I am new to the forum and I hope I am telling my story in the right area.
I was diagnosed with coccydynia in 2000, had tailbone removed in 2002. This surgery made my pain worse and I cannot sit in any capacity. My pain is sharp stabbing pain that comes on within minutes and lasts approx 30minutes. I have tried more cushions than I can count. I had to stop wring. I was a manager of a rehab company so I sat all day. In 2008 I was diagnosed with pne and told to learn to live with it. I had a pudendal nerve block to help confirm diagnosis . I have ask tried many treatments and met with many doctors in the past 11 years. My life has been a nightmare for the past 11 years. Not only can I no sit, I can only stand for 20-30 minutes and walk around my home . I can not drive go to restaurants, theatre etc.
I just purchased an iPad so I could find support. I feel very isolated. In order to use my iPad I lay sideways on the couch with a small table I front with a stand for my iPad. I type with one finger because I am leaning on my right arm .
Does anyone have similar problems and would like to talk.
Gail Daoust Canada
New to forum
Re: New to forum
Oh dear, dear, dear...wish I could give you a big hug. Are you on meds to help control your pain? I am in the midst of this process, taking Ultracet and Neurontin, still can't sit for more than a few minutes (and have to make a 3.5 hr drive Wednesday to pain specialist). We are all here to support you...it helps to know that we can totally understand what you are going through.
cari
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: New to forum
Hi Cari,
Thanks for the quick reply . Your response made me cry, I finally have someone who understands . I am sorry you are going through the same challenges. I take amitrypline and mobicox for pain and inflammation. As long as I don't sit or stand to long the pain is managa the pain. My biggest problem right now is isolation. I have a loving husband and many friends but know obe can fully understand, until your reply . I miss my life........
I have to lay in the backseat of the car when I go to doctors appointments. How are you going to get to your appt?
Gail
Thanks for the quick reply . Your response made me cry, I finally have someone who understands . I am sorry you are going through the same challenges. I take amitrypline and mobicox for pain and inflammation. As long as I don't sit or stand to long the pain is managa the pain. My biggest problem right now is isolation. I have a loving husband and many friends but know obe can fully understand, until your reply . I miss my life........
I have to lay in the backseat of the car when I go to doctors appointments. How are you going to get to your appt?
Gail
Re: New to forum
Hi Gail.
I truly, truly understand what you are going through in every sence. I too feel isolated... this is one of those unfortunate situations in life in which unless you're experiencing whatever it is, friends, family, co-workers cannot possibly understand/relate. As for physicians - well... thats a whole other story; been down that road all too many times; I've been written off, blown off, yelled at - the list is endless. Regarding the latter (physicians) I always say to myself, "next!" I will say however, that the feelings of isolation have lifted quite a bit when I finally got out of "lurking" mode, read more, and then just recently started posting. Hang in there - you are not alone!
TT
I truly, truly understand what you are going through in every sence. I too feel isolated... this is one of those unfortunate situations in life in which unless you're experiencing whatever it is, friends, family, co-workers cannot possibly understand/relate. As for physicians - well... thats a whole other story; been down that road all too many times; I've been written off, blown off, yelled at - the list is endless. Regarding the latter (physicians) I always say to myself, "next!" I will say however, that the feelings of isolation have lifted quite a bit when I finally got out of "lurking" mode, read more, and then just recently started posting. Hang in there - you are not alone!
TT
Coccyx fx.'86?, kicked same spot yrs.earlier.Endo,adhesions;laparoscopy,lysis adhesions,presacral neurectomy '99-felt great for 3 months.Tarlov cyst;neurologist said go home.PT;no help.Several more laps; clean.Pain meds,muscle relaxer,xanax-helpful.Pain & countless symptoms escalating.Current:I don't have a life,can't "hang on" any longer.I know I'm asking 2 much,but searching 4 informed physician/s who take me seriously,know what they're dealing with,and hopeful subsequent relief.
Re: New to forum
Hi TT,
Thanks for your words of encouragement. It really helps to know I can talk to someone who truly understands. As for doctors, I have also experienced rudeness, it is what it is comments etc....
