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    • #15102
      Kathleen Sheffer
      Participant

      Hi all,

      I’ve been less active lately because I’m dealing with acute pain from a hemorrhagic ovarian cyst. Yesterday I had a migraine as well and ended up throwing up. I’m wondering what medications you take for pain? Tylenol just isn’t touching my pain right now, but I’m not able to take any NSAID’s (nonsteroidal anti-inflammatory drugs) like Advil because of my transplant-related medications. When I had PH, Advil was off limits as well and I had to be very careful about which pain medications I tried because of the risk of interactions with PH therapies. Tylenol was always the safest option, but didn’t help with more acute pain.

      What medications do you take for pain management? Has your doctor prescribed any stronger medications that have helped? I had some bad experiences with the narcotics I was prescribed after my surgery (read: constipation) so I’m hesitant to try those again. But the pain is impacting my ability to function so something’s gotta give.

    • #15103
      Brittany Foster
      Keymaster

      @kathleen-sheffer I totally can relate to this 100%. I have had hemorrhagic cysts before and the inflammation to the surrounding tissue and pelvic inflammation that is can cause just triggers so much discomfort. Something that has always helped me is therma care heat wraps (the ones for menstrual cramps are a Godsend and they last for up to 8 hours). Besides the heat, I was prescribed percocet 5-10 mg and would take it every 6 hours. I also have issues with constipation so I would take a colase or 2 before bed or a stool softener with it like miralax. I am also on chronic laxative use so I would take those along with the softener. For me, vicodin makes me sick but percocet works way better and less side effects. I know the pain and honestly, tylenol would never tough it for me. I was one of the only patients that my gyno would give narcotics to monthly because she knew just how bad this was for me and when you take them as prescribed it makes things easier to manage (at least it did for me anyways). I hope it resolves soon and that you can get out of this flare of pain. If you ever need to vent I’m always here !

    • #15160
      Vanessa Vaile
      Participant

      I hope you’re feeling better @kathleen-sheffer. This out of my area of experience, which includes neither transplant nor hemorrhagic cysts, although I did have major Dalkon Shield complications decades ago. On the basic of that, yes to the heat. If permitted, a mild muscle relaxant might help. Recently, following dental surgery, I learned that Tylenol and Ibuprofen can be taken together. If neither suffices, perhaps combining them might — worth asking your doctor about.

      • #15185
        Brittany Foster
        Keymaster

        Vanessa,
        The muscle relaxants help me when I am in a lot of pain too. My body always seems to tense up everywhere which just leads to more wear and tear and inflammation! Relaxing the muscles is important and when in a state of a lot of pain, it can be hard to relax ourselves through a more natural approach like yoga and meditation. Sometimes we need the medications and there’s no shame in that 🙂

    • #15207
      Randolph Reynolds
      Participant

      I empathize and grieve for anyone having chronic pain issues. Most of my pain comes from my infusion site and my back which can at times completely knock me off my ability to function properly. I too have to be very careful of constipation but if I use my old techniques of miralax and lots of water it tend towards going in the opposite direction. Diuretics have been prescribed for me for swelling and weight gain but that adds to the problem. I don’t handle opioids at all. Gabapentin helps but makes me extremely drousy after a while. It seems that a point of sharp pain will radiate through parts of my body. I want to run from it but cannot. Committing myself for some activity that is helpful for some greater cause gives me some kind of boost, probably because my mind is focusing on other things. However, when that is over my pain seems to get worse. It is like changing tracks and I search for something in the medicine cabinet to help. At night I have trouble sleeping because of the infusion site pain or back pain. Often I just take a tranquilizer and sleep. I have read C.S. Lewis book “The Problem of Pain” three times and I sort of grasp what he is saying in the Christian understanding of this problem but of course prayer floods my mind as if in desperation. Medications work for a while if they are strong but the side effects are very difficult. I wish I could recommend something novel. Blessings to all of you during a season that should be free of pain and full of hope.

      • #15208
        Brittany Foster
        Keymaster

        Randolph,
        Thank you for all your feedback to this post. I couldn’t agree more with what you’re saying here. Medications do a lot to help but they also can cause other symptoms of their own. For example, for me a pain medication that is a combination of ibuprofen and vicodin works great for pain but it makes me feel tired and just groggy , especially the next day. The same thing happend when using some of the medications that help me sleep. I agree that exercise is a great way to get your mind off of things. What are some of your exercises that you do and what do you enjoy doing for exercise the most that doesn’t seem as exhausting (i know exercise can be tough for many of us). I’m glad you are trying your hardest to take care of yourself.

