Hi! I guess all it takes is a "where is everyone" to get us talking again! Thanks Jo. I hope you are doing better and better every day.
Nick, yes, insurance companies can be more painfull than our pain. I'm still getting bills - for what I'm not quite sure. All I know is I'm real sick of paying them.
Shirley, try to stick to your 15 minutes - or else!
Menzie, hoping you and your famiily are doing ok. Always thinking of you.
Yeah, Brandon, how is it going with your doctors and meds?
Take care,
Leesa
Nick, yes, insurance companies can be more painfull than our pain. I'm still getting bills - for what I'm not quite sure. All I know is I'm real sick of paying them.
Shirley, try to stick to your 15 minutes - or else!
Menzie, hoping you and your famiily are doing ok. Always thinking of you.
Yeah, Brandon, how is it going with your doctors and meds?
Take care,
Leesa
Hello,
I hope everyone is doing well. Thank you so much for your advice and support. I will be thinking of you guys on Thanksgiving. I am going to give Lyrica a try after finals are over at school.
Nick: How much do the Fentanyl patches cost after insurance? Any generic? I know how you feel about insurance companies.
Menzie: I really hope your D improves. I am happy she is able to go swimming; it must make her feel better to get some exercise. How does your D deal with her condition? Is she able to take some online classes or is her pain too much to concentrate? How long can she sit down without going crazy?
About my med situation: If I look for a new doctor, then I have to stay within the health center at my university. I have seen most of the doctors at the health center and the one I am seeing is the most familiar with back pain, etc. I think my doctor might be willing to give me a longer acting pain killer but If I start going up in dosage he is going to cut me off. He has made a point of telling me at every appointment that he is okay giving me pain meds as long as I don't need more and more. If I need more meds, then I am going to see a different doctor. You are right about having a doctor that is an advocate.
Shirley: Have you ever thought about getting a laptop so you don't have to sit up? That is what I do and it helps so much. My studies are going really well. I have averaged a 97 percent on all of my exams so far and all I have is a paper due in a week and a couple of finals coming up. I am on track to get straight A's; I just hope I can do they same while taking 4 or more classes. I am also not doing anything but studying and hanging out with my girlfriend. I need to be able to volunteer and get clinical experience to increase my chances of getting into medical school. I just really hope my pain will get better so I will have a shot at getting accepted. I doubt they will let a student in that can't sit in a normal chair for more than 30 minutes.
Take care,
Brandon
I hope everyone is doing well. Thank you so much for your advice and support. I will be thinking of you guys on Thanksgiving. I am going to give Lyrica a try after finals are over at school.
Nick: How much do the Fentanyl patches cost after insurance? Any generic? I know how you feel about insurance companies.
Menzie: I really hope your D improves. I am happy she is able to go swimming; it must make her feel better to get some exercise. How does your D deal with her condition? Is she able to take some online classes or is her pain too much to concentrate? How long can she sit down without going crazy?
About my med situation: If I look for a new doctor, then I have to stay within the health center at my university. I have seen most of the doctors at the health center and the one I am seeing is the most familiar with back pain, etc. I think my doctor might be willing to give me a longer acting pain killer but If I start going up in dosage he is going to cut me off. He has made a point of telling me at every appointment that he is okay giving me pain meds as long as I don't need more and more. If I need more meds, then I am going to see a different doctor. You are right about having a doctor that is an advocate.
Shirley: Have you ever thought about getting a laptop so you don't have to sit up? That is what I do and it helps so much. My studies are going really well. I have averaged a 97 percent on all of my exams so far and all I have is a paper due in a week and a couple of finals coming up. I am on track to get straight A's; I just hope I can do they same while taking 4 or more classes. I am also not doing anything but studying and hanging out with my girlfriend. I need to be able to volunteer and get clinical experience to increase my chances of getting into medical school. I just really hope my pain will get better so I will have a shot at getting accepted. I doubt they will let a student in that can't sit in a normal chair for more than 30 minutes.
