Miss Understood: Beyond Frustrated

Miss Understood: Beyond Frustrated

Chronic pain patients are faced with challenges on a daily basis. One person’s suffering is no more important than others and everyone’s pain is different. How it affects us varies from back pain, to muscle spasms, to migraines, etc. So what one person is able to do may not be the same as what others are capable of doing.

Lately, I’ve been experiencing pain on a level that I can’t ignore. I’m afraid of taking opioid prescriptions because they knock me out for the entire day, but I’ve needed to take them around the clock and even that isn’t helping.

Arlene Grau

Arlene Grau

I went from Norco to oxycodone (15 mg) because the slightest touch would send me into tears and it was becoming harder for me to hide my pain from others. My daughters couldn’t hug me because — even though I said it was okay — they would see me crying afterwards and they felt terrible, which in turn made me feel like a horrible mom.

My oxycodone has been working in the sense that it puts me to sleep and I don’t feel anything, but when I wake up I feel ten times worse. And I can’t take it all day long because of the addictive nature of the drug.

I’ve been struggling with my hands and fingers lately, they’re so swollen that any movement sends shooting pain up my arms. Even if I wrap them, it’s impossible for me not to move them because I have to brush my teeth and do everyday things for myself. When I need to open a door it takes me twice as long, and if I need to get dressed I’m in tears the whole time because it feels like I’m using two broken wrists and ten broken fingers.

I told my doctor I’ve reached my breaking point. How can I function without the use of my hands? Anytime I try using them they cause me so much agony. Sometimes I wish I didn’t have them at all, at least then the pain would stop. I know that’s extreme and I don’t really mean it, but the pain is just that bad. I’m beyond frustrated at this point.

Not only that, but the deformation has begun and my fingers have nodules on them. I’ve talked to other patients, much older than me, and they’ve informed me that those nodules are also painful and surgery is not an option.

I feel like a selfish child when I think about all these things, but I can’t help it. The way my pain is now and the amount of suffering I’m in is a 10 out of 10 in my eyes. I know it’s only going to get worse and that terrifies me.

How does anyone continue to live this way and what kind of quality of life am I going to have? I try to remain positive and hopeful for the sake of my children and the thought of watching them grow up. They continue to be my motivation. Every morning I put my happy mask on before I greet them because I want their life to be as normal as possible.

If there’s one good thing that’s come of this, it’s knowing that my health issues have affected them in a positive way. They’re kind to the elderly and do things for others without me having to ask.

The next time you walk through a door and someone is behind you, hold the door for them. If a child can do it, so can you. You never know, you may have just saved them a world of hurt.

Arlene and girlscropped1Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or tr toeatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 9 comments for this article
  1. Dennis at 8:46 pm

    You should go back to the patch but instead cut it into 3 smaller pieces and then use them once at a time. Then you could have another less potent med for controlling severe breakthrough. The taboo of pain meds is destroying the quality of life for real chronic pain sufferers. Considering what you have, your going to be on pain meds for the rest of your life anyway unless breakthrough advancements in the medical take place that can fully heal such diseases and conditions. Stem cells is such a treatment but yet again taboo comes into to play. The consensus of society will constantly judge such things harshly because they cannot gain honest perspective of true physical torturous pain and disease cuz it’s rare and not something most will ever feel in a lifetime. Things others can’t understand they tend to dismiss or judge with extreme prejudice. I hope this helps somehow.

  2. Arlene Grau at 11:08 pm

    Thank you all for your responses.
    I guess I should have been more specific, I don’t think everyone becomes addicted automatically or has a hard time getting off of it. I was speaking in terms of myself, I have a big fear of addiction because I have heard so many horror stories and my doctors have drilled it in my head that it should only be used for breakthrough pain. But for me everything is.
    I was on a 50 mcg fentynal patch for nearly a year and the side effects caused me to become so drowsy during the day, I ended up falling asleep at the wheel and was in a terrible car accident. So, since then I’ve refused the patch even though I know it is the one pain medication that will in fact alleviate most of my hurting and let me sleep at night.
    I’m glad some of you have found relief, it always gives me hope. I know my day will soon come.

