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    • #23192
      Jen Cueva
      Moderator

      Last month I was admitted to the hospital for IV pain management. I have pain medications at home, but after several days with no relief, my PH team sent me to the ER. I was there for several days on IV pain management. Sadly, the stigma around pain medications, I felt embarrassed. I did finally write a column about this and wanted to share it with y’all.

      Do y’all see a pain management doctor? Have you been hospitalized for IV pain management? Have the medical providers made you feel less than or guilty for needing pain medications? Share your stories with me on chronic pain.

    • #23195
      Colleen Steele
      Keymaster

      This is such an important topic, Jen. Thank you for sharing your personal experience and helping others feel less alone with their pain managements needs and decisions.

    • #23232
      Rebecca Talkie
      Participant

      I do see a pain management Dr. But not for anything that is connected with PAH. Many years ago, the stress on my body from my work as a nurse finally got to me. I had been injured lifting a patient early in my career with I was 21, but it resolved with rest. Every once in a while it would rear its ugly head when I would do something ordinary as in unload the dishwasher. But I worked 34 years, although part time, on a high powered cardiac unit and as the patients got heavier ( We are talking 600+ lbs) and I got older, my back finally gave. After a whole year of treatment, including steroid shots and therapy, the Doctors “gave up” and referred me to pain management. This signaled the end of my career as nurses cannot work with narcotics in their system. Do I feel a sigma – Dang right I do! I have told nearly NO ONE about this. I feel safe because this is a closed group. Although I have never been admitted for pain management, I have needed it after a couple of surgeries. I was getting attitude from a couple of nurses over it, but since I never was a clock watcher and I never gave them any trouble, they stopped. I hate mentioning it to other Doctors but if I ever have to have surgery again, I have to. One little Percocet isn’t going to do anything for surgical pain for me. Jen, I have no idea what kind of pain you are going through.If you need to see a pain management Dr., find one that you like and that actually does an exam before you start talking about what you need. You will have to sign a contract. It is the law. If you don’t like the Dr. Don’t be afraid to change. You won’t hurt their feelings. If you are embarrassed, just don’t tell anyone you don’t trust with this info. Especially, anyone of your family or friends who has or had a drug problem. Keep your medication safe. If I travel, I lock it up in the hotel safe. Most rooms have one. Good luck finding relief.

    • #23235
      Brittany Foster
      Keymaster

      @becca you bring up and important point about feeling like there is a stigma around medications. I have been taking percocet 5mg on and off for the past year. I totally get it when you say that it won’t do anything for pain relief after surgery. It is like our bodies sometimes adjust to a medication and that’s when you need a doctor that is willing to work WITH you on coming up with a different plan or trying a different medication or dose of medication. It is awful to live in extreme pain and for some of us, a pain medication gives us some sense of normalcy back and can really increase our energy levels when used the right way. It’s definitely important to keep track of medications and know just how much you are taking and it is good to know the medication that may interact poorly with it and do things like slow respiration down. I have had to sign contracts with my doctors, but some days, without the medication I feel like I would just end up being in and out of the hospital. And I DO NOT Want to do that for pain management at all.

    • #23265
      Jen Cueva
      Moderator

      Thanks, Colleen, I appreciate your support as always. I am sure that many here have experienced chronic pain and just want to let them know that they are not alone.

    • #23266
      Jen Cueva
      Moderator

      Hey @becca,
      I, too worked in nursing and can relate to lifting on patients, etc.. I am sorry to hear of your pain issues. I certainly can understand you not wanting to talk about this. I think that even as nurses, pain medication has become taboo and a “stigma”. I have had my share of nurses and doctors who gave me a hard time. I, too, like you never gave them a reason to even think that about me. I tend to think that it depends on the actual nurse, too.

      I had 2 nurses while in the hospital this last visit who asked if I wanted Morphine for a headache? Really? I do not usually take anything for a headache, I just answered yes when they asked about headaches.

      I started seeing a pain management doctor and she has been really good. Of course, that was my first appointment and I go back next month. I also had my inpatient pain management tell me that I have a very high pain tolerance. Those notes were also given to me outpatient pain management doctor.
      I am sorry that you have dealt with this issue, too.

    • #23267
      Jen Cueva
      Moderator

      So true, @brittany-foster,
      Like my PH doctor and inpatient pain management said, I was taking the same morphine dose for so long, it is like my body is no longer responding. I am hoping that the new pain management doctor will help so I do not end up in the hospital for pain management.

      I also, keep track of what I take and when. I am actually a “bad” patient with pain medications as I do not want it to make me feel groggy. But there comes a point, where pain takes over my body entirely and I cannot continue to function like that. I am working on staying on top of my pain better.

    • #23279
      Jimi Mcintosh
      Participant

      Yes, I use to see a pain management doctor, because the pain from
      2 herniated disc, knee surgery and 2 knee replacements was wearing on me and I had tried most of the opiates and had minor relief, pain got so bad that I added fentanyl patch’s 25, 50 and finally 100mcg , every 3 days. Along with all the other meds.

      I had several spinal injections, with minor relief. I sought a better way to manage my pain, hynopsis, acupuncture, Tenz units etc., I was afraid of becoming dependent and not being in control. I was a management plan, that would help me taper off the narcotics.
      I was confused by being offered more pain meds on each session. Decided that I could manage my pain by mind control, taking just enough meds to dull the sharp pains and allow me to function. ocassionally, I have to resort to 4 pills a day, mostly I take 2 and try to concentrate on calming things.

