Miserable

The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.

Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.

PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.

I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.

I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.

Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)

I hate MS.

It's Official--Yes, Again

Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.

Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.

It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.

One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.

The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.

Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.