Chronic Pain members - Welcome, please introduce yourself

Thanks for the reply but sorry for your pain. Although I am relieved to find someone with a similar experience. I am also seeking the evaluation of another pain specialist to see if possibly the procedure was not done effectively. I’ll keep
you posted. Let me know how you do
Good wishes and thoughts to you

Will do. Also please let me know of your progress for relief.

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 @bustrbrwn22, I'm really sorry to hear that the Lichen Planus has spread to your eyes. I would probably feel the same way you do if it were me. It's easy to get down on yourself. I don't know if it would be helpful for you but recently I found a site that has some great daily inspirational messages that I subscribe to and the one for today reminds my of how I think you may be feeling so I wanted to share it with you. Hoping your treatment goes well.

Here's the website - https://www.resilientoption.com/

@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.

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.

Thank you so much #czsalt64 I sincerely thought the medical community was here to help. I am amazing myself that I get up every day after only a couple hours of sleep (my eyes burn all night so I have to put ointment in them at least every hour) and do deep breathing for hours because it takes so long to get the tremors out my hands and stiff legs under control. In the afternoons I seem to get better but I never know when an attack is going to happen. Like now, I was trying to install some apps for my husband and had to stop because I couldn't control what keys I hit. I also can't remember words and most doctors names so my husband has to remind me most days. Typing this is hard because I've used so many wrong words and typos I have to re-read so many types before posting but I need to because I need human support to keep fighting. Most of my doctors aren't giving it to me. On one of my ER visits a doctor noted I took dilaudid before I came in. I've never had dilaudid and wouldn't unless a doctor prescribed it and watched carefully since I have so many reactions to medications. I am so crushed by the cruel untrue, out of context things that were written in Epic that I almost can't breathe when I think about it. And now starting the fight to have it corrected so hopefully when I find a new PCP they see the truth. The "liaison" they assigned me to work with hasn't returned my calls for two weeks, including the one I left today, I leave a couple a week. I am not afraid to die either, I actually pray for it now to happen naturally, without pain. I am not suicidal, oddly enough, over this. If you got cancer, how do you know you would get anything for the pain with all the fear of opioids? I was advised by the various nurses on call for my PCP to go to the ER 4 different times when I was having these "seizure" like episodes and it was documented in Epic that I went of my own accord and was counseled that the ER was only for people who were dying. My thinking was I don't want to go against medical advice or any medical complications might not be covered by insurance. I didn't stop going to the ER because of their admonishments, I stopped going because my husband now checks on me every 15 minutes or so, even in the middle of the night and has applied for FMLA so he can take care of me at home, dr visits, physical therapy, etc. So I'm sure now I will no longer receive any pain management for my sciatica/neuropathy. because our medical community is so small.and doctors will say when I came to the ER I said I was in pain when they asked or I said I'm in a lot of pain. Not because I wanted drugs, I wanted HELP to stop what was happening with my body. Advice? Words of support, gentle criticism? Including the stalwarts @jesfactsmon @sunnyflower - thanks again for my ramblings. Oh, forgot, my lyme disease and parasites are back as well.so I am being treated for that. I feel like Job.

That is one crazy story. Your suffering is immence for sure. Yes, the doctors are very quick to turn their backs when there are no more options. It is like it all just comes to a stop. Unfortunately FMLA will only kick in after LV and SL are used up, then you are only on leave without pay for a certain period of time. Yes, we can go broke in the USA over a cronic illness caused by no fault of our own. Find enjoyment in the little things and God Bless you.

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

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?