Hello again all, I posted here before that I'd had 2 nerve blocks - 1 at the start of Jan and 1 at the start of Feb. These were carried out by Dr Baranowski. My symptoms before them were not that bad, but once the effects had worn off, symptoms seemed worse which was a bit depressing. I'd given up all cycling and running but prior to the nerve blocks walking hadn't been an issue, I used to walk up to 6 miles per day.
Dr B had suggested if I wished I could try pulsed radiofrequency neuromodulation and after a couple of flare ups (seemingly at random) I decided to go for it. I'm now kind of regretting that decision because it has made things a whole lot worse again. I had the PRFNM about 5 weeks ago and as soon as I left the hospital and started to walk to the local station in London to get home, I started to feel things flare up. I wasn't that concerned though as I'd been told that I could expect flare ups for a week or 2 following the procedure. We're now 5 weeks in and I'm not back to where I was before the PRFNM although things are better than they were immediately after PRFNM. Immediately afterwards I was experiencing more or less constant flare ups and even walking 7 minutes to my local station seemed to set things off! Things are better than before but my symptoms now seem to be much more tied into walking. I am trying to start walking a few miles per day again but get flare ups more than ever before the nerve blocks etc.
This has all been a bit depressing and I half wish I'd never had anything done and let nature take its course... Not sure how things would've been, perhaps they would've got worse anyway. I was also diagnosed with anxiety disorder which seems to have been brought on by all this which has put a dent in my lifestyle somewhat!
Anyway I'm also seeing a physiotherapist who has given me various pelvic strengthening exercises to do which sometimes seem to flare things up. She's trying to help me get back to some kind of semblence of the highly physical life I used to lead (loads of cyclings, running, gym etc). She has also suggested a very slow build up running programme, it literally started with 1 min run, 1 minute walk, 1 run etc for about 10 mins.... Sometimes this seems to flare things up, sometimes not and in fact sometimes it has actually relieved the pain but I have become incredibly cautious and much more concerned that things are going to get worse....
Has anyone got any thoughts on nerve blocks/PRFNM? Also quite interested in hearing what people think about increasing activity like this or doing strengthening exercises? I remember reading somewhere here that strengthening exercises were bad... Or did I imagine that. She also mentioned trying out kegel/pelvic florr strengthening.
2 Nerve Blocks and Pulsed Radio Frequency Neuromodulation...
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Hi there I think we spoke before when we were in the same position having both had the 2 nerve blocks under dr B. I also had bad flare ups after these and was worse than I was before by quite a lot.
I was also told to have the prf if necessary but to try Physio first. I have done that and have had huge improvement. I am even weaning off meds.
My first thing would be to ask you are you seeing one of the physios recommended by Dr B? I was basically told to see a Physio and I had to go back to Nadene to find out it should be one of 3 in the uk. I had lined up a local Physio but now I have to travel 5 hours to Southampton but it is so worth it. I don't have any knowledge of the anatomy but should you be strengthening the pelvic floor? That to me sounds like it would cause flare ups? I was told not to do any of that. I have lots of other exercises mostly stretches and strengthening of the core muscles. Also I was told to start back exersising by walking quickly for 30 minutes at a time.
Our situation may be totally different! But this was my experience. After my first two nerve blocks at the beginning of the year I was desperate for surgery and rang Bristol twice but didn't get a call back and I'm so glad now.
The physios that were recommended to me were Ruth Jones in Southampton, who I see, someone called Maria on Harley street and a man in Edinburgh who I can't remember but I am sure Nadene could tell you.
Oh and also I had to increase my meds at first but after a few weeks I could decrease them again.
Hope this helps
Chrissy
I was also told to have the prf if necessary but to try Physio first. I have done that and have had huge improvement. I am even weaning off meds.
My first thing would be to ask you are you seeing one of the physios recommended by Dr B? I was basically told to see a Physio and I had to go back to Nadene to find out it should be one of 3 in the uk. I had lined up a local Physio but now I have to travel 5 hours to Southampton but it is so worth it. I don't have any knowledge of the anatomy but should you be strengthening the pelvic floor? That to me sounds like it would cause flare ups? I was told not to do any of that. I have lots of other exercises mostly stretches and strengthening of the core muscles. Also I was told to start back exersising by walking quickly for 30 minutes at a time.
Our situation may be totally different! But this was my experience. After my first two nerve blocks at the beginning of the year I was desperate for surgery and rang Bristol twice but didn't get a call back and I'm so glad now.
The physios that were recommended to me were Ruth Jones in Southampton, who I see, someone called Maria on Harley street and a man in Edinburgh who I can't remember but I am sure Nadene could tell you.
Oh and also I had to increase my meds at first but after a few weeks I could decrease them again.
Hope this helps
Chrissy
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Yes, hi again. The physio I'm seeing is Emma Jane Harding at CHHP on Harley Street, I was referred to her by Dr B. She's a pelvic specialist apparently. She seems good, very attentive and supportive but as you say, I thought pelvic strengthening was a no no yet she still seems keen for me to do it. She says that my pelvis is in general in very good shape, initially she said that my sacro illiac joint was out of alignment but she did some stuff to it and says that it's now in almost perfect alignment. She says there's some stiffness in my left hip but only very slight. Every time I see her she says she has to go "hunting" for problems... Basically there isn't much wrong. She has used acupuncture\dry needling, she has gone hunting for trigger points - she found a couple up near the top of the inside of my thigh and ironed them out, also my psoas muscles were a bit tight and painful.
