Hi Nicola,
Sorry that you are having these difficulties. Hang in there--things do change...
I know you can't surf for now, but have you tried swimming? Crawl and backstroke (not breast stroke, which is not a good idea) have been very helpful for me. I've been swimming for 20 minutes almost every day for the last year, and it's really been great for my body (and mood!). Because there's almost no weight on the pelvis, it's a very workable form of exercise and I believe it's helped ameliorate the pain.
--Christi (Australian, but haven't lived there in a long time...)
My story from the bottom of the earth, literally
Re: My story from the bottom of the earth, literally
thanks for the idea christi, I had been thinking about that, I have to drive 15 mins to our Hot salt water pool, and 25 mins to get to the physio pool.
Only driving once a week.
But really, the outdoor hot salt water pool will be great for me, I will give it a try.
Stunning location, I can watch the surfers too.
was also thinking, if all those years of sitting out the back on my surf board, I know cyclists are more likely to get PNE, but look at how we surfers (pics arent me tho, but wish I looked like that!)sit on our hard boards, sometimes for hours a day.
might have exaccerbated my issue??
I haven't surfed since new years day this year, but before that the previous year I only got out 4 times, each time I was pretty much in bed for 3-4 days. Not from fatigue but pain.
Only driving once a week.
But really, the outdoor hot salt water pool will be great for me, I will give it a try.
Stunning location, I can watch the surfers too.
was also thinking, if all those years of sitting out the back on my surf board, I know cyclists are more likely to get PNE, but look at how we surfers (pics arent me tho, but wish I looked like that!)sit on our hard boards, sometimes for hours a day.
might have exaccerbated my issue??
I haven't surfed since new years day this year, but before that the previous year I only got out 4 times, each time I was pretty much in bed for 3-4 days. Not from fatigue but pain.
Chronic Pain pudendal area for 3 years, after a hard jolt to right side.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
18 months later discovered sprained/fused sacro-illiac injury. Told to 'live with it' then saw this forum October 2011 = symptoms matched. Attempting to get this investigated in the face of lack of skilled docs in New Zealand.
Been told I have IC Dec 2011
FINALLY - 3T MRI in Christchurch 5th May 2012 - Pudendal nerve block, unguided 8th June 2012 - still waiting on results and progress from these.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: My story from the bottom of the earth, literally
Well sitting is the big no! It won't have done the overall pain symptoms any favours, that's for sure. You do take the most beautiful pictures, I assume the bay pic is one of yours too? WOW! Wonderful place!!
I haven't visited NZ but have been badgered by my relatives for so many years, they are so proud of the beauty of the place and all outdoor, active people. My uncle lives in Whangarie , have a cuz in Auckland another Christchurch. I have determined to go once I get myself fixed.
I was clutching at straws with that link but at least you could print it out and take it into whichever doctor you are seeing, especially if he has a blank look on his/her face regarding pn.
I am going to take up swimming again too, GOT to do something! ! My local pool is right next to a lake with ducks and swans almost swimming along side. I won't put a pic up tho' no match on yours for location or photographic ability
If the Clonidine isn't having much effect there is gabapentin or pregabalin to try they can be teamed with an antidepressant like cymbalta or citalopram, but if the tramadol works (I find tramadol works well for 'fixed', not nerve pain) it can be taken too. here is a link a pregabalin
http://www.pudendalhope.org/forum/viewt ... 8&start=10 It has the UK prescription 'pathway' for drugs for nerve pain. It might help.
Good luck.
I haven't visited NZ but have been badgered by my relatives for so many years, they are so proud of the beauty of the place and all outdoor, active people. My uncle lives in Whangarie , have a cuz in Auckland another Christchurch. I have determined to go once I get myself fixed.
I was clutching at straws with that link but at least you could print it out and take it into whichever doctor you are seeing, especially if he has a blank look on his/her face regarding pn.
I am going to take up swimming again too, GOT to do something! ! My local pool is right next to a lake with ducks and swans almost swimming along side. I won't put a pic up tho' no match on yours for location or photographic ability
If the Clonidine isn't having much effect there is gabapentin or pregabalin to try they can be teamed with an antidepressant like cymbalta or citalopram, but if the tramadol works (I find tramadol works well for 'fixed', not nerve pain) it can be taken too. here is a link a pregabalin
http://www.pudendalhope.org/forum/viewt ... 8&start=10 It has the UK prescription 'pathway' for drugs for nerve pain. It might help.
Good luck.
Last edited by helenlegs 11 on Mon Sep 12, 2011 1:54 am, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: My story from the bottom of the earth, literally
OMG, that pool looks BEAUTIFUL!! I would love to have it in MY neighbourhood. You are very lucky to have it; go for it!
I too swim everyday and it has been a real blessing. I think that my daily swims have made a difference between being merely in pain vs. being in pain AND DISABLED. Since I can't walk far or run at all or go to the gym, my swims keep my body mobile and my muscles working. They are also the best part of the day, even though I swim indoors at the local YMCA! What I would give to have a pool like yours!
I too swim everyday and it has been a real blessing. I think that my daily swims have made a difference between being merely in pain vs. being in pain AND DISABLED. Since I can't walk far or run at all or go to the gym, my swims keep my body mobile and my muscles working. They are also the best part of the day, even though I swim indoors at the local YMCA! What I would give to have a pool like yours!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com