I need someone to tell me I am not crazy

nadickin

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Jan 8, 2025
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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.
 
Hello @nadickin and welcome to the forum............the forum and community no one would want to join. You're very welcome here, and NO you are NOT crazy!!
I am so very sorry for what you are going through. Many people on this forum, present and past, have been through similar experiences, and can relate to what you are saying. If you stick around and read posts and write to us you will find a lot of support.

I don't know if you want advice or not, so if you don't forgive me for giving it. But I think, since you have good experience with your doctor, that talking to that person might be a good thing to do. You need help from somewhere, and he sounds like the most likely source for you. I fully understand your fear, but it also sounds from what you say as if he won't just write you off.

I also wonder if you can ask for a leave of absence from your work so that you can have some time to work with medications among those that that you are able to take and see if you can find something that will help you. There are many that are used to treat the symptoms of fibro.
Your boss the principle sounds like an unsympathetic jerk, to be honest, and you won't get any help from him. But medical leave of absence is a real thing most places, and it might be in your contract that you have to right to it. After all, if you were injured and in the hospital, there'd be no choice but for your principle to find someone to take your classes, so there must be some way for this to happen. I would even suggest that you could contact an attorney, or your union (if you belong to one) or a Legal Aid representative for information on this, if you cannot afford the services of an attorney (which many people cannot these days!). Or you could do a web search in your area something like: "how to get affordable legal advice in _______(your city or county)". Many places have some form of low cost or sliding scale legal help.

I hope that you can find something or someone that can help you, and I want you to know that we here understand and are here to support you any way we can.
 
Just wanted to say hello @nadickin I cannot add much more than from @sunkacola reply above, but I will say you can feel validated by actually being diagnosed. Theres the actual 'proof' even though you shouldn't be made to feel you need to justify yourself.

You sure are not crazy - I feel for you from feeling so undermined by many of those around you. It makes my blood boil that you are being treated in such a way. I too hope you can feel supported by being here. I wish you well.
 
Hi,
There are many people who care about you and understand every single thing that you have shared. You are not crazy; you’re not making this up; it’s not your imagination. I have experienced almost the exact same things, including my career as a school teacher.
Your pain is absolutely as bad as you think it is. It is off the charts! It’s difficult to say this to you because I don’t want to discourage you, but you’re now in a world that millions of other people are in. Yes, some people in the medical world have already decided to be against you. They made up their minds before they ever met you. They’re at least 60-70 years behind the times.
I’ve been through this for 44+ years. Competent medical care is difficult to find. Some will treat you like you are faking it! Who wants to fake all these symptoms, be in such agony, go from one doctor to another, be mistreated, and have school administrators who think school teachers are expendable? Who? Not I ! Not YOU ! We had lives we were living, and getting along well. Why would we make up all this mess and entangle ourselves in this junk?

Yes, it is legitimate to have crazy, unbelievable reactions to medications! I told several people that a new medication made me more ill than was before I took it. A person said, “I don’t care, take it anyway!” Excuse me ! What did you say? It made me sick—more ill than before—but you think I should bring more suffering on myself by swallowing another one of these pills? I may be ill, but I am not stupid.

I don’t have answers for you, because I don’t have answers for myself, but I care about you—yes, you. I’m sorry to hear that one more person has entered the jungle with us. I’m crying now because I’m so sad to discover one more victim of these horrible symptoms, diagnoses that don’t really help, people who think they can just look at us and decide our state of health. How dare they!
Since my early 20’s, I have not looked like I’m sick, but I am.
When I was in labor with my first child, nurses ignored me because I didn’t “look” like I was about to deliver my baby. But my contractions were 2 minutes apart. They didn’t ask; they didn’t check. I wasn’t screaming like other women. I delivered my baby after only 2 1/2 hours in the hospital—-and it would have been sooner, but the nurses told me to stop pushing because they hadn’t called the doctor soon enough!
I know that everything you try to do may take longer than usual, but do try to keep accurate records of each doctor’s visit, all your lab work, your medications, your pain levels, what helps, what doesn’t work.
Hold on. Don’t give up.
I’m praying for all of us who can’t find proper medical care. Even tonight , I will not be able to go to sleep because a “computer mistake” messed up my prescription at the pharmacy. My doctor can’t see me for two more days— I’ll spend the next two days and nights wide awake, in pain, because someone else messed up.
I’m praying for you tonight. Whatever your name, wherever you are—you are loved. Be blessed.
 
I’m so sorry you’re being treated like this. Many of us have also gone through the same things. Before I stopped working I had fmla which allowed me to only work 4 days a week which helped with rest & appointments. I’d recommend a chronic pain clinic or class if you can find one. Also don’t be afraid to change docs until you find one that wants to help you. I researched docs online & looked at their bios to gauge if they would be a good fit to treat fibro/cfs. The reumatologists don’t want to treat Fibro, my general doc does along with my neurologist. Also I swear by having a monthly massage with someone who knows fibromyalgia. Good luck & God Bless.
 
There are usually two reasons for this: a) excitement in the nerves going to the spinal cord , it's like increasing the volume of the TV from a comfortable level to a level where you feel uncomfortable and sick; b) a violation of signal processing in the brain, there is a so-called analgesic system associated with serotonin. By definition, the simplest mental phenomena are elementary experiences that arise as a result of the impact of various types of energy on the body from the external environment or from within the body itself. If the source of sensations is the body itself, then the sensations reflect the processes taking place in it and the state of the body at the moment. So if you are experiencing pain, then it really exists for you. Madness refers to severe mental disorders that are accompanied by psychosis- a breakdown in connection with reality without the ability to convince a person otherwise.The treatment protocol involves taking duloxetine (sometimes venflaxine or milnacipran), lyrica or gabapentin. As far as I know, there is no other FDA-approved treatment. Relief does not come immediately. As far as I understand, your fibromyalgia is associated with the spontaneous appearance of diseases of the musculoskeletal system without autoimmune diseases. I assume that you have had prolonged stress or workloads where you were very tired.
 
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