Thank you for the kind remarks. It's hard to be your own advocate when messages just don't get acknowledged and you are unable to find a receptive, proactive doctor.
I've been in debiliting pain in my right leg from my hip to my foot. for about 4 months. I might need an si joint fusion and surgery on my L5- S1 spine.
I've been in debiliting pain in my right leg from my hip to my foot. for about 4 months. I might need an si joint fusion and surgery on my L5- S1 spine.
Hi, @maddiemae. I have been suffering with this type of pain for over 7 years and know how difficult this can be. I have congenital cervical and lumbar spinal stenosis, especially at c5c6 and l4l5 with radiculopathy. I am not able to stand, walk, lift, carry much for long. Sitting too long isn’t good either so need to make small, frequent movements to adjust position. Lidocaine pain patches have helped some and I need to lie down to rest when pain level is high and nerves get irritated. It seems warmer temperatures affect my nerve pain and not sure why so I try cooler showers and room temperatures. I have also had some temporary relief for 3+ months with spine injections (combination of lidocaine and prednisone medications). Duloxetine/Cymbalta has helped some with nerve/arthritis pain and depression that comes with chronic pain. Also have had some relief with Alpha Lipoic Acid and Acetyl L Carnitine supplements. I had ACDF surgery on c5c6 which helped some and may need l4l5 surgery soon (numbness in hips, buttocks and feet on both sides and pain that radiates down on my right hip to foot). Wishing you the best!!! You are not alone in your suffering.
Hi, @maddiemae. I have been suffering with this type of pain for over 7 years and know how difficult this can be. I have congenital cervical and lumbar spinal stenosis, especially at c5c6 and l4l5 with radiculopathy. I am not able to stand, walk, lift, carry much for long. Sitting too long isn’t good either so need to make small, frequent movements to adjust position. Lidocaine pain patches have helped some and I need to lie down to rest when pain level is high and nerves get irritated. It seems warmer temperatures affect my nerve pain and not sure why so I try cooler showers and room temperatures. I have also had some temporary relief for 3+ months with spine injections (combination of lidocaine and prednisone medications). Duloxetine/Cymbalta has helped some with nerve/arthritis pain and depression that comes with chronic pain. Also have had some relief with Alpha Lipoic Acid and Acetyl L Carnitine supplements. I had ACDF surgery on c5c6 which helped some and may need l4l5 surgery soon (numbness in hips, buttocks and feet on both sides and pain that radiates down on my right hip to foot). Wishing you the best!!! You are not alone in your suffering.
Hi. Thank you for for your kind and informative message and I am so sorry for your long-lasting pain.
I was first diagnosed with an SI joint issue and after that an L5 S1 problem. After x-rays and a recent mri I was diagnosed with spondylolisthesis for which surgery was recommended so I'm on the road to that.
I take 2400 mgs of gabapentin, alpha lipoic acid, duloxetine, lidocaine patches, celebrex. I'll try the other supplements you mentioned. I also have central pain syndrome and dysautonomia. You've been through surgery and with the kind of pain we're suffering it seems that's the only answer. And yes, you described perfectly the inability to walk, stand, sit for very long, and the need to go to bed. Just being up for a short amount of time is exhausting. I feel like I'm missing life. There really is no way to get relief. We suffer chronic pain which causes depression but my doctor said I am on the highest dose of duloxetine I can take.
Hi, @maddiemae. I have been suffering with this type of pain for over 7 years and know how difficult this can be. I have congenital cervical and lumbar spinal stenosis, especially at c5c6 and l4l5 with radiculopathy. I am not able to stand, walk, lift, carry much for long. Sitting too long isn’t good either so need to make small, frequent movements to adjust position. Lidocaine pain patches have helped some and I need to lie down to rest when pain level is high and nerves get irritated. It seems warmer temperatures affect my nerve pain and not sure why so I try cooler showers and room temperatures. I have also had some temporary relief for 3+ months with spine injections (combination of lidocaine and prednisone medications). Duloxetine/Cymbalta has helped some with nerve/arthritis pain and depression that comes with chronic pain. Also have had some relief with Alpha Lipoic Acid and Acetyl L Carnitine supplements. I had ACDF surgery on c5c6 which helped some and may need l4l5 surgery soon (numbness in hips, buttocks and feet on both sides and pain that radiates down on my right hip to foot). Wishing you the best!!! You are not alone in your suffering.
Surgery has been recommended, I see. Let me know how that goes if you choose do go that route.
