Just needing some words of comfort....I'm in a flare right now since the NYC trip (all the walking, sitting on plane, carrying heavy stuff) and I feel hopeless. My pain doc today changed me to oxycontin 10 mg twice daily, Percocet in between, and valium . I feel like I'm taking more meds than anyone on here. I'm slowly upping my Neurontin hoping that will help.
I've just found it hard to get out of bed every day, knowing I'll be suffering in pain the whole day.
help!!!!!!!
thanks,
cari
Can't get pain under control
Can't get pain under control
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)
-
HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Can't get pain under control
Hi Cari,
I am very sorry about the pain and it is definitely important to challenge the urge to give in to depression and anxiety, because your state of mind can definitely have an impact on your pain level.
I have lived with some degree of chronic pelvic pain disorder since I was a teenager, althoughI had a really good run of about 20 years where I was totally satisfied with my quality of life. What I experienced was, when I first encountered a chronic pain disorder, I didn't have any coping skills in place, mental or physical. Mentally, you are used to believing that when you don't feel well you are entitled to take a sick day and lie down until you feel better. Physically, you have not had time to take inventory of what is going on with your body, and learn to avoid exacerbation and promote remission. I remember when I was 14 and was in a lot of pain from interstitial cystitis, I felt injured and confused like a wounded animal. Not only did I not know the first thing about self care, but I also did not even understand there is such a thing as self care: I was used to brief acute illness and couldn't understand why the Doctor would not just tell me what was wrong and make it better.
You will not feel this helpless forever. There is a kind of grieving process to go through, before you accept that you are in this for the long haul and that your quality of life is determined in large part by your ability to self advocate. The two most important principles I can think of are:
1. Declare yourself as the head of your health care team, and take on that role with authority. There is nobody in this world that can possibly care how much pain you are in, as much as you do. So it is your project to tackle.
2. PAY ATTENTION, very close attention, to your body. You will have good days and bad days and they are not random. The more you learn from your own body about what causes remission and what causes exacerbation, the more remission you will have.
It is very possible to have excellent quality of life with a chronic pain disorder. It is also very possible to be cured. There was a lot less information and help available in the 1980's and I really did not have hope of a cure, I just count myself blessed that I started refusing medical care before I was butchered. Pelvic pain is a very different field now, there are really effective treatments available and a lot more innovation in the works. We are finally being taken seriously! But since I did not have that kind of help in the '80's, I know for a fact that an individual can have a great impact on their own quality of life even with no medical help. I put myself into remission for a very long time. I was not "normal", but it was "my normal", and it allowed me to get on with my life. If you are taking more meds than most people it is because you are "the new kid", and have not had time to work with your Doc on perfecting a med regimen unique to your needs. Things will not always be this "acute". And I know you are working hard to get yourself the care you need, so my hope is you will be "temporarily chronic", then CURED! Still meanwhile, there is much you can do to accept and improve your situation. This flare will pass. This whole episode in your life will pass. I wish it would pass sooner for you. Hugs to you and remember what you are feeling now is an acute exacerbation and not the story of the rest of your life!
I am very sorry about the pain and it is definitely important to challenge the urge to give in to depression and anxiety, because your state of mind can definitely have an impact on your pain level.
I have lived with some degree of chronic pelvic pain disorder since I was a teenager, althoughI had a really good run of about 20 years where I was totally satisfied with my quality of life. What I experienced was, when I first encountered a chronic pain disorder, I didn't have any coping skills in place, mental or physical. Mentally, you are used to believing that when you don't feel well you are entitled to take a sick day and lie down until you feel better. Physically, you have not had time to take inventory of what is going on with your body, and learn to avoid exacerbation and promote remission. I remember when I was 14 and was in a lot of pain from interstitial cystitis, I felt injured and confused like a wounded animal. Not only did I not know the first thing about self care, but I also did not even understand there is such a thing as self care: I was used to brief acute illness and couldn't understand why the Doctor would not just tell me what was wrong and make it better.
You will not feel this helpless forever. There is a kind of grieving process to go through, before you accept that you are in this for the long haul and that your quality of life is determined in large part by your ability to self advocate. The two most important principles I can think of are:
1. Declare yourself as the head of your health care team, and take on that role with authority. There is nobody in this world that can possibly care how much pain you are in, as much as you do. So it is your project to tackle.