Take care,
Brandon
Brandon, Wow straight A's with a 97% average. You are to be cingratulated to have done this while you still ave pain. The lyrica may help. I lowered mine because I found it hard to get out of bed in the morning when I raised it so I lowered it again but if I find that the neuropathic pain gets worse then I may try to raise it again. Nick had no side effects from it and I think same for Jo. I am very sensitive to certain kinds of meds. I couldn't take neurontin which is a similar drug. I think you are wise to wait unti exams are over.
I do have a lap top but I find it hard to lie down and use the key board. If I practiced more it would work so maybe I will. Leesa tried to get me to use it too. Thanks for reminding me.
OK--off to bed. Good luck on your exams and I hope you find a doctor that is supportive in terms of pain meds. I am on slow release oxycontin wiht percocet for breakthrough pain. I am still having to use it as my pain is not that much improved yet. I have some good days but others are pretty much like before surgery. The pain is different though, but at about the same level as presurgery. But my good days are better that good days I had pre-surgery.
Still sitting at my desktop so will try my laptop next time.
Good luck on your exams.
Shirley
I do have a lap top but I find it hard to lie down and use the key board. If I practiced more it would work so maybe I will. Leesa tried to get me to use it too. Thanks for reminding me.
OK--off to bed. Good luck on your exams and I hope you find a doctor that is supportive in terms of pain meds. I am on slow release oxycontin wiht percocet for breakthrough pain. I am still having to use it as my pain is not that much improved yet. I have some good days but others are pretty much like before surgery. The pain is different though, but at about the same level as presurgery. But my good days are better that good days I had pre-surgery.
Still sitting at my desktop so will try my laptop next time.
Good luck on your exams.
Shirley
First of all, congrats! I don't know how you manage to do all the things you're doing with the pain. It's amazing.
As far as the Fentanyl, I had a $20 co-pay for a 30 day supply, I think. Not sure what the full cost would be, and I don't think there's a generic version, but I can ask my pharmacist to look it up. The whole pain meds dilemma is so tough. Obviously you don't want keep taking more and more, but then again when you're in so much pain that you can't function, you just want something to at least give you a few hours with less pain. And I understand that doctors don't want people to get addicted and become dependent, but they should still be willing to work with you. In my case, it's been almost the opposite -- doctors just writing scripts away for pain meds as if it weren't a big deal, and I've really been the one having to monitor how much I'm taking, trying to cut down when the pain is not as bad. Unfortunately right now, the Fentanyl patch isn't really doing much anymore, and I've only been on it for a week and a half. But the first few days were amazing (as in my pain level was down to a 2 or 3).
As far as the Lyrica, Shirley is right. I've been on it for a while and never had any side effects. Maybe a little weight gain, but that's probably also to blame on all the comfort food and the fact that I can no longer exercise. But on the flip side, I don't think it's helping with my back pain at all (I'm taking it for fibromyalgia, and it's worked wonders for that, which is why i'm still taking it).
-nick
As far as the Fentanyl, I had a $20 co-pay for a 30 day supply, I think. Not sure what the full cost would be, and I don't think there's a generic version, but I can ask my pharmacist to look it up. The whole pain meds dilemma is so tough. Obviously you don't want keep taking more and more, but then again when you're in so much pain that you can't function, you just want something to at least give you a few hours with less pain. And I understand that doctors don't want people to get addicted and become dependent, but they should still be willing to work with you. In my case, it's been almost the opposite -- doctors just writing scripts away for pain meds as if it weren't a big deal, and I've really been the one having to monitor how much I'm taking, trying to cut down when the pain is not as bad. Unfortunately right now, the Fentanyl patch isn't really doing much anymore, and I've only been on it for a week and a half. But the first few days were amazing (as in my pain level was down to a 2 or 3).
As far as the Lyrica, Shirley is right. I've been on it for a while and never had any side effects. Maybe a little weight gain, but that's probably also to blame on all the comfort food and the fact that I can no longer exercise. But on the flip side, I don't think it's helping with my back pain at all (I'm taking it for fibromyalgia, and it's worked wonders for that, which is why i'm still taking it).
-nick
Not much to write, but I did want to wish you all a Happy Thanksgiving Day. And a Super Day to all outside the US. Today was the third Thanksgiving day that our D was not sitting at the table with us, but she was in the recliner and enjoyed her pumpkin pie.
