I’ll get straight to the point. I have numbness in my hand muscles, loss of grip and I struggle to control my muscles, specifically in my hands and more recently in my inner forearms. In the beginning, I would notice symptoms first thing in the morning and when I would laugh, but as time has gone on, I don’t know what triggers them as I can have episodes at random times throughout the day without laughing.
The best way I could describe the sensation is the feeling you get on a rollercoaster or when you go over a hill fast, but of course, it's in my hand. My hands feel tingly and my muscles feel empty so I struggle to control them.
The earliest I can remember experiencing symptoms is around 6 years old and I am now 22. The numbness can last anywhere from a minute to a few hours, with the longest episode I've had so far being 6 hours.
I’ve brought my experiences up to several doctors since 2010 and until 2016 everyone dismissed me and just said they didn’t know what it could be.
So I had my first ortho referral in late 2016 and he through the idea of carpal tunnel syndrome out there and since then all of my appointments have been focused on treating the carpal tunnel despite me asking to look at other options because I did not feel it was carpal tunnel syndrome. I did develop what I thought was actual carpel tunnel in my right hand around March 2018 and those symptoms to me felt completely different to what I had been previously experiencing. I was doing my final university assignments so I was doing a lot of typing and handwriting at the time, which is what probably triggered my carpel tunnel.
So the symptoms for what I believed to be a carpel tunnel were pain in my wrist, my palm, closer to my wrist felt very tender; almost like I had an invisible bruise. My hand muscles would get very tight if I was doing repetitive movements and it felt like I had a constant cramp in my hand. My handgrip itself didn’t feel any worse, but my wrist was significantly weaker to the point that I could not get enough pressure on my wrist to wipe the counter, hold anything up for my than 3 seconds or even cut my own food.
I assumed this was a separate issue and since I was in a different city to the specialist I was initially referred to, I went to a new doctor. I ended up seeing 3 doctors before I went back to my ortho and despite the symptoms I described, they all looked at my hands and my wrist and said that they didn’t think I had carpal tunnel syndrome although something was clearly going on.
I was told to rest my wrist and use Ibuprofen for the pain and the inflammations, but this only offered temporary relief and until the New Year my wrist continued to be problematic, but it has been doing much better over the past 2 months.
When I went back to ortho, he suggested that perhaps I was bending my wrists and trapping my nerve so I was given wrist splints to sleep in and wear while I'm on the computer, but these did little to nothing to help my wrist.
I’m getting really frustrated with everything now because after years of being passed around to different doctors I am back to square one and still no answers.
I don’t remember the exact blood tests I have had done but I have had several over the years that have all come back clear.
I’ve had nerve conduction tests and they came back normal but I have been booked for a repeat test that is coming up in a few weeks time.
Today was my final appointment, I was referred to someone who I was told was a hand specialist and could take a better look at everything for me. I get there, come to find this doctor is a surgeon who was there to see if surgery was an option for my carpal tunnel. My carpal tunnel still flares up occasionally but I am happy to give it some more time to improve without surgery, as it has been much better lately. The doctor I saw today suggested that my symptoms sounded medical and he couldn’t do anything for me so my best option at the moment would be to go back to my GP and get a neural referral.
In the meantime, I figured there’s no harm in doing my own research and see if I can’t find anything that I could bring to my next appointment.
As I said above, I am 22, no health problems other than congenital heart defects, I am not on any medication and my symptoms have come and gone every day, usually multiple times a day since age 6. I am right handed but I experience the symptoms in both hands. I mainly noticed the symptoms when I first wake but they would usually go away as I go about my day. I also get symptoms when I laugh and until about 3 years ago that was the only thing that I noticed would trigger an episode but now they seem to come on randomly. My episodes now last longer than they did before and I’m noticing my inner forearm beginning to experience similar sensations in the past year or so.