Chronic Pain members - Welcome, please introduce yourself

Hello @bustrbrwn22

I just now read your post about your multiple diagnoses and I am glad that you picked Connect as a place to share your disappointments, losses and grief. You are certainly not whining but sharing your pain with others and that is a healthy thing to do.

I would also like to invite Rachel, @rwinney, to this discussion. She has also had difficult-to-diagnose vision problems as well as chronic pain. She may be able to share some of her coping strategies with you.

Do you have any specific coping strategies that are helpful to you now?

Stubbling on this oasis has solidifys that I am sane and now a member of MC Connect!! A unwilling candidate, that was exposed to covid 19 with a positive test 2 month after receiving the last Pfizer vaccination, in April 2021. I've been doing my own research and found bits and pieces of valuable information but nothing to this extent. I am currently living in Arkansas, a state that does not offer these resources nor support in the surrounding counties of it's capital of Little Rock. It has felt as though I've been in a stack of needles trying to find the hay! Wheww some Relief 😊

The biggest thing that has helped me is opening up to people and seeking support. I never used to open up before even to my husband. Lorirenee1 introduced me to Dan Buglio and I watch several of his videos on you tube every morning until I have my anxiety and breathing under control. I am trying very hard to do whatever I can to not stress over all this stuff because that could on boy make the autoimmune response worse, I would think? I have to Bruder my eyes now cause they are really throbbing now and giving me a splitting headache but I so appreciate everyone who has even liked my posts. I was feeling so alone and you all have lifted my spirits to keep on fighting through the pain. I suspect Lichen Planus isn’t done with me as I have a couple orifices left that are already showing symptoms of LP so keep me in your prayers please. Any suggestions of how to handle better or advocate for myself better are appreciated.

Hello @releaf421, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. We are certainly glad you found Connect! You may want to check out the Get Started on Connect guide for some tips on how to use the site here - https://connect.mayoclinic.org/get-started-on-connect/

Do you mind sharing what you were searching for when you found Connect?

@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.

The biggest thing that has helped me is opening up to people and seeking support. I never used to open up before even to my husband. Lorirenee1 introduced me to Dan Buglio and I watch several of his videos on you tube every morning until I have my anxiety and breathing under control. I am trying very hard to do whatever I can to not stress over all this stuff because that could on boy make the autoimmune response worse, I would think? I have to Bruder my eyes now cause they are really throbbing now and giving me a splitting headache but I so appreciate everyone who has even liked my posts. I was feeling so alone and you all have lifted my spirits to keep on fighting through the pain. I suspect Lichen Planus isn’t done with me as I have a couple orifices left that are already showing symptoms of LP so keep me in your prayers please. Any suggestions of how to handle better or advocate for myself better are appreciated.

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.

Hi, All,
I'm looking for support, empathy, and compassion as I write this. From January to July I was bed bound with severe sciatica, excruciating shoulder/neck pain (unfortunately my pain dr never reviewed the MRI and my new gynecologist looked at it and I have bone spurs/arthritis), new Lichen Planus outbreaks so i could not eat solid food for weeks (but now my Seroquel weight is gone, my husband says I'm way too bony), and now the kicker. I kept asking my eye dr to check again because my eyes hurt 24x7, a pain in the back of my eye that moved to the front. After months of begging, i finally saw a dry eye specialist yesterday. The Lichen Planus has spread to my eyes and the specialist said he would do everything he could to save my vision. Because it is so advanced, he had to prescribe a very strong steroid drop which could cause a sudden increase in eye pressure and immediate blindness, which is most likely the end result anyway.. I have been sleeping about 2-3 hours a night because the eye pain is so bad i have to constantly put special eye drops in. The doctor was very compassionate and his assistant was waiting outside the door as we exited. She offered to let me sit in a private room for a while to digest this devastating news (I can't drive myself right now because of the seizures I think I wrote about) before driving home. I only think what if... what if the doctors and nurses had been more compassionate when I kept calling and advocating for my eye care instead of saying my eyes will probably burn for months, it's part of dry eye healing. it wasn't dry eye, it was Lichen Planus, which I asked and educated them about but none of them wanted to listen to me, I'm not a dr. I apologize for whining but I am beyond devastated. There's more to the story if anyone is interested.but please say a prayer for me.

Hi, All,
I'm looking for support, empathy, and compassion as I write this. From January to July I was bed bound with severe sciatica, excruciating shoulder/neck pain (unfortunately my pain dr never reviewed the MRI and my new gynecologist looked at it and I have bone spurs/arthritis), new Lichen Planus outbreaks so i could not eat solid food for weeks (but now my Seroquel weight is gone, my husband says I'm way too bony), and now the kicker. I kept asking my eye dr to check again because my eyes hurt 24x7, a pain in the back of my eye that moved to the front. After months of begging, i finally saw a dry eye specialist yesterday. The Lichen Planus has spread to my eyes and the specialist said he would do everything he could to save my vision. Because it is so advanced, he had to prescribe a very strong steroid drop which could cause a sudden increase in eye pressure and immediate blindness, which is most likely the end result anyway.. I have been sleeping about 2-3 hours a night because the eye pain is so bad i have to constantly put special eye drops in. The doctor was very compassionate and his assistant was waiting outside the door as we exited. She offered to let me sit in a private room for a while to digest this devastating news (I can't drive myself right now because of the seizures I think I wrote about) before driving home. I only think what if... what if the doctors and nurses had been more compassionate when I kept calling and advocating for my eye care instead of saying my eyes will probably burn for months, it's part of dry eye healing. it wasn't dry eye, it was Lichen Planus, which I asked and educated them about but none of them wanted to listen to me, I'm not a dr. I apologize for whining but I am beyond devastated. There's more to the story if anyone is interested.but please say a prayer for me.