I hope you are all well. Menzie :)
I hope you are all well. Menzie :)
Hi everyone,
I hope you all had a wonderful Thanksgiving! I managed to live by slouching on the couch and laying down on the floor. I also took a lot of pain killers. I am continuing to excel in class
Menzie: I am sorry your D couldn't sit up and eat. I know how she feels. Is she in pain when laying down? Has she tried yoga? I know you guys have probably tried everything but I am just curious how her pain changes and what makes it better. Let her know that a lot of people have been thinking of her and wishing for the best.
Take care,
Brandon
I hope you all had a wonderful Thanksgiving! I managed to live by slouching on the couch and laying down on the floor. I also took a lot of pain killers. I am continuing to excel in class
Menzie: I am sorry your D couldn't sit up and eat. I know how she feels. Is she in pain when laying down? Has she tried yoga? I know you guys have probably tried everything but I am just curious how her pain changes and what makes it better. Let her know that a lot of people have been thinking of her and wishing for the best.
Take care,
Brandon
Hi Brandon, It is so awesome that you are doing so great in school. You should be very proud of your self and your determination to succeed in school. Good luck on your upcoming finals.
My D's pain doesn't ever really change from its daily level, it just gets worse from standing, walking and of course sitting. If she stretches then it too increases her pain. She can walk, and she can stand long enough to make juicy noodles aka Top Raman. :D She also can swim and walk in the pool and is pain free while in the water. She was doing this everyday until she discovered the Twighlight series. She read all four books in 11days. No swimming for about 2 weeks now. Laying down or reclining is where she hurst the least amount.
I did yoga for several years until 789 days ago at the onset of this monster. She has not tried it. We have tried bits and pieces randomly at our house, but not with a real instructor. I will present this to her, good idea.
Again, I am not sure if your parents ever tell you this, but you are a very strong young man and how lucky they are that you are not a quitter. That you try to continue on with school and your life is testament to your real strength and character. I sincerely hope that you will continue on this path, for surely you can/will make it.
I am holding out hope, but the reality is that maybe I am the one who isn't willing to accept what is. The real reality that is sitting in the recliner. May be exactly what I have. Yet when I try to think about just accepting this, I just can not grasp it in my heart that this is it.
I hope everyone is well and that your pain is not so bad today.
My D's pain doesn't ever really change from its daily level, it just gets worse from standing, walking and of course sitting. If she stretches then it too increases her pain. She can walk, and she can stand long enough to make juicy noodles aka Top Raman. :D She also can swim and walk in the pool and is pain free while in the water. She was doing this everyday until she discovered the Twighlight series. She read all four books in 11days. No swimming for about 2 weeks now. Laying down or reclining is where she hurst the least amount.
I did yoga for several years until 789 days ago at the onset of this monster. She has not tried it. We have tried bits and pieces randomly at our house, but not with a real instructor. I will present this to her, good idea.
Again, I am not sure if your parents ever tell you this, but you are a very strong young man and how lucky they are that you are not a quitter. That you try to continue on with school and your life is testament to your real strength and character. I sincerely hope that you will continue on this path, for surely you can/will make it.
I am holding out hope, but the reality is that maybe I am the one who isn't willing to accept what is. The real reality that is sitting in the recliner. May be exactly what I have. Yet when I try to think about just accepting this, I just can not grasp it in my heart that this is it.
I hope everyone is well and that your pain is not so bad today.
Menzie: There has to be something...Don't give up hope. I am not going to either. It is hard...I have been working out in my adapted physical activity class for 10 weeks now with my sciatic pain only getting worse. I have been getting sharp pain in the bottom of my left foot, left and right knees and in the left hip. Does anyone else get sharp pain (not sciatica) at random times. Sometimes I am worried I might have some neurological disease...
Is there anyway your D can take some classes online? If she is in to computer science there are lots of jobs that can be done on a computer.
I have been curious lately why doctors don't do an MRI neurography scan of the whole leg that is being affected with sciatic pain. If my sciatic nerve is impinged at the calf, then it should produce pain up and down the whole leg. I am going to ask Dr. Filler this next time. My girlfriend has been keeping me motivated. I owe so many of my accomplishments to her.
Thanks for your support...I hope everyone is doing well.