    • #15212
      Randolph Reynolds
      Participant

      Hi Brittany,
      Actually I am unable to exercise in the true sense of the word. Before I got diagnosed with PAH I worked out in the gym and jogged. I think the first clue that I had a problem was when I’d be jogging my heart rate would go way up. I thought that was normal but when I mentioned it to the Pulmonologist I was seeing for sleep apnea he added oxygen to my nightly system. It wasn’t until much later that I got worse.
      What I do now is spend one morning a week volunteering at the local hospital and spend about three hours on my feet and walking. That is very challenging with out POC. I am also without extra oxygen when I play hand bells and of course this is the season for that. We are at 5500 feet and I would be more likely to be able to sustain exercise if we were nearer sea level. We haven’t come to grips with that.
      Cheers

      Randy

      • #15218
        Brittany Foster
        Keymaster

        Hi Randolph,
        I’m sure the extra elevation doesn’t help with that. I feel the effects of elevation pretty easily. Your symptom that you mentioned when you were exercising and had the increased heart rate sounds very familiar. This happened for me too. I was having heart arrythmias with exercising which was a sign that I was putting too much strain with the physical activity that I was doing. Definitely listen to your body when it tells you to rest (even though I know that can be hard). That’s great that you are involved with playing the bells. My uncle does that too and it’s always so awesome to watch the concert they have. Hope you’e able to make some accommodations for yourself if you need it 🙂

    • #15239
      Jimi Mcintosh
      Participant

      I currently take Oxycod-actem 325/10 up to 4 per day, I try to manage on 2 per day, really bad days 4. I was formerly on Fentnayl 25, 50 and 100mcg every 72 hour, along with Percocet. Walmart and some other pharmacies are only filling one week of a 30 day supply. Also, some insurance companies are no longer paying for pain meds. the only notification you receive is when you get to the pharmacy. No prior notification.

      For those on Medicare, check the approved medications list, but keep in mind the insurance carrier can change or drop meds on the list without notice. Humana, has several pain, blood pressure meds no longer covered. The federal government is looking at patient assistance grants and co-pay assistance offered by drug manufacturers as bribes and it may have a big impact on speciality meds. Write your government reps to get these assistance programs in place, the co-pays on some meds is more than most people can afford.

      a legal drug exchange would be helpful for those of us that are constantly changing or titrating speciality medications. I hate disposing of expensive meds that could benefit someone else. Some medicine recycle centers will not take pain meds, injectibles or speciality meds.

      I apologize for being long winded and venting, I have had a painful week and I have been exposed to a lot of information, that may affect all of us on this journey.

      • #15247
        Brittany Foster
        Keymaster

        I’m sorry that you are managing so much pain right now Jimi. I know firsthand the effects that pain can have on the body and the mind. In my opinion, it’s best to get the pain under control and avoid damage from having pain constantly.

        I have had that happen to me at the pharmacist before or at the doctors office where they tell me they can only give me “x” amount of pills. Some doctors are really getting looked at and scrutinized about pain medication but what they fail to realize is that some people really do need this medication in order to function somewhat in their daily lives.

        I know that there is a huge drug epidemic and that people do abuse drugs, but for those of us that are suffering, it does more damage to stay in chronic pain than to take medications as prescribed. I understand your need to vent about this and thank you for making others aware of this too.

    • #15252
      Judie
      Participant

      Kathleen,
      I also have Rheumatoid Arthritis which I see a Rheumatologist for. I also have a genetic condition called Ehlers Danlos Classical Type which is felt to be the cause of my PH. Because I see a Rheumatologist I am able to have pain meds prescribed as both conditions can cause acute pain as well as the
      every day chronic pain I deal with from them.
      I am also an x hospice palliative care nurse who was taught and I strongly believe being in pain negatively effects one quality of life. Especially chronic pain. Unfortunately and I do understand the opioid crisis and abuse has made it bad for patients who genuinely need pain management to function and to have a decent quality of life. I have no addictive issues and use pain medication very sparingly. I also feel 100% myself when taking them which is proof that my body is in pain.
      I am not sure what will happen. We need physicians advocating for chronic pain sufferers as currently we are stuck in the middle of this crisis which really has nothing to do with us!
      Judie

      • #15267
        Brittany Foster
        Keymaster

        I so agree with everything that you are saying here Judie. I know the doctors sometimes seem stuck in this crisis too but for those of us that have been diagnosed and have proof of these conditions you’d think that they should be focusing on making sure that we are using the medication as prescribed and being honest with us if they think there are risk factors for mental illness that need to be discussed. It can be frustrating. I have been fortunate to get medications to get out of those really bad pain days, but I know others aren’t as lucky.

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