Progresively worse - from nerve to muscles. Please help

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

Postby calluna » Sat Dec 14, 2013 6:38 pm

Hello again bunny

I think that we have all experienced increased pain with sitting, it is very characteristic of PN. The answer there is to avoid sitting like the plague, except with a cushion of some sort that makes it possible, or at least easier. You'll find lots of info on the boards about cushions. Have you tried any yet? Lots of people have found it helpful to get one of those very cheap foam kneeling pads from the garden centre and make a U-shaped cutout in the middle, so that the pudendal area doesn't have any pressure on it. I still carry a cushion around with me, and I have one that lives permanently in the car. For me they do make a difference.

I don't think that sitting every day is necessarily going to help you get used to it. The pain when sitting is because of pressure on the nerve, causing it to be irritated. Irritating the nerve is not a good thing to do, it is something to avoid.

With regard to flying, again you'll find lots of advice on the boards. Ice, extra painkillers, and your most helpful cushion, basically. Tell the airline well ahead of time that you have a pain condition and are going to need extra help - don't wait until boarding to let them know. Make sure that they will be informed for the return flight, as well.

I'm sure that others will be along soon with more advice.
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Re: Progresively worse - from nerve to muscles. Please help

Postby Violet M » Sat Dec 14, 2013 9:51 pm

Bunny, I guess I would never say never when it comes to sitting because I do remember one person who posted saying they tried sitting just a little bit each day and slowly worked up to sitting more but that is extremely rare around here and I've not heard that approach being recommended by the PNE docs. It probably depends to some extent on what is causing your pain.

Professor Robert explains why sitting is a problem if you have an entrapment:

http://www.pudendalhope.info/node/45

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

Postby bunny » Sat Dec 14, 2013 11:31 pm

Thanks calluna for advices. I have not been sitting for over 2 months at all after I felt so bad sitting at work I had to go on sick leave. Since then I sat just 2 times for half minute to see how my body reacts and once at neurologist for the examination. I don't tolerate sitting at all and mainly stand at home. Cushions I tried (togu and some u shapes) don't help me. I also tried with garden kneeler foams. They're too hard and I feel like every little pressure gives me super bad worsening.
What can be done for me on the plane? I mean you said that I should inform the airline but when there is sit belt sign everyone had to sit anyway.
It's all too hard for me. I don't know how you all guys are doing this.

Anyone will join us please?
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Re: Progresively worse - from nerve to muscles. Please help

Postby bunny » Sat Dec 14, 2013 11:44 pm

Thanks Violet for that.
I know I have a lot of a muscle problem. I am also a bit hypermobile as some of guys here. My physio believes I have fascia restrictions and it might be my problem along with stressed tight pelvic muscles. Also she noticed I have some less bulk in around my sitting bones which makes my nerves to be 'naked' - not protected enough. But it might be secondary to the pain. I would love that in my case it would be enough to do stretching and physio regime even for longer time just for it to help me. It's probably a wish of many people here. Could this be possible to have first nerve pain and after a few months the muscles even if it was myofascial reason? To remind I developed it at work - long sitting hours and lots of stress.
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Re: Progresively worse - from nerve to muscles. Please help

Postby calluna » Sun Dec 15, 2013 1:28 pm

What do you have by way of additional pain relief? To cope with breakthrough pain, I mean. You will need it. You should take it beforehand so that it is already running at a good effective level when you have to sit.

You've mentioned that you are taking pregabalin 75mg twice a day and also baclofen - which amplifies the effect of the pregabalin - and that you are reducing the baclofen dose on the advice of your neurologist. So you might well be getting an increased level of neuropathic pain as there will be less enhancement of the effect of the pregabalin. Are you coping ok with this? If you are coming up to an event that is going to cause increased pain (like this flight) it perhaps might be sensible to hold off on decreasing your pain meds, unless you are absolutely sure that you can cope at the reduced level. This is something that you should discuss with your GP.

So yes, tell the airline that you'll be in severe pain when you have to sit. And tell them about your icepacks too. Take a couple with you in a little cooler bag, use as needed. Ask the staff to put them in the freezer when they thaw.

And take the strongest meds that you have available to you for breakthrough pain. Have you discussed this with your GP? If not, I suggest that you do. I'm sure he'll want to help you.
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Re: Progresively worse - from nerve to muscles. Please help

Postby Stephanie P » Mon Dec 16, 2013 10:16 am

Bunny, when I am flying on domestic flights, I stand for the duration of the flight, either next to my seat, or in the galley (on long international flights I have been fortunate enough to be able to lie down). This arrangement is facilitated by the doctor's letter that I carry advising that sitting would result in nerve damage. I sit for landing and take off, lessening the pressure on the nerve with two small firm cushions placed under each sit bone. I've travelled standing on domestic flights in NZ, the UK and France without any problems.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
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Re: Progresively worse - from nerve to muscles. Please help

Postby bunny » Tue Dec 17, 2013 12:03 pm

Thanks calunna and Stephanie. I think I will ask for this letter to so I can take it with me. What additional meds would you recommend for the flare ups during and after the flight? Last time my gp gave me cocodamol so I'd rather ask you guys.

Stephanie are you also In the uk? Do you know some good osteopath in London for my piriformis problems? Or some other help I can get here while I wait for an appointment with dr Baranowski. I have this pelvic familiar physio but I am not sure if she can deal with my piriformis as well.
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Re: Progresively worse - from nerve to muscles. Please help

Postby Stephanie P » Thu Dec 19, 2013 10:57 am

No, Bunny, I'm not in the UK. I live in New Zealand where there is little knowledge about PNE, hence the need to travel abroad for advice and treatment. Something to be aware of re sitting is that the nerve may not react immediately, but flare up days, or even a week or more, later.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
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Re: Progresively worse - from nerve to muscles. Please help

Postby bunny » Fri Dec 20, 2013 1:17 pm

Thanks Stephanie

Also because I try physiotherapy I wanted to ask how long should I give before improvement? I have seen her weekly for 3 months now but I don't have any improvement. My problem is also the muscles that became overused yo the point I have buttocks, inner and back thigh pain. Problem with standing. It's most probably piriformis syndrome. I haven't sat got 2.5 months now. And when I sit now for a minute I have muscle and nerve pain. My physio has mostly treated my muscles and done internal work only once with the initial evaluation which flared me up for the next 3 days. Does the time without internal work count anyway? I just realised recently that it's maybe useless to to the physio without it.
How long do people need before getting better with physio? She says I might have dome fascia restrictions if that's relevant. Any thoughts please anyone?
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Re: Progresively worse - from nerve to muscles. Please help

Postby Stephanie P » Sat Dec 21, 2013 10:46 am

If I were in your position, Bunny, I'd give the PT a miss until your symptoms have been evaluated by a PN specialist.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
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Joined: Mon Oct 11, 2010 10:06 am

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