14 Months of hand pain, no diagnosis, no treatment

Posted by lisaF @lisavdh, Sep 16 3:14am

Hi all,

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..


Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

My sister had a similar issue and it was caused by her medication. She had a UTI and she ended up in the hospital. She is very thin and her hands looked like hot dogs. She was in excruciating pain. They sent her home with an IV and she was in such pain, she called the "on call" doctor. She was the one who said it was probably sulfur. No one had thought to check it. The doc said her medication/antibiotic for the UTI had sulfur in it and the doc said to stop taking the drug. The pain and swelling went away! She never had a problem with it before. I took Bactrim which has sulfur in it and got a really, really bad rash all over my body. My sister is 80 and I am 78. You are young but it might be worth having your medications checked out.
Good luck, Joan


@lisavdh Lisa, welcome to Connect. I have had a similar experience with hand and arm pain. It is good that you had imaging of your hands and cervical spine because those can be a possible source of similar pain. It's interesting that the steroid injections helped a little bit by decreasing inflammation in the area where it was placed, so that tells you something. What commonly is missed by doctors for these symptoms is thoracic outlet syndrome.
I went through carpal tunnel surgery, and it didn't take away my wrist and hand/arm pain. My hands were turning blue and getting cold, and I had trouble grasping things. I was dropping silverware and having trouble controlling a pen to write.

TOS (thoracic outlet syndrome) causes entrapment of the same nerves that exit the spine and travel to your hands and it can occur in several places in the chest and neck such as scalene muscles, between the collar bone and rib cage, and under pec minor at the arm pit. There is a large bundle of nerves and vessels that gets compressed. This can be a repetitive use type injury similar to Carpal Tunnel, and it can also be related to a spine injury. Posture affects it, with poor posture of slouching with a forward head position and rounded shoulders with forward arms causing worsening symptoms. the front of the chest gets too tight and the shoulder blades get pulled forward around the side of the rib cage and stay there. They belong on your back where you can squeeze them together. TOS causes the blood supply to be cut off with raising the arms or turning the head. Diagnosis can be done with Doppler studies, or a doctor listens to the pulse and manipulates arm position or head position and finds that the pulse stops. At Mayo, they tested me in a vascular lab with tiny blood pressure cuffs on each of my fingers.

I have TOS, had Carpal Tunnel release surgery, and I had a cervical fusion because of spinal cord compression, so I had multiple issues that could create overlapping symptoms. Some people have an extra rib at the top called a cervical rib that limits space. I would think if you had one, your cervical imaging would have found it. Surgery for TOS is often not successful because surgery creates scar tissue that adds to the problem, and TOS is a problem of tight tissue. I have been in physical therapy for a few years for TOS and doing myofascial release which helps relieve the tightness. Having overly tight trapezius muscles also contributes to pain, and I just stretched mine the other day and relieved my arm pain doing this because my therapist has taught me some things to do.

Here are some links that may be helpful. The first is a link to MSK Neurology that has articles written for medical professionals by a provider in Europe, so that may be of interest. The author also has a facebook page and he posts some case imaging and information that you may want to follow. There are many good education articles there about physical issues with spine, pelvis, neck, shoulders, etc.

– How to truly identify and treat thoracic outlet syndrome (TOS)
Posted on February 18, 2018 by Kjetil Larsen
Here is our Connect discussion about Myofascial Release which is my treatment recommended by my medical professionals for treating TOS.

Groups/ Neuropathy
– Myofascial Release Therapy (MFR) for treating compression and pain:
Have your doctors considered TOS as a diagnosis? Have you heard about Myofascial Release before?


May be a ridiculous idea, but could it be gout? Or did all your various blood draws and x-rays rule that out? Hope you find the solution soon. J. George

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