2. PAY ATTENTION, very close attention, to your body. You will have good days and bad days and they are not random. The more you learn from your own body about what causes remission and what causes exacerbation, the more remission you will have.
It is very possible to have excellent quality of life with a chronic pain disorder. It is also very possible to be cured. There was a lot less information and help available in the 1980's and I really did not have hope of a cure, I just count myself blessed that I started refusing medical care before I was butchered. Pelvic pain is a very different field now, there are really effective treatments available and a lot more innovation in the works. We are finally being taken seriously! But since I did not have that kind of help in the '80's, I know for a fact that an individual can have a great impact on their own quality of life even with no medical help. I put myself into remission for a very long time. I was not "normal", but it was "my normal", and it allowed me to get on with my life. If you are taking more meds than most people it is because you are "the new kid", and have not had time to work with your Doc on perfecting a med regimen unique to your needs. Things will not always be this "acute". And I know you are working hard to get yourself the care you need, so my hope is you will be "temporarily chronic", then CURED! Still meanwhile, there is much you can do to accept and improve your situation. This flare will pass. This whole episode in your life will pass. I wish it would pass sooner for you. Hugs to you and remember what you are feeling now is an acute exacerbation and not the story of the rest of your life!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Can't get pain under control
Hi carolyn - HM has given you some really excellent advice. I agree with everything that she has said.
It really is so hard at the beginning of this journey. I remember reading through the Emotional Aspects section of this website, and thinking - acceptance? What on earth is that about? If I accept this, then I've given up, and I'm not doing that!
I was so wrong. Acceptance is the key. It means saying, ok here I am, and I've got this situation going on for the time being, and now I move forward. It took me a while to get there, I had help from a psychologist (I was referred by my GP) who helped me so much. She recommended this book to me - Coping Successfully with Chronic Pain - at first I borrowed a copy from my local library and then I bought myself a copy as I was referring to it so much. It is really excellent, and I would recommend it to you.
Flares are horrible, but you won't stay like this, the flare will subside. And this pain will come under control, you and your pain doctor just haven't identified the right combination of meds yet.
I don't know what dose of gabapentin/Neurontin you are taking, but most people don't get any relief at all until they reach 1800mg a day, and for many people the dose is higher than that - 2400mg or even as high as 3600mg. I was getting some help at 1800mg, not a lot though. Also, I don't know if you have had the opportunity to try pregabalin/Lyrica? - for me, it was a magic pill, it helped better and faster than anything else.
In the meantime, pace yourself. Schedule rests, every hour if you need them. More than that, if you need it! Don't worry about the chores, they can wait. Plan things that you enjoy - a magazine or book to read? and a cup of good coffee with your feet up? resting on the sofa and watching a favourite dvd? - even small things that bring a little bit of pleasure in your life are worth paying attention to. And lots of little helps can add up to giving you a better day.
It really is so hard at the beginning of this journey. I remember reading through the Emotional Aspects section of this website, and thinking - acceptance? What on earth is that about? If I accept this, then I've given up, and I'm not doing that!
I was so wrong. Acceptance is the key. It means saying, ok here I am, and I've got this situation going on for the time being, and now I move forward. It took me a while to get there, I had help from a psychologist (I was referred by my GP) who helped me so much. She recommended this book to me - Coping Successfully with Chronic Pain - at first I borrowed a copy from my local library and then I bought myself a copy as I was referring to it so much. It is really excellent, and I would recommend it to you.
Flares are horrible, but you won't stay like this, the flare will subside. And this pain will come under control, you and your pain doctor just haven't identified the right combination of meds yet.
I don't know what dose of gabapentin/Neurontin you are taking, but most people don't get any relief at all until they reach 1800mg a day, and for many people the dose is higher than that - 2400mg or even as high as 3600mg. I was getting some help at 1800mg, not a lot though. Also, I don't know if you have had the opportunity to try pregabalin/Lyrica? - for me, it was a magic pill, it helped better and faster than anything else.
In the meantime, pace yourself. Schedule rests, every hour if you need them. More than that, if you need it! Don't worry about the chores, they can wait. Plan things that you enjoy - a magazine or book to read? and a cup of good coffee with your feet up? resting on the sofa and watching a favourite dvd? - even small things that bring a little bit of pleasure in your life are worth paying attention to. And lots of little helps can add up to giving you a better day.