    Best wishes to all,
    Arlene Grau
    Columnist

  3. Gregg at 10:21 am

    Hi, I have struggled with chronic pain for years and hated to take pain pills. My stomach was often upset, and I needed to take more pain meds over time. I went from taking oxycodone through out the day and being unable to sleep at night. My doctor put me on the Butrans patch so I keep a constant level of pain meds to cover what I term as my body’s background pain. It has helped me a lot, and I only take a pain pill if I have bad break through pain. The patch does not affect my daily functioning. Good luck to you!

  4. Sharon at 8:34 am

    I’m sorry your going through this terrible pain! I’ve been in chronic pain for about 6 years now and have taken the 15 mg oxycodone. It’s side effects did subside for me. I would like to address the term addiction. All of us chronic pain sufferers are most likely taking opioids. I would say we are dependent on them, not addicted. I will say that if/when someone finds a cure for, in my case, RSD I will definitely have to be weaned off my meds. But for the time I am dependent on them for getting up in the morning, bending to tie my shoes, walk, drive, etc. So let’s not get the terms addiction and dependent joined into one when they are most definitely two separate situations.

  5. Susana Soler at 7:14 am

    Hi Lucy,
    A year ago I felt exactly like you, in pain, in tears, depressed. I was lucky to find a very progressive rheumatologist. She took me off gluten, starch, sugar. I eat lean protein, vegetables, fruit. I started going to the gym, slowly at first. I was about 20 lb. overweight. I lost that. I still have occasional RA flares, swelling, but it’s manageable. The doctor also leveled off my hormones. I’m now taking small doses of bioidenticals, plus thyroid — all the other docs said my levels were within range, but she said they weren’t optimal. I’m still learning, but I got my life back. Cheers, Susanna.

  6. Sally at 11:13 pm

    Arlene,
    You can take opioids throughout the day without fearing addiction. You can be weaned off of them very easily. I was on crazy amounts of oxycontin before a back surgery. The pain specialist had me lower the amount by 15% per day until I was off of them for surgery. Please take your pain meds on a schedule. If you do that the pain levels will not creep up throughout the day. And you will not have withdrawal from smaller amounts like those you are taking. Be well & out of pain. Gentle hugs to you…

  7. Trudy at 3:20 pm

    Arlene, I truly feel for you. I want you to know that I was at your point at one time too. I went to a pain psychologist who helped me more than any drug could. I live by the mantra’s, “it is what it is”, and “this too shall pass”. I try not to dwell on the pain, and exercise as much as I possibly can. I guess you call that mind over matter, but it does help. I’m not saying that it cures, or even diminishes the pain, but it does work, I promise. If you can, try and find a psychologist who works with chronic pain patients. One who is understanding to all kinds of therapy. I use meditation, doing one thing for myself everyday, etc., and it has taken me years to get to this point. Most of all, please stop beating yourself up, especially regarding your children. To them, you are their sun, their moon, and their stars. You can do NO WRONG!! Accept yourself for who you are, and they will ALWAYS accept you!! Best wishes to you!!

  8. BL at 1:44 pm

    If you take the meds as prescribed, the side effects usually become less after a few weeks, maybe less. I assume you’re talking about physical dependency. Those who take these meds do become physically dependent on them. If the meds are suddenly stopped, it can range from uncomfortable to close to hell, but there are meds that can help with it that most drs will rx.

  9. Lucy at 12:53 pm

    Hello
    I had to reply as I too use OxyNorm same drug just different name. It does make you very sleepy, I’m not sure if im addicted to it, but I can’t live in constant pain 24/7.
    I also have developed the painful hands, drop stuff all the time. I have the nodules on my fingers and hell it hurts.
    Anyway I just wanted to touch base.
    Kind regards
    Lucy