs, 2 of SSD's Drs, and a judge for the federal govt arent good enough for you, then I seriously doubt anything I say will make much difference to you!" (It had taken me YEARS to get the pain relief I deserved, after suffering all day every day, and then to have this jerk act like I was just some drug-seeker was more than I could bear!) After I said all that, I got up to walk out, and he apologized for offending me. It took a while, but I am finally on the right dose for me. You will get there too. But whatever you do, do NOT give up!

    If you ever need me, or want to talk to someone who understands, feel free to pm me. I will be glad to help you anyway I can. I truly feel for you....literally. I hope that you have relief by now, but if you dont, then I hope this helps. Sincerely, Amy G.
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    Call back the insurance company and ask for an emergency review on those meds...if your pain is unmanageable, and over the counter meds are not working it's illegal for the insurance company to refuse to cover the meds and not offer an alternative when there is unmanageable pain involved.

    They have nurses and doctors that review this information. I would also talk to your employer benefits department and explain to them what is going on, and the can help you with the appeal as you need to be focused on your job and not your pain.

    I'll be praying for you.
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    I too was finally diagnosed with interstitial cystitis Dec "05 after bouts of kidney stones and bladder infections. I went to a urologist and he is wonderful. He started me on Elmiron and Ditropan XL along with urogesic blue and was given Mobic for pain. I know what you are going through it is not in your head. My mom has it also---it can be hereditary. I'm pain free now and just on Elmiron and Ditropan XL--still have kidney stones that are being watched but never have the pain in my abd and burning. Hope this helps.
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    Let me tell you this. I am now 21 yo, had a bad wrist/upper arm fracture 8 years ago. Lived in chronic pain for about 4 years after seeing my GP multiple times. Went to a different doc who finally said enough is enough and sent me to a plastic surgeon, had surgery but still had pain afterwards. He said there was nothing else he could do for me and sent me to an orthopedic surgeon who tried 2 seperate procedures. Still had a lot of pain even then! He then sent me to another surgeon who ended up partially fusing my wrist BUT after trying and trying I finally got the right treatment for me. All this happend for 6 years! I had given up on becoming a paramedic, I had given up on horseback riding, I had given up on everything.
    Once I finally recovered from the fused wrist I started to have a wicked set of plans for my future but then came along a hip problem. Same story again, had to get tests done but came accross some wonderful doctors and surgeon. Had surgery 2 months ago but not feeling much better. I have finally given up on paramedicine. I am a registered EMT tho.


    I refuse to give up now! I did it, you can do it! It will take the next 2 or so years of more surgeries on my hips before I think im going to be able to go back to school (thats where the nursing comes in) because I can no longer do EMS, but I have not given up.

    TRUST ME, where there is a will, there is a way. GO for it!

    You are welcome to pm me if you need a chit chat

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