Lonely and currently dealing with chronic pain. Tonight it feels like I'm burning.
I haven't been on 7cups in 6 years and a lot has changed on the app and with me, mostly physically. Over the past 5ish years I was dealing with chronic back pain but the last two years things have gotten a lot worse.
I not only have constant back pain but as of 4 months ago chronic headaches every single day with migraines mixed in. Polyneuropathic pain that feels like my whole body is being dipped into hot oil, which tonight it's extremely bad in my hands and arms. Aches and pains all over. I've been to the ER multiple times. My old PCP believes this is all anxiety even though my anxiety is getting better while my pain and other symptoms are getting worse. I'm trying to switch to a new PCP but having issues with the clinic. Autoimmune conditions have been ruled out at one of my many ER trips, no tick borne diseases either. I'm pretty much prefectly healthy but feel far from it. ER doctors have questioned if I'm actually in as much pain as I say I am because I don't "look" like I'm at an 8 and because I'm young (23).
I am seeing a neurologist. He has been very good and not dismissive of my symptoms because of my diagnosis of anxiety. I had a lumbar/thoracic spine MRI done that showed nothing concerning. My head and cervical spine MRI did show some issues but nothing that really explains my symptoms. I apparently have some disc problems that is causing arthritis in my neck and I have a cavernoma on the left side of my brain that could cause seizures but otherwise isn't an immediate danger. It feels like a whole lot to unpack with no answers and just a lot more questions. I don't see my neurologist until the 28th.
I went to the ER on Thursday for a week long migraine unresponsive to my at home medications. The relief only lasted 8 hours and I woke up at 3am with a horrible headache again. My neurologist prescribed me steroids to hopefully help if it doesn't help I'll have to go back to the hospital for admission to get more IV meds and a further work-up I guess. Im really scared to be in the hospital alone with my social anxiety, I have a hard time asking for stuff that I need or expressing how I feel, that's why I always have my mom with me just in case I shut down or get too nervous to do something.
It's very overwhelming and I feel really lonely because my boyfriend doesn't really understand and we are in a long distance relationship so it's hard. My other friend is terminally ill but does understand my pain but when she passes away I'll have no one that understands or could help me through this confusing and painful journey.
I'm sorry if this is all over the place.
@TeaSprite, no need to apologize. Thank you for sharing that with us! I know it isn't always easy to become vulnerable like that. It sounds like you are going through a lot right now which makes it understandable as to why you feel overwhelmed. Just know we are all here rooting you on and are ready to support you any way we can!
Yeah it definitely feels like I'm going through a lot but also not because most of my days are spent in bed. I'm nervous about my neurologist appointment Thursday since the steroids seem to have no effect, I don't know what he will suggest. I'm also not sure if I'm logging my symptoms correctly or enough. Just ugh...
@TeaSprite Hey! How did the appointment go? I hope it went well for you.
Listening - One Step At A Time!
Hey thank you for checking in I completely forgot to update on here. Sadly my neurologist is also pretty much blaming my anxiety like my PCP has. He didn't necessarily dismiss my symptoms and pain but I'm not sure I agree with the diagnosis I've been given so I'm thinking of getting a second opinion even though I'm terrified of that.
He says I have "Functional Neurological Disorder in the setting of severe anxiety and panic". My body and brain to him (even though abnormalities have been see on MRI scans) is healthy and structurally functional but the signaling between my central and peripheral nervous systems are having issues. FND is actively being researched now so not much is understood.
Nothing is really being done about my pain or symptoms other then increasing a medication that is having no effect which is super frustrating.
Hey @TeaSprite. There is nothing wrong with seeking a second opinion. I do all the time. It just shows how well one can advocate for themselves! Hang in there!
@TeaSprite Thanks for responding. That does sound super frustrating, do you have an advocate, someone that can support you and give you the strength to seek another opinion? Like @wonderfulRainbow7817 says there is nothing wrong with seeking a second opinion.
Listening - One Step At A Time!
Hi. I'm so sorry you are dealing with this. It can be incredibly hard especially when medical professionals invalidate your pain. It makes it difficult to even want to seek help. I see you and how much you are dealing w and fighting. I am dealing w body pain that is sometimes in the head. We are fighting an intense battle that is hard for others to understand. Our body feels like it is betraying us. It's ok and understandable that you would spend a lot of time in bed. Be easy on yourself for resting. I know I need to do that too 💚