Do you have pins and needles sensations? Warmer temps ramp that up for me. One of the problems after my surgery is the very real possibility of the pins and lbull do eedles thing. Mine came from my damaged occipital nerves and the pain was in the back of mybneck and all over my scalp. Absolutely horrible. So that is a huge concern.
Surgery has been recommended, I see. Let me know how that goes if you choose do go that route.
Do you have pins and needles sensations? Warmer temps ramp that up for me. One of the problems after my surgery is the very real possibility of the pins and lbull do eedles thing. Mine came from my damaged occipital nerves and the pain was in the back of mybneck and all over my scalp. Absolutely horrible. So that is a huge concern.
Hi, @maddiemae. I had ACDF surgery on c5c6 which helped with difficulty walking and regaining bladder control due to myelopathy spinal cord pressure/damage (if I waited any longer, I could have had permanent loss of bladder control and worsening of my ability to walk). I lost a good amount of muscle strength and conditioning. I was dropping things and losing balance and had upper body pain and weakness. I am so de-conditioned now that small tasks are so hard due to weakness and exhaustion. This is now my life at the age of 54! My body feels like it is 84! I used to love to dance and do yoga but basic movements and walking up stairs are so difficult now (I use the railing to pull me up some days). I just lost my job due to large layoff and I am a single parent of a 14 year son and his sole provider (he has some special needs, too). Losing health insurance scares me and not being healthy makes it hard to find work (very limited physically on what I can do). I get so depressed about my limitations and look at my house getting more cluttered and dirty because I have limited strength and energy it’s so very frustrating (coming from a person who liked to be organized and independent). I am scheduled next week for an updated MRI of my lumbar spine and follow up appointment with my surgeon’s PA to see the status of my l4l5 spinal stenosis and see if anything new is showing up that explains the new numbness in my feet when I walk and numbness in my buttocks when I stand. Injections have helped in the past but so painful when you get them. I’m not sure it is good for the lumbar spine to get many injections over a long period as it might compromise the joint so surgery may provide some longer term relief of pressure on the spinal cord/nerves/nerve roots. I’m lying in bed as I type this…do a little, need to lie down, which is on repeat throughout the day. Can never do what I planned or would like to do/accomplish. My depression and exhaustion makes me give up and not care about the things I used to care so much about. What I find is that others around you don’t really understand or empathize what living with chronic pain/weakness/exhaustion/depression is like. It is like a disability but since you aren’t missing limbs or using assistive devices to walk or get around (yet), they do not “get it” and your invisible disability means you are limited in what you can do and need more help. I feel like I have to beg for help or wear a sign that says that I need help and not to assume I am okay because I am not. I used to be on duloxetine 60mg and bupropion 150mg but went off them to see how I felt off them (was on them so long and had gained weight which doesn’t help chronic pain at all). I realize now I need to go back on the medication but the loss of medical coverage at the end of October makes me afraid to go back on them only to not be able to afford them so I can keep taking them (once on them, need to taper off really slowly over time). With my depression and chronic pain where it is now and loss of job, I don’t want to become suicidal and coming off those medications may make things worse. I have no family and feel so alone in my personal struggles that some days, I don’t feel like I can go on. I’m not sure how I can make things any better. I am usually a fighter and one to persevere (raised in a family of abuse and neglect and always for the underdog) but this has really beaten me into the ground where I literally can’t get up.
Surgery has been recommended, I see. Let me know how that goes if you choose do go that route.
Do you have pins and needles sensations? Warmer temps ramp that up for me. One of the problems after my surgery is the very real possibility of the pins and lbull do eedles thing. Mine came from my damaged occipital nerves and the pain was in the back of mybneck and all over my scalp. Absolutely horrible. So that is a huge concern.
Yes, warmer temperatures and higher humidity seems to make my nerve pain, pins and needles, burning, and tingling worse. We have had a heat wave here and I need to limit time outdoors in the sun and stay in A/C. Cooler showers help. Swelling seems to put more pressure on nerves.
