The Fear and Loathing of Pain

By amypollock82

3 min read

I officially had pain medication (morphine) put into my pump along with the muscle relaxer baclofen and then I was so ill for the last week not even being able to keep down water. I thought to myself please don’t be my pump making me sick. It’s really hard to go back from having constant morphine directly into your spinal fluid. That also might work.

Adjusting to this new medication

I don’t actually know how it would be if I’d have to stop this medication. I waited a week of being super sick to text my doctor just in case it was the flu or just in case I needed to get used to the medication. If I were to tell him to early he’d assume it was the medicine and put me back into the hospital. I’ve had enough time in that hospital.

Then all of a sudden I just stopped getting sick the day I told myself I would call my doctor and tell him I’ve been unable to eat for a week and I only drank water just so I would have something to throw up.
I was so terrified since I had so many problems when the pump was put in. (Silver lining tho I lost a lot of weight- it’s probably not a good weight loss program but it still took me down 20lbs.)

Today was that day that it just stopped and I was finally able to see how I felt with the medication and I now know I’ll need an increase but honestly I haven’t felt like I’ve needed anything else for most of my pain.

This new medication provided some clarity

I’ve had some problems with severe osteoarthritis and I now know what needs to be fixed and what needs to be let go. When you hurt all over all the time the issues with your body seem to blend and you can’t pinpoint individual issues but now I know exactly what and where things hurt. I’m still in a lot of pain but there’s hope that I’ll have a future that’s going to be my new normal.

My life has changed, and I need to accept it That’s what I need to accept now is that my life has changed for good or bad I can’t go back now and it was my last hope to take my pain level down from a 15 to a 7-8. We all know there is no 1 to 10 scale for people in the kind of pain we are in. If we went to the emergency room every time we were at a 10 we would never leave. Not to mention ER doctors actually get mad if you go to the ER for chronic pain and usually will send you away, so what’s the point. Reflecting on pain and medicationI wish they could figure out how to show the actual amount of pain a person is in. I think that would help the war on drugs and also not exclude people who aren’t lying about being in excruciating pain. I depend on my doctor the mostBecause of the drug crisis I have tethered myself to my doctor since he’s the only one who can take care of my medicine in my pump. If I ever went to the hospital they would need to call him first before any treatment can be given no matter what.. I also got new bling in the form of a medical bracelet. Lol All because doctors can’t treat pain patients without the fear of losing their practice or license. Insurances are getting involved now and won’t let you have the medication if it’s over a certain amount per day despite having a prescription.I’ve paid so much out of pocket for my care it’s insane so I had to go the drastic route and now I’ll need to work out with my doctor if I ever leave the area so he can contact another doctor where I want to go in case of an emergency (leaving the country is almost a dream from my past) since withdrawal from a constant epidural being pumped into me could actually kill me since the medication goes to my brain and not just taking pills. The reward outweighs the risk for meYou can stop taking a pill not so much when they took those pills and put them directly into my spine that does not pass through my blood. It’s super scary but I have to admit it’s worth it. The reward completely out weighs the risk at this point in my life.Good luck to all that endure the pain that makes you nauseous and never seems to end. Coming from someone that doesn't have much faith in the medical system, there’s something out there that works for you so never stop looking!

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Tamara Haag Moderator & Contributor
Hi amypollack82, I hate that you've had so many challenges to endure. Thank you for sharing them, as others who are in pain can know they aren't alone. The frustration of trying to find relief for pain in the midst of a national opioid epidemic is very real. Thanks for sharing what that has looked like in your life. How are things going a couple of days later? I sure hope that the cease in sickness has continued and that you at least aren't dealing with that on top of all the rest. And I hope that this pump will end up bringing you some pain relief and improving your quality of life. Do keep us posted on how you are doing, and know that I am rooting for you and hoping that all thge lengths you are going to for your health will pay off! Wishing you all the best, Tamara
christine.laaksonen Community Admin
First of all, Amy, I am so glad to hear that the pump has been helping bring you some relief. That is wonderful news. I am sorry that you have had such a long and difficult journey with finding treatment for your RA. It can be so frustrating trying to find a treatment to bring some relief. It sounds like this pump might be the thing for you. Has your nausea been kept at bay still? Thank you so much for sharing here with us, Amy. We appreciate that you're here. -- Best, Christine (RheumatoidArthritis.net Team Member)
David Advent Moderator & Contributor
Hi Amy, I'm so sorry to hear about the challenges you've been experiencing lately with finding the right treatment. I know this is an incredibly frustrating time, but we are always here to support you! Please keep us updated on how you are doing, and thank you for sharing. -David (RheumatoidArthritis.net Team Member)
ashleyf Moderator
We really appreciate you opening up to our community and sharing your journey here with us Amy, and we hope that you continue to feel comfortable enough to do so. It sounds like this has been a very long, and challenging, journey to finding a treatment that helps bring you relief and I truly hope that the pump will be your golden ticket for a while- you truly deserve that. I really like how you point out that those living with RA, and other chronic conditions, really can't use the classic 1-10 scale for pain because pain is much deeper than those 10 numbers. Tamara, our team member who also commented here, wrote an article that offers some suggestions of new pain scales for RA that you might relate with: <a href='https://rheumatoidarthritis.net/living/new-pain-scale' target='_blank'>https://rheumatoidarthritis.net/living/new-pain-scale/</a> Please know that we are all thinking of you, and sending lots of love your way. Warmly, Ashley (RheumatoidArthritis.net Team Member)
Richard Faust Community Admin
Hi Amy, Sorry you have had these struggles, but glad to hear that the sickness stopped and you have been able to get a grasp on how the pain medication is doing. You mentioned out of pocket expenses, so I wanted to share with you this article from our contributor Lisa on programs to help with RA medications: <a href='https://rheumatoidarthritis.net/living/finding-help-to-afford-your-ra-medications' target='_blank'>https://rheumatoidarthritis.net/living/finding-help-to-afford-your-ra-medications/</a>. This programs may not help with the pain meds, but could be of assistance with other RA medications. Hoping from this point you can further fine-tune your treatment. Best, Richard (RheumatoidArthritis.net Team)