Groups > Coping with Chronic Illnesses and Pain

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Group admin:: Kandra
Created:: January 30, 2008
: 212 Members

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chronic, illness, pain, support, chronic pain, coping

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New to the group but not to pain

Posted: Jun 2, 08 10:53am

Hello everyone, I am new to this group but not to pain. I have Adiposis Delarosa. It's also known as Deurcums Disease and it is a chronic condition where you develop painful lumps all over your body. They can appear ina matter of hours or days and they grow in muscles, by nerves, really all over the place. It started a few years ago and I didn't know what it was. I foudn information on the internet about it and brough it to my doctor and was confirmed that she feels that is what I have. The last few months have been much worse and I have had to quit my job. I can still get aroudn but I do things around the house in turns between sitting down. I have pain with this....when the lumps swell up and hurt I mostly sit. its hard since I am only 42 and have two teen sons. I am hoping to find support here and help others who need to talk. I am always hopeful that they will find a cure for this besides surgery. I know it's progressive and fatal but I take courage in the fact that is advances at different rates for different people...so I may have more time than a few years:) Thank you for letting me join you here...God Bless!

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chronic pain

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4 Comments // 3 Members

Mockingbird

Posted: Jun 2, 08 3:30pm

I'm so glad you joined Doreen! I am so sorry for your situation and pain. Do you live near a University Hospital? Sometimes they have the more cutting edge treatment in their clinics. I am totally unfamiliar with what you have but will look it up.

The members in this group all have different physical problems but they are all chronic and many of us have multiple disorders/diseases. We're here to bitch, share information and empathy and help address issues of depression and anxiety that is insidiously twisted within our chronic pain.

As for me, I'm 52. Pretty healthy and active all my life and BAM! Severe "migraine" headaches that didn't respond to any of my migraine medications. It was so bad I couldn't work anymore and I became depressed and so terribly anxious. My care by my doctors was sub-par and shouldn't have been so. I had to leave my home in FL and move to Chicago so that my son could help care for me. I'd been the total independent women until then which just made the depression even worse. Then they gave me anti-depressants which make me have the opposite reaction and I was thinking of killing myself all the time. It was so frightening for me and my family. Finally after some time, my doctor sent me to the Neurology Center. They quickly discovered what was causing my pain which was causing me to be nearly immobilized. My entire cervical spine had disc degeneration and I had spinal stenosis as well as osteoarthritis. I had lived with this for nearly 3 years by then. Eventually, I'll probably have to have surgery because like your condition, it is progressive and can be fatal by crushing my spinal root and shutting my organs down irreparably. I have good medications but I need to reduce them by trying epidural injections and soft tissue therapy, etc. before going for the surgery.

Then, out of the blue, last Dec. I started having heart palpitations and labored breathing. Just from sitting in a chair! And had terrible weakness, dizziness and was just dropping to the floor or ground like a fly. LSS, I now have an event cardiac monitor on my chest and take my blood pressure 4 to 5 times a day. I have both high and low blood pressure but they are still testing to see why. If there is a blockage the echocardiogram I just had done will hopefully show it. So because of this, all of the plans to go forward for my spine had to stop until we know if my heart and system is strong enough. Crap.

So bitch as much as you want here. And also let me invite you to The Grumpies Group. One of our great threads is about grousing about our pains of the day. We're fun there and lift each other's spirits, so join us there too if you'd like.

Wishing you all the best treatment to come and know that we may be strangers to you now, but we're really just friends that you haven't met yet!

mockingbirdkitty

I'm so glad you joined Doreen! I am so sorry for your situation and pain. Do you live near a University Hospital? Sometimes they have the more cutting edge treatment in their clinics. I am totally unfamiliar with what you have but will look it up. The members in this group all have different physical problems but they are all chronic and many of us have multiple disorders/diseases. We're here to bitch, share information and empathy and help address issues of depression and anxiety that is insidiously twisted within our chronic pain. As for me, I'm 52. Pretty healthy and active all my life and BAM! Severe "migraine" headaches that didn't respond to any of my migraine medications. It was so bad I couldn't work anymore and I became depressed and so terribly anxious. My care by my doctors was sub-par and shouldn't have been so. I had to leave my home in FL and move to Chicago so that my son could help care for me. I'd been the total independent women until then which just made the depression even worse. Then they gave me anti-depressants which make me have the opposite reaction and I was thinking of killing myself all the time. It was so frightening for me and my family. Finally after some time, my doctor sent me to the Neurology Center. They quickly discovered what was causing my pain which was causing me to be nearly immobilized. My entire cervical spine had disc degeneration and I had spinal stenosis as well as osteoarthritis. I had lived with this for nearly 3 years by then. Eventually, I'll probably have to have surgery because like your condition, it is progressive and can be fatal by crushing my spinal root and shutting my organs down irreparably. I have good medications but I need to reduce them by trying epidural injections and soft tissue therapy, etc. before going for the surgery. Then, out of the blue, last Dec. I started having heart palpitations and labored breathing. Just from sitting in a chair! And had terrible weakness, dizziness and was just dropping to the floor or ground like a fly. LSS, I now have an event cardiac monitor on my chest and take my blood pressure 4 to 5 times a day. I have both high and low blood pressure but they are still testing to see why. If there is a blockage the echocardiogram I just had done will hopefully show it. So because of this, all of the plans to go forward for my spine had to stop until we know if my heart and system is strong enough. Crap. So bitch as much as you want here. And also let me invite you to The Grumpies Group. One of our great threads is about grousing about our pains of the day. We're fun there and lift each other's spirits, so join us there too if you'd like. Wishing you all the best treatment to come and know that we may be strangers to you now, but we're really just friends that you haven't met yet! mockingbirdkitty

