new to this site, have pn
new to this site, have pn
my name is julie im from the west ireland, 12 yrs ago i suffered alot of pain in my pelvis in all three pregnacys i suffered a great deal, in pain and no one listened, it felt impossible the pain of life was so hard to bear, in time i managed to walk again, and get on with bringing my three daughters up aged 13 12 and 10 . im 45yrs of age and out of the blue this illness has took over my life again, i have been to hospital over the last 11 mths to be told nothin broken and has only just had my first p therapy with the hospital which gave me a lesson on pain and a book on to read about it, then next weak to talk again about pain.. im one of the lucky ones i have been seeing a private pthearpyis which straight away diagnoise me this last weak. i am wheelchair user i can not even take two steps, pain all left side hip, croin anal and so on. so i start my journey , i have been so thankful for this site, it has helped to find out things, i have been told that i will have to go to france for diagnoise and england to have my pubic bone wired together.. all info would be a help,, as we all no we have to get up and fight your own corner or you don,t get no where sad but true thank you julie........
Re: new to this site, have pn
Hello Julie, welcome to the forum!
I am so sorry to hear of your pain, and your difficulties getting a diagnosis. You have come to the right place for advice and information about PN. This is a very supportive and helpful community, and there is a whole stack of really useful information in the main part of the website. (Top of every page, red writing saying Goto home page)
I think that you are the first person we've had on here who is wheelchair-bound, one thing that makes PN very much worse is sitting, unfortunately. Do you have a good cushion that makes sitting more comfortable for you? I have the Togu Air Active cushion (from Amazon) and I don't sit without it, they do a wheelchair version as well.
Please make sure that your physio is PN aware - anyone who tries to get you to do exercises to strengthen your pelvic floor muscles (Kegels exercises) is most definitely not - Kegels make PN worse.
By the way, what medication do they have you on at the moment, for your pain?
And what was the book that they gave you at the hospital? I am interested because there is a book that I recommend a lot, it has helped me so much - it was recommended to me by a psychologist who I was seeing for pain management. I had it first of all from the library and then I bought my own copy as I was referring to it so much. It is called Coping Successfully with Pain, by Neville Shone. I think you would find it both useful and interesting, I know it has helped others on here as well as me.
Please keep posting, I am sure that other people will be along soon!
I am so sorry to hear of your pain, and your difficulties getting a diagnosis. You have come to the right place for advice and information about PN. This is a very supportive and helpful community, and there is a whole stack of really useful information in the main part of the website. (Top of every page, red writing saying Goto home page)
I think that you are the first person we've had on here who is wheelchair-bound, one thing that makes PN very much worse is sitting, unfortunately. Do you have a good cushion that makes sitting more comfortable for you? I have the Togu Air Active cushion (from Amazon) and I don't sit without it, they do a wheelchair version as well.
Please make sure that your physio is PN aware - anyone who tries to get you to do exercises to strengthen your pelvic floor muscles (Kegels exercises) is most definitely not - Kegels make PN worse.
By the way, what medication do they have you on at the moment, for your pain?
And what was the book that they gave you at the hospital? I am interested because there is a book that I recommend a lot, it has helped me so much - it was recommended to me by a psychologist who I was seeing for pain management. I had it first of all from the library and then I bought my own copy as I was referring to it so much. It is called Coping Successfully with Pain, by Neville Shone. I think you would find it both useful and interesting, I know it has helped others on here as well as me.
Please keep posting, I am sure that other people will be along soon!
Re: new to this site, have pn
Hi Julie,
Welcome to the forum. It must be very difficult to have this illness when you are wheelchair bound. Who was the PT who diagnosed you? I know there's a PT familiar with PNE in Dublin but hadn't heard of any in West Ireland. Anyway, it's good to know there are more out there who are becoming aware of this illness and I'm glad you were able to find someone who was able to diagnose you.
I hope all goes well for you as you have the pubic bone procedure done. So do you have some lax ligaments that are allowing a separation there? I've heard of pubic symphasis diastasis during pregnancy. Is that what you had and did it come back?
Violet
Welcome to the forum. It must be very difficult to have this illness when you are wheelchair bound. Who was the PT who diagnosed you? I know there's a PT familiar with PNE in Dublin but hadn't heard of any in West Ireland. Anyway, it's good to know there are more out there who are becoming aware of this illness and I'm glad you were able to find someone who was able to diagnose you.
I hope all goes well for you as you have the pubic bone procedure done. So do you have some lax ligaments that are allowing a separation there? I've heard of pubic symphasis diastasis during pregnancy. Is that what you had and did it come back?
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.
Re: new to this site, have pn
first of all, thankyou for replying to me it brought tears to my eyes. the pain started 12yrs ago, in so much pain, alone and no one listened, from being told i was to fat thats why i was having lower back pain, and also being told to abort my child and loads more horrible storys, i got no diagn and was left to get on with it i struggled with my three children, determined not to let it affect my life. with what the dr said to me ringing in my ears don,t you think your being selfish to bring a child in to this world when you can not look after them which haunts me, and now out of the blue the pain hit me like a shock in my left groin, the next day i went for a walk my hips hurt my lower back hurt my legs went like lead waits i was in so much pain for three half months i could of chewed a iron bar, a,e said i had constpation ha ha sent me home, its only by chance my dr sent me to see a p t who was doing a course with america and england on pn,, sylvia nagle god send she listened to me , gave me comfort took it slowly and dealt with the main parts that were hurting massage and acupuncture, she then diagn me and has wrote to ever dr so that i don,t have to face them alone...........and out of blue in 11 mths i get appointment with hospital p th.. he gave me explain pain by david s butler and g lorimer moseley the meds im on are innohep injections each day which husband gives me lyrica 75 mg lyrica 25 mg when pain is to much extra dulax lactulose molaxole omeprazole it is hard to be in wheel chair cut out cushions lie down a lot find im only comfy lying in a bath of hot water theres no pain........... thank you for taking your time to read this ....just hopefully the dr s now listen to the p th,, and help me...... yes the p th thinks my syth bone has come away or worn out i have to wait now and hopeful find out more answers off dr s ?????
