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  • Constant nerve pain

    HELP! I am desperate to find something to help my daughter - She's 17 - Was diagnosed with IC about 4 years ago; she also has pelvic congestion, IBS, and severe nerve pain due to 4 pelvic hernias that were repaired 4 years ago. For the last six months, she has been in almost constant pain, both IC and nerve pain. We've been to pain management doctor, urologist, OB-Gyn, and acupuncture dr. I am at a loss at to what to do next. She's on Elmiron, Valium, Lortab, Vistaril, Cymbalta, and Ovcon. She had one nerve block at her Ob-gyn office but it only made it worse. I don't know what route to go next - neurologist? Physical therapist? Any input would be so appreciated. She is miserable and shouldn't have to live like this at 17...

  • #2
    Oh my your poor daughter having to go through this at such a young age. I'm no expert on any of this by all means but an opinion from a neurologist sounds like it may be a good idea. Maybe a second opinion from a different pain management dr.also. I wish I had advice to give but all I can say is that I really hope you can find some help for your daughter.

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    • #3
      I have two daughters and I cannot imagine if they were in the pain you are describing. This must be so hard on you. I'm so sorry...

      A second opinion from a urologist, or neurologist may not be a bad idea, especially since she obviously needs to have the pain managed well.

      By the way, is she managing her diet? Did you know about the IC diet? If she hasn't tried the diet it certainly is worth a shot at this point. Has she been tested for food allergies or other allergies? It's not a bad idea to rule those things out if you haven't done so. I had a friend who was so sick all the time and had no idea that she had severe food allergies to many foods. It can do quite a number on a person. And IC is definitely related to diet issues.

      Big hugs!
      Frances

      Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

      Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

      Other conditions: Migraines, allergies, mild IBS.


      "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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      • #4
        I have to agree that seeing a neurologist is a good idea. I hope you are able to find something to help her.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, 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.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          Good neurologists (?)

          Thanks for the responses, and yes it is very hard to watch her hurting. I would take it from her in a heartbeat - We are aware of the diet and she is pretty good about following it; however, she is still young and it never fails that when she feels just a little better, she has to have that Dr. Pepper and a taste of chocolate. I haven't thought about food allergies though. Maybe we should go see an allergy doctor (?) - Also, there are no reputable neurologists in our area. Does anyone have any suggestions as far as good neurologists? We are in Louisiana but we will take her anywhere in the country if it would help her.

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          • #6
            I think ruling out food allergies would be a very good idea and wouldn't hurt at this point. I'm reading a book from this website that discusses gluten and it's relationship with IC. I recommend reading it. It's called the Better Bladder Book.

            You mentioned Dr. Pepper and chocolate. I know a lot of people here could experience severe pain and problematic symptoms from having those things. So it might be good just to have her stay with the diet for a while to see what happens. You could go shopping together and buy the things she can have. Sugar tends to be ok according to the diet list here. (mind you...I'm still new at the diet) Personally, I like to eat white chocolate chips instead of chocolate and for me it's an ok substitute.

            I hope you get some good answers about a neurologist. I'm in the Boston area and there is Children's Hospital. However, that would be a hike for you. It's one of the best in the country, however.
            Frances

            Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

            Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

            Other conditions: Migraines, allergies, mild IBS.


            "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

            Comment


            • #7
              My thoughts, upon reading this is that it sounds like she has many different nerves that are causing her pain and it sounds like it is in more than one area. (IC Bladder and 4 different hernias) I have never had a nerve block make things worse those. They either have helped a little, a lot, or not at all. but this made me think of something my doctors told me. To make a long story short, when my IC started coming under control for the first time..I started noticing a long list of new pains in other areas of my body. After a ton of testing I was diagnosed with fibrogmyalgia by my rheumatologist. he and my pain management specialist told me that it was possible that the IC pain was so intense that my brain focused on it to the point I simply didn't register the other pain until the IC was starting to die down.

              Between these two thoughts I am wondering if she may need multiple nerves blocked to relieve her pain and if maybe it's not so much that the first one didn't work, but that another pain was then realized from that nerve going haywire. These are things I would think you need to discuss with your pain specialist as they are much more likely to know what all the different nerves may be and if this is something that is possible to her condition or not. I am definitely no doctor but I thought I would offer my slightly out of the box insight to your post.

              Another thought I had was that your daughter maybe benefit from the daily nerve dulling medications that are out there. They are non-narcotic, daily medications that help tone down the nerve pain impulses to help control more wide spread pain like Fibromyalgia. I have been on Lyrica but I know there are several different ones.

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