LOL Sadie,
I wasn't shooting the messenger, I promise. I'm not that kind of person. If you knew me, you would know. I'm like an old golden retriever. Just a good and simple soul. I simply found your muscle fatigue comment interesting as I had never heard it before.
That's why message boards can be difficult. You can't see the face of the person as they ask a question or make a comment and it can be misunderstood.
Very and sincerely sorry for that.
Thanks if you can ask your PT about his/her comment.
David
I wasn't shooting the messenger, I promise. I'm not that kind of person. If you knew me, you would know. I'm like an old golden retriever. Just a good and simple soul. I simply found your muscle fatigue comment interesting as I had never heard it before.
That's why message boards can be difficult. You can't see the face of the person as they ask a question or make a comment and it can be misunderstood.
Very and sincerely sorry for that.
Thanks if you can ask your PT about his/her comment.
David
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No, I don't want to shoot the messenger. I've just never heard that before & I haven't found anything on the web about it. I'm baffled by this and would like to read about it, if it is true. Thanks for the info, Mary
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I too would never shoot the messenger. I totally appreciate everyones opinion here. You all are very kind, and very compassionate. We have a scheduled appt. for surgery for the 25th.
Did a med change, no oxy at the moment. They gave my d a med that inhibits the sickness. It is called Subutex. She was happy when she realized the wouldn't have to swallow anything, just under the tongue. Not sure if she should have started this change with the surgery coming up. This morning she had the burning pain in the rectal area, which is a bit concerning, because I am not real knowledgeable about this meds and how it can help with pain.When this all started, she screamed for hours in the er until they dosed her up, been that way ever since. I can't see her scream like that ever again. She even jokes that if she has children, I would be the one bearing them. LOL We were thinking that since she had been on oxy for over 17months and she is in pain anyway maybe a change was needed. She is maintaining tonight and is in ok spirits.
I hope you all are good, and has anyone noted Ronny Jotten anywhere. I was wondering how he is mending. Hopefully good. Good Night from the West Coast. Menzie :)
Did a med change, no oxy at the moment. They gave my d a med that inhibits the sickness. It is called Subutex. She was happy when she realized the wouldn't have to swallow anything, just under the tongue. Not sure if she should have started this change with the surgery coming up. This morning she had the burning pain in the rectal area, which is a bit concerning, because I am not real knowledgeable about this meds and how it can help with pain.When this all started, she screamed for hours in the er until they dosed her up, been that way ever since. I can't see her scream like that ever again. She even jokes that if she has children, I would be the one bearing them. LOL We were thinking that since she had been on oxy for over 17months and she is in pain anyway maybe a change was needed. She is maintaining tonight and is in ok spirits.
I hope you all are good, and has anyone noted Ronny Jotten anywhere. I was wondering how he is mending. Hopefully good. Good Night from the West Coast. Menzie :)
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Menzie,
So glad to hear you have a surgery date. I wish I could switch with you so that your daughter could get it done sooner. Mine's the 14th. Your daughter sounds so much worse than me. I don't know how she's endured it or, for that matter, how YOU'VE endured it. Hang in there! There's an end in sight!
Margie
So glad to hear you have a surgery date. I wish I could switch with you so that your daughter could get it done sooner. Mine's the 14th. Your daughter sounds so much worse than me. I don't know how she's endured it or, for that matter, how YOU'VE endured it. Hang in there! There's an end in sight!
Margie
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I echo that Menzie. You are WAY tougher than me. Heck, my wife is WAY tougher than me too. For that matter, I'm guessing most one here are. There is no way I would have gone as long as most of you have without some type of relief.
Glad your daughter got a date set.
Glad your daughter got a date set.
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Good news everyone:
I woke up this morning with far less pain than any other day. Ran quite a few errands today and also had far less pain through them as I have before.
I feel so much better. Thinking of all of you.
Leesa
I woke up this morning with far less pain than any other day. Ran quite a few errands today and also had far less pain through them as I have before.
I feel so much better. Thinking of all of you.
Leesa
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Menzie,
Glad to hear you have a date set for your daughter. I'm praying that the surgery will go really well and that it will be the answer. You and your daughter have both been through a lot and deserve some relief.
