Chronic Pain members - Welcome, please introduce yourself

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.

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Hello @bustrbrwn22. I'm hoping you remember me from the neuropathy group. I went to Mayo's Pain Rehab Center for 3 weeks last October, then took "me time" to work the program. Now, here I am! Back to support members like yourself.

Let me first start by saying how proud I am of you for reaching out at the times you most need reassurance, empathy and support. I noticed that about you when I used to read your posts.

I'm very sorry for the plethora of issues you have, and greatly understand the feelings of devastation you're experiencing. It's very hard to not go down the rabbit hole by rehashing the past, questioning past decisions or missed diagnoses. It creates wasted energy and fires up your nerves, creating enhanced pain by triggering your central nervous system. There's a phrase at PRC called "don't access the network". It's a hard thing to get used to doing, but I strongly encourage anyone to make their best attempt at this change.

Some other helpful tools and coping mechanisms I learned at PRC were:

1. Focus on controlling the things you can

2. Pull in the view finder and think about the next 5 minutes, do not
get too far ahead

3. Focus on abilities, not limitations

4. Practice techniques that relieve stress (like the videos you watch
that @lorirenee1 recommended - she's a smart cookie!)

5. Learn to shift your focus away from pain, through distractions,
nature, comedy, children, pets

6. Reduce or omit medications that are not medically necessary by
speaking with your doctors and asking what may be enhancing
your pain

7. Eating a nutritious diet and getting the sleep your mind and body
needs

8. Don't let feelings drive the bus! Focus on facts over feelings,
especially when working with your doctors

I certainly hope that when you're up to reading this post, it brings reassurance to you that you are not alone. Maybe we all have different things going on, but at the end of the day, Connect is here for you.

@bustrbrwn22 - The Patient Revolution website has lots of great tips for learning how to advocate for your health and to bring your doctor along for the trip 😁 Check out the topics on this page - https://www.patientrevolution.org/tools. I like the Tools for the Visit page which helps plan your conversation with your doctor.

@rwinney. Thanks for taking the time to respond and the recommendations are spot on. I tend to ruminate over if I hurt someone’s feelings, could have done something better etc. I can only use my eyes a short period of time. Unfortunately the suspicion of the most recent specialist is that LP is also now in one of my ears and on my scalp, could even be in my nose based on symptoms and initial visits to drs. Not a pretty way to end up but I sure hope when it get too bad I am offered something to kill the nerve pain. I went through a 4 hour stretch today where my eyes had a deep, deep pain and I was spasming so my husband had to attend to me. The dark bedroom was too bright for me so I had to wear sunglasses. I was so worried no one would respond or support me - everyone here has serious issues. I lost the use of my legs last night while starting to do laundry and they didn’t become useful again this morning but then the all over spasms started. I keep asking my husband to videotape it because doctors don’t believe me. Oh well, I am so uplifted and can’t thank you enough!

@rwinney. Thanks for taking the time to respond and the recommendations are spot on. I tend to ruminate over if I hurt someone’s feelings, could have done something better etc. I can only use my eyes a short period of time. Unfortunately the suspicion of the most recent specialist is that LP is also now in one of my ears and on my scalp, could even be in my nose based on symptoms and initial visits to drs. Not a pretty way to end up but I sure hope when it get too bad I am offered something to kill the nerve pain. I went through a 4 hour stretch today where my eyes had a deep, deep pain and I was spasming so my husband had to attend to me. The dark bedroom was too bright for me so I had to wear sunglasses. I was so worried no one would respond or support me - everyone here has serious issues. I lost the use of my legs last night while starting to do laundry and they didn’t become useful again this morning but then the all over spasms started. I keep asking my husband to videotape it because doctors don’t believe me. Oh well, I am so uplifted and can’t thank you enough!

I believe you. It sounds as if your command center aka central nervous system is on overdrive. Try to stay calm and strong, and hang on tight. Maybe you and your husband can devise a plan of what and when you can do things. If your eyes or legs are fighting you, don't fight back. Work smarter, not harder. Use moderation and modification to squeeze the best time and ability out. Patience and acceptance is a difficult thing to come by, but if you work on calming this storm in your body, I think you will feel some benefit.

@bustrbrwn22 I have not been posting much on this thread, but read the posts. This is a great idea, to have your husband video your spasms and all the issues. How can a medical dr refuse to address an issue they can visibly see when it happens? Put it on a spare thumb drive, that can be played back on his laptop, and become part of your medical records. Save a copy for yourself, too!

You have a lot of people on your side!
Ginger

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.

@bustrbrwn22 - The Patient Revolution website has lots of great tips for learning how to advocate for your health and to bring your doctor along for the trip 😁 Check out the topics on this page - https://www.patientrevolution.org/tools. I like the Tools for the Visit page which helps plan your conversation with your doctor.