Re: new to this site, have pn
Hello again Julie, thankyou for coming back, I have been wondering how you were doing.
You've really had such a difficult time - as you say, thank goodness for someone who actually helped. Sylvia Nagle, the physio - yes? I don't know of her, but she sounds wonderful. I do hope that you won't have so many problems with the doctors now that you have her in your corner. Now you've got a diagnosis, now we move forward and start getting you a better quality of life.
You are doing absolutely the right thing lying down a lot. Stand or lie down - avoid sitting as much as you possibly can. For most of us this has become automatic. Sitting makes the pain worse, with PN. But don't forget that you do still need some exercise - I expect that Sylvia will have given you some things to do, though.
That book sounds excellent. If you could get the opportunity to read the one I recommended as well - maybe see if you can get it from the library? - I am sure you'd find it helpful.
Just looking through your list of meds - innohep is to stop blood clots; you've got some stuff to stop gastric reflux; also you have a selection of stuff to help with constipation; and finally for pain you have lyrica.
Really good that you're managing the constipation - this is something that can make PN worse, all of us have to take care not to become constipated.
Now, about managing the pain. Wondering how often you are taking the lyrica 75mg? Usually they give lyrica twice a day, so you'd be on 150mg a day. Plus your extra 25mg that you can take if you need it, so 175mg. That's not a high dose. Lyrica can go up to 300mg if needed. If the dose you are on is not deaing with your pain then it would be sensible to give your doctor some feedback about this, maybe it will be possible for you to increase the dose. Lots of us get good pain relief with this drug.
Something else occurs to me - many people with nerve pain get their best pain relief with a combination of an antidepressant and an anticonvulsant. You are already on the anticonvulsant - that's the Lyrica - but it might be an idea to think about adding in something like amitriptyline or nortriptyline, if that's possible. These drugs can be very effective. The dose for pain relief is small, nowhere near the dose for depression. Just a thought, anyway, maybe you could discuss it with your doctor when you see him to tell him that the Lyrica isn't doing it for you at the moment.
And a suggestion - if you get your best pain relief lying in a warm bath - how about swimming? Floating in a warm swimming pool might be good.
You've really had such a difficult time - as you say, thank goodness for someone who actually helped. Sylvia Nagle, the physio - yes? I don't know of her, but she sounds wonderful. I do hope that you won't have so many problems with the doctors now that you have her in your corner. Now you've got a diagnosis, now we move forward and start getting you a better quality of life.
You are doing absolutely the right thing lying down a lot. Stand or lie down - avoid sitting as much as you possibly can. For most of us this has become automatic. Sitting makes the pain worse, with PN. But don't forget that you do still need some exercise - I expect that Sylvia will have given you some things to do, though.
That book sounds excellent. If you could get the opportunity to read the one I recommended as well - maybe see if you can get it from the library? - I am sure you'd find it helpful.
Just looking through your list of meds - innohep is to stop blood clots; you've got some stuff to stop gastric reflux; also you have a selection of stuff to help with constipation; and finally for pain you have lyrica.
Really good that you're managing the constipation - this is something that can make PN worse, all of us have to take care not to become constipated.
Now, about managing the pain. Wondering how often you are taking the lyrica 75mg? Usually they give lyrica twice a day, so you'd be on 150mg a day. Plus your extra 25mg that you can take if you need it, so 175mg. That's not a high dose. Lyrica can go up to 300mg if needed. If the dose you are on is not deaing with your pain then it would be sensible to give your doctor some feedback about this, maybe it will be possible for you to increase the dose. Lots of us get good pain relief with this drug.
Something else occurs to me - many people with nerve pain get their best pain relief with a combination of an antidepressant and an anticonvulsant. You are already on the anticonvulsant - that's the Lyrica - but it might be an idea to think about adding in something like amitriptyline or nortriptyline, if that's possible. These drugs can be very effective. The dose for pain relief is small, nowhere near the dose for depression. Just a thought, anyway, maybe you could discuss it with your doctor when you see him to tell him that the Lyrica isn't doing it for you at the moment.
And a suggestion - if you get your best pain relief lying in a warm bath - how about swimming? Floating in a warm swimming pool might be good.
Re: new to this site, have pn
thankyou for your reply callun im on 3x75mg which i find i can cope, ive tried all types of mg.. this suits me.....if pain is to much to bear like periods i take xtra 25mg i also was given mirtazapine 15mg but i read about side affects decided not to take them,,, was taking diazepam 5mg they were great but only use for emergence now.... the main part of this disorder is to stay relaxed,,,, i was wondering ,, ive read some of the posts would it be a good idea if every one emailed the persons dr or when some one is trying to claim for disability just to let them no there are more off us and it is not in are heads. i get sick off the hospital treating me like im crazy, because off there blindness...