I was diagnosed right before Thanksgiving with an autoimmune condition, sjorensm and secondary fibromylgia. At that appointment I was put on meds for my autoimmune condition, but was told it would take about six months for the medicine to take affect. I was also told that fibromylgia was challenging to treat and the hope was as my autoimmune got better my fibro symptoms would also improve. She also ackwoledged that we need to do something to improve my quality of life until then and put me on Savella. I left the appointment feeling so validated because this had been about a three journey to get any real diagnosis or treatment.
I unfortunately had an allergic reaction to the Savella and had to stop it and have been in a downward spiral since that appointment. I honestly didn't know it was possible for your body to hurt like this. My base level pain is like someone has taken my nerves and turned their sensitivity to a 15. Literally I have cried because my boyfriend will try to hug me and the hug physically hurts. And the pain only goes up from there and at it worst it feels like my nerves are on fire. The pain is so bad sometimes I literally have panic attacks from the pain. I have been trying to push through and live life, but it seems impossible. On an average day, I am sleeping 13-15 hours at night. Even with that around noon - 1pm each day I have these episodes. where I get so tired I real drunk, If i go to sleep, I sleep for a couple hours and wake up at a base level of pain. If i don't go to sleep the pain just worsens and worsens and worsens until I have the panic attack. I spend my entire weekends just sleeping or in the fetal position on the couch.
I just don't know how to live and work. I am a teacher and my principal has been anything but helpful. There have been days while I literally teach my fifth graders with tears streaming down my face because i am in so much pain and I am just told there is no coverage for my classroom. I have had a parent hold me while I have a panic attack because my principal just told me to go outside and collect myself so I could come back into the classroom. I have tried going through FMLA/ADA and my principal fight me on each step and each accommodation I get approved. And because what I do, I am so limited on the pain medicine I can take and work. I often do edibles/muscle relaxer/Xanax at home, but can't take any of these meds if I am working. I have thought about asking my doctor about short term disability, but I have this voice inside my head that tells me I am not sick enough for that and the doctor will just laugh at me.
I just feel like I am gaslit everyday by a principal who just tellls me I don't look sick and I should be able to do this, a rheumatologist who just ignores my phone calls or tells me to make an appointment for months away. When I go to the er, I am told I am just pain med seeking and sent home with nothing. My primary physician is great, but I am afraid to message him how I truly feel cause I am afraid he will just write me off as pain med seeking and I will lose my only ally in this. I really just need someone to tell me I am not bat shit crazy. That these episodes are real, that my pain is real, my fatigue is real, my struggle is real. I have never struggled with depression, but I have never felt this hopeless in my life. I know I need to make changes, but I don't know how.
I unfortunately had an allergic reaction to the Savella and had to stop it and have been in a downward spiral since that appointment. I honestly didn't know it was possible for your body to hurt like this. My base level pain is like someone has taken my nerves and turned their sensitivity to a 15. Literally I have cried because my boyfriend will try to hug me and the hug physically hurts. And the pain only goes up from there and at it worst it feels like my nerves are on fire. The pain is so bad sometimes I literally have panic attacks from the pain. I have been trying to push through and live life, but it seems impossible. On an average day, I am sleeping 13-15 hours at night. Even with that around noon - 1pm each day I have these episodes. where I get so tired I real drunk, If i go to sleep, I sleep for a couple hours and wake up at a base level of pain. If i don't go to sleep the pain just worsens and worsens and worsens until I have the panic attack. I spend my entire weekends just sleeping or in the fetal position on the couch.
I just don't know how to live and work. I am a teacher and my principal has been anything but helpful. There have been days while I literally teach my fifth graders with tears streaming down my face because i am in so much pain and I am just told there is no coverage for my classroom. I have had a parent hold me while I have a panic attack because my principal just told me to go outside and collect myself so I could come back into the classroom. I have tried going through FMLA/ADA and my principal fight me on each step and each accommodation I get approved. And because what I do, I am so limited on the pain medicine I can take and work. I often do edibles/muscle relaxer/Xanax at home, but can't take any of these meds if I am working. I have thought about asking my doctor about short term disability, but I have this voice inside my head that tells me I am not sick enough for that and the doctor will just laugh at me.
I just feel like I am gaslit everyday by a principal who just tellls me I don't look sick and I should be able to do this, a rheumatologist who just ignores my phone calls or tells me to make an appointment for months away. When I go to the er, I am told I am just pain med seeking and sent home with nothing. My primary physician is great, but I am afraid to message him how I truly feel cause I am afraid he will just write me off as pain med seeking and I will lose my only ally in this. I really just need someone to tell me I am not bat shit crazy. That these episodes are real, that my pain is real, my fatigue is real, my struggle is real. I have never struggled with depression, but I have never felt this hopeless in my life. I know I need to make changes, but I don't know how.
