Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Welcome to Connect @cahnny. On the contrary, there is steady activity in the Chronic Pain group https://connect.mayoclinic.org/group/pain/ So glad that chose to post a message. We’d like to get to know a bit more about you. What brings you to Connect and in particular to the pain group?

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

Your ( our ) best bet is to notify our state representatives and/ or our congressman and ask them what the best way to get our voices heard. There is a site you can go to called Change.com. It is a site that anyone for any reason can start a petition online. I have seen some that have been very successful. Try these 3 ideas and I am encouraging others as well to do the same. Maybe at least it can be a starting place. I will see if I can find anything else that may help. Good luck to us.

Liked by cognac

REPLY
@cahnny

I see there hasn’t been any activity in this discussion group for a while so I’ll look for another one.

Jump to this post

Tell us about yourself and what brings you to the group? The members will come out once they’ve been summoned.

REPLY

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Liked by kayelle

REPLY
@colleenyoung

Welcome to Connect @cahnny. On the contrary, there is steady activity in the Chronic Pain group https://connect.mayoclinic.org/group/pain/ So glad that chose to post a message. We’d like to get to know a bit more about you. What brings you to Connect and in particular to the pain group?

Jump to this post

Just wrote a reply but don’t see it. Just wanted to add that I also take ClonazaPAM for anxiety and spasms I get out of the blue anywhere from my side, to my abdomen, to my esophagus…just anywhere…any time.

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Jump to this post

Hi cahnny, Boy, after reading about you, I feel I shouldn’t complain. (but I do). Sorry for all that you have been through. I hope things will get better for you! I hope they will find something for us with chronic soon. Something that will help with the pain and not put us to sleep. I want to do things with out pain!

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Jump to this post

I am so sorry for your suffering, cahnny. The itching may be from the hydrocodone. I take oxycodone twice a week for daily migraine and I get unbelievably itchy all over. I now always take benadryl with the oxy. That, and I have a nice back scratcher with a long handle. I still itch, but the two help immensely. Have you ever visited a pain clinic? I have found the health professionals there to be the most compassionate. The only downside was the one year wait to be accepted as a patient, as demand is high and I go to the only accredited pain clinic in my large state. I wish you all the best. You will be forever in my thoughts.

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Jump to this post

Hi hosta: Hope this is the right place to reply to you and you see this. This is all new to me. I read some of your posts before writing this reply. I think I have a general idea of your situation and think you have every reason to “complain” after everything you’ve been through. I’m so sorry for your medical conditions. I guess we both know complaining does no good though. Actually I can’t believe I wrote that “book” above. I don’t easily talk to people about my issues. Everyone has their own lives to live and don’t need to hear my problems. Guess I’m in a little bout of depression and gave in to feeling sorry for myself anonymously. As I sit here everything hurts. At this moment the worst pain is coming from the back of my thighs pressing against the chair I’m sitting in as will as pain in the center of my spine. It’s never ending. There’s always something hurting and I guess it’s just wearing me down. I think you totally know how that feels.

I hope you find relief and doctors who can help. Good luck and thank you for the kind words. It was very nice of you to reply.

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Jump to this post

Hi lauriedr: Thank you for the reply. Yes, I do have a back scratcher but try not to use it. It really doesn’t help in the long run. The more I scratch the more I itch. The itching started before I started taking hydrocodone. It started after I was diagnosed with neuropathy and that condition started spreading. It really feels like a nerve issue. I don’t often itch all over. It’s just my spine that itches and the new cream I mentioned is really helping. No, I haven’t been to a pain clinic but I’ll look in to that. Wow…how can there only be one pain clinic in a whole state. I wish you all the best as well. Thank you very much for your thoughts. Good luck.

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

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Yes, I do know how you feel. I am so tired of hurting and of being tired period. i guess I sometimes forget that there are other people who hurt as much or more then I do. I sometimes have a pity party all by myself. If ii weren’t for my girls and my church family, I don’t know what I would do. God and I have some good talks. It is good to have someone to talk to! Bless you!

REPLY
@cahnny

Hi Colleen: I’m sorry I haven’t replied before this. To be honest, I’m starting to feel like a hypochondriac, don’t know what to say or where to begin because there is so much going on for so long. I’m 70 years old. I’m living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that’s no longer there. They put a cast on my leg and told my mother I’d never walk again. My parents split…we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha…I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn’t know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It’s been years of treatment, laser surgeries, and medications. I’m now totally blind in my left eye and it’s just a matter of keeping it comfortable as it slowly atrophies. There’s nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don’t remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I’ve got neuropathy left foot and leg and Morton’s Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the “neuropathy” is more than that. I think it’s damage to my nervous system. My spine and back constantly itches and I’ve got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it’s inflammation caused by the weather changes which puts pressure on nerves. But I’m not a doctor so what the hell do I know. I’m just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I’ve been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won’t take a chance on surgery because I have too many areas that are damaged and I don’t like the odds I’m given for improvement. I’ve had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I’m not sure but I think they were iron shots. Those records are gone so it’s only my word about that. Doctors just look at me with skepticism when I tell them….lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don’t go over a total 4,000 mg a day. I’ve discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I’ve found a way to keep those under control through diet and a daily dose of generic MiraLAX. I’ve had colonoscopies and endoscopies.

