Occipital neuralgia
I have had inflammatory arthritis with HLA-B27 since I was 3. I am now 75. I thought I had been through it all including pretty bad PSA. However, I was just diagnosed with extremely painful occipital neuralgia. Anyone else experience this? Any advice?
Ouch,
! Occipital neuralgia sounds incredibly painful! I hope any of our community members here with experience can connect with you. While I couldn't find anyone here specifically with occipital neuralgia, we do have some community members here who've experience other types of neuralgia. I'm sharing this story about a community member who experiences Trigeminal Neuralgia https://psoriatic-arthritis.com/stories/disability-surgery-positive. And this article has some community from community members who experience neuralgia due to shingles, https://psoriatic-arthritis.com/living/shingles-pain.
Has your doctor been able to give you any ideas for pain relief? Nerve pain can be incredibly difficult and frustrating. If your regular doctor isn't helpful, it might also be worth seeing if a pain management specialist is an option for you. Some of our community members are able to get some relief with the help of these specialists. Here's an article with more information on them as well, https://psoriatic-arthritis.com/answers/pain-management-specialist.
I do hope that you can get some helpful feedback! Wishing you a gentle day. -- Warmly, Christine (Team Member)Thank you for your kind reply. I won’t take pain meds, so my doc gave me gabapentin. It helps a little. I am using ice for swelling and heat for comfort. I also have a neck massager and that has helped a lot.
oh I'm so glad that you've found a few things to help! Managing pain can be so challenging, and you certainly aren't alone in not taking pain meds, so it's great that you've found some alternatives that can bring some relief. -- Warmly, Christine (Team Member)
I have to admit I had to look it up. Never heard of it before. I agree with that it sounds very painful. Do you go to a Rheumatologist? If so what are they prescribing for it? Vickie W., Team Member I am pretty crippled up and have in home health care. I am lucky, I get PT and medical care on a regular basis. The PT and my doctor (with a rheumatologist consult) have me using a fancy, heated neck massager. At first , it was very painful to use, but now, it is welcomed therapy. I also have gabapentin and muscle relaxants. I refuse pain meds and can’t take ibuprofen because of my stomach, so I am pretty limited. I try to limit the amount of prednisone I take and I just finished a powerful dosage about 6 weeks ago, so i am holding off on that. We are pretty much letting it run it’s course. It’s always something.
I should explain, PSA has not done the bad crippling. I have HLA-B27. They tell me the flares I have had since I was 3 were all because of this. The years have caught up with me; I am 75.getting old is never easy. I had to look up HLA-B27. There are so many medical terms I am unfamiliar with. I am happy to hear that your doctor did consult a rheumatologist and very happy to hear the heated neck massager is helping. I use a tens unit on painful joints so anything that brings comfortable is always a good thing. I am on gabapentin as well as muscle relaxers too. We do what we have to do. Sending gentle hugs. Vickie W., Team Member
