Is it Neuropathy or Fibromyalgia?
Neuropathy or fibromyalgia? These two conditions are not uncommon, in my experience, with my own history and that of many others in the hep C community. Some of us are diagnosed with one or the other, or both, as I experienced. They are different in ways, but they are similar in other ways too.
Several years before I was diagnosed with hep C, I was told I had fibromyalgia, based on the symptoms alone. As there is no physical test, as I understand, like we have with neuropathy, the diagnosis was because of bouts of nerve pain in all sorts of areas, with neuralgia in my face being far too regular, but not limited to that at all. It affected my back, shoulders, neck, and a variety of places. I was sent for physical therapy, but to be honest, it never really helped at all. I just had to grin and bear it, but there was at times anything but grinning going on, and you may understand if you have had the same. This was an off and on thing for years, with no solutions offered; I even wondered if the doctors wondered if I was making it up, but no I wasn’t at all.
Older hepatitis C drugs made my neuropathy worse
Making a long story short, some years along, I was diagnosed with hep C. That became the only health concern I had, and I wanted it gone. I was treated, I was finally cured 11 years ago. While in treatment with interferon, I developed the burning pain that is so familiar to neuropathy sufferers. Again, this diagnosis was based on symptoms, despite there being actual testing that can determine nerve damage that causes the pain, tinging, and numbness primarily in feet and hands (but not exclusively, in my experience) when in a flare.
The neuropathy worsened after treatment and meds were prescribed. They were awful in terms of side-effects and helped only slightly with the neuropathy pain. I decided I needed to see a neurologist and really dive deep into what was affecting my quality of life terribly. I learned that one can have a skin biopsy to look for nerve fiber damage, and there was small nerve damage, which was no real surprise.
Starting B12 supplements
Something that had occurred some months before the biopsy was that my GP tested my B12 levels and found them to be deficient. He suggested a supplement daily, which I started. By the time I was in for the next visit with neurologist, I had began to notice improvement in my neuropathic pain. I had forgotten about the introduction of B12 supplement, and when going over any changes in my diet or activity and meds, the neurologist landed on the B12 as something that if a person was deficient, they could experience more problems/ pain.
I am not saying that you should start using B12, and that is a conversation you may want to have with your physician or neurologist. You may be deficient, and you may not, and it might not make any difference for your situation. I think it is worth having that conversation, because we just never know. I still get bouts or flares, but nothing like I did. As far as fibromyalgia, I am unsure I ever had it, and wonder if the neurological problems I have experienced were in fact caused by hep C, and the interferon only made it worse.
Does reading hep C patient stories aid you in your journey?