I need someone to tell me I am not crazy

[nadickin]

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.

 

[sunkacola]

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.

 

[SBee]

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.

 

[bbbarnard]

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.

 

[Michele0816]

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.

 

[Borzov1982]

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.

 

[Borzov1982]

You don't have madness, it manifests itself differently.

 

[marmicros]

I don't know if you read my post regarding hypothyroidism. My cousin has Hashimoto's and your reference to your boyfriend's hugs causing you pain reminded me of her. She doesn't just write "love and hugs" in her correspondence, she writes "love and gentle hugs", for the same reason. Initially it might be fibromyalgia, but there is information suggesting that fibromyalgia can lead to thyroid disease. I wonder how many of us simply have low grade thyroid conditions which don't show up in blood tests. I wonder if our symptoms would be taken more seriously if men were as often affected as women by this auto immune disease. PS No. You are NOT crazy. Our medicos are simply unqualified and ignorant.

 

[Honeybea]

My name is Honeybea. I'm new to the forum and this is my first post. I'm like bbbarnard, I was diagnosed in September of 1999. I was newly divorced and newly married in 1993. I was ,at the time of diagnosis, a vibrant, happy woman. I had a husband who showed me real love. We lived in the country and had a quarter horse business and both worked for the state. I had some physical pain and no energy. In '99 I woke up and felt like I had the flu but only very mild temperature. It was a horrible experience trying to find someone that could tell me what was happening to me. I was beginning to think I was crazy!!! I did finally!! It's was so bad I had to give up my job, my life, my family, my horses, cats & dogs. My husband was wonderful.
So I've had many doctors over the years and many different medications. I just last week tried to tell my doctor he needed to put me back on my precious dose of Lyrica because my fibro pain was becoming unbearable. We actually argued!!! He said a woman my age was not supposed to be on that dose. I said to myself, here we go, another disbeliever. Eventually he agreed to the meditation but prescribed it 3 times a day. It's been centuries since I took it 3 times a day and an increase.
I guess what I'm saying is most doctors and most people believe it's a phantom disease.
You are going to have to stand your ground and don't stop until you find a doctor that actually believes in the disease. You will find friends and family that doesn’t believe it's real. It never ends, it is life long. You will find a good doctor and this form will be here when you need it.
I'm doing ok as far as pain, functional, but new dose and change in time taking it is causing sleepiness and low energy level.
I'm so glad I found this forum as I was beginning to feel it was hopeless. Thank you to all posters

 

[sunkacola]

Welcome to the forum, @Honeybea, and thank you for posting here about your experience. So many of us know how it feels to lose our whole lives because we lost our good health and we can strongly empathize with each other.

One thing you have going for you is a good relationship with your husband, from the sound of it, and you are incredibly lucky there, as I am sure you know. I'd give anything to have a supportive partner and not to be facing every day alone. But the loss of the life you loved and worked so hard to have is absolutely devastating.

Here, we all just want to support each other. Tell each other what is or is not working for us to make life a bit easier, asking each other questions and sometimes just coming here to vent and complain, and all of it is OK. The only thing we ask is for everyone to be respectful (and those who are not don't last long!), and never to post outside links on the forum.

I hope this forum proves to be useful for you. I know that sometimes just knowing there are others out there who understand, even if they are far away in distance, can really help a person not to feel so alone.
And I really hope you can find a good doctor who doesn't dismiss you like that. Have you considered going to a pain specialist, if there's one in your area? I have found that they will not dismiss a person who says they have fibromyalgia because they are better educated in pain conditions than many other doctors are.

 

[Ian waxman]

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.

Hi nadickin.sorry for the torment you’re currently facing.you’ve been diagnosed with fybromyalgia and the complete prat of a boss should have no choice but to make adjustments for you.have you looked into this?if the pain is driving you up the wall and you say you have a understanding doc go back and ask for stronger meds and for him to write a letter to your school explaining your situation.they can’t argue with a doctor.you need timeout as sunkacola as said to get yourself to hopefully a more comfortable position.fybro takes no mercy and can be a cruel condition which I’ve had for 30 years and it’s been a rollercoaster.please look on this forum you will find posts you might connect to.we are all in this together and to help xx