No One Is Listening and I Feel so Alone!

In 2017 I started getting these strange muscle contractions in my back on the right flank. I am a nurse so tired muscles come with the job, and I just thought I was working too hard for too many hours. I honestly did not give it much thought. What I was calling at the time a muscle spasm would, last for hours and no matter how I stretched or moved it never would relax it would just get worse. At one point the pain got so bad that I almost passed out from it. I got cold sweats, felt dizzy, couldn't stand, and was so hot that I felt faint. I was at work when it happened, and they sent me to the emergency room (ER) to get evaluated. The ER doctor said I must be dehydrated and told me to drink more water.

Those spasms had moved through my body

Fast forward a few weeks and the "muscle spasms" now included my left side in the front right over my ribs. They were not continuous, just off and on and mostly when I was at work. I hate going to the doctor's office, but I felt it was time to seek medical advice as it was not getting better. My primary care physician (PCP) insisted that I had a vitamin deficiency (even though all my blood work showed I was normal). I was put through this terrible vitamin regiment that they changed up every few months or so as it was not helping. I was still getting worse.

A nurse noticed something was different

One day, I was driving to work. I got faint and almost passed out behind the wheel of the car. I got the worse chest pain I have ever felt, and I thought I was literally dying. I went straight to the closest ER. I thought I was having a heart attack because the pain in my chest was so severe. Of course, they cleared me and said I was not having a heart attack and after about 4 more episodes, 3 ER visits, 1 911 call to paramedics, I finally found a nurse that said it sounded to her more like I was having a spasm of my esophagus and not a heart attack. Give it to the nurse to listen to the patient. However, they did a complete cardiac work up including stress test and cardiac cath just to be sure. My heart was fine. Yet I was still having the same symptoms. On my final follow up with my cardiologist where he confirmed that there were no issues with my heart, he asked me to explain my symptoms. When I was done explaining my symptoms, he said I should go see a neurologist. He wasn’t sure but he strongly felt the “muscle spasms” were from a neurological issue. Went to see the neurologist. I even showed him a video that I took of my muscles quivering in my leg in between the contractions. He is the one that told me that it was not muscle spasms but more like muscle contractions. The pain is so severe. It is like my muscle is too small for my body. It hurts to move but it hurts to not move. The neurologist scheduled a nerve conduction study, but sadly my insurance changed again and I could not get it done.

I decided to just try and work through it

2020 (before COVID hit) – at this point, I am already ready to give up. I have hit so many dead ends. I have changed PCPs so many times because my PCP always does the same thing with the same results and then gives up and just wants to give me pills for the symptoms or treats me like I am medication seeking. At this point, I am losing sleep from being woke up at night with muscle contractions. I can no longer enjoy kayaking because the contractions will hit while I am in my kayak, and I just have to sit there in pain until it passes. I decided it was just part of my life and just to ignore it. I was going to do what I could and do not worry about the things I could no longer do. I was still able to work if I spread my schedule out. I could do 2 12 hour shifts in a row but not 3. I would spend my time off resting my muscles. I had already been through physical therapy, which did not help. I had one PCP who thought my issues were from tired muscles and put me on bed rest for a month. It helped some, but still was getting muscle contractions. Now they were affecting every muscle in my body. Back muscles, leg muscles, arm muscles, stomach muscles, abdomen muscles, large muscles, and small muscles. I found muscles that I did not know I had. But it was strange, I would have a few weeks of issues then nothing for a few weeks. I really thought I was going crazy. The doctor’s kept telling me there was nothing wrong, but I knew that there was something not right. More time passed and no answers were to be found.

The things I tried to stay comfortable with stopped working

Now I am a nurse and there is nothing worse than when a patient argues with a plan of care because they did a google search and think they know more than the medical professionals they are paying to see. However, I am not a nurse of my own body. I am a person who is living with this intense pain, and no one can seem to determine what is causing it. It is not from lack of vitamins. It is not from lack of exercise or too much exercise. It isn’t Lime disease (yes one PCP ran a Lime Disease test on me). I have had my blood tested for everything under the sun and everything comes back negative. I have gone through Flexeril, Robaxin, and now am on Zanaflex because the doctors just want to throw pills at the problem instead of finding out the root. Sadly, the muscle relaxer pills do not stop the muscle contractions. They do help make them a little milder, but after a few months stop working completely.