Gail
Thanks for your words of encouragement. It really helps to know I can talk to someone who truly understands. As for doctors, I have also experienced rudeness, it is what it is comments etc....
Gail
Re: New to forum
Hello Gail
You've come to the right place. I am so sorry to hear what an awful time you've had. You are not alone, really you are not. There are lots of us here, we are all over the world, and we know how PN feels.
I am wondering, surely it must be possible for the doctors to do something more for your pain, to improve your quality of life? Have you had the opportunity to try pregabalin (Lyrica)...? For me it is a magic pill. Side effects, yes, but it deals with the pain like nothing else. Until the Lyrica, I was on tramadol slow release, this did not make the pain go away but it did take it down a notch.
By the way, do you like the iPad? My son keeps telling me that I should get one, I have a slow clunky old laptop and am reluctant to change.
Please keep posting, we are all here for you.
You've come to the right place. I am so sorry to hear what an awful time you've had. You are not alone, really you are not. There are lots of us here, we are all over the world, and we know how PN feels.
I am wondering, surely it must be possible for the doctors to do something more for your pain, to improve your quality of life? Have you had the opportunity to try pregabalin (Lyrica)...? For me it is a magic pill. Side effects, yes, but it deals with the pain like nothing else. Until the Lyrica, I was on tramadol slow release, this did not make the pain go away but it did take it down a notch.
By the way, do you like the iPad? My son keeps telling me that I should get one, I have a slow clunky old laptop and am reluctant to change.
Please keep posting, we are all here for you.
Re: New to forum
Hi Calluna,
I have been using amitriptyline and mobicox for pain and inflammation . The pain is quite manageable as long as I don't sit. If I sit I get knife stabbing pain which comes on in minutes and last 20-30minutes. I tried lyric a few years ago and the pain improved so I tried to do a little more and the pain came on severe . My doctor told me that the medication was probably masking the pain, and in reality every time I tried to sit I was making my condition worse. It is so frustrating being confined to the house 95% of the time.
My husband bought me an iPad two weeks ago, and I love it. It's a bit of a learning curve due to the touch screen, but easy to get use to. I lay sidewYs on the couch with a small table and the iPad is on a stand. I can only type with my left hand because I am leaning on my right arm.
The iPad opened up my world, so I don't have to watch tv all day. Go for it and treat yourself to the iPad.
Gail
I have been using amitriptyline and mobicox for pain and inflammation . The pain is quite manageable as long as I don't sit. If I sit I get knife stabbing pain which comes on in minutes and last 20-30minutes. I tried lyric a few years ago and the pain improved so I tried to do a little more and the pain came on severe . My doctor told me that the medication was probably masking the pain, and in reality every time I tried to sit I was making my condition worse. It is so frustrating being confined to the house 95% of the time.
My husband bought me an iPad two weeks ago, and I love it. It's a bit of a learning curve due to the touch screen, but easy to get use to. I lay sidewYs on the couch with a small table and the iPad is on a stand. I can only type with my left hand because I am leaning on my right arm.
The iPad opened up my world, so I don't have to watch tv all day. Go for it and treat yourself to the iPad.
Gail
Re: New to forum
Hello to everyone my name is Silvester and i am new here in forum i want to take part in discussions and looking forward to share ideas and views with others thanks i am happy to locate this post keep up the good work thanks .
Re: New to forum
Hello again Gail
Well, I'll have to see about the Ipad. They are such a pretty thing, and so incredibly clever, I can hardly believe the things that are possible nowadays. I particularly like the application where you can see the constellations all identified for you, I'd love to be able to know the names of the stars like that. My son showed me this, I thought it was wonderful. I am so glad that yours has made such a difference - a window on the world, maybe.
I think your doctor is absolutely right about the medication masking the pain. That is just exactly what happens. Taking pain meds deals with the pain, not what's causing it. You do have to be really careful to still keep your lifestyle changes in place, you don't want to make the underlying condition get any worse. Pacing is absolutely vital, planned rests are vital too, and take great care to increase your activity slowly otherwise you are likely to get a flare.
But one thing to remember is that a flare is just that - a blip - and it won't last, you won't get stuck like that. Although it is horrible whilst it lasts, it does subside.
