Health Organization for Pudendal Education

hello to all
As I have little, or indeed no help from my G.P. which may result from him having no knowledge of P.N. or he is not taking me seriously I have turned once more to the experts.
There will be a question undoubtedly as to why I think I'm not taken seriously, the answer would be I just have a very strong feeling.
I don't turn up at docs surgery for every twinge, it is only when I feel fear buid up and when the problem consumes most of my waking hours.
It appears I am not a straight forward case with straight forwarded text book symptoms. Another problem I have is trying to help myself...the little energy I have is absorbed into trying to find answers....when I am in a mangeable mode (which is not often lately) I can put energy into household tasks and I feel better about myself. I expect this to be the same for most of us "victims".
A new symptom has arisen...well it's new but the area isn't and I wondered if any of these thoughts I am brainstorming the whiteboard with come close to the reason/s. The problem started some 12/16 week ago where my legs were painful, whether I was sitting laying or standing, there are good reasons why I didn't leave it much longer to consult the g.p.He prescribed quinne tablets, but mentioned not to take them any longer than I had to...der....
Then over the last 6/7 weeks and including my pre assessnment visit for a totally different complaint, I found that being the last into bed (just going over last few secruity things and golfish and two dogs tucked up nicely in bed) I would fall asleep standing. the most frightening thing every to happen to me, knowing you were about to fall and helpless in stopping it. I would hear and feel things crunch and then not able to get up from the cold quarry stone tiles.
When this happenned four nights without change I told the gp..he then got nasty and blamed me for taking all the medication he prescribed me.
When he told me the cut backs he was going to use I just froze, absolutly no way can I manage a cut in fentanly, and I know the probs with diazapm but I'll go through that when I no longer need them to keep me sane.
So on top of these new concerns come the new symptom, none of the meds have been chaged yet, so that's not a posibility,
MY legs have turned from pained to solid mini tree trunks there is no plausability and pressing does hurt...there is a feeling that something is trying to get through and that moments attemp gives a quick shooy electric pain that also can renfer me to the floor.
They are twice the size and cannot fit foot into any shoe, The skin feels it cannot stretch any more that is a bit frightening....The doc in his wisdom says there must be a water retention, this is difficult to understand as sheets,pillows and nightwear is changed each night as they are drenched, no water retention there.
From this comes the ongoing famous saying ..."keep an eye on things and come back next week.
So the reason for my fears are that four members of my family over forty years have died as a result of exact symptoms I have presented here.
I have a few ideas to throw at the white board...the first must be is this heredatry? a result of falling, new drugs namely Lyryca, or blockages? I don't the answer neither does the doc but have any of you had this experience relating to PN ? what now? I do seem to have been dismissed again, so any though would be appreciated ..so many thanks
Oh Helen thank goodness there is is you and calluna, has any one a logical answer that I'm not worring my brain to a frizzle. Thank you for your patcience and understanding little mo
xxx

Hello again little mo - goodness what a nasty situation.

The shooting pains - yup, I get them, so do lots of us. Like an electric shock all the way to the ankle - I get them down (feels like down, anyway) down the inside of the leg. It is the nerve playing its tricks again.

Cramp - your GP prescribed quinine tablets for this, yes? Cramp is something that I get episodes of, from time to time, usually when I have not been drinking enough water during the day. After I've had cramp the night before, I make sure to get enough fluid intake the next day - and also an old remedy that I use is to drink a glass or two of tonic water in the evening, the sort that actually has quinine for flavouring, it does seem to help. I wouldn't suggest this as well as the quinine tablets, though! I do hope that this settles down soon for you.

I don't know whether the puffy feet and legs are related to PN or not - but I do know that I've had problems with this exact thing whilst I was taking amitriptyline or nortriptyline. It is a known side effect. Are you taking either of these? - I have lost track.

