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A Pain in the Head

A Pain in the Head

My head is pounding as I type this. Pounding, throbbing, aching. Like RA, it’s a familiar pain and a chronic condition that I desperately do not want to have. But I do have it–right now anyway. For the last couple of weeks, my tension headaches have been severe and constant, rendering me unable to work or do just about anything. Thankfully, unlike RA, I can usually manage to get my headaches to go away. But it’s not an easy or fast process and they often flare up again.

RA doesn’t operate alone. It affects everything

Do I really need this debilitating head pain on top of my RA pain? NO. It feels very unfair for life to throw this at me, too, when I’m constantly struggling to fight against the assault of RA on my body. One thing I have learned from living with RA pain for 21 years and headache pain for almost as long is this: pain does not act alone; it connects to everything and even in ways that seem strange or unrelated. It connects everything, feeds off everything, affects everything. Is it a coincidence that my headaches began not long after I was diagnosed with RA? I don’t think so.

According to an article from Everyday Health, “about 61 percent of people with severe headaches or migraines also have chronic pain conditions, including RA.”1

I definitely fit into that category, and my headaches began about a year after I was diagnosed with RA, which was in July 1997. I remember spending the majority of the summer 0f 1998 lying on my parents’ couch, suffering from constant, unrelenting and throbbing pain that enveloped my whole head. What was this? After months of doctors’ appointments, tests, and wrong diagnoses, I finally found out what was behind my debilitating headaches: tension.

Tension headaches and RA

Many people probably think: tension headaches? Oh, that’s not a big deal. It’s not a migraine or anything. Well, yes it is a big deal, actually. And if my tension headaches get bad enough, they sometimes morph into migraines. Tension pain, consisting of severely tight and knotted and inflamed muscles, can be unbearable. There are also no quick fixes for these types of headaches. Tylenol, ibuprofen, and other over-the-counter medications don’t touch them. I’ve been devouring muscle relaxers like candy lately and they’re not doing much to lessen the pain. Tension headaches like the ones I often have can require a combination of drugs, exercises, and sometimes physical therapy. I’m doing all three right now and I’m still in a lot of pain.

So what’s the RA connection with headaches?

Maybe it’s somewhat obvious…the stress of RA pain causing pain elsewhere? I think my RA definitely plays a large role in my headaches. From what I’ve been able to discern so far, my head pain is caused by two main things: 1. stress and unconscious tensing/clenching of the muscles in my head/neck/shoulders, 2. clenching my teeth/jaw.

Why am I doing this? Why am I contorting my poor, delicate muscles into excruciating bands of tension and tight knots? I don’t know! My theory is that the involuntary tensing of my muscles is something that I do in response to stress and coping with my RA pain. When your joints are in constant pain, often severe, your body has to compensate for it somehow. You brace for it, you wince with it, and you hold your body differently, trying to survive the assault against your joints. Unfortunately, that pain has to go somewhere, and for me, it goes straight to my shoulders and neck which then eventually takes over my entire head.

How to deal with these headaches

I honestly don’t know the best approach to dealing with these headaches. I’ve had physical therapy for them several times and I know that I’m supposed to keep up doing my exercises regularly to prevent these bad flare-ups. However, real life means that I get wrapped up in working and living and I often forget to do my exercises until I’m trapped in the middle of a bad headache explosion. When this happens, it’s kind of too late. The pain is raging and I get knocked down by what feels like a constant stream of semi trucks running over my head.

So, I have recently returned to physical therapy and I’m also looking into getting trigger point injections at my pain management clinic. Honestly, I think the physical therapy is a waste of time, but I’m hopeful about the injections. And in the meantime, I’m working hard to not clench my teeth while doing all of the silly-looking exercises that have actually helped in the past. It’s either this or cut off my head. We’ll see.

Am I the only one who deals with this on top of RA pain? I feel like I can’t be.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. https://www.everydayhealth.com/rheumatoid-arthritis/living-with/when-rheumatoid-arthritis-gives-you-a-headache/

Comments

  • OUCHRA
    3 months ago

    I also suffer from tension headaches. When talking to my rheumatologist, he related there was no connection. It is a relief to read that others with RA also have this is connection.

    My RA symptoms began 36 years ago, but was not diagnosed until 9 years ago, because I was diagnosed initially with Systemic Lupus and that verdict is still out.

    The headaches began about 8 years ago, and continued to increase in severity for a few years. The headaches also came more often. I see a neurologist for my tension headaches who prescribed Nortriptyline, Topiramate, and Duloxatine. Two did not seem to work that well, and I believe it was the Duloxatine that worked to bring the headache from a 10/10 pain level to1-2/10. Unfortunately, it caused severe memory loss, so I had to stop taking it. My memory is still slightly affected from it, but may also be partially from the constant headaches.