Are you still taking the lyrica? - it is important to get this pain out of the way, and get yourself as pain-free as possible. Otherwise the pain gate can get 'stuck open' and then you really have a problem. Amitriptyline is good stuff too, and it works with the lyrica. Maybe you could give the lyrica another shot? I read somewhere that many people get their best pain relief from neuropathic pain with the combination of an antidepressant (like amitrityline) and an anticonvulsant (like lyrica) - I think it was on this website somewhere but I can't find the page.
Maybe if the doctor could find a better balance with your meds, you could get out of the house for some little walks. I think I'd go nuts if I couldn't leave the house! Or maybe I should say, even more nuts.
Another thought - have you seen any of the PN specialists? It might be good to get your situation reviewed by one of them. There are lists of doctors in the main section of this website. And lots of people speak very highly of Hollis Potter who I think is in New York (not sure), she is some sort of genius at interpreting MRI scans. This might be very useful - who knows, perhaps there is something that can be done surgically to sort out what has happened to your pudendal nerve, and relieve your pain.
I'm waiting to see a surgeon myself, here in the UK.
Off out with the dog now!
Well, I'll have to see about the Ipad. They are such a pretty thing, and so incredibly clever, I can hardly believe the things that are possible nowadays. I particularly like the application where you can see the constellations all identified for you, I'd love to be able to know the names of the stars like that. My son showed me this, I thought it was wonderful. I am so glad that yours has made such a difference - a window on the world, maybe.
I think your doctor is absolutely right about the medication masking the pain. That is just exactly what happens. Taking pain meds deals with the pain, not what's causing it. You do have to be really careful to still keep your lifestyle changes in place, you don't want to make the underlying condition get any worse. Pacing is absolutely vital, planned rests are vital too, and take great care to increase your activity slowly otherwise you are likely to get a flare.
But one thing to remember is that a flare is just that - a blip - and it won't last, you won't get stuck like that. Although it is horrible whilst it lasts, it does subside.
Are you still taking the lyrica? - it is important to get this pain out of the way, and get yourself as pain-free as possible. Otherwise the pain gate can get 'stuck open' and then you really have a problem. Amitriptyline is good stuff too, and it works with the lyrica. Maybe you could give the lyrica another shot? I read somewhere that many people get their best pain relief from neuropathic pain with the combination of an antidepressant (like amitrityline) and an anticonvulsant (like lyrica) - I think it was on this website somewhere but I can't find the page.
Maybe if the doctor could find a better balance with your meds, you could get out of the house for some little walks. I think I'd go nuts if I couldn't leave the house! Or maybe I should say, even more nuts.
Another thought - have you seen any of the PN specialists? It might be good to get your situation reviewed by one of them. There are lists of doctors in the main section of this website. And lots of people speak very highly of Hollis Potter who I think is in New York (not sure), she is some sort of genius at interpreting MRI scans. This might be very useful - who knows, perhaps there is something that can be done surgically to sort out what has happened to your pudendal nerve, and relieve your pain.
I'm waiting to see a surgeon myself, here in the UK.
Off out with the dog now!
Re: New to forum
Hi Calluna,
You are the third person to mention dr. potter . I have been doing some back ground research on her , she may be a good match. I live in Ontario, Canada and need to travel 8 hours by car to New York. My husband drives and I lay in the backseat. I have travelled to Toronto this way, four hour drive and it was difficult . Eight hours would be a challenge.
I had to stop lyrica due to side effects. If I lay still the pain is very manageable, however I have no life. It is all very frustrating.
I will keep on looking into dr. Potter and how to get there.
Thanks for your concern. Good luck on your doctor appt .
Gail
You are the third person to mention dr. potter . I have been doing some back ground research on her , she may be a good match. I live in Ontario, Canada and need to travel 8 hours by car to New York. My husband drives and I lay in the backseat. I have travelled to Toronto this way, four hour drive and it was difficult . Eight hours would be a challenge.
I had to stop lyrica due to side effects. If I lay still the pain is very manageable, however I have no life. It is all very frustrating.
I will keep on looking into dr. Potter and how to get there.
Thanks for your concern. Good luck on your doctor appt .
Gail