I'm 20, with widespread undiagnosed pain. I have a high pain tolerance and have been dealing with it since I was a teenager, but over time my pain level has steadily risen, to the point now, that it is interfering with my university studies.
One thing that has kept me going all this time is Swing Dancing. I'm part of a performing team, but the pain has gotten bad enough that I'm terrified I'll have to stop dancing permanently. Some days debilitated and get exhausted just walking around my room, or taking showers. Or I fall down because my legs get weak and just collapse under me. Other days are a bit better, and I can dance through the pain.
It's just the fact that it keeps getting worse and I don't have a diagnosis that scares me.
Arvid, I'm sorry to hear you are struggling with symptoms interfering with loved activities. Is it possible to take a break from the dancing, or to be a range in, just until you get your pain better controlled? I'm not saying give it up completely. I understand being so exhausted just getting through a shower, but I'm also 54 with multiple causes. Maybe you can fit shirt breaks into the routines to help. Is it possible to wear flat shoes, or maybe get some supportive orthotics for your shoes? I don't know much about dancing requirements. Lol I'm praying you can get a doctor who will recognize and help your symptoms/disease issues. Hugs! 🙂💕🙏🌼
Avid, I know how you feel! I'm at the end of the diagnosis stage. I have chronic migraines and small fiber neuropathy. I have trouble holding things and get winded very easily. I had to modify the way I do things (like sewing, painting) but did not give anything up completely. I hope you find/have a great doctor that can treat you.
Cdngirl, I'm also having trouble holding onto objects. I'm dropping things and can no longer open new bottles or jars. I have tingling & stinging sensations. I get SOB with the least activity. How did they diagnose your small fiber neuropathy? I have neuropathy in my hands & feet.
Arvid, I am sorry you are having such horrible pain. I've been in pain for over 25 years and have had 29 surgeries in 23 years and understand. I'm 50 years old, love music and no matter how bad I feel if i hear music it's gonna make me move!! I swing dance, Latin dance, country, etc.. I also will ride my horse when I can. Never ever let the pain take your passion from you!! You will never stop dancing as long as you tell yourself you're not giving up!! So, you swing, Girl.. Get out there and Lindy Hop your heart out!💕🙏🏻🌻
Flappys, they did nerve conduction testing as well as EMG tests. Those tests were pretty much normal. The dr then did a different test with a safety pin. I couldn't feel that it was sharp until above my elbows and midway up my calves. I also had a hard time distinguishing between hot and cold in my hands and feet.
I spill stuff all the time as well. My husband and I have begun to laugh about it. It's either that or cry. I've had too much crying this year. I was only diagnosed with small fiber neuropathy on March 4.