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  1. #1
    ICN Member green1577's Avatar
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    Central Sensitization

    Hi everyone,

    My doctor told me I have this, and that's why the pain is getting steadily stronger even though the IC probably isn't. I say "probably isn't" because pain is the only symptom at this point. There were some urinary symptoms in the beginning (1/07) and they disappeared after a few months. I know I should be grateful for that, and I really am.

    I'm not sure I understand, though, what "central sensitization" means in terms of treatment. Does anyone know if central sensitization can be treated? I asked my doctor and he responded sort of vaguely that narcotics could "help" it...but can it ever go away? This worries me a lot because I just started opiate therapy in the last few months and have gone through several without promising results...with each one, as soon as the side effects wear off, the therapeutic effects have worn off too and I have to increase, increase, change to another. Is there an end to this cycle, I wonder? I guess what I'm really looking for here is reassurance more than anything because I'm getting really scared.

    Thanks,

    Anna

  2. #2
    ICN Member SandyRN's Avatar
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    Thats something I've never heard of but will see what I can find out there on it. I really don't understand what your uro is telling you either. I guess google is as good a place as any to start looking.

    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.

  3. #3
    ICN Member green1577's Avatar
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    Hi Sandy,

    Basically what he's saying is that the pain has been around so long that it has somehow entered the nervous system's "memory" located in the spinal cord. So regardless of whether a physical injury exists (I never had a cystoscopy, so I actually don't know), the nerves fire off pain signals because they are so used to doing it. I know what the papers say on this, and it isn't optimistic. But I was wondering if it's possible to have significant pain for 3+ years and have it go away one day following treatment (or spontaneously). Did this happen to any one?

    Btw, I had vestibulitis surgery when I was 19. The pain had only been there for one year prior to surgery, but it actually went away after surgery. It was gone for 8 years. This time it's been three years since the pain returned, so that's why I'm concerned.

    Thanks,

    Anna

  4. #4
    ICN Member Mothergoose's Avatar
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    I don't think I can answer your ?, but I had a pain between my shoulder blades, just started out of the blue one day, but I could not stand for that area to be touched, not at all. I saw a few Dr. no one seem to know what was causing it, proably some sort nerve problem in th spine. It lasted about a year, I did not use opids for this.

    Anyways I was having trouble with my gallbladder, I put off having surgery to remove it out of fear of surgery. Finally one day I got tired of living with gallbladder problems so I went for the surgery, when I woke up after surgery, no pain between my shoulderblades. Surgen said some nevres that go to gallbladder originate at that part of the spine. I was afraid this pain would never go away because they never knew what caused it.

    So yes I believe that pains can go away, we just need to figure out what causes the pain in the first place.

    Mothergoose

  5. #5
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    I have heard this theory many times but it was never called what you called it. I heard it described as the gate theory. Like your mind and nervous system get so used to the pain and your nerves become hypersensitive so the pain is much more intense and long lasting.

    That may be what is happening with you. I have found a lot of relief from narcotics and a medicine called Lyrica. I take Oxycontin and Oxy-IR daily and my life has drastically improved since I began the narcotic regimen. I had to play around with doses and different meds but now that I am stable, things are much better. Tolerance is a factor we all have to deal with though and it sucks. There are ways around it though. A good pain md will work with you on something like that.

    Good Luck!

    Sarah
    Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

  6. #6
    ICN Member green1577's Avatar
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    Hi ladies, thanks for your replies.

    Mothergoose, thanks for sharing your experience with the shoulder pain. You hit the nail on the head--if they could figure out what's causing the pain, they might be able to fix it. But my doctors keep telling me that they don't know what's causing it. My urologist thinks it's all in the bladder. My pain doctor and urogyn think it's not IC per se but a pain syndrome. I really wish they could figure it out.

    Sarah, I just started the narcotics a couple months ago. We started with Tramadol, then methadone, and now Oxycontin. The problem is that they don't really work for me. They help, but they don't take all the pain away. And I get used to them in a matter of days. I wonder if we'll be able to get off of them one day? I think it's possible, reading through some of the success stories.

    I just started on 25mg of nortriptyline, so hopefully that will help. The drug that's worked best for me up till now was Elavil but it stopped working at 5 months. I also didn't like the weight gain and fatigue. I'm hoping the nortriptyline will work because I've been off tricyclics for several months now. I've heard lots of good things about Lyrica. Is it much better than Neurontin? I tried Neurontin with no success a year ago. Again, the weight gain was a problem and it didn't resolve the pain. But Lyrica sounds like it must work better because so many people take it for IC. Do you get weight gain with that? Ah, the tribulations of being a vain ICer! I know the pain relief is the priority, I just wish they could find something that worked and DIDN'T do that.

    Thanks,

    Anna

  7. #7
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    Actually, a lot of doctors are switching more to the gateway theory. My folks here in NYC put IC in two camps: the ulcerative kind, and the 'hypersensitive' kind. It explains, in part, why many of the drugs don't work on type B, as it's really about the nervous system.