    The headaches, at there worse, feel like the back of my head is being squeezed with vicegrips. I get nausea, and have experienced times of severe dizziness that my neurologist says is related to the constant headaches. The headaches affect my mood, due to dealing with constant pain, and I can become irritable, inpatient, and intolerant. Prior to the headaches, I was the complete opposite of these traits. It disrupts my life in that I can never commit to anything, and spend exorbitant amounts of down time. When I do get up and go, it is usually by pushing through the pain.

    These tension headaches affect my social life not only due to needing so much down time, and not committing to things, but also because it interferes with communication. I am somewhat self absorbed during conversation. Sometimes finding it difficult to concentrate and focus, and other times rattling on- being unable to follow my own thought processes. My conversations are also more negative in that I find myself complaining or talking about my condition or stress related issues.

    What helps: stretching for over a half hour-preferably one hour, heat or ice packs, breathing exercises, Excederin migraine or equivalent, ibuphrophen, avoiding caffiene, and limiting stress. The ibuphrophen barely works, and not at all when the headaches are severe. The Excedrin Migraine has a rebound affect, so eventually I have to increase the dosage, and since it has caffiene in it, will cause the headaches to worsen when I back off of it. I was free of the excedrine, but started taking it again to get through the part-time job I started, and now am relying on it again. I also have a bad back, so I would have to spend about two hours a day doing all the exercises prescribes for my conditions to be at maximum functioning level and that would not include exercise for cardiovascular and general overall conditioning.

    My RA symptoms of joint inflammation and pain have been in remission for many years. I don’t know what I would do if I had to deal with that on top of the headaches. Any help in headache recovery is appreciated.

  • Joyce B
    4 months ago

    I have found that a low dose of Amitriptyline at bedtime helps my tension headaches.

  • zanda1000
    4 months ago

    I’ve suffered with these headaches for almost a year. Over the counter meds did me no good, so I talked to my pain management Dr. I don’t take narcotics, so he did a nerve block twice, which lasted about 2 weeks. I’m kind of scared, but they want to inject Botox in my head. I’m at the point where I might try it.If there’s anybody out there who’s tried the Botox, please let me know if it helped

  • Karen H
    4 months ago

    I absolutely can relate to everything you are describing. I was diagnosed with RA 17 years ago and the head, neck, and shoulder pain eventually made it impossible for me to work. The headaches are less frequent with less stress in my life but still occur regularly. Know that you aren’t alone.

  • melmason
    4 months ago

    I can relate. I have RA, plus I also had to have neck surgery for a nerniated disc about a year and a half ago. My neck muscles are always tense, & at times this results in severe headaches. I used to go to a chiropractor, but I can’t have my neck adjusted anymore since my surgery. I do stretches & neck rolls, wear an oral appliance at night to keep me from grinding/clenching, but sometimes that doesn’t do the trick & all I can do is go lay down in a dark room & try to get comfortable enough to fall asleep & sleep it off. It’s definitely challenging to manage, especially in times of high stress. Just one more thing to deal with.

  • Lawrence 'rick' Phillips
    4 months ago

    Angela, Sheryl says I cause her lots of headaches. Can I tell her it is because I have RA? I knew I had a good excuse.

  • lanikai13
    4 months ago

    I get a lot of headaches too. I’ve been trying a combo of Chiropratic therapy and meditation. The meditation is hard for me as Im one of those, brain always racing people. But, if I plan even 10 minutes a day it does help. I set up a room for JUST this. Rolled out a mat, and have quiet music. Sometimes I crack a window open, even in the winter fresh air helps. Good luck!

  • ckriston
    4 months ago

    I can relate Angela. I have the exact same issues, only I was diagnosed 30 yrs ago. My tension headaches have become a major issue in the past couple of years and nothing seems to alleviate the pain. I’ve recently moved to a new city and changed drs. She prescribed Flexeril, and wow did it work! I don’t care to take any more meds than I already do, but when you’ve tried so many things that don’t work, you’re prepared to try anything

  • Daniel Malito moderator
    4 months ago

    @angela I have been in physical therapy for years and you know what it’s best for? Metaphysical therapy. Seriously. Being in my own room by myself with time to myself without outside stress is great, and sometimes I get a massage to boot. Plus it gets you out of your own house and head and away from whatever the stress is, even for an hour. It might be worth trying. If not call me and ill tell you borderline dirty jokes until you laugh. Ha ha. Keep on keepin’ on Long, DPM

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