Re: Can't get pain under control
Hi Cari,
I'm so very sorry you're having such a hard time. Excellent responses from Hermajesty and Calluna! Both posts are worth reading twice. I can't comment on finding the right combo of meds, as they have been ineffective for me for pain relief. That, combined with the side effects; I personally feel they further diminished my quality of life.
I hope you'll find the support and courage to take charge of this condition, instead of it taking charge of you. By all means, give yourself time to adjust. This condition is a very difficult thing to wrap your head around and what you're feeling right now is completely normal.
Karyn
I'm so very sorry you're having such a hard time. Excellent responses from Hermajesty and Calluna! Both posts are worth reading twice. I can't comment on finding the right combo of meds, as they have been ineffective for me for pain relief. That, combined with the side effects; I personally feel they further diminished my quality of life.
I hope you'll find the support and courage to take charge of this condition, instead of it taking charge of you. By all means, give yourself time to adjust. This condition is a very difficult thing to wrap your head around and what you're feeling right now is completely normal.
calluna wrote:Acceptance is the key. It means saying, ok here I am, and I've got this situation going on for the time being, and now I move forward.
HerMajesty wrote:1. Declare yourself as the head of your health care team, and take on that role with authority. There is nobody in this world that can possibly care how much pain you are in, as much as you do. So it is your project to tackle.
HerMajesty wrote: This whole episode in your life will pass. I wish it would pass sooner for you. Hugs to you and remember what you are feeling now is an acute exacerbation and not the story of the rest of your life!
With hugs and best wishes,calluna wrote: even small things that bring a little bit of pleasure in your life are worth paying attention to.
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Can't get pain under control
Hi Cari,
How's it going? Hope things have calmed down since your return home. Traveling is so difficult with this condition.
The right combo of meds is so important but the stage where you are experimenting with meds to find out what works for you is so hard. Some meds I tried made me so sick that PNE and a bad med reaction together made me feel like life wasn't worth living (although just PNE itself did that too). But you will get through this and eventually figure out what works for you and what doesn't. Don't forget ice too. Ice gel packs and ice balloons that you insert vaginally -- I never would have survived without them.
I think being able to sleep at night is really important because if you can get away from the pain and get some strength back it helps you face the day better. Are you sleeping OK? The meds you are currently taking are not out of range for the normal for PNE patients so if they're helping, don't sweat it. Just do what you have to do to get through this.
Hugs,
Violet
How's it going? Hope things have calmed down since your return home. Traveling is so difficult with this condition.
The right combo of meds is so important but the stage where you are experimenting with meds to find out what works for you is so hard. Some meds I tried made me so sick that PNE and a bad med reaction together made me feel like life wasn't worth living (although just PNE itself did that too). But you will get through this and eventually figure out what works for you and what doesn't. Don't forget ice too. Ice gel packs and ice balloons that you insert vaginally -- I never would have survived without them.
I think being able to sleep at night is really important because if you can get away from the pain and get some strength back it helps you face the day better. Are you sleeping OK? The meds you are currently taking are not out of range for the normal for PNE patients so if they're helping, don't sweat it. Just do what you have to do to get through this.
Hugs,
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: Can't get pain under control
Violet and other friends,
I am still struggling. I upped my Neurontin to 2000 mg/day in 1 week just to get some pain control. It has helped marginally during the day, but I pay for it at night. I went around our neighborhood with my 1 year old yesterday, sat at breakfast for 30 minutes with my family, and generally played all day with my kids, and did OK. Last night, I was in horrrific pain, crying uncontrollably, the whole bit.
I feel like I am close to being bedridden and I am scared. Something wonderful happened and I have an appt with Dr. Hibner Tuesday. My older brother (he is 50) is meeting me at the gate at the airport and will tote me around in Phoenix to all the appts. I hope The Universe is looking down on me and I will find some relief soon.
Thank you for thinking about me. I wish I had better news. I am still grieving so terribly.
with love,
cari
I am still struggling. I upped my Neurontin to 2000 mg/day in 1 week just to get some pain control. It has helped marginally during the day, but I pay for it at night. I went around our neighborhood with my 1 year old yesterday, sat at breakfast for 30 minutes with my family, and generally played all day with my kids, and did OK. Last night, I was in horrrific pain, crying uncontrollably, the whole bit.