    I'm on Tofranil, but honestly, it doesn't really do anything for me. It did the first two days, then nada, and I've gone up in dose. I don't think vanity is the only issue with concern for weight gain on these meds. Weight gain causes a host of other issues, and many of these drugs are quite toxic to the body to some users. Lyrica, for instance, has many side effects other than weight gain, including eye problems. It also creates an environment in which a lot of patients end up reliant on multiple drugs to handle their situation. For me, Lyrica would likely be out simply because of the constipation factor. I already have terrible trouble with that. It's a lifesaver for others.

    As far as changing the central nervous system, I was in pain for four years, then poof, good for two, and total remission for three. I am back in flare, and can't seem to find anything that really controls the pain, except percocet for bad pain days, and pyridium for general discomfort days.

  8. #8
    ICN Member SandyRN's Avatar
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    Ok, I understand the gat theory, thank you Sarah!

    I'm one that is on multiple meds, methadone, lyrica, soma, zanaflex, the list goes on.....they do work for me, but I am finding that I need a higher dose of lyrica. It works for a while then it seems to wear off...It really helps a lot for about 4-5 hours then I'm wishing I could take another dose. I'm at 200 2x a day right now and hoping to go up at my next pain mgmt appt. I don't have any side effects from it, none. no weight gain, no eye problems, etc. The only problem I have is adjusting to a new dose and the sleepiness I get is overwhelming. Then after a few days it's just a relief to me and it's fantastic that I've got a med that really does help with the fibro pain where nothing else does. I've actually lost about 10 lbs while on it...that is probably due to watching what I eat and moving more since I feel better on it. ::knock on wood::

    I'm glad someone was able to address your initial question because I just wasn't sure what you were talking about to begin with....now I understand!

    My pain has never just gone away, ever. It's there every day, every minute of the day. I'd just about give my right arm for remission. Even though I have relief from my meds it's not total relief, I still have pain that doesn't go away.

    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.

  9. #9
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    For those of you who have tried Cymbalta with no relief, have you ever tried 120 mgs? Twice the normal dosage.
    My pain management doctor prescribed that and none of my other doctors have ever heard of prescribing that much. But it works great for me!
    Something to consider!

  10. #10
    ICN Member Berkshire Road's Avatar
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    I did/do have that gateway syndrome, was untreated for nine years and now have used narcotics for about 4 years. Recently, for no reason that I can determine, I've had an enormous reduction in pain. I'm now taking no breakthrough meds, and we're discussing lowering the dose of my fentanyl patch so we can see what's really happening.

    But I just wanted to let you know that yes, it can get better. I had a full remission once; unfortunately, a huge amount of stress and a tampon conspired to throw me back into a symptomatic state. That lasted for some time before this current improvement. Now I wouldn't say I'm in remission, but I have days with a zero pain level with meds, and we're just going to start tapering down the meds to see what the pain levels would be without meds. Seriously, it went from an average of 7-8 daily pain level with fentanyl and oxycodone, to zero, overnight.

    Hold on to hope!
    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

  11. #11
    ICN Member green1577's Avatar
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    Hi Carolyn,

    Thank you so much for your reply. I feel much better now

    OrlandoP, thanks as well. I hope this flare is a short one and you get back to feeling good soon. What you said about the hypersensitivity is interesting, and it corresponds to what most of my doctors have told me...all except one think I have a pain disorder rather than an organic problem with the bladder structure. However, I developed my bladder symptoms when I stopped my hydroxyzine and started taking Yaz birth control simultaneously, so who knows...

    Stacey, thanks for the tip about Cymbalta dosage. I will bring it up at my next appt. Do you get any significant side effects at that dose? I felt emotionally great at 30mg, so 120 must be awesome The only thing I didn't like about Cymbalta was the price...insurance isn't covering prescriptions for me right now, so I have to be thrifty.

    Well, I wrote this message last week when I was having awful pain and I had just seen the pain doctor, which usually depresses the hell out of me because he doesn't sugar-coat enough but the strange thing is, the pain has disappeared twice in the last month or so--last time was for just a few days, and actually today I'm feeling pretty good--very rare in the last 6 months. Maybe it's the nortriptyline kicking in, or maybe it's the hormones. I started my period today after not having one for ages due to continuous BCP. The pain was horrendous while I was on them, and then disappeared for a week when I went off. Then it came back for a couple of weeks, got very intense during the last few days, and took a hike again today when the period started. Do any of you notice patterns like this with birth control? I'm convinced it has a negative effect on my symptoms, yet when I stop taking it the pain just doesn't disappear. The doctors don't believe me...but we know our bodies better than they do!

    Thanks!

    Anna



    Anna

  12. #12
    ICN Member green1577's Avatar
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    Oh, I should add that the pain is probably not really "going away" but I mean that I'm not thinking about it when I'm sitting, etc. I'm still taking pyridium and a little Oxycontin, but usually even with those I get breakthrough. But hey, I'll take it.

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