Hi, Just stopping by. Unfortunately my pain has gotten worse. It has always been the lower back and hips. Now with the back, I have pain in both legs and both feet. By 6pm I feel like I can't walk. I use the cane all the time. I use to never use it in the house though. Only used when I went outside for that extra balance and security. Now I need inside. A few times I went off balance. Without the cane I would have hit the floor. Would not have been pretty. LOL I complain to the Dr. and he just says it is from my back. A few years ago I had the EMG which showed Radiculp... something. I think that means nerve pain. Makes sense. It is just really bad. I'm still on the Fentanyl Patch 50mg and Percocet 10-20mg every 4 -6 hrs. The Dr. bumped it up to 2 but I usually just take 1 pill. There are days the pain is pretty unbearable so I will take two. At least now I dont need a refill for 2 weeks give or take. I still do Aqua therapy twice a week but it doesn't help. It just keeps me moving instead of being a couch potato.
So, I don't know if something worse is going on with my legs or not. Maybe the Dr. will do a test. I love my Dr. He just is not that aggressive. That can be good sometimes. My last Dr. was agressive and I was sent for every test under the sun.
At 45 years old it is hard to imagine being in this much pain or more for the rest of my life. Will I even be able to walk? It's kind of scary.
Oh well............
Would like to wish everyone a Happy Holiday which ever you observe. Wishing a happy and healthy New Year.....
At 45 years old it is hard to imagine being in this much pain or more for the rest of my life. Will I even be able to walk? It's kind of scary.
Oh well............
Would like to wish everyone a Happy Holiday which ever you observe. Wishing a happy and healthy New Year.....
Dear Hessie, I'm really sory you're still suffering from chronic pain. It's a never ending story, huh?. I'm 38 and it really looks like I'm gonna suffer from chronic pain till the rest of my life. It's not fun at all.
As for your walking, you know, I just don't know what to say. Honestly wish I could help you. You said your last doctor has sent to to any test under the sun so I don't know. I'm still walking. I don't need a cane but perhaps someone else here in knows more than me about walking. You must be suffering tremendously, I'm so sory.
I'm sending you my sympathy and happy new year to you. try be positive perhaps one day somebody will invent something to help us. I remember one of your posting you had that wish.
hessie:
Did you ever check into the pain pump/morphine pump like I suggested? If your doctor does not implant them then I am sure that he knows of doctors that do in your area. It just might be your "miracle" to be able to function fairly well and have some quality of life. You have to be your best advocate and I would flat out tell your pain management doctor that you are interested in the pain pump and see what he says.
Please keep in mind that you can go up quite a bit on the fentanyl patch. I have heard of people being on doses of up to 300mcg but it all depends on if you can tolerate the side effects.
The best thing about the pain pump is that the side effects are dramatically reduced because the medication is directly pumped into your spine and it goes straight to the receptors in your brain. I have chatted with people that were as limited as you are and then after getting the pain pump and getting the right dosage/medication, they are doing things they had not done in years. You really owe it to yourself to do some research about it. If you have any other questions about it feel free to ask me.
hessie:
Did you ever check into the pain pump/morphine pump like I suggested? If your doctor does not implant them then I am sure that he knows of doctors that do in your area. It just might be your "miracle" to be able to function fairly well and have some quality of life. You have to be your best advocate and I would flat out tell your pain management doctor that you are interested in the pain pump and see what he says.
Please keep in mind that you can go up quite a bit on the fentanyl patch. I have heard of people being on doses of up to 300mcg but it all depends on if you can tolerate the side effects.
The best thing about the pain pump is that the side effects are dramatically reduced because the medication is directly pumped into your spine and it goes straight to the receptors in your brain. I have chatted with people that were as limited as you are and then after getting the pain pump and getting the right dosage/medication, they are doing things they had not done in years. You really owe it to yourself to do some research about it. If you have any other questions about it feel free to ask me.
brian
Brian, the Dr. kind of skirted over the issue of the pain pump. He didn't think I was there yet. I don't think he gets how bad the leg pain really is. I go back to him this Tuesday so will see how it goes. He said there is still room with the pain meds. I take meds for Narcolepsy so I can stay awake so can't take too much more pain meds. I even tried the new pain med Nyucenta (sp?). Didn't do a thing. He isn't a pain management Dr. He only treats a few patients for pain. I have been through the pain management twice but all they do is shots and meds.