Is there anyway your D can take some classes online? If she is in to computer science there are lots of jobs that can be done on a computer.
I have been curious lately why doctors don't do an MRI neurography scan of the whole leg that is being affected with sciatic pain. If my sciatic nerve is impinged at the calf, then it should produce pain up and down the whole leg. I am going to ask Dr. Filler this next time. My girlfriend has been keeping me motivated. I owe so many of my accomplishments to her.
Thanks for your support...I hope everyone is doing well.
Just check for messages and WOW the forum's beenbusy.
Brandon - Great news about those A's. You've deserved a good long Christmas/New Year holiday. You certainly know how to keep up your resourcefulness and wish you well.
Nick - how's the pain going? I have always been on one medicine, then had to change to another along my path of redemption - sometimes our bodies just get used to meds. Have you tried the Fentanyl yet?
Leesa - great to hear you're still making progress.
Shirley - keep to the 15 mins, like Leesa says and be a good girl. Christmas is always a stressful time, especially with youngsters around. Try not to take on too much (easier said than done?!)
Menzie - I hadn't sat at a table for a meal properly in years either, so somewhere/someone out there must be able to help. Iknow you won't give up because you're made of the good stuff.
Progress is good with myself but went the the swimming pool at 7 weeks post op. Not a good idea. It took 3 hours door to door and I was only in the water for about 15 mins. Couldn't get dried properly + it was a freezing day. Not worth the trouble, so will just stick to as much walking as possible, on the flat and slight gradients to get those glutes working properly. I did manage to see Mamma Mia at the cinema on Saturday. Hadn't been to a movie in 7 years!
Take care everyone. Jo
Brandon - Great news about those A's. You've deserved a good long Christmas/New Year holiday. You certainly know how to keep up your resourcefulness and wish you well.
Nick - how's the pain going? I have always been on one medicine, then had to change to another along my path of redemption - sometimes our bodies just get used to meds. Have you tried the Fentanyl yet?
Leesa - great to hear you're still making progress.
Shirley - keep to the 15 mins, like Leesa says and be a good girl. Christmas is always a stressful time, especially with youngsters around. Try not to take on too much (easier said than done?!)
Menzie - I hadn't sat at a table for a meal properly in years either, so somewhere/someone out there must be able to help. Iknow you won't give up because you're made of the good stuff.
Progress is good with myself but went the the swimming pool at 7 weeks post op. Not a good idea. It took 3 hours door to door and I was only in the water for about 15 mins. Couldn't get dried properly + it was a freezing day. Not worth the trouble, so will just stick to as much walking as possible, on the flat and slight gradients to get those glutes working properly. I did manage to see Mamma Mia at the cinema on Saturday. Hadn't been to a movie in 7 years!
Take care everyone. Jo
Great to hear from everyone. I'm continuing with the prolo, and it's hard to say if it's helping. I have a 4th session in a couple of weeks. If I don't feel better after that, that probably means it's not working for me. I've had good days and bad days, wearing a Fentanyl patch for a few days, then getting off of it, then back on it. It seems to help for the first day or two, then the pain comes back. Surgery still scheduled for jan. 13. I hope I don't have to go through with it, but que sera sera. How is everyone who had the surgery doing?
-nick
-nick
Hi everyone. I have been busy getting Christmas presents off to family in Vancouver. Finally got things ready but can't leave home because I am expecting a delivery.
Brandon, sounds like you have worked very hard and deserve those great marks. I hope you will get a good break over the holidays. How is the pain? Are you still at just 15% better?
Nick, hope the prolo works so you don't have to have surgery but at least the option is there. Are you going on your vacation that you had planned? You asked about how we are doing who have had surgery.
I am definitely better but not 100% My leg pain is virtually gone. My right leg does still feel different but not what I would call pain, just different. My doctor told me it may always feel that way because of the nerves being affected for so long. I still have pain in the butt which is worsened by lifting, going up steps, walking more than I should. I haven't been taking steady walks because I have been out doing Christmas shopping for my grandchildren and am walking lots then. Besides it is -15 celcius here which is about 0 and with the windchill, much colder, so not much fun to walk in. But once I'm not so busy I will try again. So I guess the fact that I can be out shopping for 2-3 hours says lots. Mind you, I am sore and have to get off my feet after being out that long but I coudn't have done that a month ago.
