When to return to work?

[Latitudes9]

How did you handle returning to work/looking for a new job? I know this question has been asked before, and that everyone's situation is different, but if anyone has any advice, I'd be glad to hear it.

I'm 25 years old and have been dealing with new daily persistent headache (NDPH) for the past 12 months. I was originally working an office job when the pain started, and tried to "push through" the pain and use work as a distraction, but ultimately the pain was too much and I had to quit.

I've been working on pain rewiring/TMS methods for the past 6 months or so, with no success. I've tried meditation, reading about pain science, somatic tracking, meeting with a TMS therapist, various medications, etc. and absolutely nothing has worked. I know that nothing is wrong with my head, so I could start looking for a new job, but since I haven't made any headway with the pain, I'm worried that I would go back to work and then have to quit because of the pain. But at the same time, I know going back to work is an important part of recovery, and I do want to hopefully do it eventually, I'm just not sure when.

Even in pain, I've always been able to do pretty much anything I could before the pain happened, it just really sucks and I don't want to go back to work and have my quality of life go down the drain. I know that recovering from TMS takes time-- sometimes months or years-- and I don't want to rush it, but I also don't exactly have months/years to wait around for the pain to fade. I've thought about starting with volunteering or working part-time, but the thought of going back to any kind of work while I still have pain seems daunting and depressing. If I can't figure out how to deal with the pain now, when I have so much free time, how am I ever going to deal with it with work and everything else in the mix? Prior to starting TMS work, I'd been looking into nerve stimulators, because even if they weren't a perfect fix, at least having one might take the edge off of the pain enough to function.

I don't want to impose an arbitrary deadline on myself to find a new job, but since I don't know when my TMS will fade, how do I handle this situation?

 

[TG957]

@Latitudes9 , it is definitely a hard dilemma that you are facing. Have you thought about your anxiety over returning to work being a fuel for your pain? Is it possible that by unconsciously setting a deadline and obsessing over the need to work you are exacerbating your symptoms?

This below may well be you TMS trigger:

but the thought of going back to any kind of work while I still have pain seems daunting and depressing

If this would help, in my experience working was actually my lifeline during the time when pain was at its worst. I was fearful of not working more than I was fearful of struggling at work.

 

[Dorado]

I totally agree with @TG957 on fearing going back to work being a potential TMS trigger for you.

I'm of the opinion that waiting to "heal" (I put that word in quotations because we're all already healed, we simply need to relax our minds and sympathetic nervous systems) and putting off important activities such as working prolongs our symptoms more often than not. Having too much extra time to focus on symptoms can frequently make us feel even more out of our element and like everything has been taken away from us. My biggest recommendation for people is to establish a healthy daily routine, and for most of us who aren't retired and loving that lifestyle, that includes some type of work. I remember my ex who was a trust fund baby saying something similar.

It's a form of avoidance. If you're able to perform other activities with the headache, you know you're still adding value and capable of living your life. I was never able to take a break from work; I was promoted exactly one year before my serious symptoms came on.

For what it's worth, I've had a serious headache all week. I'm feeling sensitive to light and sounds as well. I know the cause is stress. Focusing on my interests including - but not limited to - activities I can perform at work (such as implementing strategies and mentoring) has helped quite a bit. It does help that I genuinely enjoy what I do and have a fantastic work environment.

To be honest, a nerve stimulator would probably serve as nothing more than a placebo. What helps you feel relaxed? Are there any other activities you've been avoiding? Were you enjoying the work you were doing before?

 

[Latitudes9]

@Latitudes9 , it is definitely a hard dilemma that you are facing. Have you thought about your anxiety over returning to work being a fuel for your pain? Is it possible that by unconsciously setting a deadline and obsessing over the need to work you are exacerbating your symptoms?

This below may well be you TMS trigger:



If this would help, in my experience working was actually my lifeline during the time when pain was at its worst. I was fearful of not working more than I was fearful of struggling at work.

I've definitely thought of it as being a potential trigger, and have thought that maybe I should just suck it up and try to go back to work. But I know from prior experience that trying to work while in pain just makes me more frustrated/sad/angry, so I'm hesitant to make the leap. Plus, being off work gives me more time to try to get the pain under control, although nothing's worked so far...

Maybe you've experienced this, but for me, trying to carry on a normal life while in pain is absolute agony. I CAN do things, but I hate my life every second, because I hate how the pain feels. Work would be a distraction, but also would be so so hard just to pretend to be "normal."

 

[Latitudes9]

Thanks for your response and advice. I agree that going back to work could be a potential trigger, I just also know from past experience that working while in pain sucks, and I don't want to go back to that. I do have a daily routine now, but I literally have to force myself to do it, because constant pain makes me not want to do anything.

I know you're trying to relate, but this is not a normal headache. It's not even a migraine. It's a persistent, never-ending burning sensation in my skull that has taken up every ounce of attention I have for the past year, without a break. So when I see people talk about their headache for "a week," it just feels fundamentally unhelpful and not even close to being in the same ballpark.

