Announcement

Collapse
No announcement yet.

Pain worsens significantly with rainy weather; OxyContin isn't working- What next?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Pain worsens significantly with rainy weather; OxyContin isn't working- What next?

    Does anyone else with IC/chronic pelvic pain experience this connection re: SEVERE pain associated with rainy weather?

    I was diagnosed with Interstitial Cystitis/Chronic Pelvic Pain 5 years ago, and tried ALL the traditional medications and treatment options for IC, including pelvic floor physical therapy (which I am also doing again currently). None of them helped. So I had to go into pain management, where I tried Tapentadol/Nucynta (got really bad side effects) and eventually got put on 20mg OxyContin 2x/day, plus 4 instant release Oxycodone pills per day. This moderately controlled my pain, bringing me from a 9-10 to about a 4-5 every day. Tolerable. Allowed me to be partially functional. But obviously not a long-term solution, especially since I am only in my early twenties.

    Fortunately, I happened to move cities the following year, and ended up in an area where it almost NEVER rains, and temperatures rarely go below 50. And that's how I discovered that my pelvic pain is almost ENTIRELY dependent on weather. It's bizarre, I'm not sure exactly why it works this way (my pelvic floor physical therapist said it might have something to do with barometric pressure), but it really, **really** sucks because there's literally nothing I can do about changing the weather. I mean, I can move to an area where it rarely rains once I'm finished with grad school, but I currently have 2.5 years left of school in a city that has great weather 8-9 months a year, but unfortunately the winters are very rainy, and with that my pelvic pain has returned with a *vengeance.*

    So I went back into pain management last week (before that I had been off opiates for almost a year, only using kratom for mild-moderate pain during flare-ups). I explained the situation. And for some reason the pain doc's first recommendations were buprenorphine and methadone? Now, I'm no expert, but I know that those are drugs for heroin addicts, and I did some more research on them when I got home and saw that there's literally no evidence that either of those drugs would help my type of pain. I'm in a bit of an urgent situation because if I miss any more class I will have to withdraw from grad school, which will derail my entire career- so I explained this to the pain doc, told him what worked (moderately well) in the past (i.e. Oxycodone ER and IR), and he hesitantly prescribed the same doses of Oxycontin & IR oxycodone I was on several years ago (except he limited me to 2 10mg Percocets a day instead of 4).

    I fully expected this regimen to work at least moderately well like it did before, at least well enough to allow me to go back to class. **But it hasn't**. Even on the Oxycontin, my pain levels are well above a 6 every day, and the pain is severe enough that I need to stay glued to my bed (the pelvic floor therapist explained that sitting upright for prolonged periods can aggravate the pain, because part of my IC is pelvic floor dysfunction and the muscles down there are hypertonic) and my heating pad. I am falling further and further behind in school, and I am desperate for effective pain relief ASAP. I don't expect that I will need to be in pain management for very long- if this pain behaves the way it has for the past 5 years, it will all but disappear by the time it stops raining so much in late March- but until then, I am in constant agony. The oxycodone certainly helps, but not enough to be able to go to school and if I'm going to be on such strong narcotics, I need to be gaining functional benefits from them otherwise it's not worth it.

    What would you suggest I do? I am already in physical therapy, I have made an appointment with a new urologist (even though there's nothing else urology can currently do for my condition), I've started therapy with a psychotherapist specializing in pain, and I even made an appointment with a naturopath. I'm running out of options. I'm seeing the new pain doc (I've only met him once) next week for a follow-up, and I'm terrified that if I'm honest with him about how the OxyContin isn't working as well as I'd hoped, he'll just take me off of effective painkillers entirely and try me on an alternative with awful side effects like methadone. I've been doing a lot of research on different pain medications, and in my non-professional opinion, it seems like the next thing to try here would be hydromorphone or oxymorphone. Again, this would only be for a short period of time- 2 months maximum- and the purpose is to enable me to be functional enough to go to school. I feel like since they are more potent this would be preferable to increasing the oxycodone to even higher doses, and I did have a dilaudid (hydromorphone) injection in a hospital once and it REALLY helped reduce my pain- more than anything ever has. But I'm scared that if I ask specifically for something so potent, I'll be labeled a drug-seeker, especially since I'm a new patient and I am young. What would you do?

    TL;DR- I am a woman in my 20s with chronic pelvic pain, and I get **severe** flare-ups during rainy weather. The forecast says it will be raining a lot for the next 6-8 weeks, and since I am a grad student, I really need effective pain relief so that I can focus on my studies. The problem is that 40mg of OxyContin a day is only bringing my pain down from a 9/10 to like a 7/6 at best, which isn't low enough to go back to school. I want to try a more potent opiate next (keeping in mind that it will only be for a short duration- 6-8 weeks tops), but don't know how to go about asking for this or if it is even feasible to request this kind of thing. Help?

  • #2
    First of all, I'd like to say to the IC Network.

    I'm so sorry you are in such misery and hope you will find some solutions soon.

    Are you communicating with the office for the disabled at your school? If not, I suggest you talk with them to work out ways that you will be able to keep up in spite of having to miss classes.

    Have you tried keeping a detailed diary, noting time of day, everything that goes in your mouth, activities, items you have contact with, such as personal and laundry soaps, lotions, etc., along with pain levels. Sometimes there are changes we can make that will help.

    I am on a pain management program with a specialist and I have a morphine pain pump that seems to be effective for me, along with oral pain medications. There's so much negative publicity out there these days; you can't pick up a newspaper without reading something about the dangers of pain medication that it can make those of us who need pain control feel uneasy and I understand.

    I wish I could help.


    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

    Comment

    Working...
    X