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Does PTSD or past trauma affect your LEMS?
Hi All!
I’ve read a lot of research on trauma, especially in childhood and early adolescence. Research suggests that trauma can cause our body to live in the “fight or flight” stage for a prolonged period.
From personal experience, I believe the two are deeply linked together. Although I may have had a genetic predisposition to autoimmune disease, I know the events in my late childhood and early adolescence caused a chain reaction that eventually manifested as multiple autoimmune diseases.
Did you also have trauma in your life before your LEMS diagnosis? Do you think that trauma/PTSD is linked to your diagnosis?
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9 Replies
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My journey prior to being diagnosed was definitely one of obstacles that could add to my autoimmune disease. </div><div>
In unhappy marriage, work-a-holic for many years. My dad and son passed away in 2001. My husband did not deal well when I asked for divorce. He burned down our home and tried to kill me. </div><div>
In 2009, awarded custody of my deceaseds son, boy. In 2014, grand jury issued indictment for attempted murder of my deceased sons wife, the victim being my deceased’s son, best friend in the Army. Worked with State and Federal law offices for 5 years, and she went to trial in 2015. Was found guilty and received 48 years. In 2017, I started having episodes that went unexplainable, referred to many specialist who could not find a reason for my issues. In 2021, while moving from Colorado to Texas, I had issues with double vision and completely blurred, unable to drive. I ignored the symptoms as I felt my Drs in Colorado thought I was making my illness up. So, I did nothing for a year. In 2023, many issues cropped up and I had three Tia’s in the same day, lost eyesight each time. Ended up at specialist office who ran different types of tests and identified that I had LEMS. I personally think the physical, financial and emotional trauma I endured plays a major part with my current physical condition.-
Hey @Fritz
Thanks for sharing with us! You have quite a story and it was really brave to share here! You really are a resilient trooper! I’m so sorry you went through all of that!
I personally believe trauma is a huge link to our LEMS diagnosis, or any autoimmune condition. I hate that your doctors made you believe “it was all in your head” for a year, I went through something similar during the early days of my illness before I was diagnosed, and I’ve heard that a lot of others have as well unfortunately.
I’m proud of you for continuing on and advocating for yourself! How is your LEMS these days?
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Hi all!
I was pretty much healthy for the greatest part of my life. In May of 2020 had a work place accident. Within 2 day my whole body swelled up. Fingers so large that I could not bend them. Feet so large you could not tie shoes. My PCP tried manyyyyy different meds in the first 30 days (all while still continuing to work). She gave up on me & had me go to an Internal Medicine doctor July 1, 2020. He told a first look at how swollen I was, said you are going to hurt yourself & wrote me out a medical leave letter (have not been back to work since). By this time more & more symptoms were showing up. He referred me to multiple other specialist by Dec 2020.
The end of July 2020 the Rheumatologist found Sarcoidosis in my lungs & had me on medications for that along with Prednisone that added 70 lbs to my weight. By the meds were not working even though I was on high dosages.
I got other specialists that tried 3 rounds of physical therapy. The therapists found the more movement & exercises I do the worse my weakness, fatigue & balance got. They stopped the physical therapy in Spring of 2021. One specialist tried Cortisone shot in April & May of 2021. Those helped a little bit for about two weeks. My symptoms & issues were still getting worse. For the most part was becoming a hermit in my own house. Some medical appointments were being done by Zoom calls because it was so difficult to get me to some of the doctor offices. By August of 2021 I was sent to a Neurologist that did an EMG. The results had abnormalities. I became a patient of that Neurologist in January of 2022. He did a alot regular & special blood tests. He also did a single fiber EMG that showed alot more abnormalities. He then said you have Myasthenia Gravis & Started me on those meds. They did not work & i was getting worse. He had more do 5 rounds of Plasmaphersis. I crashed while they surgically put the port in & took it out. I crashed during 2 of the Plasmaphersis sessions had got worse. By now the specialty blood work of back & he told me that I have LEMS. He got me going on Firdapse & IVIG Infusions.
It has been an up & down roller coaster ride since.
Is trauma and stress tied in with LEMS ,I think absolutely. With LEMS had do you get away from stress. In my opinion you dont. Dealing with insurance companies, doctors, procedures, medications, Pharmacies, your body hating anything that you do, family telling you that you are faking, lost of job and wages, etc. Stress and trauma hahaha. You seam alone and nobody understands.
It’s a very very hard life dealing with LEMS for me.
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Hi @Dean !
Thanks for sharing your story with us!
Wow, I’m so sorry you went through that with your first doctor during your diagnosis! I’m glad you pushed on to see the second doctor and get on disability! It sounds like you had a rather long journey to your diagnosis like many of us here, I wish this wasn’t the norm! I’m proud of you for continuing on and eventually getting your diagnosis.
I agree with you about LEMS and trauma/stress! I still haven’t managed to find a way to completely lower my stress.
Having LEMS is like having a second job except you become the CEO, manager, and staff all in one! I think we all have ridden or are riding the roller coaster with you. Sometimes we have good days, and sometimes we have really bad ones… the important thing to remember is that you aren’t alone! We have this wonderful LEMS community and although we all are miles apart, we are here for each other!
We have monthly zoom meetings and would love to have you join us! Our next one is this Friday, the 27th at 5 pm EST!
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Here’s the schedule for the meetings and you can also find the link to join the meetings here 🙂
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Freeze to Thaw.
Resonance breathing and belly breathing are great tools. Loving ourselves and being gentle is the way. It can be a lifetime of learning we are not a project to manage. Yoga Nidra is healing.
https://bayareacbtcenter.com/overcoming-functional-freeze/
https://monarchwellness.com/trauma-responses-in-the-body/
medium.com
Breaking the Ice of Stress: How Slowing Down Helps Us Thaw the Body and Mind
Recently, I found myself in a situation where stress completely overwhelmed me. I was immersed in my studies in a new field, facing…
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Thanks for sharing these resources with us!! 🙂
I used to practice yoga regularly and I also found it helped me!
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Yes. Thankfully there is yoga nidra, lying down with relaxation too. It is my go-to when I can’t do as much yoga during hard times. Have you heard of it?
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I’ve tried it a couple of times and did like it although I can never fully turn my mind off like it needs to be. 😅
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