Chronically Frustrated

I’ve spent the entire week working on a different post, but instead I’ve decided I need to share some very real frustration on behalf of myself and other chronic illness patients.

Imagine you have an ear infection. You make a doctor’s appointment to treat your ear infection. You assume, rightly so, that your doctor will write you a prescription for an antibiotic to treat the bacterial source of the infection. Imagine instead, that your doctor offers you every treatment option for your ear infection EXCEPT an antibiotic.

This is very often what it is like to be a patient with chronic pain. You know that a narcotic pain medication would treat your pain and improve your quality of life, but your doctor is unwilling to prescribe one to you because of the current level of scrutiny surrounding  the “over prescription” of opioid pain medications in this country.

I use quotation marks in that last sentence because they are not being over prescribed to patients like me. In doing so I’m not trying to make light of a very serious issue, but to bring attention to the people that are suffering as a result of a very complex and misunderstood problem. And, while I’m happy to engage on discourse on the subject, I won’t do it here on this blog.

I’m trying to work with my Rheumatologist to find something to better manage my pain, and, while she’ll prescribe me an anti-depressant for pain management, she won’t prescribe me a narcotic pain med. Makes sense, right?

I’ve always been the “I hate pain meds” girl. But I’ll let you in on a little secret: I don’t actually hate pain meds at all. What I hate is the stigma associated with taking them. That somehow I’ve given in, or, worse yet, that I’m not strong enough to overcome this pain. If I know one thing about myself it’s this: I am beyond strong. I am superhero strong. Physically, emotionally and mentally. I wouldn’t have survived the last 21 years with this disease otherwise. But sometimes pain, chronic, all-consuming pain, is stronger than me, and it leaves me battered and bruised, too weak to fight back any longer.

That’s where I am now. Battered, not quite broken, but getting closer every minute.

Over the past few months, I’ve “played nice” with my doctor taking Tramadol and Flexeril while they’ve been woefully inadequate at addressing my pain. Tramadol made me anxious – like I wanted to crawl out of my own skin. While Flexeril makes me sleepy but not quite sleepy enough to actually get quality sleep.

So I tell my doctor, “hey, this isn’t working”, and she suggests Neurontin. For those of you that don’t know anything about the drug, it’s typically prescribed for nerve pain and requires a round-the-clock regimen – not something you can just take as needed. I sourced this suggestion to my #ChronicLife family via Twitter, and they reported that not only does it make you drowsy as my doctor mentioned, but also foggy and unable to remember things such as the correct word to use in conversation. What. The. Actual. Fuck. How is this a solution? Pain and fatigue are hard enough to manage on top of work, but how am I supposed to work effectively while taking something with known cognitive side effects?

So I told her, “Nope. That’s not for me”, and what does she come back with? Elavil. An anti-depressant. Believe it or not, this is a common practice in managing chronic pain/achieving higher quality sleep for some patients, but the side effects are pretty shitty. Under the tag “Less Serious Side Effects” are the following:

  • nausea, vomiting, constipation, diarrhea, loss of appetite;
  • dry mouth, unpleasant taste;
  • feeling dizzy, drowsy, or tired;
  • trouble concentrating;
  • nightmares;
  • blurred vision, headache, ringing in your ears;
  • breast swelling (in men or women); or
  • decreased sex drive, impotence, or difficulty having an orgasm.

Let’s talk about that last one for a moment, shall we?

Without getting into graphic detail, I’ll tell you that managing one’s sexual health while having a chronic illness is daunting. It’s something that isn’t talked about nearly enough in our patient community, and, in 21 years with RA, not one doctor has ever asked me about my sex life. Nor has one ever communicated sexual side effects from medications to me. Those I’ve always had to research on my own. The closest thing I’ve ever gotten is “Are you on birth control? You have to be on birth control while taking Methotrexate.” So you’ll ask me about my birth control, but not my sex life – hence the need for birth control? Thanks, Doc.

If I sound angry, it’s because I am. I’m angry at constantly being faced with decisions like this. I’m angry that my sexual health already suffers as a result of pain and other symptoms. I’m angry that my doctor would suggest an anti-depressant before she would suggest a narcotic drug. I’m angry that people in this country can’t distinguish between addiction and long-term pain management. I’m angry that so many of my fellow patients and friends are vilified and treated like addicts. I’m angry that I feel so uncomfortable asking her for something I think would help. I’m angry that I have to be worried that asking a simple fucking question may be viewed as “drug seeking”. I’m angry that I can’t remember what it feels like to not be in pain. I’m angry at being angry. It’s not in my DNA, and I try above all else to choose positivity. To choose gratitude every single day in the face of sometimes insurmountable odds. But, perhaps even more than angry, I’m tired.

So tired that all I can do today is try to talk myself off the ledge. Maybe eat a little dinner, snuggle with Penny and go to bed in preparation of doing it all again tomorrow. Tomorrow I’ll write an email making my case for Norco or maybe Nuycenta. And tomorrow will be a better day – because it has to be.

11 Replies to “Chronically Frustrated”

  1. I take Gabapentin for CRPS associated with Ehlers Danlos Syndrome and although it did make me a bit vague for the first week, that does fade and if your pain is nerve related it could help.

    I was so against it, but I will eat my words and confess that it has made my baseline pain levels much lower. The one thing is does still affect is short term memory and my vocabulary. Things like where the hell did I just put my socks down? And can you passed the thingy? And yet I can still convert floating point binary numbers and bathe in mathematical formulae. Each time you step it up, the vagueness returns.

