Looking for Advice

Posting for our community member @danell

I do not normally get on forums and post questions, I am more of a read and see what others have to say person. I have had MS for going on 24 years and have basically done pretty well with it. I have had a couple of relapses here and there. Went a few years where the cold was absolute torture and caused a lot of pain. I am now to the point where heat is to much for me. After my first relapse my husband made the decision that he did not want me to work. I stayed home and raised our kids. I really have no work history because when they were finally all five in school full time, and I did go back to work, I was only able to work for about 2 years before I had the first relapse. Because of that, I do not qualify for disability. That being said, I am having some severe MS/Shingles/Postherpetic neuralgia. On April 23rd 2025, I started having an intense pain, in between my spine and the outer edge of my right shoulder blade. It was a little bit painful to breathe and I attributed it to a rib out of place. I had my husband give me one of his hugs where he presses at the bottom of my spine and runs the bottom of his hands up each side of mine spine while applying pressure, to see if my back would crack. It did a little bit but not much and I did not get any relief. I was not able to go to my chiropractor until that Friday. Normally after and adjustment, I feel great. My chiropractor got the spot I needed to move and for about 30 seconds, I thought, problem solved! I was sorely wrong. I took my mother-in-law out to the car and the whole 40 minute drive home, I was just in pain. It was hurting so bad and I just couldn't understand why because my back adjusted very well and everything else felt great, except that specific spot. Sunday rolls around and we had a trip we needed to take. I was in so much pain and started thinking, it's my right side, what if I am having a heart attack. I needed to make this trip though and it was very important. We left home at 6 a.m. By noon, I was visiting first aid and telling them of my pain and I had started developing vertigo, my heart was racing. I don't remember mu pulse rate but my blood pressure was 145/90. I was convinced it was a heart attack. My husband took me to the ER as there were no urgent care places open on a Sunday. I told the doctor of my pain and he asked if there was anything else, just to cover all bases. I told him of the pain in my leg and the vertigo but that the pain in my back was so intense that that was my main concern. He sent me for a CT scan of my abdomen, an x-ray of my clavicle and back, blood work, urine test. It was a lot but I didn't care. I had that test done also where they put the little sticky things with wires all over you on your legs, sides, chest, I forget all wear but then it monitors your heart I believe. I am not sure. After all testing was done, it was determined that I had an inflamed gallbladder and that there were some stones stuck in the duct and I would need my gallbladder removed. Ok, great! I'm three hours from home and no idea if my insurance covers this place but whatever, I am in pain and I want it gone! They plan on a surgery for Monday morning but when morning comes around, the surgeons flight is delayed and he is going to be very late, so they call in another surgeon. He comes to see me, discusses everything with me and tells me I have two choices. I can wait and not eat until like 9 or 10 Monday night and he will do my surgery after he gets all of his other ones done or I can have my surgery first thing Tuesday morning. I chose Tuesday so I could eat a little bit of something because by this time, it was close to lunch time and I hadn't had anything to eat or drink since like 8 p.m. the night before. Tuesday comes around and the orderly comes to get me and I told him I needed to use the restroom before we went down. I felt something odd on the outside of my right breast when I moved my arm and out of curiosity, I looked. I seen one spot of the beginning of shingles. I knew immediately what it was as my husband had had shingles the year before. I said nothing to the orderly. As he was pushing me out of my room a nurse was rushing down the hall and wanted to do my vitals before we went down. By this time, I was still having a high blood pressure with my top number in the 140's, my pulse was a little high but then when she took my temperature, it was 99. I panicked, afraid that yet again, surgery would be delayed. I had had a heat pack on my back and you could still feel the heat on my back from it and I told her that was probably why my temp was a little high. She went and told my nurse and he said it was fine I could go down. RELIEF! Went down for surgery, got back to my room around 11. I had no pain in my abdomen but still had the intense pain in my back. Figured it should go away soon. Walked around a bit and went to the bathroom, decided to check my right breast and the shingles had spread, that quickly from the outside of my breast to across the bottom of my breast. I came out and one of my doctors had shown up and I instantly told him, I have shingles. He couldn't believe it but I showed him and that of course bput me into quarantine. I had to stay in my room and basically walk laps to get myself to relieve gas. Good times. I was able to do all the things you are supposed to do to be able to leave the hospital and we headed home. I showered when I got home and the shingles had spread to my sternum and under my armpit, all the way to my spine. By this time, I knew all of my pain was and had been from the shingles. The gallbladder had nothing to do with it. I went into the infusion center for my Ocrevus on May 27th. I was still in intense pain from the shingles. They have cleared up a lot, you can still see where they had been but they are fading. at 9 a.m., I took 2 Tylenol, my tramadol and Lyrica at 10 a.m. and by noon, I was in intense pain again. All the time from the day of my surgery until now, June 1st, I have been in intense pain from the shingles. Thankfully, my infusion nurse had a previous history as working as a pain clinic nurse. She said I absolutely had Post Herpatic Neuralgia and I needed to have my GP get me into a pain clinic so that I can get some sort of nerve blocker to get some relief. I have spent the entire last week, basically begging my GP to get me into a pain clinic. They just wanted to increase the dosage and frequency of the drugs I was already on. I told them no, I didn't want to keep popping pills. I am over it. Get me into a pain clinic. Here we are, on June 1st., and I MIGHT be able to get into a pain clinic on the 12th., a town over from where I live. The other closest pain clinic has appointments that are 3-4 months out. So hopefully after all of this time, I may find some relief on June 12th but then again, I was told they do nothing on the first appointment but ask questions and decide if you even need anything or if they need to send you on your way with nothing but MORE PILLS. I am so frustrated and sore and tired. Oh, and my last blood pressure I had taken on May 27th, was 145/110, and I have had vertigo everyday since. The Ubrelvy I had tried for the migraines has done nothing. I really hope no one else has gone through anything like this but if you have, please let me know and how you have dealt with it. I do want to say, I finally called my neurologist office but unfortunately he is out of town so I won't hear back from him until tomorrow sometime.
Thank you for reading this if you have made it this far. I apologize for it being so long. Also, as a side note, I am only 49, I can't get the shingles vaccine.