I feel like I am close to being bedridden and I am scared. Something wonderful happened and I have an appt with Dr. Hibner Tuesday. My older brother (he is 50) is meeting me at the gate at the airport and will tote me around in Phoenix to all the appts. I hope The Universe is looking down on me and I will find some relief soon.
Thank you for thinking about me. I wish I had better news. I am still grieving so terribly.
with love,
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: Can't get pain under control
p.s. When I have 2 little ones reaching up their arms to me saying "mama", how can I not pick them up? This is what makes me most sad.
cm
cm
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: Can't get pain under control
TUESDAY! Wow! That is amazing. So happy for you. I am right there with you, Cari. I too am becoming more and more debilitated spending most of my day lying down. But don't give up, looks like very soon you will at least be able to start moving forward with treatment.carolynm wrote:I feel like I am close to being bedridden and I am scared. Something wonderful happened and I have an appt with Dr. Hibner Tuesday. My older brother (he is 50) is meeting me at the gate at the airport and will tote me around in Phoenix to all the appts.
It is one of the hardest things. My daughter always wants me to sit with while eating meals, but she is beginning to learn that Mommy doesn't sit I think. Sometimes she just wants me to hold her and rock her for a little while when she first wakes up from her nap and that is one of the hardest things for me. Sometimes I do it, but if I do I pay for it. The good thing is they are very young and will not likely remember this. There is a good chance of us getting better before they ever remember how bad we were. Even if we live with lifelong pain we will get better at managing it and they will be acustomed to our limitations and most importantly will not love us any less.carolynm wrote:p.s. When I have 2 little ones reaching up their arms to me saying "mama", how can I not pick them up? This is what makes me most sad.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: Can't get pain under control
Cari, it's great that you were able to get in with Dr. Hibner. The crying/bedridden days are not easy to get through but chances are they will someday be a thing of the past for you. Maybe if you lie down on a mat on the floor where the children are they can crawl around and get close to mommy and you will still maintain the closeness that you want with them. Children are resilient and they can learn that you love them even if you can't pick them up. 
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: Can't get pain under control
Dear Cari and everyone..
I can so relate you! I am feeling the same way.. I will explain issues in another post,but I sure do feel for you and am right there with you. My pain is not managed well mainly cause my body doesn't like the meds (side effects
. I joined the facebook grp for PN as I've been home so much lately and feel the need for support (its wearing thin on my hubby) . I post there once in awhile there but find that going on too much raises my fear level and lowers my mood..
I find it best to have a distraction. Even if pay royally after with pain, (I accept most invitations to go out) and briefly I am me for awhile!
As a mom of kids aged 19, 17 and11 I feel soo guilty about lately having to miss things.. but am keeping the hope that situation (somehow) will improve!) It is very good that yours are so young. You will be doing better wayyy before they are old enough to remember.
One thing my oldest said to me that was wonderful is that he understood that when am crying or in bad shape he remembers that is the pain talking NOT not his mom.. When I want give to up in advocating or trying, I think of the kids and keep on fighting this thing.
Keep the faith .. we will get better!
Kathy
I can so relate you! I am feeling the same way.. I will explain issues in another post,but I sure do feel for you and am right there with you. My pain is not managed well mainly cause my body doesn't like the meds (side effects
. I joined the facebook grp for PN as I've been home so much lately and feel the need for support (its wearing thin on my hubby) . I post there once in awhile there but find that going on too much raises my fear level and lowers my mood..
I find it best to have a distraction. Even if pay royally after with pain, (I accept most invitations to go out) and briefly I am me for awhile!
As a mom of kids aged 19, 17 and11 I feel soo guilty about lately having to miss things.. but am keeping the hope that situation (somehow) will improve!) It is very good that yours are so young. You will be doing better wayyy before they are old enough to remember.
One thing my oldest said to me that was wonderful is that he understood that when am crying or in bad shape he remembers that is the pain talking NOT not his mom.. When I want give to up in advocating or trying, I think of the kids and keep on fighting this thing.
Keep the faith .. we will get better!
Kathy