Day 7: What I've been through

[Wcs_Michfan]

Where do I even begin.

In 2017 at the age of 44 it all started. At the time, life going well, getting ready to retire early which I had planned my whole working life. Then 1 month before retirement the shit hit the fan. At the time, in great shape, marathon runner, etc. - hadn't even been to a doctor in years.

Started with crazy fatigue one day - couldn't pull myself out of bed until noon - totally unlike me. Neck pain, shoulder pain, numbness that eventually moved to my legs which scared the Jesus out of me. Around the same time, I started to develop muscle twitching. So about 4 months into this saga I went to a recommended internal medicine doctor. He saw the fasciculations and said and I quote "my concern is we could be looking at ALS here as your grandmother died from it." Well - that put me into a VERY DARK PLACE. One week later (after sleeping a total of about 4 hours) I was at the Mayo Clinic checking to see if I was going to die the worst way possible. Mayo quickly took ALS off the table. Of the course of the next year - I spent a total of 2 weeks at mayo but they were never able to nail down exactly what was going on. Small Fiber Neuropathy was one of their guesses - but the tests came back negative. Their final guess was I had "an infection in 2017 that caused an auto-immune reaction." - again, with little to no proof. I actually appreciated their honesty, but it left me to figure what was going on, on my own.

So then I started to go on a quest to find what was going on. I pursued Lyme disease and got a diagnosis by a renowned Lyme doctor in San Francisco. But Mayo didn't buy it. So who do you believe? I was treated for it - but nothing worked. At the time, my anxiety (looking back at it now) was through the roof.

Fast foward - after 3 years looking for an answer I finally gave up and went back to living the life the best I could. But it's been a gradual decline over the following 5 years. Foot pain for over a year. No answer for it. And this year has just been awful. Developed horrible knee pain and was diagnosed with a torn Meniscus by 2 different Dr's - both of whom said I needed surgery and I'd be back to "normal" in a few weeks. So I did it in September. Recover has been a nightmare as my symptoms continue to get worse and they don't know what's going on.

Anyway, such a long story, but I'm on day 7 of the program so wanted to post. thank you.

 

[Joulegirl]

Welcome! I'm glad you stumbled onto this program. The fact that the doctors did not find anything wrong with you sounds like it is TMS. Especially where you have pain moving around and changing. And surgery not taking care of the pain. The program is wonderful. Just go through it and don't put pressure on yourself to try to heal in those 42 days. Instead focus on the journaling questions and learning about yourself. In 2017 you had a major life change that brought on the symptoms. That's a good place to start from.

 

[Diana-M]

Gosh, what a sad story! I’m so sorry you’ve been through so much pain, fear and anguish. And you pursued all the best medical treatment available. What else were you supposed to do? We are all raised to believe that doctors can heal us every time. But the problem is, they’re missing a huge piece of the story. Our brains are part of this picture. But at last you’ve found a place that has the answers for you. And it’s just a matter of time until you get better. That’s excellent you’re doing the structured educational program! Perfect start. There is hope. I promise.