Brian, the Dr. kind of skirted over the issue of the pain pump. He didn't think I was there yet. I don't think he gets how bad the leg pain really is. I go back to him this Tuesday so will see how it goes. He said there is still room with the pain meds. I take meds for Narcolepsy so I can stay awake so can't take too much more pain meds. I even tried the new pain med Nyucenta (sp?). Didn't do a thing. He isn't a pain management Dr. He only treats a few patients for pain. I have been through the pain management twice but all they do is shots and meds.
I will research it though.
Thanks for the info.
hessie... besides the pain pump you may want to inquire about other surgical alternatives like neural stimulator options... using electrical pulses to disrupt the pain impulses in your nerves... just a thought.
Hessie i hear you and can relate, however i know mine is progressive combined with as and the back stuff. I find i use the cane more in the house now as well. But i also cheat i have tile floors and a pc chair that rolls i use that much of the time now.
We replaced knobs on the sinks the doors the cabinets. Most are lever door knobs and sink knobs the levers help since my hands do not turn knobs well. When its really bad i will either use my pc chair to roll around or just be in bed....
With changes in weather cold spells or storms it is really noticeable.
Just wanted to say hi no you are not alone and thinking good thoughts for all of us that deal with this day in and day out .....
By the by we even have budgeted a cab fare now. Do very little out there. Very grateful for online shopping. We did have pea pod a grocery delivery service but they left the area, i wish another one would come back !
Hessie...sorry that things are not going well for you....does the Dr. say what IS wrong with you?? All of this pain...it has to be coming from something?? Can they treat one area at a time...to fix things I mean...I know that you have several things going on...but just trying to get one fixed would help. You poor thing...this has been going on for years now...you and I were in the same boat for a long time...please don't give up...keep speaking with your Drs...see what they say....you never know...look at me...a new surgery came up just when I really really needed it...so please keep trying...I am praying for you...and sending you a little hug...take care.
Hi Hessie, I am so sorry you are hurting still. I too am in the never ending cycle of chronic pain and we have tried everything. Someone mentioned the stimulator and if I remember right you have had several surgeries. If this is correct, my biggest advice is to make sure that you let a neurosurgeon implant your pain pump/stimulator.
Don't know if you heard but I had a stimulator implanted by an anethisologist and unfortunately I am permanently disabled in ways that I never dreamed I would be. T
The reason why you want a neurosurgeon versus anethesiologist is that they are being implanted near the spinal cord/nerve roots. Neurosurgeons work in these areas everyday and he can surgically implant the leads versus threading leads thru the spinal canal. When mine was implanted they ran into scar tissue which inadvertently caused the leads to bounce and hit my spinal cord. I now have a spinal cord injury. Individuals who have had multiple surgeries will have scar tissue and it is not worth the risk of permanent damage so please see a neurosurgeon if you are considering either of these procedures.
If you want any further info, I am here please don't hesistate to ask.
The reason why you want a neurosurgeon versus anethesiologist is that they are being implanted near the spinal cord/nerve roots. Neurosurgeons work in these areas everyday and he can surgically implant the leads versus threading leads thru the spinal canal. When mine was implanted they ran into scar tissue which inadvertently caused the leads to bounce and hit my spinal cord. I now have a spinal cord injury. Individuals who have had multiple surgeries will have scar tissue and it is not worth the risk of permanent damage so please see a neurosurgeon if you are considering either of these procedures.
Take care and may you soon find some relief.
Thanks so much for this important information. I've never heard about that before. I don't know what to say but that I'm really sory.
How is that affecting you if I may ask? I hope you can and able to sue them.
I remember one of your posting you had that wish.