      Yesterday the VA, announced that most vets were being given less or no more pain meds. Pharmacies are only filling one week. I and others are suffering with life threatening issues and uncontrollable pain. We do not have terminal cancer, but failing organs, PTSD and self esteem issues. We are not criminals, we are survivors. When in too much pain, the mind and body shuts down.
      Treat me if I have a dependency, but do not shoot the messenger.

    • #23280
      Alfred Gronroos
      Participant

      Hi. I just started seeing a pain management Doctor at the local VA.I have severe pain in legs and groin. I am not on any drugs for this but I can not follow instructions about physical exercise because of the pain. I am over weight and need the exercises but…. tough. The Doctor scheduled me for a cat scan and the results did not tell us anything so now I will be going for a bone scan. At least he is attempting to help me. It is hard to keep perspective when it hurts and you do want to do things. Walking is almost impossible at times. But I will keep trying. Al

    • #23284
      Brittany Foster
      Keymaster

      @jimi this may be an unpopular opinion, but I strongly believe that there is a HUGE difference between being DEPENDENT on medications to help us get through the day in the best way possible and being ADDICTED to this medication. Sure, there should be some type of withdrawal plans in place but STILL this doesn’t mean that the person is addicted to it. Prime example: I was on SSRI anxiety meds for almost 2 years and had to taper off of them because my mind and body were dependent on it. I went through some withdrawals, but did this mean that I was “addicted” to anxiety meds? No. It just meant that in order to avoid any serious health complications I needed to get off of them slowly and appropriately. I think that Dependency and addiction are often used interchangeably and THIS is what really hurts those with chronic pain and serious health conditions because we are then treated like we have an addiction when we just need the medication to be able to function normally as possible in society.

    • #23285
      Brittany Foster
      Keymaster

      @alfredjohn I recently just got a bone scan. What was supposed to be just one scan of my lower back area turned into almost a full scan of my entire body. The tech before said that if the bone scan looked about the same from the one I had almost 10 years ago then only one scan was needed. I had about 5 scans so I know that something must have changed. I am kind of nervous about the results because I really don’t want to hear that I have something going on with my bones at just 28 years old, but sometimes the pain in my legs and back through the day gets unbearable. Even in my hips sometimes, especially if I am more physical I really feel it at the end of the day. When does most of your pain show up? What time of day?

    • #23287
      Jimi Mcintosh
      Participant

      The bone scan is good to have, it identifies any changes in bone density, thinning can lead to fractures, hip issues, spinal issues. Some of our meds rob you of calcium, potassium and other minerals. Brittany, you have been they so much and they need a baseline to plan your treatment.

    • #23294
      Jen Cueva
      Moderator

      Hi Jimi.
      So sad how the VA and other places are making it tough to access the care and the medications that one may need. I, too, tried without pain medications for years. but, at times, pain medications are the only way to get through the day, as you mentioned.

      Wishing you the best with the VA and managing your pain. It is a multifaceted approach as it sounds like you have tried.

    • #23295
      Jen Cueva
      Moderator

      Well said, @brittany-foster, this is a huge difference. Pain management by medication is often time the only way that we can get through a day. We are not abusing the medications, we are using them for what they are intended for. Thank you for sharing that.

      I try yoga, stretches, and other things in addition to taking pain medications as I mentioned above.

    • #23296
      Jen Cueva
      Moderator

      Hi @alfredjohn, welcome as I do not think that I have seen you here before. I am sorry that you are dealing with pain. It certainly can take over and limit your ability to do the things that you want to do. I am happy to hear that you have a doctor that is open to listening to you and want to help. I hope that they can figure this out for you and offer you some relief soon.

      Please keep us updated and keep up with the positive attitude.

    • #23298
      Brittany Foster
      Keymaster

      Hey Jen @jenc same with me. I have tried other types of therapies in addition to the medication that I take. I have been trying to cut down on the medication that I use for pain just for my own reasons, but it is hard when I need a medication every night. Sometimes I feel like I am doing something wrong because I am only given a certain supply for the month. I find that if I know I have a procedure coming up I have to “save” some of the medications and therefore forfeit relief I get at night with it so I can take a couple extra another day if needed after surgery. It shouldn’t have to be like this and we should be given extras “as needed” without being labeled as addicted. It is hard!

    • #23300
      Brittany Foster
      Keymaster

      @jimi I agree! A baseline would be good. I completely forgot that I had a bone scan 10 years before this one so it would be good to compare what it looked like then to now to see if there are any changes and if there are changes then they can figure out what is causing it hopefully!

    • #23392
      Alfred Gronroos
      Participant

      Brittany, sorry it took so long to reply. My pain has no set time toact up. I can be in less pain and suddenly it occurs. It feels like a nail being shot into my hip, or hips, can be one side or other, also in leg muscles and lately like bee stings in my ankles. Chiropractor has made back pain become minor. I tried acupuncture but I did not feel it helped. I know I do need stress relief, a lot could be becuz of that. Al

    • #23400
      Jen Cueva
      Moderator

      Hi @alfredjohn, I am sorry to hear of your main. So true, it has no set time to act up. You mention that it feels like bee stings. Are you also diabetic? It sounds like neuropathy that occurs often with diabetics. I have a family with diabetes and worked in nursing before my PH. Diabetics are not the only ones who experience nerve pain, but that is what pops up.

      I’m glad to hear that your chiropractor has helped with some of your back pain. Stress also does not help us in any way. We all have stress and learning to manage stress can prove difficult.

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