    1. Thank you so much for sharing your experience! I’m so glad that you are getting some relief!

      The challenge I’m facing is that my pain comes 20+ years of damage to my joints. It’s just so hard to find anything that reaches it and the more people I talk to, the less convinced I am that this is the solution. Today all of that frustration bubbled over and I wanted to let people know what so many of us are facing. As a friend of mine said to me tonight, “People don’t realize that they won’t even treat our chronic pain anymore.”

      Thanks so much for taking the time to read. I hope that you have a restful night!

    2. MissHippy, I know it is not funny at all, I laughed when I read your reply because I take Gab. Five times a day and I do the same thing. I have to agree, I do get drawgy and foggy, but, it helps so much.

  2. Well said, Anna. You’ve put into words what nearly all of us are thinking most of the time. Thank you for touching on so many aspects of this continuing, appalling frustration.

    Maybe someone out there will listen.

    Sending a warm hug and heartfelt wishes for a good night’s sleep with little pain.

  3. OH MY GOSH! It’s almost like you crawled inside my brain and found the words that I am unable to express. I have fibromyalgia and systemic lupus so I also have chronic, every day, never-ending pain. Sometimes it’s mild enough that I can actually stand for one whole hour and teach kiddos during Sunday school. Other times it takes a ridiculous effort even to bathe or brush my hair. I had to stop working 2 1/2 years ago. My rheumatologist is a kind & seemingly intelligent lady but she does not like prescribing narcotic pain meds because of supposed “rebound pain”. What the heck?! Who cares about rebound pain? I would just like a little quality of life. I would like to be well enough to occasionally eat lunch with my friends and perhaps even go on a date (or have sex lol) every now and then. I have chronic illness but I’m young and not ready to die yet! She will give me 30 Percocet/month so I am luckier than other people but it’s not enough to control my pain. Heaven forbid I have a lupus flare. To “treat” the pain’ I take gabapentin/neurontin 3 times/day, 60 mg cymbalta (an antidepressant)/day, & diclofenac potassium 3 times/day. Needless to say my brain is often fuzzy. Sometimes I cannot find the right word–perfectly normal words like lighthouse and station wagon. Sometimes I cannot remember people’s names. Sometimes I cannot remember a simple thought from one second to the next. It’s disconcerting and frustrating because I am an intelligent and educated woman yet half the time I cannot complete simple sentences. I know that I just wrote a HUGE comment but mostly I wanted to say thank you for your words! God bless.

  4. I was diagnosed 6 months ago with RA. I believe I’ve had it for a long time because I’m already ready for surgery on my knee already. I don’t take pain meds right now because I am afraid of them just as you say you were. I am afraid they will work and I’ll feel fabulous. How crazy is it that I stigma is potentially keeping me from feeling better.

    1. I’m so sorry to hear about diagnosis and your impending knee surgery. I’ve said it before and I’ll say it again: even after living with RA for more than 20 years, I can’t imagine what it be like to be diagnosed as an adult. I was “lucky” (there’s got to be a better word for what I’m trying to say here) to have grown up with RA in the sense that I don’t know any better. The good news is that today the internet – social media especially – provides a wealth of information, resources, support and community. I know that the sheer volume of info out there can be overwhelming, and so if you ever need help navigating please don’t hesitate.

      All that being said, try not to fear pain meds. I know SO many people that take them and successfully manage a better quality of life as a result. You CAN take them without becoming dependent on them! Again, if you ever need support please don’t hesitate.

      Thank you for reading! Best, Anna

      1. Well hi Anna and thanks for stopping my page! I ask many questions here so your input every now and then would be awesome! I get some great advice from my wordpress friends!

  5. This blog really has me thinking. It also surprised me. I have had MS for 20+ years and within the last 3 was also diagnosed with RA and fibromyalgia, ; )) I look back so longingly to my MS only days!! There are a number of adjustments and losses I (and my husband) have had to face with these latest diagnosis. In fact, nearly a year ago I need to stop working. (Something I was determined would NEVER happen,)

    One of the hardest things for me to get my arms around (gently, of course) is the pain management. I know I want and need to manage my pain so I can be productive, cook a few dinners, have lunch with a friend, and all important exercise, exercise, On the other hand I have three beloved first cousins who became addicted to prescription meds and that terrifies me. I naïvely assumed that when / if it became time when I needed my docs help to manage the pain by also using narcotics, which I have used sparingly to date, I just assumed I would go to a chronic pain clinic of some kind where the focus is to manage nearly constant pain at a more intense level than what I currently experience day to day.

    Your blog has given me something to think more about so I can have a productive discussion with my doc next I see him.

    Thank you for doing this!! Jo

    1. Thank you so much for sharing part of your journey, Jo. I can’t imagine managing RA on top of two other chronic conditions. You’re a super hero in my book!

      This was a really hard post to write because I hate the idea of being angry – let alone sharing that anger with others. That said, SO MANY people have opinions on how opioid pain medication is prescribed (and they’re only too happy to share those opinions on Facebook, etc.), but most of these people don’t know what it’s like to rely on long-term opioid therapy just to live, work, walk, etc. I hope that those people read my post and gain a different perspective on pain management vs. addiction. If I can help other patients have informed discussions with their doctors? Even better!!!

      Thank you so much for reading. I hope that you’ve been able to have a productive conversation with your doctor since then. Best, Anna

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