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Posted: Jun 2, 08 3:30pm

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I'm so glad you joined Doreen!  I am so sorry for your situation and pain. Do you live near a University Hospital?  Sometimes they have the more cutting edge treatment in their clinics. I am totally unfamiliar with what you have but will look it up.

The members in  this group all have different physical problems but they are all chronic and many of us have multiple disorders/diseases. We're here to bitch, share information and empathy and help address issues of depression and anxiety that is insidiously twisted within our chronic pain.

As for me, I'm 52. Pretty healthy and active all my life and BAM!  Severe "migraine" headaches that didn't respond to any of my migraine medications. It was so bad I couldn't work anymore and I became depressed and so terribly anxious. My care by my doctors was sub-par and shouldn't have been so.  I had to leave my home in FL and move to Chicago so that my son could help care for me. I'd been the total independent women until then which just made the depression even worse. Then they gave me anti-depressants which make me have the opposite reaction and I was thinking of killing myself all the time.  It was so frightening for me and my family.  Finally after some time, my doctor sent me to the Neurology Center. They quickly discovered what was causing my pain which was causing me to be nearly immobilized.  My entire cervical spine had disc degeneration and I had spinal stenosis as well as osteoarthritis.  I had lived with this for nearly 3 years by then. Eventually, I'll probably have to have surgery because like your condition, it is progressive and can be fatal by crushing my spinal root and shutting my organs down irreparably.  I have good medications but I need to reduce them by trying epidural injections and soft tissue therapy, etc. before going for the surgery. 
Then, out of the blue, last Dec. I started having heart palpitations and labored breathing. Just from sitting in a chair!  And had terrible weakness, dizziness and was just dropping to the floor or ground like a fly. LSS, I now have an event cardiac monitor on my chest and take my blood pressure 4 to 5 times a day. I have both high and low blood pressure but they are still testing to see why.  If there is a blockage the echocardiogram I just had done will hopefully show it. So because of this, all of the plans to go forward for my spine had to stop until we know if my heart and system is strong enough. Crap. 
So bitch as much as you want here. And also let me invite you to The Grumpies Group. One of our great threads is about grousing about our pains of the day. We're fun there and lift each other's spirits, so join us there too if you'd like.

Wishing you all the best treatment to come and know that we may be strangers to you now, but we're really just friends that you haven't met yet!

mockingbirdkitty

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doreendecker

Posted: Jun 6, 08 10:00am

Thank you MockingBird...I appreciate your comment and how you shared with me. I feel for you and wish you all the best with your test and finding a solution! I have good days and bad days so I won't be here everyday but I have been reading the posts as I can and I love how people can just say what they want here...it's so great. My family is great but sometimes I feel they get tired of dealing with my condition and I want to share how I feel with others...yea for this group! I do have a question tho.....being new to TeeBeeDee I am havign trouble going to the groups I am interested in.....is there a way to keep track of the groups you choose besides going thru all the groups? If anyone can help with that let me know ok? And again ty for the welcome! I will be back and forth and want to say hi to everyone:)

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Mockingbird

Posted: Jun 6, 08 12:43pm

Hi Doreen!

I'm glad you're here and i hope that you'll come and look at the other groups too, especially the silly ones that help pull our spirits up - and give us some time not to be thinking about our pain. I think that most of us are in the same place with our families. Like yesterday, i thought i was having a significant cardiac event - my son was "i hope you feel better later." oh well, thanks son. they get afraid and tired of it both i think. his wife is a hypochondriac so he tends to have less patience until something actually occurs and i need immediate care. but for the majority here, we get it - no one has to go into a super amount of detail because we've probably dealt with something similar and we tend to be happily empathetic. a number of people with chronic pain are on my group where we are sometimes serious but try to interject some humor because some have fatal diseases. if i haven't said before, my group is "the grumpies group" and it has a number of threads. "mal du jour" is where we post most of our physical grumps. everyone is compassionate and caring.

there are a few ways that i track for groups or threads that don't belong to groups. and if anyone has better suggestions, PLEASE share them.