She's given me various strengthening exercises she says which are supposed to get me back into running, she says she wants to firm up my pelvis to prepare for the impacts of running... I might ask her about the logic of these when everyone else seems to be being guided away from them...
I'm not on any medication for pain although since the PRFNM I have felt like I need to be sometimes. The aching is now present on a daily basis, at least part of the day whereas before the PRFNM it was relatively rare - the majority of the time things were completely normal but I'd get the odd flare for half a day here and there although a couple of times the flares lasted longer - for several days or so which made me decide to go ahead with PRFNM. 6 months ago before the nerve blocks I only had slight aching now and then usually after a particularly intensive session at the gym or a long run... It's this gradual decline which gets me down sometimes and I sometimes think back to before I had anything done and wonder I shouldn't have just let nature take its course!
How does this compare to your situation? Not trying to pry but I'd be very interested to hear how your story stacks up against mine and it's nice to compare to a fellow sufferer, makes me feel less alone!
She's given me various strengthening exercises she says which are supposed to get me back into running, she says she wants to firm up my pelvis to prepare for the impacts of running... I might ask her about the logic of these when everyone else seems to be being guided away from them...
I'm not on any medication for pain although since the PRFNM I have felt like I need to be sometimes. The aching is now present on a daily basis, at least part of the day whereas before the PRFNM it was relatively rare - the majority of the time things were completely normal but I'd get the odd flare for half a day here and there although a couple of times the flares lasted longer - for several days or so which made me decide to go ahead with PRFNM. 6 months ago before the nerve blocks I only had slight aching now and then usually after a particularly intensive session at the gym or a long run... It's this gradual decline which gets me down sometimes and I sometimes think back to before I had anything done and wonder I shouldn't have just let nature take its course!
How does this compare to your situation? Not trying to pry but I'd be very interested to hear how your story stacks up against mine and it's nice to compare to a fellow sufferer, makes me feel less alone!
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Reading through your post again it sounds like you're coming at things from a worse situation than me but that you have improved considerably but I have deteriorated... Perhaps we'll cross over at some point!
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Yes I was probably worse to start with as I couldn't even walk or sit at all at one stage.... Maybe you just need to give it a bit longer for the flare up to die down. Perhaps consider duloxetine for pain and the anxiety until your flare up is under control? If you are in London anyway you wouldn't be far from my Physio in Southampton if you wanted a second opinion.
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Yes you're probably right, it is steadily getting better again... I'm probably in a far better situation than most people with PN issues but when things get worse I get very scared.... It's partly the worry that things could get really bad and partly the fact that my lifestyle which was very physical has been heavily impacted. I used to pride myself in my fitness - my 5k time with the triathlon club, the fact that I was in the fastest riding groups with the cycling club etc but all that disappeared with the onset of PN. Duloxetine has been suggested to me before. I was on propranolol for a while simply to calm the anxiety and it helped but I'm off it now... I try to use CBT techniques to calm myself - the pain psychologist was helpful with that...chrissy wrote:Yes I was probably worse to start with as I couldn't even walk or sit at all at one stage.... Maybe you just need to give it a bit longer for the flare up to die down. Perhaps consider duloxetine for pain and the anxiety until your flare up is under control? If you are in London anyway you wouldn't be far from my Physio in Southampton if you wanted a second opinion.
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Yes you're probably right, it is steadily getting better again... I'm probably in a far better situation than most people with PN issues but when things get worse I get very scared.... It's partly the worry that things could get really bad and partly the fact that my lifestyle which was very physical has been heavily impacted. I used to pride myself in my fitness - my 5k time with the triathlon club, the fact that I was in the fastest riding groups with the cycling club etc but all that disappeared with the onset of PN. Duloxetine has been suggested to me before. I was on propranolol for a while simply to calm the anxiety and it helped but I'm off it now... I try to use CBT techniques to calm myself - the pain psychologist was helpful with that...chrissy wrote:Yes I was probably worse to start with as I couldn't even walk or sit at all at one stage.... Maybe you just need to give it a bit longer for the flare up to die down. Perhaps consider duloxetine for pain and the anxiety until your flare up is under control? If you are in London anyway you wouldn't be far from my Physio in Southampton if you wanted a second opinion.
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
I know how you feel I am not in to sports but a year ago I was size 8 and now I'm a large 12 which is pretty depressing! But my Physio told me to just 'let go' of that and concentrate on slowly improving then worry about getting back to how things were before. Hope you see some improvement soo, I'm sure you will
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Your physio sounds very reassuring.... Hope your improvements continue, I think it's partly mental, once you see yourself improving you get into a better frame of mind and things improve ever more quickly...
Re: 2 Nerve Blocks and Pulsed Radio Frequency Neuromodulatio
Searching, if you have access to another physiotherapist who treats PN, maybe you want to get a 2nd opinion about strengthening exercises. For me, more exercise was the exact opposite of what I needed because exercise was what caused my PN but each person with PN is different.
Violet
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.