Leesa, Great to hear that you are doing well. Just remember to add activities slowly and don't over do it. its so easy to want to do a lot as you feel better.
David, Sounds like you had a great time on your cruise.
Sadie, I truly understand about being concerned about side effects of medications. I never found one that I felt like the benefits outweighed the negatives....nothing seemed to help the pain, yet they all made me feel out of it, caused racing heart beat, depression,you name it. If you and your doctor feel like the spinal stimulator will help, then go for it. You need to find an answer that works for you. We're all pulling for you to find the relief you need.
Hope everyone is doing as well as possible.
Donna
Glad to hear you have a date set for your daughter. I'm praying that the surgery will go really well and that it will be the answer. You and your daughter have both been through a lot and deserve some relief.
Leesa, Great to hear that you are doing well. Just remember to add activities slowly and don't over do it. its so easy to want to do a lot as you feel better.
David, Sounds like you had a great time on your cruise.
Sadie, I truly understand about being concerned about side effects of medications. I never found one that I felt like the benefits outweighed the negatives....nothing seemed to help the pain, yet they all made me feel out of it, caused racing heart beat, depression,you name it. If you and your doctor feel like the spinal stimulator will help, then go for it. You need to find an answer that works for you. We're all pulling for you to find the relief you need.
Hope everyone is doing as well as possible.
Donna
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Hello fellow PS sufferers!
As usual, the post has been busy. I don't remember everyone's status so I just want to say that you all have been in my thoughts and prayers. Chronic PS pain is horrible and it's helpful to talk with others who can relate. I didn't realize how much 'sitting' life normally requires until sitting became unbearable!
Here's an update:
I saw the new ortho/Dr B for my hip Monday. The hip xrays show a need for hip replacements (I already knew that) but he's ordered a right sided SI injection first. His theory is that the pain is from the SI joint and my hip. We'll see. At least he's "hearing" me and seems willing to work thru this. He also gave me a steroid injection into the rt bursa since it was also painful. I've given up on the Pain Mgt doc. He lowered my narc dosage to 2x/d which just isn't cutting it. I tried to get an earlier appt but he wouldn't do that or increase the dosage back to 3x/d like it was before the Radiofrequency Ablation. (RF) I get the impression that he doesn't believe the pain is real either. The RF got rid of the low back pain but didn't do a thing for the butt pain. I think my PCP has also gone adrift. It's soooo frustrating to go from being very active to totally sedentary and in pain all the time. Have you guys had problems with MDs brushing you off? After three years of dealing with this, I can see their frustration but give me a break. I don't want it either!
In answer to a previous qx, I am 53 yrs old but I've had arthritis since I was 30. I think I went thru all the NSAIDs and was finally on Vioxx for years. Vioxx was a lifesaver until I developed a very, very itchy bulleous (like blisters) rash from face to legs. It took 9 months of steroids before I figured out that the Vioxx was the cause. Since then I've used Darvocet for the arthritis pain. And then the butt pain started....
Has anyone applied for Social Security Disability due to this? I'm on long-term disability from work right now but was really hoping I'd be back to work by now. I've been off since October and it sure doesn't look like I'll be going back anytime soon. My long-term disability plan has told me to apply for SSD.
David, you're an inspiration to all of us. You and the other successful PS surgery members give us hope. Thank you.
Menzie, I'm happy to hear your dtr has a surgery date. It's hard being the one in pain but it must be awful seeing your dtr suffering and can't do anything to make it go away. I'm a mother of two girls, so as a mother, I can relate.
Take care,
Debbie
As usual, the post has been busy. I don't remember everyone's status so I just want to say that you all have been in my thoughts and prayers. Chronic PS pain is horrible and it's helpful to talk with others who can relate. I didn't realize how much 'sitting' life normally requires until sitting became unbearable!
