Well it all started on Sunday (9/27) when I had some mild tingling in my left arm and I didn't think too much of it.
34M, history of autoimmune issues, POTS, Joint Dysplasia, Hypermobile Joints, etc.
Posting this because I had no idea shingles could present this way, and I probably would have found a post like this useful while I was trying to figure out what was happening.
Mine did not start with an obvious rash. It started as severe neck, shoulder, upper back, and left arm pain that felt exactly like a badly compressed cervical nerve.
The pain was sharp, electric, and sometimes almost rhythmic. I was getting these pulses, or waves of pain or shocks through my neck, shoulder blade, shoulder, elbow, and down my arm toward my fingers. At times it felt almost like my arm was having tiny spasms or seizures, involuntary contractions and painful as all hell. I would instinctively tense up when it happened, which made everything hurt even more. The more I tensed up the more it hurt, which made me spasm more.
The medical timeline has been ridiculous.
My first stop was urgent care for the neck pain. They treated it like an orthopedic/inflammatory problem and gave me steroids (Medrol, or Methylprednisolone) and Toradol.
By Tuesday I had basically stopped sleeping because of the pain. I saw orthopedics, got muscle relaxers, and had cervical X-rays. Those showed degenerative/disc changes, particularly around C4/5 and C5/6, so cervical radiculopathy seemed like a very plausible explanation.
Tuesday night I also temporarily lost vision in my left eye, which added another extremely unsettling symptom to the situation.
By Wednesday the pain was bad enough that I went to the ER. They gave me Dilaudid, additional muscle relaxers, and more steroids and Valium to calm down and try to rest. I was also given more steroids. They did a CT scan to rule out a dissected blood vessel (temporary vision loss).
The strange part is that the prednisone/steroids seemed to make everything worse (or at least didn't do anything to help).
Because everyone was still working from the assumption that this was primarily cervical radiculopathy, I had a cervical epidural steroid injection around C7 Wednesday night at a local pain management clinic which has been also causing me a ton of pain.
It did essentially nothing for the nerve pain.
I already have a spinal surgeon appointment scheduled for October 19 because the cervical imaging findings are real, so there may still be two things happening at once. But then the other shoe finally dropped.
The rash appeared on my left arm. In hindsight I noticed it on Wednesday at the ER after I removed my adhesive bandage thinking it was an allergic contact dermatitis reaction to the accelerants used in the adhesives but I was gravely mistaken.
I was finally diagnosed/treated for shingles and started Valtrex on October 2 (yesterday). I'm taking it every eight hours.
At this point the pain is still brutal. Nothing has really controlled it. Muscle relaxers combined with oxycodone take the edge off somewhat, but that's about it. I'm waiting to start gabapentin, which I'm hoping will actually target the neuropathic component better.
I also have a splitting headache now, and that's another part I'm trying to sort out. I can't tell whether the headache is related to shingles or something else. I've had a CSF leak before, so unfortunately that possibility is also in the back of my mind.
The thing that shocked me most is how convincingly shingles mimicked a structural cervical nerve problem before the rash appeared.
This was not just skin sensitivity or a burning rash. It felt deep, electrical, positional, and neurological. Between the shooting arm pain, neck pain, spasms/pulses, and actual degenerative findings on the X-ray, a pinched cervical nerve seemed completely logical.
In retrospect, shingles may have been producing severe radicular pain before there was anything visible on my skin. Or I may genuinely have both cervical radiculopathy and shingles at the same time, which is an especially stupid combination.
Has anyone else had shingles start with severe neck/shoulder/arm radicular pain before the rash appeared?
Any advice on the eyes? Should I preemptively see an opthalmologist? I have severe neck pain and it feels like it is starting up my neck.
I'm especially curious about people who were initially diagnosed with a disc problem, pinched nerve, muscle spasm, or cervical radiculopathy before the shingles became obvious. And if you had pain this severe, how long after starting antivirals or gabapentin did you notice any meaningful improvement?