My TENS disguises my pain lots so sometimes I would probably rate lmy pain better than it is and I wear my TENS still. I can't give this a percentage like Brandon but I wouuld definitely say the direction is toward the positive still with some good days and some less good days.
Hello to Jo and I am glad you were able to sit through a movie. GREAT!! Just stay away form the pool for awhile. Pools have never been my favorite place to exercise.
Leesa is our model even though she is still having some tailbone pain noone seems to know why.
Menzie, I hope you have the best Christmas possible even though your D is still not better. Sometimes Christmas can be a hard time when we have to remember better times.
OK gotta go. Bye for now.
Shirley
Brandon, sounds like you have worked very hard and deserve those great marks. I hope you will get a good break over the holidays. How is the pain? Are you still at just 15% better?
Nick, hope the prolo works so you don't have to have surgery but at least the option is there. Are you going on your vacation that you had planned? You asked about how we are doing who have had surgery.
I am definitely better but not 100% My leg pain is virtually gone. My right leg does still feel different but not what I would call pain, just different. My doctor told me it may always feel that way because of the nerves being affected for so long. I still have pain in the butt which is worsened by lifting, going up steps, walking more than I should. I haven't been taking steady walks because I have been out doing Christmas shopping for my grandchildren and am walking lots then. Besides it is -15 celcius here which is about 0 and with the windchill, much colder, so not much fun to walk in. But once I'm not so busy I will try again. So I guess the fact that I can be out shopping for 2-3 hours says lots. Mind you, I am sore and have to get off my feet after being out that long but I coudn't have done that a month ago.
My TENS disguises my pain lots so sometimes I would probably rate lmy pain better than it is and I wear my TENS still. I can't give this a percentage like Brandon but I wouuld definitely say the direction is toward the positive still with some good days and some less good days.
Hello to Jo and I am glad you were able to sit through a movie. GREAT!! Just stay away form the pool for awhile. Pools have never been my favorite place to exercise.
Leesa is our model even though she is still having some tailbone pain noone seems to know why.
Menzie, I hope you have the best Christmas possible even though your D is still not better. Sometimes Christmas can be a hard time when we have to remember better times.
OK gotta go. Bye for now.
Shirley
Hello,
Shirley: I am so happy you are better and are able to go shopping. It must be a relief not to have leg pain anymore. I have tried the TENS unit and have one but the leads are always falling off. Any ideas on how to keep them on when I put them in multiple locations around my butt and hamstring?
Lately I have been experiencing sharp pain in my knees, feet and soreness in my lower back. Does anyone know what might be causing it? I have had sharp pain in my knees before but not as often as the past few weeks. I am so dumbfounded because I am not doing anything to get sore and have these problems. I actually spend a whole term in school working out and my pain got slightly worse. I did yoga like exercises, stretching, abdominal and back exercises. Do you guys think I should see a podiatrist? Even though my sciatic pain is much worse, it still isn't fun to have extra pain.
With Christmas coming I can only think about how much I want to help people who are less fortunate. I wish I could volunteer at the soup kitchen but my pain makes it a nightmare to stand up for very long. I hope everyone is able to help someone in need. Does anyone have ideas on how I could get involved while laying down? Are there any volunteer positions using a phone or computer?
Take care,
Brandon
Shirley: I am so happy you are better and are able to go shopping. It must be a relief not to have leg pain anymore. I have tried the TENS unit and have one but the leads are always falling off. Any ideas on how to keep them on when I put them in multiple locations around my butt and hamstring?
Lately I have been experiencing sharp pain in my knees, feet and soreness in my lower back. Does anyone know what might be causing it? I have had sharp pain in my knees before but not as often as the past few weeks. I am so dumbfounded because I am not doing anything to get sore and have these problems. I actually spend a whole term in school working out and my pain got slightly worse. I did yoga like exercises, stretching, abdominal and back exercises. Do you guys think I should see a podiatrist? Even though my sciatic pain is much worse, it still isn't fun to have extra pain.
