Health Organization for Pudendal Education

Curious....

How much does your pain vary from day to day?

From hour to hour?

Does it seem to be solely dependent upon your actions (sitting.....lifting.....)?

My pain was so bad on Tuesday (for no apparent reason), I was desperate. This evening (Thursday) after a pretty active day, it is much better.

Thought it would be good to document this aspect for the record.....So please respond with your experience.

Thank you.

Less pain,

Jackie OUCH

I would sat it is all over the map and moves around the body and not always dependent on activity. I sometimes wonder that it is not just too much activity but possibly too much laying around which makes me feel like I cannot win. Of courses since I habe multiple ailments - remaining PN after PNE surgery, SIJD from that surgery, bunion pains (failed surgery) and arthrtis from that surgery, I am never too far from pain and tough to determine what is going on. The PN and SIJD alone cover hips, low back, pubic and rectal and not sure some is just from laying around when the feet hurt or PN etc. Sitting certainly ups the pain and I have to be careful not to do much bending and worse twisting with lifting because getting the pelvis out of aligment is a killer. I am with you on the less pain for all of us!
Janet

Jackie, my pain was typically best in the AM and worse by evening. Sitting made it worse and lying down was only slightly better than other positions. Pain was basically there 24/7 but some days were better than others for no apparent reason.

Violet

My pain varies A LOT. Some days I'm somewhat functional (pain level 4) and others I've actually passed out (pain level 10).

Sometimes the pain intensity is clearly connected to activity or sitting. Other times, increase in pain comes out of nowhere.

I feel like the unpredictability of pain level and when it's going to happen is one of the hardest things to cope with.

Emily B.

Hi Jackie,
My pain too is very unpredictable. Typically it's better in the a.m., but not always, and it moves too. I could have low ab pain, vaginal pain (not very often anymore), achy legs, SI joint aches, various burning areas in my legs, prickly sensations in my legs, ischial burn & sting, hamstrings that burn when sitting. Some days I can sit, and some days I do it, and I pay for it.
I have recently gone for 4-5 days in a row with almost no pain really, that was unreal. Then I can flare, and burn, burn, burn.... for no apparent reason. I always try to figure it out. I still need to take a little hydrocodone about 2-3 times per month, but that's not too bad. It's the burning/prickly sensations that are the worst for me actually, if that starts in the morning, I will have it all day. I work part time, 3 - half days. I have yet to find a good sitting option there. When I leave typically my hammies are painful, and the ischial tubes too.

I do feel my pelvic floor therapy has helped me some. I am more active, and have learned how to relax a little more. I am going to try noritriptyline now, it's an oldfashioned med, but I'll give it a try. I would like to get off my cymbalta, it's sooooo expensive. Oh, and it's almost a year of pelvic PT for me, still going about 2x per month.
Unpredictable pain is very, very difficult to deal with. It's so hard to make plans. I'm going on a vacation in August, flying to Colorado. I made those plans when I was feeling good. I haven't gone on a real vacation in 3 years I think. I really want to do this for my hubby too. I'm sure you can all relate.

take care,
Debbie

In some ways it is helpful to read these comments--I know I'm not crazy. A relief! On the other hand, I'd rather be crazy...

I can say ditto to all especially the blasted burning and leg stinging. Yeah. So you're not alone. I'm not alone.

How's that acceptance cycle working for me?
#painsucks

Location of pain for me is quite predictable, it is pudendal distribution only - but sometimes left sided, sometimes right sided, sometimes both. That's the only variation. Oh, and the nerve zaps, which do still happen from time to time, down to the feet, mostly on the left, and occasionaly down my arms too, again mostly on the left.

One thing I was not able to really identify until I started keeping a diary was the very real factor of delayed pain. Increased pain not just at the time, but several hours later, and then a really big flare a day or even two days later.

Car journeys for instance, I would be ok on the day of going to see the consultant, maybe some discomfort that evening, needing to rest and take some additional pain meds, next morning seemingly over it - but then have a major flare later in the week and be wondering what had caused it - duh.... And doing the appeal assessment for a disabled parking badge, that nearly did me in completely, walk here, walk there, up these steps, down these steps how fast can you do this comfortably. Yes well, I took it a bit too fast. Not too bad at the time, then later in the week it hit me and I was completely out of it for the next three weeks.

So, delayed pain, very big deal indeed for me, even with these meds I still take things very slowly and carefully.

My pain is also variable, non significant in the morning, and gradually sets on during the course of the day. Sitting really is the culprit for me. I can still feel the pain while standing or laying down, but feels more like residual pain. We all heard nerve pain occurs somewhat delayed. I guess that's what I mean with "residual". I do get nerve zaps, sometimes standing, or when bending/kneeling. Don't really hurt but feel uncomfortable.