14 Months of hand pain, no diagnosis, no treatment
I've been dealing with severe hand pain for 14 months now and am still waiting for a diagnosis and treatment so wanted to come on here to see if anyone had any similar experiences or tips.
About me: 34, female, living in the EU
It all started 14 months ago, after driving for 2h to the airport and waiting around I got onto the plane, wanted to open my bottle of water only to not be able to do because of excruciating pain in my right hand. I put nonsteroidal anti-inflammatory (NSAID) gel on it for a few days which seemed to bring a little bit of relief but after returning from my holidays the pain got worse (couldn't hold cutlery to eat) and eventually also occurred in my left hand.
I had previously had pains in my thumbs before from typing too much but that always came on gradually, not as suddenly as before, and it always went away after using the gel and resting. The only unusual thing that happened in the week before the pain emerged was that I had a CT scan done with contrast as they had found several lesions in my liver on an ultrasound of my kidneys. They all turned out to be benign (it took a few more MRI's first though).
Anyway, since then I have had
– an X-ray and MRI of my hands
– MRI of my C-spina
– steroid injections into my hand nerves
– steroid injections into my thumb muscle
– tried gabapentin (Lyrica for a month; now on Neurostil)
– various gels
None of which brought any relief, although the last injections in my thumb did seem to make that hand feel less sore for a few days but once I started using my hand again it was back to being sore.
I also saw a rheumatologist and a pain specialist. The rheumatologist (which I saw very early on) said there was no signs of any arthritis. The pain specialist is currently trying different injections and medications (as mentioned above). My bloods have been fine, I did test positive for HLA-B27, have had a Vitamin D deficiency (B12 for a long time too but it's been fine since before the pain happened), and only a slight elevation of inflammation markers.
I'm honestly just so exhausted from having to be in pain every day.. I can't do anything without it causing me pain. Cooking, working, driving, even brushing my teeth is hard.
I usually wake up with fairly stiff, sometimes swollen, usually sore hands. It comes and goes throughout the day but heavily depends on what I did the day before. I have noticed a small bump on top of my right wrist and something similar on the side of my left wrist. Barely visible but you can feel it when rubbing my arm. Other than that there isn't much to see, other than the swelling and some redness from time to time.
I've been off work for 3 months now and the rest has not made much difference, but of course since the pain is in my hands it's impossible to not use them at all.
Has anyone had any similar sudden pain that didn't go away with rest? Do my symptoms sound similar to yours? Are there any tests you think might be useful? Please let me know, I really want to get my life back..