I began to research the symptoms I was feeling

After not getting anywhere with my PCPs on a diagnosis and having my last one just totally ignore my issues, I finally started doing my own research. I researched everything I could find on reputable medical site on causes for muscle contractions, muscle spasms, muscle weakness, and the host of other symptoms that I was dealing with. I came up with a couple of possible diagnosis and tried to talk to my PCP about them. I got given more pills and she just ignored me. The only diagnosis that I found that fit everything including the progression of the muscle contractions was MS. So I stopped looking. I stopped asking questions because I did not want to be diagnosed with MS. I felt if I ignored it like my PCP did it would somehow go away, and I would get better. Denial was my best friend.
However, it did not get better. Since 2017, I have slowly watched my body betray me and turn against me. I have gone from being active and living pain free to having days that I can barely get out of bed. I no longer sleep well because I am up every night with burning feet, sharp stabbing pains in my feet, muscle contractions that are so painful that I wake up screaming and wake my husband. I go to bed tired. I wake up tired. I try to smile and ignore the issues and pain because I hate complaining and I am tired of hearing myself say, “Oh it is nothing. Just my muscle spasms acting up again.” I am at the end of my rope. My memory is so bad that I couldn’t even write my story with actual dates and times, just approximate years.

Today was the last straw

Today though was the worst. Today is the last straw. I woke up this morning after having another fitful night of sleep with foot pain and muscle contractions in my legs to not hardly being able to stand. My legs were so weak, I was not sure I would be able to get up at all. I had dogs to take out and work to get to, but I could not hardly lift my arms and my legs felt like Jello. I just want to scream. I want to yell someone please hear me. Someone please listen to my symptoms and help diagnose me and even if there is not a treatment, at least I will know what is going on and that I am not crazy. I work for a surgeon. He loves puzzles. I wrote up my medical history for him and asked him if he could tell me what might be wrong with the patient. I did not tell him it was me. He said it was not his specialty, but he would ask some colleagues and get back to me. A week later he came back and said it was text book MS. He recommended that the patient go see a neurologist and get and MRI. He said it sounded like it was getting worse and needed treatment. So there I was with two specialist that have nothing to do with MS telling me what no other physician would tell me.

I'm hoping this new PCP will be the help I was looking for

I have a new PCP again. I go see them next week for the first time. I sent them the medical history that I wrote up for the doctor I work for to see if they see the same thing he saw. This is my last attempt. I cannot go through starting over at another new PCP again. I cannot go through the vitamin regiment and changes that they want to try to fix the issue. I cannot go through being taken off all my medications to see if it is a side effect of one of them (even though I tell them that the medications were prescribed after the symptoms started). I cannot afford to go to physical therapy again, nor can I afford to take time off from work. I do not want them to change my muscle relaxing medication again. I can’t get tested for diabetes again because they request records from my other doctors, but they never read them. I finally was able to get dressed for work today and take my dogs out. I even drove to work and made it through half the day so far. I feel less weak now than this morning. Yet, I still feel alone.

I just want to be heard

I have a wonderful husband that is very supportive, but he hates when I talk about my symptoms because he cannot fix it or change them or help me. So I rarely talk to him about it. I try to keep a brave face for my husband, my children, and my co-workers. Even now as I am sitting here writing my story to share with you, I am feeling the world spin literally – having a dizzy spell even though I am sitting down. I am doing my best to try to keep from getting depressed but today I just want to go to my room and cry. I want to scream. I want to be heard. That is when I found this group. I hope that being around others that are dealing with this will help me. I can’t keep going it alone. I can’t keep being the strong one. I need someone that is there for me. I need a doctor that will listen to me. No my research does not replace your degree, but I know my body better than you do, and when you do not want to listen to me tell you my symptoms, then how are you going to tell me what is wrong? I just want to be heard. I just want a diagnosis. I just want peace and it would be nice if I could get a good nights sleep too.