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Since Being Diagnosed With Parkinson's, I Feel Like My Symptoms Are Worse. Is This Just In My Mind?

Since Being Diagnosed With Parkinson's, I Feel Like My Symptoms Are Worse. Is This Just In My Mind?

I have had a tremor for years. It has become much worse in the last three years. I started to no longer swing my left arm while walking. My mom had Parkinson's so I figured it was time to get some tests done. I was diagnosed in January. Now I have trouble writing, have stiffness in my left leg and foot, pain in my left shoulder. I am a preschool teacher and for 25 years worked about 7 hours a day. The last two years, I have worked 8 hours a day 8:00-5:30. (And yes, every year kids ask… read more

posted March 27
A MyParkinsonsTeam Member

My hubby was diagnosed in 2012 at the age of 49. His main symptoms are fatigue, slowness of movement, stiffness, pain, balance issues, and tremor. He also has sleep issues that have ranged from insomnia, to daytime sleepiness, to disordered REM sleep where he yells and jerks in response to his vivid dreams. Some nights it's a wild ride at our house!

I would guess your exhaustion and stiffness are probably related to progression of your Parkinson's disease, since you said you've had tremor for years, though only recently were diagnosed. You've likely had Parkinson's for a long time and the recent changes you are experiencing are additional symptoms. I'm sorry you are going through this. It is very difficult to deal with the moving target of disease progression. My best advice is stay as active as possible, exercise, eat sensibly, and get good (or any) sleep whenever you can.

posted March 29
A MyParkinsonsTeam Member

No....it’s not just in your mind. I think once you are diagnosed you become much more aware of what’s happening to you. Like you said, everyone is different. I started with movement in my tummy and did a dance step back and forth. My hand writing was a mess and got smaller and smaller. I knew nothing about Pd back then. I was finally diagnosed, it took years, and things finally started to make sense. CL really helped me so much. But exhaustion is the worst thing I have ever had to deal with. I have read how others thought they were just getting lazy etc. I find that staying active and busy is best for most of us. It’s easy to say but very hard to do some times. Hang in there and be kind to yourself.

posted March 27
A MyParkinsonsTeam Member

For the longest time after diagnosis, I thought it was in my head, which led to feelings of guilt. It took several years to realize this was a function of the disease as much as tremors or other symptoms. That eliminated the guilt but still left the fatigue to deal with.

posted March 28
A MyParkinsonsTeam Member

By the way, Lori Ann,
I am 58 and retired last year. 🤗

posted March 27
A MyParkinsonsTeam Member

LoriAnne,
Your story sounds a lot like mine. I had tremors for at least 3 years before being diagnosed. They thought I had a pinched nerve in my neck, thought I'd had a stroke..... Tried all kinds of tests until I found a movement Disorder specialist who diagnosed me the first time I saw him.
I had the trembling inside my legs and everything. Once diagnosed, I don't think I felt worse, I actually felt better because we were doing something about it. It does seem like even though I was put on PD meds, the symptoms would come back stronger and we would have to increase meds. I had DBS surgery last Fall and have taken away most of my meds. I'm doing well, but even then, i have to increase my stimulation every couple of months. I hope this helps. You are not alone.
Blessings, Karen

posted March 27

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