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
Pain Variance?
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JackieOUCH
- Posts: 58
- Joined: Thu Oct 28, 2010 7:06 pm
Pain Variance?
Started with severe burning sacral pain to R hip/pelvis, bladder, bowel
History Endometriosis
Antolak Diagnosed PN--1 PN block made pain much worse & more widespread for a year
PT 2 yrs--Did not help physically, but was educational
Potter MRI: Symmetric thickening Sacrotuberous ligaments/scarring ischial & Alcocks canal.
History Endometriosis
Antolak Diagnosed PN--1 PN block made pain much worse & more widespread for a year
PT 2 yrs--Did not help physically, but was educational
Potter MRI: Symmetric thickening Sacrotuberous ligaments/scarring ischial & Alcocks canal.
Re: Pain Variance?
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
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Pain Variance?
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
Violet
Last edited by Violet M on Sun Jul 14, 2013 10:09 pm, edited 1 time in total.
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.
Re: Pain Variance?
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.
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.
Re: Pain Variance?
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
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
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
Re: Pain Variance?
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
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
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
Re: Pain Variance?
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.
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.
Re: Pain Variance?
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.