I'd like to know if others experience what I am. I don't sit ever since getting damaged, but when I absolutely have to attend to something, I take extra morphine to tolerate sitting.
My daughter had a baby and asked me to babysit five days a week. I have been able to tolerate sitting in the rocker and sitting to change the baby while on extended release pain medication. I don't sit unless I absolutely have to rock the baby and I alternate with laying on the couch. I thought I was doing good but after one week of this routine, by Saturday and Sunday (today) I am in EXCRUCIATING pain. Pain is shooting up my colon, I feel like someone has pliers squeezing my privates, pain is shooting down my thighs in the front, my inner thighs, and pain is shooting in my groin. I forced myself to church and was in agony. I sat on a neck pillow but couldn't pay attention - all I did was pray the sermon would end. I'm in misery.
Have others experienced any kind of cumulative effect of sitting? I don't know what's going on with me - the symptoms are all over the place. When I sat to rock the baby - it was a soft chair - but I thought that I must be getting better because I was able to tolerate it (on morphine). But there seems to be a cumulative effect because after a week of doing that the morphine isn't even controlling the pain.
Is this normal for pudendal nerve damage? My husband said to write everything I do down to notice a pattern but the only thing I did was sit in the rocker for 5 days and now the symptoms are through the roof.
Erratic symptoms
Re: Erratic symptoms
Yes, sitting has a cumulative effect on me also so I try and avoid it altogether. I am fortunate to be retired so don't have to worry about a job but do need to run some errands so just try and do my short driving trips only once or twice a week if possible. Sometime I have to sit more than normal and it does cause my pain to intensify....like a two hour flight. Only way i can stand it is with ice. I make my own so it last longer like on a plane or a longer car ride like from the airport- home. I have tried cushions and they dont really do much for me...I got the best one located where I sit to put my shoes on. But at home I sit very little....use a standing desk and eat standing from a bedside style table raised all the way up. I either stand or lay. I am thinking of getting rid of the couch and putting some kind of day bed or maybe even a real bed in the living room so I can lay and watch TV. Right now the couch is not as comfortable as a bed, it has two cushions instead of one flat surface. I hate to make the living room look like a hospital room but I am past caring what thinks look like.
I have been diagnosed with PFCN problems and PN, so I think they both cause the sitting pain. The two pfcn nerve blocks I had didnt take all the sitting pain away so the doctor thinks the pudendal is also involved. I go in two weeks back to Johns Hopkins for a guided pudendal nerve block, after having two blocks to the pfcn....I have had this pain like 17 months now and am still being diagnosed.
All this standing seems to have been wearing me down this last year. I have lost over 30lbs and cant seem to gain it back. None of my clothes fit. I was already thin and now look really thin, like I am really ill or something. My primary care guy said not its not good for a 63 yr old man to suddenly lose all this weight. He is worried I could have some cancer or abnormality so I am going for an abdominal Cat scan with contrast..The doctor gave me some samples of Ensure which I hate. I think this new low weight is here to stay. I think its just my body adjusting from a life of sitting to a life of standing. I just need to keep it from going lower.
I have been diagnosed with PFCN problems and PN, so I think they both cause the sitting pain. The two pfcn nerve blocks I had didnt take all the sitting pain away so the doctor thinks the pudendal is also involved. I go in two weeks back to Johns Hopkins for a guided pudendal nerve block, after having two blocks to the pfcn....I have had this pain like 17 months now and am still being diagnosed.
All this standing seems to have been wearing me down this last year. I have lost over 30lbs and cant seem to gain it back. None of my clothes fit. I was already thin and now look really thin, like I am really ill or something. My primary care guy said not its not good for a 63 yr old man to suddenly lose all this weight. He is worried I could have some cancer or abnormality so I am going for an abdominal Cat scan with contrast..The doctor gave me some samples of Ensure which I hate. I think this new low weight is here to stay. I think its just my body adjusting from a life of sitting to a life of standing. I just need to keep it from going lower.
Re: Erratic symptoms
Thanks for your response. At least I have others to bounce off of - it's so hard to try to tell people I can't sit - they look at you like they didn't hear you. PN is such a weird problem to have - sitting is such a crucial element to life that when you can't it really impacts your life.
I lost a lot of weight too - but I had gone through a number of surgeries. One of my adult children said I looked like a refugee. After the surgeries subsided I gained the weight back. So you may not have anything serious - sometimes stress does it. And PN causes stress. During stress you lose your apetite. So much of eating is centered around socializing and when you can't sit you can't socialize so my eating was drastically reduced when I stopped doing a lot of things.
The pain seems to hit the worst after I sit - and it lasts a long time. I avoid driving anymore unless I absolutely have to. I rarely go out because of the sitting issues. Until I began babysitting - then the pain spiked through the roof because now I was forced to sit - but the real pain hit at the end of the week.
I don't think i could get used to standing up using a desk or eating - it sounds tiring. I usually half-lay in bed - that's how I have adapted.
I don't use my living room anymore unless someone comes over. I spend my time in my room. I don't like it but it's the most comfortable for me with having this. Like you - I don't worry about things a lot anymore.
I lost a lot of weight too - but I had gone through a number of surgeries. One of my adult children said I looked like a refugee. After the surgeries subsided I gained the weight back. So you may not have anything serious - sometimes stress does it. And PN causes stress. During stress you lose your apetite. So much of eating is centered around socializing and when you can't sit you can't socialize so my eating was drastically reduced when I stopped doing a lot of things.
The pain seems to hit the worst after I sit - and it lasts a long time. I avoid driving anymore unless I absolutely have to. I rarely go out because of the sitting issues. Until I began babysitting - then the pain spiked through the roof because now I was forced to sit - but the real pain hit at the end of the week.
I don't think i could get used to standing up using a desk or eating - it sounds tiring. I usually half-lay in bed - that's how I have adapted.
I don't use my living room anymore unless someone comes over. I spend my time in my room. I don't like it but it's the most comfortable for me with having this. Like you - I don't worry about things a lot anymore.