If i find something i like, i'll go to the first page at hit "alert me". If you post someplace, it gives you the option if you want to be alerted- hit that. When you join a group it will stay in "your groups" on your profile page. Notice who posts alot on a thread or who the administrator is and keep the person's name in mind or offer becoming a "friend". On your inbox page below the list of PMs (personal messages), are your alerts. this is not the most efficient yet but hopefully tbd is working on it.

Any thing that you've placed on alert will show up there and if there is a new posting on that thread, the color blue is brighter - also look to the right where the date and time should be to be sure it's something new.

If i'm looking for something and having no luck be checking my own pages or someone else's, i'll try the search box which works and is helpful sometimes. now that the format has changed and we have pages, i ask people who want me to check something out to send me the site address so that i'm not rooting around looking for it feeling lost!

There is no problem, especially when starting out, by checking other people's info on their profile to help you find your way about.

Glad you're with us Doreen!

Hi Doreen! I'm glad you're here and i hope that you'll come and look at the other groups too, especially the silly ones that help pull our spirits up - and give us some time not to be thinking about our pain. I think that most of us are in the same place with our families. Like yesterday, i thought i was having a significant cardiac event - my son was "i hope you feel better later." oh well, thanks son. they get afraid and tired of it both i think. his wife is a hypochondriac so he tends to have less patience until something actually occurs and i need immediate care. but for the majority here, we get it - no one has to go into a super amount of detail because we've probably dealt with something similar and we tend to be happily empathetic. a number of people with chronic pain are on my group where we are sometimes serious but try to interject some humor because some have fatal diseases. if i haven't said before, my group is "the grumpies group" and it has a number of threads. "mal du jour" is where we post most of our physical grumps. everyone is compassionate and caring. there are a few ways that i track for groups or threads that don't belong to groups. and if anyone has better suggestions, PLEASE share them. If i find something i like, i'll go to the first page at hit "alert me". If you post someplace, it gives you the option if you want to be alerted- hit that. When you join a group it will stay in "your groups" on your profile page. Notice who posts alot on a thread or who the administrator is and keep the person's name in mind or offer becoming a "friend". On your inbox page below the list of PMs (personal messages), are your alerts. this is not the most efficient yet but hopefully tbd is working on it. Any thing that you've placed on alert will show up there and if there is a new posting on that thread, the color blue is brighter - also look to the right where the date and time should be to be sure it's something new. If i'm looking for something and having no luck be checking my own pages or someone else's, i'll try the search box which works and is helpful sometimes. now that the format has changed and we have pages, i ask people who want me to check something out to send me the site address so that i'm not rooting around looking for it feeling lost! There is no problem, especially when starting out, by checking other people's info on their profile to help you find your way about. Glad you're with us Doreen!

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Posted: Jun 6, 08 12:43pm

Comment

spell check

Hi Doreen!
I'm glad you're here and i hope that you'll come and look at the other groups too, especially the silly ones that help pull our spirits up - and give us some time not to be thinking about our pain. I think that most of us are in the same place with our families. Like yesterday, i thought i was having a significant cardiac event - my son was "i hope you feel better later."  oh well, thanks son. they get afraid and tired of it both i think. his wife is a hypochondriac so he tends to have less patience until something actually occurs and i need immediate care.  but for the majority here, we get it - no one has to go into a super amount of detail because we've probably dealt with something similar and we tend to be happily empathetic. a number of people with chronic pain are on my group where we are sometimes serious but try to interject some humor because some have fatal diseases. if i haven't said before, my group is "the grumpies group" and it has a number of threads. "mal du jour" is where we post most of our physical grumps.  everyone is compassionate and caring.

there are a few ways that i track for groups or threads that don't belong to groups. and if anyone has better suggestions, PLEASE share them.
If i find something i like, i'll go to the first page at hit "alert me".  If you post someplace, it gives you the option if you want to be alerted- hit that.  When you join a group it will stay in "your groups" on your profile page. Notice who posts alot on a thread or who the administrator is and keep the person's name in mind or offer becoming a "friend".  On your inbox page below the list of PMs (personal messages), are your alerts. this is not the most efficient yet but hopefully tbd is working on it. 
Any thing that you've placed on alert will show up there and if there is a new posting on that thread, the color blue is brighter - also look to the right where the date and time should be to be sure it's something new.
If i'm looking for something and having no luck be checking my own pages or someone else's, i'll try the search box which works and is helpful sometimes. now that the format has changed and we have pages, i ask people who want me to check something out to send me the site address so that i'm not rooting around looking for it feeling lost!

There is no problem, especially when starting out, by checking other people's info on their profile to help you find your way about.

Glad you're with us Doreen!

Alert me when someone comments on this discussion.

dotcom

Posted: Jun 6, 08 11:49pm

Hi Doreen

I get in on the grumpies groups. I do not have the health problems that some do but I grump sometime. I like the ladies there and talking with them is very comforting to me and I hope to them.

There are prayer groups also if you want to join them. Let me know and I will tell you how to get to them. Really nice people there too.

dotcom

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