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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 6 hours ago | Replies (7051)Comment receiving replies
@johnbishop Thanks John, I feel so lonely. My "disease" and how pervasive it is is so rare I don't have anyone to identify with. I don't ever hear from anyone on the Mayo Clinic website about my posts (everyone has too much email) and probably no one understands how harmful this disease is since so few people have it. I will pray that people reach out to me at least to support me, like you. Along with the tremors and stiff legs it is so hard to keep fighting every day doing my stretches and my husband is now starting to take me for very short walks so I can hopefully have some quality of life and beat whatever happened to me, seizure or whatever. It is so depressing to think that some doctors think I am faking it, I have bad days and badder days but every day is a challenge and I welcome any support.
Replies to "@johnbishop Thanks John, I feel so lonely. My "disease" and how pervasive it is is so..."
You asked in another thread about who to see for the lichen planus you are experiencing - here is a link to Mayo's advice. https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/diagnosis-treatment/drc-20350874
I hope you can find some help.
Sue
Hello @bustrbrwn22, my great sympathies for your ongoing health issues. I have determined that having autoimmune diseases is indeed very lonely and isolating. People just tell me I look good and don’t understand how I claim to feel so ill.
I have three autoimmune diseases, one of which I had symptoms for years which when I told my primary care doctor she paid no attention. If she just would have sent me for some labs I wouldn’t have ended up in Stage 3 liver cirrhosis and nearly dead three times. I think like many with autoimmune diseases we can completely relate to your frustration with medical providers that don’t listen until it’s too late.
I know there are good medical providers out there though, as I was blessed to have a liver transplant. My surgeons and providers on my transplant team are truly remarkable.
Its indeed a daily struggle to remain positive when you think no one cares and when one is in pain. I try to find joy in simple things and continue to hope for better days. I hope that you find the same and can remain positive in the face of such adversity.
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Very sorry to hear about your disease. It just amazes me how people cope with stuff. Facing our own mortality, and our less than healthy selves....I helped my mom die at home. She had stomach cancer and fought it until they could not do anything for her anymore. It was just pain management. She told me, "You don't know how I suffer." She was ready to go. I think she stayed as long as she did because I wasn't ready to let her go. Taking care of her gave me a sence of purpose. But now I am not afraid to die. Not that I want to, but when it is time to move on, I'll accept it. Just manage my pain. Anyway. Doctors are pretty emotionless creatures. Even nurses. Guess they have to be. So you are right not to turn to them for support.