Hi, @christinasuit - it is indeed challenging that in addition to your diagnosis of early adhesive arachnoiditis you now have a diagnosis of shingles. I've had shingles before, and it is indeed painful and bothersome. I'd suggest you may want to check out and post in this long-standing Mayo Clinic Connect thread on shingles https://connect.mayoclinic.org/discussion/shingles-on-face-and-in-eye

Your situation sounds like what my wife went through several years ago and is still fighting. Her immune system was apparently lowered (according to a couple of doctors) by being on a steroid for another medical issue for too long of a period of time. This brought on the shingles virus which even though she caught quickly she was in intense pain for 3 or 4 months. Like you she was just about bed ridden and this is what I want to highlight to you.

Her shingles pain seemed to be subsiding after 3 or 4 months then it got to a level where it stayed and has been there for 8 years now. Our conclusion is that something else kicked in and the theories are:

1: By favoring one side while being bed ridden she developed a nerve entrapment issue
2. By being inactive for such a long period of time she developed myofacial issues

Both of the above results in symptoms that experiences and can be easily researched on the Internet. So my comment to you is to keep as active as you can and don't favor any particular positions while recovering. I can't say for 100% this is my wife's problems but with all that she has been through these two conditions seems to make the most sense.

Thank you. My father had shingles when he was in his fifties, and although he was a healthy strong man, he suffered for quite some time with the pain. I think shingles got him down more than anything, except for terrible arthritis in his hands and back, and then of course asbestos lung cancer that took him from us. I’m glad that your GP prescribed pain medication for you, but if the laws in your state prevent him from prescribing the amount you need, is there a decent pain management doctor near you, or do you hate going to them as much as I do? (Drug test each month is so demeaning). Hopefully the blood work will show a treatable form of arthritis and, if your GP can’t help, you can see a good rheumatologist. I also try to do stretches and some of the exercises I learned in physiotherapy that can be done lying down with a big ball under my legs. I have been having terrible muscle cramps in my legs, also, and I resort to using biofreeze cream because of the cool sensation, but it doesn’t help. I don’t know if muscle relaxers would help or not, but I think my cramps are due to a lack of use. This is upsetting, and it motivates me to try and keep moving around a little more, but the reason I have the problem in the first place is because lower extremity movement exacerbates the anal nerve injury pain that I have. I can totally understand your frustration, but don’t give up. I will keep you in my thoughts and prayers.

I am so very sorry to hear about your problems. I have been declining, as well, for the past five years. My problems did not begin with arachnoiditis, though. I had a cervical spine surgery that resulted in spinal sensitization, in 2003. That was nothing, however, to compare with the pain, weakness, and lower extremity atrophy that I have faced after a surgeon put a screw in my sacral nerve roots leading to cauda equina syndrome and arachnoiditis. Each day is a struggle for me and my spouse, as it is for you and your spouse. My heart aches for you, and I am in disbelief of how the evil doctor refused to change the radiology report after the other two doctors sent a letter stating that they saw arachnoiditis. If anyone deserves disability it is someone with arachnoiditis. I wish I lived near you. I would come and we could come up with a plan to make the radiologist's life a living hell like ours.