The only other activity I've been avoiding is cooking. I used to really like it, but now putting food on the table in combination with everything else seems to require a Herculean level of effort that I just don't have right now. I still exercise, clean the house, do laundry, etc. I guess that's part of the problem-- I used to be able to relax by exercising, reading, watching TV-- but now, pain always intrudes, and I can't relax unless I have alcohol (which is also the only thing that makes the pain go away). I don't really enjoy ANYTHING anymore, because that's impossible while in pain.

So I've been trying to relax and add more activities that I enjoy into my life, but it hasn't been helping. If I could take a pill that would just black out the world for days on end, I would, just so I could get a break from the pain. Sleep is the only thing I enjoy, because then I'm not in pain.

Anyway, thanks for responding-- it means more than you know. I know everyone's situation is different, and I really do appreciate hearing your experiences.

I totally agree with @TG957 on fearing going back to work being a potential TMS trigger for you.

I'm of the opinion that waiting to "heal" (I put that word in quotations because we're all already healed, we simply need to relax our minds and sympathetic nervous systems) and putting off important activities such as working prolongs our symptoms more often than not. Having too much extra time to focus on symptoms can frequently make us feel even more out of our element and like everything has been taken away from us. My biggest recommendation for people is to establish a healthy daily routine, and for most of us who aren't retired and loving that lifestyle, that includes some type of work. I remember my ex who was a trust fund baby saying something similar.

It's a form of avoidance. If you're able to perform other activities with the headache, you know you're still adding value and capable of living your life. I was never able to take a break from work; I was promoted exactly one year before my serious symptoms came on.

For what it's worth, I've had a serious headache all week. I'm feeling sensitive to light and sounds as well. I know the cause is stress. Focusing on my interests including - but not limited to - activities I can perform at work (such as implementing strategies and mentoring) has helped quite a bit. It does help that I genuinely enjoy what I do and have a fantastic work environment.

To be honest, a nerve stimulator would probably serve as nothing more than a placebo. What helps you feel relaxed? Are there any other activities you've been avoiding? Were you enjoying the work you were doing before?

 

[Dorado]

I won’t have my headache for very long or at a stronger intensity because I’ve been through this before - my nerve problems were 24/7, taking up every ounce of energy I had indeed and beyond painful to the point of having a nervous breakdown in a prominent ER. I had posted on this forum about looking into assisted suicide at one point, scaring a bunch of people. I couldn’t hold my cell phone or pens, feel my cat’s tail or bedsheets rub against my ankles, touch keyboards or a computer mouse (super distressing for my job, and my company even bought me voice activation software, but that doesn’t even cover like 75% of my tasks), lie down, take showers and feel the water, swim in the lake (my digits would turn numb as well as purple and yellow), wear clothes comfortably, drink coffee, stand outside when it was less than 60 degrees (my city is in the “frost belt,” so that doesn’t work out), stand for more than 10 minutes without blood pooling in my feet, etc. It was driving me absolutely mad and my inner circle had no idea what to do because I was at my wits end. I completely lost it.

I was nearly sent to the psychiatric ward by the ER workers, but was ultimately told to go to either Mayo Clinic or Johns Hopkins because they could tell I was in serious pain and dismay, and needed to be checked out elsewhere. I had visible symptoms like freezing cold hands, limbs changing colors, skin indentations, etc. that they were puzzled by as well. I did go to one of those hospitals for a week, which was the only time I took off work (strange timing - I originally had a “staycation” planned for the week after, but canceled it because I didn’t want to be away for two consecutive weeks despite having unlimited PTO). Working was extremely stressful given how much even touching a keyboard hurt, but I had more anxiety about losing my job and having to move back in with my parents, which was initially the focus of my therapy at that time.

I know it doesn’t seem relatable, but a lot of us have been there with other symptoms. I’d probably have a much worse headache had I not experienced this with other things and created an action plan that works for me every time. I sometimes have my nerve symptoms come back, but they’re not nearly as bad and don’t last longer than a few minutes or at the most hours, as opposed to months on end with zero breaks. I hope you feel better soon - you’re not alone!

 

[TG957]

It's a persistent, never-ending burning sensation in my skull that has taken up every ounce of attention I have for the past year, without a break.

What you are experiencing is called neuropathic pain. I had it in my hands, and it was spreading to my arms and shoulders. It was worse at night, so my sleep was severely impacted. That pain was horrible, I would not wish it on my worst enemy. I can relate to what @Dorado says about assisted suicide. The only thing that kept me going was that I had people in my life who needed me. I used topricin to alleviate pain temporarily but it was never completely gone. It all eventually went away as I worked through my emotional issues.

 

[Balsa11]

I had something similar while I was working in a remote internship. It worked out because I could focus on something else instead of the pain, had people to work with, and could relax/nap/go outside in between meetings. My eyes would get dry a lot from staring at my screen, but once I did more TMS work and blinked more, they got better.