smooshes
08-18-2005, 08:13 PM
On January 8th of this year, I developed accute Rhabdomyolis. I spent 8 weeks in the hospital. I am a 42 yr old female. As a result of over 4 weeks of my legs swelling to twice there size, I have periphial neuropathy and have permanent damage to the periphial nerve in the left leg, lesser symptoms in the right. I have pain so excuciating that at times all I can do is lay in bed and cry. I spend about 8 hours a day in ice packs, am being treated by Pain Management, a Neurologist and a Physiologist. I have made it out of a wheel chair for walks with a walker of no more than 10 to 15 feet. Otherwise, I do require a wheelchair. I have to spend all of my day laying down as sitting is agonizing for more than 15 minutes at a time. I am fully disabled as a result of this disease. (Rhabdo and subsequent neuropathy and paralysis) As a last stitch effort, and also to try and get some emotional support, I thought I would try this message board. I have been told there would only be maintainance by meds, I take a strong opiate med along with 2400 mg of Neurontin per day. So far, by taking the medications, my quality of life has improved. I am looking for information on long term use of the medications, (Methadone) and also support from others in chronic pain. There are times even with the meds I am still in agony. That confuses me. I appreciate any input anyone may have and am glad to have found this website.
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kay1946
08-19-2005, 02:36 AM
Hi Smooshes,
My name is Kay and I have had 3 spinal surgeries. In 89 an L4-5 Laminectomy and Diskectomy with IBF, 91 - 3 level cervical fusion C4-5, 5-6, and 6-7. 2003 - found to have a psuedoarthrosis at C6-7 and rupture at C3-4. I then had a 4 level fusion with instrumentation.
My Range of motion is serverely limited. I can no longer drive due to this.
I also have right shoulder and arm pain due to nerve damage. I also have a re-rupture at L4-5 and DDD at L5-S1. Surgeon wants to do another surgery with instrumentation. I am putting off as long as possible. I also have radiculopathy both cervical and lumbar. I too have not worked since 2002.
About a year ago my Pain Management doctor put me on methadone. I had been taking hydrocodone and flexeril for over 2 years and was concerned about possible liver damage. I have been told (and also found in the research that I did) that methadone will not damage the liver. It does not do away with my pain but makes it so I can at least do a few things to enjoy life. If I combine it with flexeril it makes me fall asleep so I have to stagger my meds.
I hope this med works for you too. I love it because it doesn't give you the buzz that you would get from hydrocodone. I now use that for breakthrough pain if necessary but only 2 a day.
Good luck and keep us posted as to your progress.
Kay
My name is Kay and I have had 3 spinal surgeries. In 89 an L4-5 Laminectomy and Diskectomy with IBF, 91 - 3 level cervical fusion C4-5, 5-6, and 6-7. 2003 - found to have a psuedoarthrosis at C6-7 and rupture at C3-4. I then had a 4 level fusion with instrumentation.
My Range of motion is serverely limited. I can no longer drive due to this.
I also have right shoulder and arm pain due to nerve damage. I also have a re-rupture at L4-5 and DDD at L5-S1. Surgeon wants to do another surgery with instrumentation. I am putting off as long as possible. I also have radiculopathy both cervical and lumbar. I too have not worked since 2002.
About a year ago my Pain Management doctor put me on methadone. I had been taking hydrocodone and flexeril for over 2 years and was concerned about possible liver damage. I have been told (and also found in the research that I did) that methadone will not damage the liver. It does not do away with my pain but makes it so I can at least do a few things to enjoy life. If I combine it with flexeril it makes me fall asleep so I have to stagger my meds.
I hope this med works for you too. I love it because it doesn't give you the buzz that you would get from hydrocodone. I now use that for breakthrough pain if necessary but only 2 a day.
Good luck and keep us posted as to your progress.
Kay
Fancylady
08-19-2005, 08:16 AM
Hi Smooshes, :wave:
I have had many spinal problems over a peroid of 14 yrs. I first had a severe
bulge at level 4,5. This fell into my spinal cord, so I had surgery. Next I needed 3 fusions, with hardware, which was very painful. I had problems with the hardware, so it was remove in 1 year, plus another fusion and I was full of scar tissue. In 3 yrs. I needed scar tissue removed plus another fusion.
Now after another 3 yrs. I'm in severe leg pain, which is coming from a nerve
at L2,L3 level. My ortho doc is willing to do more surgery, but really doesn't want to put me threw it. After much thought I went to a Spine surgeon & he
calls this "Failed Back Syndrome". He recomends Spinal Cord Stimulator. I've
had the trial one and done real good with it. I'm now waiting for approval from my ins. It seems to take forever. I can't walk very far. My leg goes numb and the pain starts up the inside of my leg to groin. If I sit the pain goes away, but as soon as I get up the pain gets so severe I don't know what to do. I have taken all kinds of pain meds thru all this and I'm on Hydrocodone at the present time. No pain medicine helps this pain and I don't sleep well either. My advice is to hang in there. You might have to find another Dr. Each one that I've seen has helped me in some way. Good Luck &
keep us posted. Billie :angel:
I have had many spinal problems over a peroid of 14 yrs. I first had a severe
bulge at level 4,5. This fell into my spinal cord, so I had surgery. Next I needed 3 fusions, with hardware, which was very painful. I had problems with the hardware, so it was remove in 1 year, plus another fusion and I was full of scar tissue. In 3 yrs. I needed scar tissue removed plus another fusion.