Anyway, I do know what it is, and how to deal with it. It is fluid retention - your GP is quite right. That is why there is all the swelling, that is fluid in the tissues. Nothing to do with perspiring at night, though, that is a different mechanism. However if you are losing a lot of fluid through perspiration it will not help your fluid balance.

There are some self help things which can really make a difference here. First, you need to make sure that you are drinking a sensible amount of water during the day, if you are not drinking enough water then your body will shift the fluid balance so that you will tend to retain fluid, and that doesn't help the situation. So that means 1.5 litres or thereabouts. Some people say 2 litres, but I can never get all that down unless it is really hot weather. Whatever feels right for you, don't overdo it, obviously.

Next - this is really important! - put your feet up! That means that your feet need to be at or preferably above the level of your hips. Rest with your feet up like this, for as long as you can conveniently manage, during the day. It makes a surprising difference, try it and see.

It is also helpful to do some lower leg exercises, best time is whilst you are resting with your feet up. Move your feet up and down as though you were pressing on a car pedal, and also do some ankle circling - move each foot round in a circle clockwise, and then anti-clockwise.

See if you can manage rest with your feet up, for at least 30 minutes and preferably longer - and run through the ankle exercises - at least twice a day. If the leg swelling doesn't improve, go back to your GP. But these measures should make a real difference.


Reading about you finding that you are falling asleep on your feet - presumably after you've taken your meds - oh dear, not a good situation. Maybe you need to think about changing your routine. Could you go to bed earlier, so that you are not the last into bed? A bit more TLC for yourself, I think. It is all about pacing, and that means not overdoing it at any point of the day.

Did you get a chance to ask for a psychologist referral? It helped me so much, I know I have said it before, but I would wish the same for you.

Bless you Calluna,
If nowt else I have a little less worry about the reasons, a little less worry for you also in as much as I can't keep up so it probably wasn't meant to but it did put a little smile on my face....
This gives me an opportunity here to apologise to Helen in case the words I wrote were read the wrong way... it is so difficult (AT TIMES) without a face to read emotions from to say somethings that when one reads back to themselves think oh good grief that sounds terrible, or oh gosh I hope that doesn't sound offensive.
this will help me get something off my chest (as the saying goes)...I was so shocked at reading that someone namely Helen who has need for certain pain control has been denied it by a tribunal, having to fight for what you need without being in pain is awful enough, I know, I faced a tribunal many years ago for an entirly different reason...for seven nights before facing mine I was unable to sleep and couldm't eat, when I arrived there I was a total wreck ...this was twenty years ago, I lost my case, I nearly lost my mind ...my health was top form. So, I cannot imagine how it would have been had my health been different, so ( cor this is so difficult to explain) I'll start backwards...I wanted to know if Helen would have mentioned the tribuanal had I not started that post...that sounds so bad even now, perhaps it's just me ..I seem to be more sensitive to everything lately, I want to hug everyone in pain as I know the importance of that, and worry the written word doesn't go across as planned.
Anyway the bottom line is I would never knowingly hurt anyone with words and that can so easily happen. Helen you are a star and when I grow up I want to be just like you, brave, caring, truthful, thoughtful, loveing, giving, sharing. Have I missed anything out? and thank you Calluna, p.s. Helen and I will be at your house on Monday morning with our pillows and blankets....we are missing a joking smilie as well.....love from little mo

You haven't hurt or offended anyone, little mo, rest assured. And Helen's tribunal was last week.

And if you do turn up on Monday morning with pillows and blankets, it will be a very short stay as I have my surgery on Tuesday morning!

(And I hope you've had your feet up! )

Good luck again, Calluna! Come back to the forum soon as we will miss your calm helpful knowledgeable advice very much!

Thankyou Lernica!

Will be thinking of you and sending positive vibes for you tomorrow. Just as you woke up from the surgery last time knowing something wasn't right, this time I'm sure you will wake up and think 'WOW it's gone!'
All the luck possible Calluna. xxxxx

Calluna, I'm anxious to hear how things go for you. Wishing you all the best.

Violet