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    • #15631
      Bailey Vincent

      Do you take pain medication everyday?

      I wrote about pain meds on my Instagram account last week, and the pension for stigma in both the medical and chronically-ill community. People are hurting, and they say hurtful things to those openly discussing pain management.

      I wish we talked about pain medication more, both in our communities and with our healthcare teams. I have been worried that taking a med everyday to make it through this difficult time in my own health journey. I worry about what meds I take, and how, and when, even when they’re meticulously monitored by experts in kind. I worry about how little we talk about the “after”… After the meds aren’t needed or the chemicals change.

      I know it will work out and all will eventually be well… but I just wish more care and conversation was given, without the worry of personal optics.

      I know this is a sensitive subject but – if you feel comfortable:

      What has been your pain medication experience in the past?
      Have you ever had a difficult time either on or off them?
      Do you have a pain management specialist, or does your CF team cover those needs?

    • #15632
      Jenny Livingston

      My experience with pain meds has been pretty limited. Even following surgeries, I find that narcotics don’t help much and I feel terribly while on them! When I had severe pain related to multiple pulmonary emboli, I was given a combination of IV and oral pain meds for a short time. A few days later, I opened Facebook to find that I’d posted some things and added a bunch of people I didn’t know, and I had no recollection of doing this!

      Even though I have such little experience with them, I think part of me has always feared the same things you talk about here. Some of my immediate and extended family members have suffered with addiction to pain meds, and I’ve worried about that potential for myself. I think that if we talked about this more openly, as you said, with our healthcare providers and within the community, there would be less fear and misunderstanding.

      All that being said, Bailey, you have nothing to feel badly or guilty about for needing meds right now. Truly. Just like other medications are necessary for certain things (nobody would shame me for needing to take enzymes with meals) sometimes managing pain is a necessity, too.

    • #15638
      Paul met Debbie

      I can second that: limited experience only.

      I used oxycodone/oxycontin for a few days after appendix surgery. Didn’t like the effect, made me more drowsy than I felt comfortable with. Also it suppressed the breathing reflex, which caused my blood oxygen level to drop and I was unable to sleep well with it, because I gasped for air every half minute, which woke me up often – very annoying. I stopped as soon as the first sharp pain started to diminish, so my experience is limited. No one told me of the severe addiction risk of this stuff, so I am glad I didn’t need it for long. No withdrawal effects (besides more pain, which I found preferable at that time).

      On another occasion I used Tramadol, which did not suppress my breathing and worked well enough to get me through the first two weeks of two broken ribs (combined with paracetamol and diclofenac). When I started to reduce the dose slowly after two weeks, the side effect was I couldn’t hold my food after diner. Noticing that, I immediately stopped cold turkey and next day fortunately the problem was gone. In future situations I certainly would try Tramadol first and if possible not use something stronger like oxycodone.

      I used diclofenac for several years continuously in a low dose for its anti-inflammatory effect (but it is a mild painkiller as well that reduced my joint-pains). It allowed me to reduce the need for IV antibiotics without having exacerbations for 5 years. Recently I had an exacerbation nevertheless and the antibiotic worked so well on the infection that the inflammation also almost disappeared. So for the time being on that course I have stopped the diclofenac. I might start it again if it allows me to reach another equilibrium with less antibiotics in the future. It’s a balancing act.

      I think using strong pain medication (opioids) for a couple of weeks can be a good thing, but after that the risks of dependence or even addiction are becoming considerable. Fortunately, after most successful surgeries the need for such strong painkillers should be gone by that time too. I think the risk for dependence or even addiction increases if the medication, besides killing the pain, makes you feel “good” (euphoric) as well. For me this was not the case fortunately, on the contrary: I disliked the effect on my mind, which made it easier to stop as soon as the pain allowed for that.

      My cf team was not involved in the appendix situation, although my pulmonologist was informed and consulted about this on my request. I think it’s unfortunate that I was prescribed oxycodone nevertheless after surgery – they should have known better.
      With the broken ribs, I went to the ER to check for a possible pneumothorax, which was not the case or only very minor. I was seen by one of the cf-pulmonologists there, so this might be the reason they prescribed a painkiller that did not suppress breathing, which was a wise thing. The other reason: me specifically asking for it.
      As far I know, the cf team does not have a pain specialist. The hospital probably does, but I guess the patient must ask for his/her involvement specifically. Something to remember for the future.

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