Hi, @maddiemae. I had ACDF surgery on c5c6 which helped with difficulty walking and regaining bladder control due to myelopathy spinal cord pressure/damage (if I waited any longer, I could have had permanent loss of bladder control and worsening of my ability to walk). I lost a good amount of muscle strength and conditioning. I was dropping things and losing balance and had upper body pain and weakness. I am so de-conditioned now that small tasks are so hard due to weakness and exhaustion. This is now my life at the age of 54! My body feels like it is 84! I used to love to dance and do yoga but basic movements and walking up stairs are so difficult now (I use the railing to pull me up some days). I just lost my job due to large layoff and I am a single parent of a 14 year son and his sole provider (he has some special needs, too). Losing health insurance scares me and not being healthy makes it hard to find work (very limited physically on what I can do). I get so depressed about my limitations and look at my house getting more cluttered and dirty because I have limited strength and energy it’s so very frustrating (coming from a person who liked to be organized and independent). I am scheduled next week for an updated MRI of my lumbar spine and follow up appointment with my surgeon’s PA to see the status of my l4l5 spinal stenosis and see if anything new is showing up that explains the new numbness in my feet when I walk and numbness in my buttocks when I stand. Injections have helped in the past but so painful when you get them. I’m not sure it is good for the lumbar spine to get many injections over a long period as it might compromise the joint so surgery may provide some longer term relief of pressure on the spinal cord/nerves/nerve roots. I’m lying in bed as I type this…do a little, need to lie down, which is on repeat throughout the day. Can never do what I planned or would like to do/accomplish. My depression and exhaustion makes me give up and not care about the things I used to care so much about. What I find is that others around you don’t really understand or empathize what living with chronic pain/weakness/exhaustion/depression is like. It is like a disability but since you aren’t missing limbs or using assistive devices to walk or get around (yet), they do not “get it” and your invisible disability means you are limited in what you can do and need more help. I feel like I have to beg for help or wear a sign that says that I need help and not to assume I am okay because I am not. I used to be on duloxetine 60mg and bupropion 150mg but went off them to see how I felt off them (was on them so long and had gained weight which doesn’t help chronic pain at all). I realize now I need to go back on the medication but the loss of medical coverage at the end of October makes me afraid to go back on them only to not be able to afford them so I can keep taking them (once on them, need to taper off really slowly over time). With my depression and chronic pain where it is now and loss of job, I don’t want to become suicidal and coming off those medications may make things worse. I have no family and feel so alone in my personal struggles that some days, I don’t feel like I can go on. I’m not sure how I can make things any better. I am usually a fighter and one to persevere (raised in a family of abuse and neglect and always for the underdog) but this has really beaten me into the ground where I literally can’t get up.
I'm so sorry for this situation! It seems you should qualify for some social services and in-home assistance. Have you asked your doctor? Can you apply for disability?
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Thank you for the kind remarks. It's hard to be your own advocate when messages just don't get acknowledged and you are unable to find a receptive, proactive doctor.
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1 ReactionI've been in debiliting pain in my right leg from my hip to my foot. for about 4 months. I might need an si joint fusion and surgery on my L5- S1 spine.
Any information would be appreciated.
Maddiemae
Hi @maddiemae, I moved your discussion and combined it with an existing discussion titled:
- SI joint fusion
https://connect.mayoclinic.org/discussion/si-joint-fusion/
I did this so you could meet @cmeadows09, @fourof5zs and @suzfuse46 who have all discussed SI joint fusions.
@maddiemae, how have you been managing your pain and mobility currently while you consider surgical options?
Hi, @maddiemae. I have been suffering with this type of pain for over 7 years and know how difficult this can be. I have congenital cervical and lumbar spinal stenosis, especially at c5c6 and l4l5 with radiculopathy. I am not able to stand, walk, lift, carry much for long. Sitting too long isn’t good either so need to make small, frequent movements to adjust position. Lidocaine pain patches have helped some and I need to lie down to rest when pain level is high and nerves get irritated. It seems warmer temperatures affect my nerve pain and not sure why so I try cooler showers and room temperatures. I have also had some temporary relief for 3+ months with spine injections (combination of lidocaine and prednisone medications). Duloxetine/Cymbalta has helped some with nerve/arthritis pain and depression that comes with chronic pain. Also have had some relief with Alpha Lipoic Acid and Acetyl L Carnitine supplements. I had ACDF surgery on c5c6 which helped some and may need l4l5 surgery soon (numbness in hips, buttocks and feet on both sides and pain that radiates down on my right hip to foot). Wishing you the best!!! You are not alone in your suffering.
-
Like -
Helpful -
Hug
1 ReactionHi. Thank you for for your kind and informative message and I am so sorry for your long-lasting pain.
I was first diagnosed with an SI joint issue and after that an L5 S1 problem. After x-rays and a recent mri I was diagnosed with spondylolisthesis for which surgery was recommended so I'm on the road to that.
