Please Stop Telling Me to Take an Antidepressant for My Autoimmune Disease.

How many doctors have told you to take an antidepressant for your chronic pain?  My number is around seven, and most of them stated it was my only option for pain management.  This was generally done in a matter-of-fact manner, not a compassionate, I-care-about-what-is-wrong-with-you approach. 

But what if my pain is caused by something that needs to be treated another way?  Shouldn’t we look further into this?  My health is not something to be dismissed or treated with a one size fits all antidepressant label.

I’m getting really tired of having antidepressants pushed onto me when I’m asking to treat pain that’s caused by my autoimmune disease.  Most recently, my joint pain reemerged after we cut my immunosuppressant medication in half, so I asked for a new treatment strategy.  The doctor told me to try meditation and that she would recommend amitriptyline.  An antidepressant.  For my stiff, tender, aching, burning, swollen, painful joints in my fingers and wrists that have historically only been a problem when my autoimmune disease is not being controlled.

Before I venture too far in expressing my frustration, I want to acknowledge that antidepressants can work quite well for some types of chronic pain.  There’s quite a bit of research showing that they can help with fibromyalgia-type pain for some people.  In fact, I’ve tried three different antidepressants over the years for my own fibromyalgia and muscle pain.

First I tried citalopram, which turned me into a zombie and did nothing for me.

Then I tried venlafaxine – for almost a year, which also turned me into a zombie and did nothing for me.

Last year, I tried milnacipran, which turned me into a sweaty, sleep-deprived nightmare and did nothing for me.

It seems that taking antidepressants may not be a good fit for my body, especially if I’m not suffering from depression.

However, I am still willing to have a discussion with my doctor about treating certain types of pain with antidepressants, even though it hasn’t worked well for me so far.  But when I’m seeking treatment for my lupus?  That is when I’m really NOT okay with a doctor pushing an antidepressant on me.

Lupus has been causing all sorts of problems since I had to cut my immunosuppressant medication in half a few months ago.  It attacked my eyes, causing inflammatory lesions, erosion, and a corneal melt.  I don’t know about you, but MELT is not a term that I want to be associated with my precious eyesight.  It’s been months and my eyes still haven’t recovered fully.

I’ve also got increased fatigue, rashes, dryness, and cognitive dysfunction, as well as anemia that hasn’t been responding to treatment, high levels of inflammation, and joint pain in my hands that is affecting almost every part of my life.  Honestly, it’s hard not to feel depressed sometimes when my hands hurt all day long – it’s almost constant misery.  And it makes it difficult for me to care for my two-year-old.  

So sorry, doc, that I’m not all bright and shiny on your depression screening questionnaire, but I bet my mood would improve a lot if you treated my disease.  Actually, I know it would – because my mood improves significantly on my low pain days.

Unfortunately, I’ve had mostly poor experiences with doctors recommending antidepressants.  The majority have acted like antidepressants are the right solution for every single patient with pain without taking much time to evaluate the source of the pain. 

The thing that really gets to me is that it’s not usually a discussion.  It’s usually a doctor telling me this is what I need to do and I will not be offered anything else.  That’s not okay with me.  It needs to be a discussion and there need to be other options.

Last year, when my rheumatologist recommended milnacipran (Savella), it was very much a discussion.  And I was really appreciated her approach.  We were talking specifically about my chronic muscle pain (not my lupus – there was another treatment underway for that) and she walked me through a couple of different meds and why she thought it might help.  So I tried it. 

My experience with milnacipran ended up being a complete disaster but I still have no problem with my doctor recommending it because she did so considerately and thoughtfully.  I will continue to listen to her recommendations for my chronic muscle pain.  She also never withheld other ideas for pain management or treatments for my lupus.  She is a breath of fresh air compared to so many other medical professionals that have treated me since I became chronically ill.

Unfortunately, my most recent upsetting encounter was with a respected specialist that my rheumatologist referred me to.  My husband and I took nine hours out of our day to travel to Duke for my third appointment with the specialist.  At the appointment, she told me to take an antidepressant for my recently returned joint pain. 

I can get almost any doctor to provide me with an antidepressant for chronic pain if that’s what I wanted.  I don’t need to have my husband take off work to drive my 28 weeks pregnant self – who can barely sit upright because of pregnancy issues – all the way to Duke for that recommendation.

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It’s so difficult when you are expecting to be offered solutions from a doctor during a visit, and then you leave without them.

But what really set me off – beyond refusing to treat my lupus symptoms during pregnancy – is when she recommended that I start the antidepressant on the day I come home from the hospital after delivering my baby.  Aside from all the other reasons why I don’t want to do this, I’m not okay with it because of the three horrible experiences I had with other antidepressants.

I do not want my postpartum period wrecked by side effects from an antidepressant and uncontrolled lupus or joint pain.  If I do try another antidepressant in the future, I need to be in a more stable place physically where I am better equipped to deal with the side effects.  Furthermore, she recommended a medication that wasn’t necessarily a good idea to take while nursing.  I don’t know if I’ll be able to nurse this baby, especially if no one will treat the pain in my hands before I deliver him (!) but she didn’t even ask.

I was nervous ever since my first visit with this doctor when she called my lupus into question.  Which is fine, she can be skeptical that I have lupus.  Maybe there is actually something else going wrong in my body.  But what’s not okay is ignoring autoimmune symptoms and refusing to provide disease-modifying treatment.  Autoimmune diseases can cause all sorts of long-term damage if not controlled, and this doctor wasn’t interested in checking to see if anything else was responsible.

My blood work currently doesn’t show active lupus, but I’m already at the point where my quality of life is being significantly impaired by my inflammatory autoimmune symptoms.  So why can’t we treat them?

One day, I may try out another antidepressant for my chronic pain.  I see the value in that kind of approach for my muscle pain, which has always been unresponsive to my immunosuppressant medications.  That pain does need to be managed another way.  In the meantime, I do employ other strategies, such as meditation and guided imagery, to try to calm the pain center in my brain.

But if I try an antidepressant again, it will not be during my vulnerable postpartum period where everything is already in absolute chaos.  (Unless, of course, I experience postpartum depression.) 

If I do try an antidepressant, it will not be to treat autoimmune-related disease activity and it will only be after a thorough discussion with a thoughtful doctor.

You can ask me to consider an antidepressant for depression. Or for chronic pain that’s not caused by an autoimmune disease.

But right now, my autoimmune disease can and should be treated another way.  So please stop telling me to take antidepressants for it.

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