Progresively worse - from nerve to muscles. Please help

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Re: Progresively worse - from nerve to muscles. Please help

Postby lightmail » Sun Dec 22, 2013 7:40 am

Calluna..Can you direct to a post where someone has said they were cured by nerve blocks. I'm considering them but have not seen any real benefits from them. I see where they have done more harm then anything or are useful for the diagnosing part. Thank you..Robert
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Re: Progresively worse - from nerve to muscles. Please help

Postby bunny » Sun Dec 22, 2013 5:40 pm

Yes. I am also curious about it. Also I have noticed some kind of tendency when people who were "blocked" by dr baranowski didn't see any results but when after they went under dr greensdale they had some good resopose from the nerve blocks.

Also anyone can advice me on the question I asked; is physiotherapy not worth anything without internal work? I mean when I have pudendal (burning pain when/ after sitting and musculoskeletal problems (piriformis syndrome).
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Re: Progresively worse - from nerve to muscles. Please help

Postby mary jane » Sun Dec 22, 2013 9:02 pm

@bunny the username who got cured is jo1. I quote from this forum:

"I received a pm today and it made me realise that I never came back to update you all! I'm so sorry, especially as the support you gave me was so appreciated!
In short, pudendal nerve damage diagnosed, was put on 6 month course of lyrica which turned me into a madwoman! Came off them, my original gynaecologist referred me to a pain specialist dr kothari at spire Alexandra and I am now 90% cured! She pinpointed and injected the damaged part of the nerve on 4 occasions over 18 months - an absolute revelation!! She understood the pain and didn't make me feel like it was all in my head.
Dr kothari is amazing and changed my life!! Sounds dramatic but the relief was immense. I also had womb ablation as I found the monthly fluctuations increased my pain so now I'm good!
Thanks for your support and thoughts and best wishes to those of you going through this."

her specialist as she told me in her PM was Sandesha Kothari in the uk....

@bunny PT is usually more helpful with internal work..
I wish I could go but because of my painful bartholin gland and swelling issues I'd rather not have anything go inside.
I go to some support group meetings and last month we had two ladies cured of vulvodynia with PT. so it does work. vulvodynia is a bit like pudendal neuralgia, more like peripheral pudendal neuralgia...for some
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
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Re: Progresively worse - from nerve to muscles. Please help

Postby bunny » Tue Dec 24, 2013 12:34 am

Thanks for your reply Mary Jane. I guess it is always down to a person's case. Everyone is different so we gave to try different things. In the new year I might try internal work and we will see.
I also see how much worse I feel when it's so cold and nasty weather as now. My muscles get all stiff and hard too cooperate.

Take care
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Re: Progresively worse - from nerve to muscles. Please help

Postby Violet M » Tue Dec 24, 2013 2:22 am

bunny wrote:
Also anyone can advice me on the question I asked; is physiotherapy not worth anything without internal work? I mean when I have pudendal (burning pain when/ after sitting and musculoskeletal problems (piriformis syndrome).


I could not tolerate internal work before surgery -- caused a week long severe flare-up. If your problems are related to SIJD dysfunction and pelvic misalignment you might benefit from manual therapy that is targeted toward realigning the pelvis and does not include internal work. It really depends on what is causing your PN symptoms and as you say, each case is different. There might be some trial and error in figuring out what works for you.

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.
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