Now after another 3 yrs. I'm in severe leg pain, which is coming from a nerve
at L2,L3 level. My ortho doc is willing to do more surgery, but really doesn't want to put me threw it. After much thought I went to a Spine surgeon & he
calls this "Failed Back Syndrome". He recomends Spinal Cord Stimulator. I've
had the trial one and done real good with it. I'm now waiting for approval from my ins. It seems to take forever. I can't walk very far. My leg goes numb and the pain starts up the inside of my leg to groin. If I sit the pain goes away, but as soon as I get up the pain gets so severe I don't know what to do. I have taken all kinds of pain meds thru all this and I'm on Hydrocodone at the present time. No pain medicine helps this pain and I don't sleep well either. My advice is to hang in there. You might have to find another Dr. Each one that I've seen has helped me in some way. Good Luck &
keep us posted. Billie :angel:
smooshes
08-21-2005, 10:48 AM
Billie:
I wanted to post a reply, although, I am so "green" at message boards. You have been thru so much, I am amazed at your willingness to keep trying. It sounds like sciatic injury, I only know about this as my Grandmother suffers so bad from it she is almost unable to function. It was interesting how you mentioned that sitting is relief for you, standing agonizing. I am the opposite with the peripheral nerve damage. I cannot sit for any length of time, I can only lay down. I go to my doctors this week, so maybe there will be some type of treatment they have decided on. I also wanted to share with you that in addition to the rhabdomyolisis, which came six months after, I also had surgery. It was a cervical anterior with fusion, and a plate and 2 screws are holding my spine together at that level. I suffer also from that surgery as there was nerve damage, and had a cervical block 2 days before I was stricken with the rhabdo, although, they swear it had nothing to do with it. I too am on opiates for pain, but mine is so much stronger then the hydrocodone, and, has definitely improved my quality of life, although, I still cannot walk far and only with my walker. I will post after I go to the doctors this week and let you all know. Again, thank you for the emotional support, it helps so much. :)
I wanted to post a reply, although, I am so "green" at message boards. You have been thru so much, I am amazed at your willingness to keep trying. It sounds like sciatic injury, I only know about this as my Grandmother suffers so bad from it she is almost unable to function. It was interesting how you mentioned that sitting is relief for you, standing agonizing. I am the opposite with the peripheral nerve damage. I cannot sit for any length of time, I can only lay down. I go to my doctors this week, so maybe there will be some type of treatment they have decided on. I also wanted to share with you that in addition to the rhabdomyolisis, which came six months after, I also had surgery. It was a cervical anterior with fusion, and a plate and 2 screws are holding my spine together at that level. I suffer also from that surgery as there was nerve damage, and had a cervical block 2 days before I was stricken with the rhabdo, although, they swear it had nothing to do with it. I too am on opiates for pain, but mine is so much stronger then the hydrocodone, and, has definitely improved my quality of life, although, I still cannot walk far and only with my walker. I will post after I go to the doctors this week and let you all know. Again, thank you for the emotional support, it helps so much. :)
painterinlegoff
08-21-2005, 10:58 AM
Hi, my name is greg, i been suffering cloe now to 7 yrs, and finally now found a doctor with some sense about him, he has discovered my L-3 -S-1 the discs are being somehow destroyed . i dont know lol im not a doc...but all this after 6 1/2 yrs of other doctors telling me i shouldnt be hurting there is nothing wrong with me blah blah blah blah blah........you are in my prayers :wave:
smooshes
08-21-2005, 06:55 PM
Hi Greg,
You have been suffering a longgggg time. My heart goes out to you, I know what it is like to be told there is nothing wrong with you. I dont hear it from doctors, but since I am disabled, I just heard, coincidentally, about 1 hour ago from my caretaker, that I am lucky I have the "luxury" to not have to work or get up. I was crushed. I cant get up. God knows I would give my right eye to be able to get up. I think this abuse from those we trust to "believe" us when we share, and also in my case the three physicians in charge of my care that validate my condition, yet I am being told at my own home to "get up" and rise. I truly appreciate your prayers, I will also pray for you, and hope that we are somehow able to rise above this terrible disability we have been stricken with.
You have been suffering a longgggg time. My heart goes out to you, I know what it is like to be told there is nothing wrong with you. I dont hear it from doctors, but since I am disabled, I just heard, coincidentally, about 1 hour ago from my caretaker, that I am lucky I have the "luxury" to not have to work or get up. I was crushed. I cant get up. God knows I would give my right eye to be able to get up. I think this abuse from those we trust to "believe" us when we share, and also in my case the three physicians in charge of my care that validate my condition, yet I am being told at my own home to "get up" and rise. I truly appreciate your prayers, I will also pray for you, and hope that we are somehow able to rise above this terrible disability we have been stricken with.