Standing desk increases my symptoms

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Standing desk increases my symptoms

Postby travelisdangerous » Sun Nov 06, 2016 5:28 pm

I'm in my final year of university and want to start doing work at my desk again, as I find laying in bed with my laptop fairly unproductive and it has got to the point where my pgad gets worse from just laying down anyway.

Pgad is my main symptom, I have mild pain when sitting but the pgad is the thing that really destroys my concentration. So yesterday I decided to create a makeshift standing desk as I always find my symptoms are far less after a long walk. After standing for an hour or so I was fine, very happy in fact. But then about half an hour later the pgad hit me, then I started to get pain along the course of the nerve.

What I don't understand is why this would make me worse, I mean there is no pressure on the nerve area at all, and if I went for a 3 hour walk for example, I'm sure I would have been mostly fine.

I'm currently in search for a good cushion, although I'm not holding out too much hope as everything seems to trigger it!!

Any suggestions on what I could use? And any ideas on why standing makes it worse but walking kinda improves it?

Thanks for reading!
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Re: Standing desk increases my symptoms

Postby RJR » Tue Nov 08, 2016 1:23 am

Hello,
I can only relate my experience, so I would take it in context of others...

I too had pain from prolonged standing.

Then, the day after TG surgery any link to standing pain was gone. In my case my scarred STL had adhered to my R pudendal nerve (from heavy cycling). Once it was disconnected (by surgery) from the nerve it no longer tugged on it, causing pain. Pre-surgery core exercises also led to a lot of pain - post-surgery = no pain linkage. Our tissues and bone structures are connected.

Best,
Bob
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Occasional MRI-guided steroid injections by Dr. Jan Fritz at Johns Hopkins. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU

Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
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Re: Standing desk increases my symptoms

Postby April » Wed Nov 09, 2016 3:30 am

td,

Standing and walking are the same and sometimes worse than sitting is for me. So, what you say matches my experience. In fact, I've been meaning to post this as a question for months but have been too swamped with work to find time. But I'll ask it now: Do others have this experience with standing and walking? For me, there is just a big dichotomy between lying down or reclining (which is how I work at home) and all upright positions. When I get out of bed in the morning, I usually feel an immediate change in sensation---usually (because it's early in the day) it's a mild needling that kicks in, which then gradually changes to the usual burning. I sometimes (maybe 10-12 times since this started 20 months ago) feel sharp nerve pain from sitting (at the left ischial spine) that leads me to lean to the right to get my weight off of that spot or, if possible, to stand up. But that is it. Normally, sitting it just like all the other upright positions.

I'm scheduled to see Dr. Hibner in December and will get an MRI, and as someone else posted earlier, it seems odd to get the MRI while lying down since that is the very best position for us. If something is impinging on my pn (which is how it feels), it doesn't happen when I'm lying down. So, it is hard to imagine how this MRI will show that. But, perhaps misalignment can be revealed when lying down even if the misalignment is not impinging at that time.

Thanks,
April
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Re: Standing desk increases my symptoms

Postby Violet M » Wed Nov 09, 2016 5:56 am

I could not stand for long periods of time either. I would get increased burning pain when standing for very long. I agree with what RJR said about the ligament impinging on the nerve.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Standing desk increases my symptoms

Postby April » Sat Nov 12, 2016 5:55 am

Thanks, Violet. So, the ligament impinged on your nerve just like RJR? I do wonder if that is what is going on with me. I didn’t cycle, as you did RJR, but I did intensively work out on a step machine, which is a bit like your weight lifting and exercise trigger, Violet. Hopefully, Dr. Hibner can give me at least a little more insight in December.

travelisdangerous, in my haste the other night, I missed the important part of your post noting that walking is actually not a problem for you—it’s only sitting and standing. That is different from my experience since walking is just like the other upright positions for me. But, it sounds like we all (on this thread) had/have troubles with standing as you do. I don't know why one would trigger it and the other not. But I do know that I almost never know what triggers a flare; my pain fluctuates for reasons that are almost always unknown to me. In fact, I've kept a diary of activities for over a year, and I've concluded that several things I thought were triggers (e.g., steps) are probably not. I'm not sure if that is helpful, but since you can walk okay, you might try the standing desk a few more times just in case your pain the other day was triggered by something other than standing.

April
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Re: Standing desk increases my symptoms

Postby Violet M » Sun Nov 13, 2016 1:18 am

April wrote:Thanks, Violet. So, the ligament impinged on your nerve just like RJR?


Yes. I don't know if it was exactly the same as RJR's but Dr. Bautrant had to sever the sacrospinous ligament and shave off some of the sacrotuberous ligament at the falciform process.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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