Geezzz…I’ve written a book here. Guess I finally took the time to vent somewhere. Yes, I’m depressed and feeling sorry for myself sometimes. I’m in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don’t mix…lol. I have to stay on a firm surface. My husband has his own medical issues so I don’t want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don’t go anywhere any more except to doctor’s appts. I’m bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I’m clicking post.

Jump to this post

hosta….I have no doubt you know how I feel. I’m so glad you have your “girls”. I assume they are grown. I have 5 children (3 sons and 2 daughters) but they all live on the East Coast and I live on the West so I don’t see them often but we do talk. They’re all grown with families of their own so I really don’t complain much to them either. Guess I just keep things to myself. Truth be told, none of them know the full extent of what’s really going on with me. There’s nothing they can do to help 3,000 miles away so why just worry them when they all have their own issues of daily life to deal with.

I’ve started a new “pain” which really feels like the frosting on the cake. I spend a lot of time on the computer because I can usually find something interesting to read or do. I can’t walk or stand for too long so I sit when I can’t take anything else. Now, after sitting in my chair for 15 minutes or so the backs of my thighs become quite painful and I have no idea why. Just seems like it’s one thing after the other. Every time I accept my reality, something new pops up.

I do have to stop feeling sorry for myself though because I know it doesn’t help anything. Like you said though, a pity party every once in a while does happen. I guess that’s what led to me writing that book above. I just felt so down. I didn’t have anyone to talk to that wouldn’t just feel sorry for me or, even worse, listen just to be polite. My husband has medical issues of his own so I try not to be a downer around him but I get tired of “being strong”. This is a place where you’re basically anonymous and people can ignore you or reply to you if they truly want to. I guess that made it easier to poor my heart out…lol

REPLY

Hi. My name is Susan and I live in NC. I have Arnold Chiari Malformation. I have headaches worse than migraines. My pain medicine that I take everyday helps to control them. I also have a lot of other things wrong with me that causes additional pain. I have a lot of pain in my stomach. I have been in pain for over 15 years and I am only 48. I look forward to making some new friends here.

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Welcome Susan!

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@smann68

Hi. My name is Susan and I live in NC. I have Arnold Chiari Malformation. I have headaches worse than migraines. My pain medicine that I take everyday helps to control them. I also have a lot of other things wrong with me that causes additional pain. I have a lot of pain in my stomach. I have been in pain for over 15 years and I am only 48. I look forward to making some new friends here.

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Welcome to Connect, Susan! 🙂 @smann68. My name is Kim. I have been a member of Connect for about 2 months now but just started posting the other day. I have come to learn so much, about the wonderful group of members here, and the illnesses they deal with, during the time I did not post, just by visiting different topic areas and discussions. I hope, in Mayo Connect, you will find helpful and new information, offer your own insights on different topics, and find the other Connect member’s information helpful, and hopefully relevant to your own conditions. I can say I have.
We’re about the same age, Susan. I’m 47. I’ve been dealing with Chronic Pain, and Chronic Neuropathy, for over 12 years, now. And, like yourself, and others here, I have other conditions/illnesses that I deal/live with, daily.
You’ll find, as I have that MANY members here deal with Chronic Pain. Chronic pain does not discriminate, that’s for sure. We all deal with chronic pain differently, some with medications, sometimes several, through exercise and often through a “positive” mindset when possible, etc. We are ALL unique, yet similar in our experiences. I wish I could link to you, information, or a more specific discussion of others that may be dealing with your disease but I have not yet mastered the linking of such things. However, I will learn. 🙂
In the meantime, I know that another member(s) definitely will! The Director, the Moderator’s, and Mentors here, are fantastic! They are truly empathetic, helpful and many know firsthand/from experience, what Connect members are dealing with!
I’m not very familiar with your illness of, Arnold Chiari Malformation, Susan. Although, I have read about it, during research I do on my own. (I am always looking something up online. I have a desire to learn, that never seems quenched!)
Anyways, I’m a talker and writer… lol so I will end here, for now. I’m very open, and willing to share, listen, and talk. Making new friends here is 100% possible! Have a great day, Susan. 🙂

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Hi, I’m Karen and I have fibromyalgia.

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