Here's an update:
I saw the new ortho/Dr B for my hip Monday. The hip xrays show a need for hip replacements (I already knew that) but he's ordered a right sided SI injection first. His theory is that the pain is from the SI joint and my hip. We'll see. At least he's "hearing" me and seems willing to work thru this. He also gave me a steroid injection into the rt bursa since it was also painful. I've given up on the Pain Mgt doc. He lowered my narc dosage to 2x/d which just isn't cutting it. I tried to get an earlier appt but he wouldn't do that or increase the dosage back to 3x/d like it was before the Radiofrequency Ablation. (RF) I get the impression that he doesn't believe the pain is real either. The RF got rid of the low back pain but didn't do a thing for the butt pain. I think my PCP has also gone adrift. It's soooo frustrating to go from being very active to totally sedentary and in pain all the time. Have you guys had problems with MDs brushing you off? After three years of dealing with this, I can see their frustration but give me a break. I don't want it either!
In answer to a previous qx, I am 53 yrs old but I've had arthritis since I was 30. I think I went thru all the NSAIDs and was finally on Vioxx for years. Vioxx was a lifesaver until I developed a very, very itchy bulleous (like blisters) rash from face to legs. It took 9 months of steroids before I figured out that the Vioxx was the cause. Since then I've used Darvocet for the arthritis pain. And then the butt pain started....
Has anyone applied for Social Security Disability due to this? I'm on long-term disability from work right now but was really hoping I'd be back to work by now. I've been off since October and it sure doesn't look like I'll be going back anytime soon. My long-term disability plan has told me to apply for SSD.
David, you're an inspiration to all of us. You and the other successful PS surgery members give us hope. Thank you.
Menzie, I'm happy to hear your dtr has a surgery date. It's hard being the one in pain but it must be awful seeing your dtr suffering and can't do anything to make it go away. I'm a mother of two girls, so as a mother, I can relate.
Take care,
Debbie
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Debbie:
I hope the injections help. You ve been through the ringer. I had an acupuncturist once tell me (in so many words) that I was lying about which side was hurting. He said, after I complained about continued pain in my left leg, that I told him it was in my right leg on the prior visit. That was my last visit with him. Some of these health professionals are idiots. I also don t understand completely why doctors refuse to prescribe medication for people who obviously need it.
I applied for temporary disability to cover the time I ve missed work since surgery. I m self employed and figured why not? I haven t heard from them yet but think Dr. Filler just sent my paperwork in this week.
Please hang in there and don t stop searching for an answer. You deserve it.
Leesa
I hope the injections help. You ve been through the ringer. I had an acupuncturist once tell me (in so many words) that I was lying about which side was hurting. He said, after I complained about continued pain in my left leg, that I told him it was in my right leg on the prior visit. That was my last visit with him. Some of these health professionals are idiots. I also don t understand completely why doctors refuse to prescribe medication for people who obviously need it.
I applied for temporary disability to cover the time I ve missed work since surgery. I m self employed and figured why not? I haven t heard from them yet but think Dr. Filler just sent my paperwork in this week.
Please hang in there and don t stop searching for an answer. You deserve it.
Leesa
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Debbie,
I've been dealing with PS over a decade and MANY doctors brushed me off. But my favorite was in early 2002 - a doctor at Stanford - who, after he was unable to "cure" me with some steroid injections, antidepressants and accupuncture, he told me that after what happened to people during the attack on 9/11, I should stop complaining! I'm not making this up!! I've never been much for profanity but I believe I used some in his office that day!
Moral of the story: Keep searching!
Margie
I've been dealing with PS over a decade and MANY doctors brushed me off. But my favorite was in early 2002 - a doctor at Stanford - who, after he was unable to "cure" me with some steroid injections, antidepressants and accupuncture, he told me that after what happened to people during the attack on 9/11, I should stop complaining! I'm not making this up!! I've never been much for profanity but I believe I used some in his office that day!
Moral of the story: Keep searching!
Margie
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Hi Leesa,
Thanks for your reply/support. Yeah, as one of the health professionals myself (RN) I'm very disheartened by the state of our healthcare system and physicians. It's really hard to find someone that will really listen and care. It's get'em in and get'em out.
As a nurse, I've heard too many co-workers talk about all the pain patients as if they're all addicts. I guess they've been burned too many times and hearts have just gotten hard. I'm also a palliative care nurse. I think that's the only specialty that really believes patients when they say they're in pain. We're taught that pain is what the patient says it is but that's not what is practiced in reality. I think most physicians still think one has to be screaming and crying before they prescribe pain meds. If anyone needs it beyond the acute period they're either depressed or addicts. I guess all this has made me a little bitter. In this day and age, no one should have to suffer for months and years! Dr Huggables what are your thoughts regarding this?