I take 2400 mgs of gabapentin, alpha lipoic acid, duloxetine, lidocaine patches, celebrex. I'll try the other supplements you mentioned. I also have central pain syndrome and dysautonomia. You've been through surgery and with the kind of pain we're suffering it seems that's the only answer. And yes, you described perfectly the inability to walk, stand, sit for very long, and the need to go to bed. Just being up for a short amount of time is exhausting. I feel like I'm missing life. There really is no way to get relief. We suffer chronic pain which causes depression but my doctor said I am on the highest dose of duloxetine I can take.
My thoughts are with you.
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2 ReactionsI'm sorry. I misread and thought you had been through surgery for your many issues. Has it been recommended?
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1 ReactionSurgery has been recommended, I see. Let me know how that goes if you choose do go that route.
Do you have pins and needles sensations? Warmer temps ramp that up for me. One of the problems after my surgery is the very real possibility of the pins and lbull do eedles thing. Mine came from my damaged occipital nerves and the pain was in the back of mybneck and all over my scalp. Absolutely horrible. So that is a huge concern.
-
Like -
Helpful -
Hug
3 ReactionsHi, @maddiemae. I had ACDF surgery on c5c6 which helped with difficulty walking and regaining bladder control due to myelopathy spinal cord pressure/damage (if I waited any longer, I could have had permanent loss of bladder control and worsening of my ability to walk). I lost a good amount of muscle strength and conditioning. I was dropping things and losing balance and had upper body pain and weakness. I am so de-conditioned now that small tasks are so hard due to weakness and exhaustion. This is now my life at the age of 54! My body feels like it is 84! I used to love to dance and do yoga but basic movements and walking up stairs are so difficult now (I use the railing to pull me up some days). I just lost my job due to large layoff and I am a single parent of a 14 year son and his sole provider (he has some special needs, too). Losing health insurance scares me and not being healthy makes it hard to find work (very limited physically on what I can do). I get so depressed about my limitations and look at my house getting more cluttered and dirty because I have limited strength and energy it’s so very frustrating (coming from a person who liked to be organized and independent). I am scheduled next week for an updated MRI of my lumbar spine and follow up appointment with my surgeon’s PA to see the status of my l4l5 spinal stenosis and see if anything new is showing up that explains the new numbness in my feet when I walk and numbness in my buttocks when I stand. Injections have helped in the past but so painful when you get them. I’m not sure it is good for the lumbar spine to get many injections over a long period as it might compromise the joint so surgery may provide some longer term relief of pressure on the spinal cord/nerves/nerve roots. I’m lying in bed as I type this…do a little, need to lie down, which is on repeat throughout the day. Can never do what I planned or would like to do/accomplish. My depression and exhaustion makes me give up and not care about the things I used to care so much about. What I find is that others around you don’t really understand or empathize what living with chronic pain/weakness/exhaustion/depression is like. It is like a disability but since you aren’t missing limbs or using assistive devices to walk or get around (yet), they do not “get it” and your invisible disability means you are limited in what you can do and need more help. I feel like I have to beg for help or wear a sign that says that I need help and not to assume I am okay because I am not. I used to be on duloxetine 60mg and bupropion 150mg but went off them to see how I felt off them (was on them so long and had gained weight which doesn’t help chronic pain at all). I realize now I need to go back on the medication but the loss of medical coverage at the end of October makes me afraid to go back on them only to not be able to afford them so I can keep taking them (once on them, need to taper off really slowly over time). With my depression and chronic pain where it is now and loss of job, I don’t want to become suicidal and coming off those medications may make things worse. I have no family and feel so alone in my personal struggles that some days, I don’t feel like I can go on. I’m not sure how I can make things any better. I am usually a fighter and one to persevere (raised in a family of abuse and neglect and always for the underdog) but this has really beaten me into the ground where I literally can’t get up.
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Like -
Helpful -
Hug
4 ReactionsYes, warmer temperatures and higher humidity seems to make my nerve pain, pins and needles, burning, and tingling worse. We have had a heat wave here and I need to limit time outdoors in the sun and stay in A/C. Cooler showers help. Swelling seems to put more pressure on nerves.
-
Like -
Helpful -
Hug
1 ReactionI'm so sorry for this situation! It seems you should qualify for some social services and in-home assistance. Have you asked your doctor? Can you apply for disability?
-
Like -
Helpful -
Hug
3 Reactions