Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hi, I'm Ayla
I have chronic abdominal pain due to tumors and a condition called mesentero-intestinal lymphangiectasia. More about this condition can be found at littleleakers.com. Basically, my body can not handle fat at all and my gut swells up and has micro explosions when I take in any fat at all.
I just go out of the hospital a week ago after I had my meds adjusted (fentanyl patch was increased to 100). The home nurse was here yesterday and though I tried to hide it, she could tell I was really hurting, and my Norco was increased to two 10/325 pills every six hours.
She told me that I need to be eating and drinking more (I haven't been doing much of either because it causes pain and vomiting) or I would end up with a g-tube or on iv nutrition. She seemed very serious and it scared me.
I am trying to get back on my feet because I take care of my parents, 75 and 71,who both have organic brain diseases. Bu this is very hard at the moment because I have an unrelated condition called Sjogren's disorder, which causes weakness in the body under stress. I was using a walker until a couple of days ago, and I am scared to the dickens that the Physical therapist is going to tell me that I need it again.
All I want is my regular life back, without the pain or the weakness, so that I can help my parents. I am so frustrated I feel lie screaming. Feel free to send me a message with any ideas you have, I could use all the support I can get.
Ayla 67
I have chronic abdominal pain due to tumors and a condition called mesentero-intestinal lymphangiectasia. More about this condition can be found at littleleakers.com. Basically, my body can not handle fat at all and my gut swells up and has micro explosions when I take in any fat at all.
I just go out of the hospital a week ago after I had my meds adjusted (fentanyl patch was increased to 100). The home nurse was here yesterday and though I tried to hide it, she could tell I was really hurting, and my Norco was increased to two 10/325 pills every six hours.
She told me that I need to be eating and drinking more (I haven't been doing much of either because it causes pain and vomiting) or I would end up with a g-tube or on iv nutrition. She seemed very serious and it scared me.
I am trying to get back on my feet because I take care of my parents, 75 and 71,who both have organic brain diseases. Bu this is very hard at the moment because I have an unrelated condition called Sjogren's disorder, which causes weakness in the body under stress. I was using a walker until a couple of days ago, and I am scared to the dickens that the Physical therapist is going to tell me that I need it again.
All I want is my regular life back, without the pain or the weakness, so that I can help my parents. I am so frustrated I feel lie screaming. Feel free to send me a message with any ideas you have, I could use all the support I can get.
Ayla 67
I am sorry to hear about your situation. It is hard to be the caretaker when we ourselves need the care. I too have Sjogren's Syndrome and know how debilitating it can be. I have it along with Lupus, Pulmonary Hypertension, RA, Fibro and a myriad of other things. Not sure about you, but it seems every time we get knocked down, the further we go and the harder it is to get back up!!
I am not sure how long you have been sick, but wanting your "regular life back" is a normal feeling and all part of the process. And for many of us, like me, we go through this feeling time and time again!! I think frustration is my middle name. I will think I can do something I used to, like rearrange the shelves in my bathroom, and half way through my body starts screaming at me like the idiot I am for thinking that for even a split second. But then I am forced to keep cause I've make a mess trying to "clean out and clean up" to make things easier for myself! That's what I get for thinking!!!
Come here, settle in and vent as much or as little as you want/need. Welcome to our family!
Hugs and Peace,
Jenna
Life getting back to normal may or may not be in the cards. Jenna is right, it is a process. For many, the illnesses become a part of our lives and we go through a grief process learning to adjust our lives and sometimes totally create a new chapter in our life. With all you are coping with, you may want to find a local support group in addition to us to help with coping ideas and ways to pamper yourself and get breaks if possible.
I could not get physical breaks but there are many ways to distract yourself.
Welcome, I look forward to getting to know you. Stay strong and pace yourself.