For once I feel like I’m winning in this battle against constant pain.
For once I had really good doctor appointment. I was getting desperate to find a way, any way to relieve this pain.
I did some research on Peripheral Neuropathy and discovered that most of my pain, other than the RA in my knees, is due to PN.
Itching, burning, pins and needles sensation, electrical shocks, stabbing pains, my skin very sensitive to touch, aching sore muscles (in my calves and upper legs), and my right foot often feels like it’s encased in a block of ice, but I don’t feel cold. And despite the fact that skin is sensitive to touch, it also feels numb. All of these are signs of PN and it’s getting worse.
So I wrote out a game plan about what I want to do and what I can do, and what I needed from her.
We agreed to put the Celebrex on hold for now and I finally made an appointment with RA doctor in Poulsbo and and made the trip down there to see him. He asked me lots of questions, including my history with RA and what I was treated with 45 years ago. I told him it was gold shots and high doses of aspirin (60 a day, yes, you read that right). Gold shots is in the same category as arsenic, which is why they don’t use it anymore and that much aspirin destroys the lining of your stomach. I went into remission when I became pregnant (son is now 40) and stayed in remission until recently. He started me on Hydroxychloroquine, yes the same wonder drug that Donald Trump insisted would “cure” Covid 19. Dr. May became surly when he assured me that Hydroxychloroquine, which also goes by the much simpler name of Plaquenil, will have no affect whatsoever with Covid, and it was clear that Dr. May didn’t have a very high opinion of Donald Trump. That made me like him even more. Plaquenil works well with malaria and autoimmune diseases like Lupus and RA. He said it would take 3-6 months to see any kind of results, but it’s only been a month and I’m starting to see improvement already. He said it would be very slow to kick in, so I’m guessing that as time goes on, the pain will lessen more and more.
My primary wasn’t comfortable letting me go back on Celebrex since my kidneys have been compromised by it. But the RA doctor said it was okay to go back on it and they will monitor my kidney function. The idea is that the Plaquenil will kick in before the Celebrex does too much damage.
We then talked about Gabapentin, which is a pain drug for nerve damage, but at 300mg twice a day, it wasn’t touching my pain at all. We agreed to experiment with higher doses. According to the sites I explored, the average dosage is between 1200mg and 1800mg twice daily, with some patients on 2400mg or higher. Gabapentin doesn’t hurt your kidneys and there is a chance it might also help my RA pain at much higher dose. So we’ve changed to 300mg 3 times a day, and after 3 days, increase it by having one of the doses at 600mg, and then increasing one dose every 3-4 days, depending on how well it works and if I have any bad side effects. So that was a win in my column. I’m now on 900mg three times a day and it’s doing what it was designed to do.
Okay. So now my lower legs were better. My knees were on the way to better. Apparently my brain can’t function unless it’s in pain. I started to have intense pain in my upper left leg. I thought I had pulled a muscle. I went to see the doctor and she thought I had a pinched nerve in my back. So off to x-rays I went only to learn that I have mild scoliosis in my lower back with a 10% deviation to the left and it’s causing the leg pain. It also showed I had arthritis in two of the spaces in between the disks. Not sure what will be needed to help this. So it’s back to the doctor, but I keep putting it off mainly because raising my leg at all is incredibly painful… so getting in and out of the car and in and out of the shower is very difficult. I even need help getting into my bed. I cry out in pain when I even roll over from side to side.
In my research, I saw that massage and acupuncture was recommended for PN pain, and I’m more than willing to do that. I did both weekly for years and enjoyed them both. But you can’t do that in the middle of a pandemic. Especially with an open wound and a bad heart. I’m going to try to find therapists that do house calls, but being in a small town during a pandemic, it might be easier said than done. I may need to see a chiropractor for the scoliosis.
I also talked to the doctor about an electric blanket since I had read opposing thoughts about them for PN. I don’t need a whole blanket because I don’t really get cold at night. But I use heating pads on my leg for the pain and I’m constantly moving it from one painful area to another. So I found a soft electric “throw” that I can wrap around my entire leg. This blanket is so wonderful, that I bought three of them. One is on my bed, one for my desk chair and one for my brand new zero gravity recliner.
This chair is amazing and it’s huge. I’ve named it my Teddy Bear Chair, because it is soft and cuddly. It reclines and it lifts me to my feet. And I can sleep in it and sometimes do.
I also bought these over the ear bluetooth headphones (stylishly in white and rose gold) where I can feed my music playlist from my computer… or meditations from Calm.com, or audible books or podcasts, and wrapped up in my heated blanket, cuddled up in my teddy bear chair, I feel like I’m floating in a cocoon.
I also bought this bluetooth speaker for my bedroom. I found that listening to “spa” type music while I fall asleep helps me relax and helps to keep the anxiety down which leads to no night terrors.
I’ve started keeping a pitcher of water with lemon and lime slices in it on my desk so I can drink more water.
I bought an electric tea kettle and a red teapot that I can keep on my electric hot pad so I can drink herbal tea all evening… mostly Hibiscus and Honey Lavender.
I bought an essential oil dispenser that puffs out sweet orange scent and I’m thrilled with how much I enjoy that.
I try to use distractions to help me not think of the pain… genealogy research, games on Facebook, reading books on my Kindle app, writing poetry, writing my memories for my family history, writing fictional stories, and writing this blog.
All of this helps alleviate the pain even if it doesn’t eliminate the pain.
So I feel like I’ve made some progress.