With Christmas coming I can only think about how much I want to help people who are less fortunate. I wish I could volunteer at the soup kitchen but my pain makes it a nightmare to stand up for very long. I hope everyone is able to help someone in need. Does anyone have ideas on how I could get involved while laying down? Are there any volunteer positions using a phone or computer?
Take care,
Brandon
Brandon - you had surgery right? If so the painful knees, feet & back MIGHT be a by product of the surgery because there is now an imbalance in how other muscles are forced to work now.
It seems like most surgeons do not bother with PT after this type of surgery, which I think is a failing. If you could find a PT that specializes in myofascial release type manual therapy, I suggest you get evaluated. And have any muscle imbalances treated. That may or may not include custom orthotics, which PTs can order for you.
Do you have Morton's foot? (Second toe is longer than big toe). If so, you might consider orthotics specially designed for Morton's foot.
Hope this helps. Happy Holidays to all. Have some extra "holiday cheer" to knock down the pain. Mary :P
It seems like most surgeons do not bother with PT after this type of surgery, which I think is a failing. If you could find a PT that specializes in myofascial release type manual therapy, I suggest you get evaluated. And have any muscle imbalances treated. That may or may not include custom orthotics, which PTs can order for you.
Do you have Morton's foot? (Second toe is longer than big toe). If so, you might consider orthotics specially designed for Morton's foot.
Hope this helps. Happy Holidays to all. Have some extra "holiday cheer" to knock down the pain. Mary :P
Brandon, sorry it took me so long to answer. The way I keep my electrodes on when I put them on lmy leg is I put adhesive tape across the electrode and that holds them in place. Also you lcan buy skin prep which is something you rub on the skin to protect it from getting a rash but it also helps the electrodes to adhere to your skin better. Sorry you are still having so much trouble. Hope you can take kit a bit easier during the holiday break.
I have been doing quite a bit and although I still have pain it is getting better all lthe time. I went out to dinner for the first time Friday night but leaning forward in my chair pulled on the area where I had surgery and I was really sore when I got home. I am still quite sore around the area where he cut the muscle and around the nerves but nothing like I was 6 weeks ago.
I am planning to start physio in the New Year. All of gluteals are very weak so it will be lots of work to get them strengthened.
So I hope everyone hqas a good holiday. Keep us informed about your surgery Nick and I hope Dave lets me know about the Mayo Clinic.
Bye for now.
Shirley
I have been doing quite a bit and although I still have pain it is getting better all lthe time. I went out to dinner for the first time Friday night but leaning forward in my chair pulled on the area where I had surgery and I was really sore when I got home. I am still quite sore around the area where he cut the muscle and around the nerves but nothing like I was 6 weeks ago.
I am planning to start physio in the New Year. All of gluteals are very weak so it will be lots of work to get them strengthened.
So I hope everyone hqas a good holiday. Keep us informed about your surgery Nick and I hope Dave lets me know about the Mayo Clinic.
Bye for now.
Shirley
Brandon, I too am sorry you are having so much pain. Can you shave the areas where you want the electrodes to stay. As I have a daughter, she is probably less furry, lol :D we did not have an issue with them staying on. Shirley's idea of taping was good information.
Shirley, great to hear you were able to go to dinner. I will kiss the floor the day my D can go to a real dinner out somewhere. Well not the floor, but maybe her chair. :D I having nothing good to really share, but that we both still breathe. She has been learing to swallow pills larger than her oxycontin.
Jo, because my D is able to swallow pills slightly I can now move on the the info you passed on to me. I was kind of in a stand still, because if she could not swallow the pills, the foot work would be for nothing. I truly hope you are doing ok, and I do thank you for being a part of this site.
Everyone here is so important to the future people of this site. Also to share the knowledge that you all have gained is so helpful to people. I appreciate you all, and sincerely hope that you all gain the painfree outcome that you all deserve. As I am not the one physically suffering, I can only imagine because my suffering is in watching my D suffer as you all do. I die everyday that I watch her suffer. A darkness has descended upon my once happy life. Hopefully it will go away, today is the 800th day that my daughter has suffered. BUT, I will say that her PS surgery was 264 days ago, 36 weeks ago, and the surgery did REALLY did help her leg pain. We just need to get her to sit.
Talk to you soon. Menzie