As for disability, I think the "sitting" issue baffles people. They think you just don't want to work. I love my job but there's no way I can continue sitting 8+ hours a day. Just 20 min is an accomplishment. Then they say, "Well, you can get up and stretch a little." Duh...that doesn't really help the pain. Lay down, walk a few minutes, sit long enough to eat and then repeat the process. With the knee issue, even walking outside has become an issue.
I'm so glad you're finally experiencing less pain and being able to get out more. Keep us updated as to your post-op journey---it helps all of us know what to expect and gives us hope.
Take care,
Debbie
Thanks for your reply/support. Yeah, as one of the health professionals myself (RN) I'm very disheartened by the state of our healthcare system and physicians. It's really hard to find someone that will really listen and care. It's get'em in and get'em out.
As a nurse, I've heard too many co-workers talk about all the pain patients as if they're all addicts. I guess they've been burned too many times and hearts have just gotten hard. I'm also a palliative care nurse. I think that's the only specialty that really believes patients when they say they're in pain. We're taught that pain is what the patient says it is but that's not what is practiced in reality. I think most physicians still think one has to be screaming and crying before they prescribe pain meds. If anyone needs it beyond the acute period they're either depressed or addicts. I guess all this has made me a little bitter. In this day and age, no one should have to suffer for months and years! Dr Huggables what are your thoughts regarding this?
As for disability, I think the "sitting" issue baffles people. They think you just don't want to work. I love my job but there's no way I can continue sitting 8+ hours a day. Just 20 min is an accomplishment. Then they say, "Well, you can get up and stretch a little." Duh...that doesn't really help the pain. Lay down, walk a few minutes, sit long enough to eat and then repeat the process. With the knee issue, even walking outside has become an issue.
I'm so glad you're finally experiencing less pain and being able to get out more. Keep us updated as to your post-op journey---it helps all of us know what to expect and gives us hope.
Take care,
Debbie
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Margie,
The nerve of that doc!! That's the kind of behavior I'm talking about. Instead of really taking an interest in helping someone, the patient gets the brush-off if the first treatment doesn't work. A DECADE? It's been 4 hrs for me and there's no way I can go another 6. Have you had the surgery? I'm sure you've discussed it if you have but I can't remember everybody's story.
Debboe
The nerve of that doc!! That's the kind of behavior I'm talking about. Instead of really taking an interest in helping someone, the patient gets the brush-off if the first treatment doesn't work. A DECADE? It's been 4 hrs for me and there's no way I can go another 6. Have you had the surgery? I'm sure you've discussed it if you have but I can't remember everybody's story.
Debboe
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Debbie,
My surgery date is on 14th. I'm counting the days! And some days I'm counting the minutes! Tick-tock! Tick-tock! Tick-tock!
Margie
My surgery date is on 14th. I'm counting the days! And some days I'm counting the minutes! Tick-tock! Tick-tock! Tick-tock!
Margie
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Leesa, FANTASTIC!!!!!!!!!!!!!!!!!!
Donna, how is PT going? ast we heard, you had some increased nerve issues related to PT.
Stop complaining because of 9/11. There are not enough words in the four letter category to suitably address that comment.
Debbie, hope the injections help as well.
The 14th will get here Margie. Not fast enough I know but it will. We will be thinking of you.
Okay, where are the guys on this board? I am officially declaring that I am surrounded by too much estrogen. Yes, I'm kidding. I think very highly of each of you and, after having lived with this for a much shorter time than most of you, please know you have my full and utmost respect. Now, where are the guys?
Donna, how is PT going? ast we heard, you had some increased nerve issues related to PT.
Stop complaining because of 9/11. There are not enough words in the four letter category to suitably address that comment.
Debbie, hope the injections help as well.
The 14th will get here Margie. Not fast enough I know but it will. We will be thinking of you.
Okay, where are the guys on this board? I am officially declaring that I am surrounded by too much estrogen. Yes, I'm kidding. I think very highly of each of you and, after having lived with this for a much shorter time than most of you, please know you have my full and utmost respect. Now, where are the guys?
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