Pain & Scleroderma

Don’t let the bastards drag you down.

New M.D.s are emerging with the belief that opioids should never be prescribed, and instead, other issues need to be addressed. Now, unless they have a cure for scleroderma, they need to be taught about chronic pain. It’s a pain in the ass, I know- but telling myself that the doctor I am speaking to doesn’t understand the treatment of my chronic pain, and it is my job to teach them, has saved my life on too many occasions to count.

Before I figured that out, my initial response was, ” f##k those mother##king motherf@&kers”, but that only delayed things. I have found that teaching a doctor what works and explaining that scleroderma pain is not nerve pain and the only way to resolve the pain is by relief.

Opioids work because there is no cure for conditions like scleroderma. Resolving the issue would mean that scleroderma would have to be in remission and all of the damage done to the body is returned to the pre-scleroderma (or “your chronic illness here”).

I have given presentations to first-year medical students about chronic pain, and how denial of pain medication exacerbates symptoms and causes depression, and actually increases the pain. Right now, there is an opioid addiction epidemic. Nine times out of 10, a chronic illness patient who develops an opioid addiction does so because they are forced to suffer higher pain levels before seeking care. The opioids are taken away before pain is resolved. Why is that?

Because we don’t look sick if we are emotional. Healthcare providers are trained to identify emotions as drug-seeking behavior. The actual prevention of opioid addiction by veterans healthcare and really any medical facility have caused an increase of addicts. Initially, someone in pain wants the pain resolved. Here’s what happens: When denying pain relief, pain becomes more unbearable. If you have experienced excruciating pain relief, you would understand why people denied pain relief turn to drug dealers.

Now, you may be asking yourself the same question my parents asked me when I was a teenager, “Karen, what the hell do you know?”

Well, here’s what I know after living in constant pain for 26 years: No one listens to me, unless I am calm and confident about what I’m asking for. After twenty-six years in the VA healthcare system and using private “golden insurance”, I have learned what to ask for. I was ignored by doctors, denied pain medication dosage by well-meaning nurses who thought I had a drug problem.

Now, when I am in pain and a well-meaning doctor or nurse tells me to make an appointment with the pain clinic, we have a little chat. Sometimes that results in speaking to a doctor’s attending physician all the way up to the department head. And nurses who do that, regret it once I tell my doctor who knows I need to be on pain meds in the emergency room. I’ve got stories. Too many for this post- and I want to save you time. If you’re in excruciating pain- I want you to get relief faster than I did. So here’s what I do now.

NEW PATIENTS, PLEASE NOTE: If this situation is new for you, there are things you must get into place:
1. Mental health care. Work with a psychiatrist or even better- a psychopharmacologist along with individual counseling. Insurance & the VA love group therapy. But after years of group therapy and support groups, I found that I needed to learn and work through my own issues. Groups are great after individual care. They try to sell group therapy first because it is most cost-effective. Cost-effective isn’t always best. And before you see a psychiatrist or a psychopharmacologist, you may need to see a therapist first determine how bad your depression is. I advise this even if you think you think you don’t have depression- you may not, but seeing a therapist immediately after diagnosis, will help establish a lifeline you may need later on in your darkest hours.


It took me years of mental health misdiagnoses and it nearly killed me-> My Story It’s not mandatory to read it, but sh*t really went south for me. Depression nearly killed me faster than scleroderma, sarcoidosis, and disability.

After two decades of medication management, self-advocacy, meditation classes, and being a parent, here is what I do now to combat pain.

I pair a sedative with Tylenol or Motrin. If that doesn’t work at home, I go see my rheumatologist for a Norco prescription for 2-3days then wean myself off by alternating with Tylenol and Motrin.

It’s hard to get a doctor to prescribe opioids. I am almost always told “no”r they try to give me tramadol, gabapentin, and new meds when I first ask. So I calmly explain I do not have nerve pain and gabapentin and tramadol work for nerve pain and that I need to bring my pain level down to zero so that I can get some rest. I tell the doctor my plan, that I will take Norco for 2-3 days and then wean off Norco by alternating with Motrin and Tylenol. The narcotic is needed for excruciating pain. (I know, I repeated myself. It’s that important.)

The first rheumatologist who told me she never prescribes opioids ended up prescribing me opiates less than ten minutes later. How? I calmly asked to speak to her attending physician. If I get denied after talking to her attending physician, I calmly make my case to a department head that results in success.

When a doctor or nurse tells me I’m not acting like I’m in pain, I tell them that after years of therapy and PTSD from being denied pain medication, I have learned how to advocate for myself when my doctors do not work in my best interest, I am in survival mode. Of course, they always follow up with a BS line that opiates are bad for me- then I remind them that pain medication is a tool I use to help me recover from infections and injuries. I emphasize that I am here because my pain is out of control. If given relief from pain, I am less likely to use these meds not as prescribed. I remind them that I live with dulling the pain every day through diet, meditation, and movement- and I cannot function in my current level of pain.

Thanks to our culture’s vilification of chronic pain and pharmaceutical company lobbyists, we the patients must teach doctors. If chronically ill patients could afford lobbyists, we’d have a cure for this already. But that’s just my opinion. That doesn’t minimize my gratitude that Big Pharma has medication and treatments to keep me alive. Their salespeople used to give away the best pens. I do miss that.

It’s a pain in the ass- but now, I get what I need. I hope that my experience will save you, the reader, some time; or energize your own advocacy.

Sometimes you’ve gotta tap a doctor on the nose to get them to do what’s needed. (Tap with words, don’t be stupid.)

God gives us only what we can handle.  Apparently god thinks I am a bad ass