Thank you for looking into my EM experience. The response to some of your questions and suggestions are as follow:
“… talk any changes over with your doctor” Right now my case to referred to a rheumatologist and I am waiting to hear the results. My PCP recommends that in addition to gabapentin, I take nortriptyline to sleep better. My B12 level is in the normal range, she encourages me to take supplement, stating that older people usually do better with a higher level of B12 in their systems.
‘’When you had the Grovers experience, did you also take antibiotics or any other medications around that time? If so, which one?” I had Grover 2018, and got worse in 2020. I was not on any biotics until the horrible experience with prednisone. When my skin was torched and raw I was on doxycline to prevent infection.
“Is it worse at night? Is it generally tolerable during the day? Can you sleep OK?” It is generally more tolerable during the day. Without any trigger, like heat or pressure from wearing shoes, I feel good in the morning after the ebbing of the nightly heat. The flare-up usually begin after lunch. It is worse at night not only because of the rise of the body heat; it is the body heat that amplifies the intensity of the itch from my rash. It keeps me awake.
“… consider trying some time off and see if you get somewhat better.” I am a college teacher and have the whole summer to convalesce. I hope my EM symptoms will be lessened by then or else I will have to teach in a wheelchair in the fall semester (now that classes will be in-person). I am not ready to retire yet.
“… Good exercise and may help with cooling.” I live the SF-BA, it is cool most of the time. I walk every day during mid-morning before the flare-up comes, and cooled my feet on cold floor tiles afterward to prevent a triggered event.
“ pregabolin (Lyrica) vs gabapentin?” Both drugs act on the same physiological target, calcium channel. The structures are also similar, gamma-aminobutyric acid (thus the name gaba). I will stay with gabapentin for a while. It does not prevent the flare-ups but minimizes their frequency and intensity. More importantly for me, it stops the tingling in my feet.
“… if you went through some severe emotional time in 2000 (2020?) … ?” I did not have COVID or any other issue, thank goodness. Prednisone did me in, I have no doubt.
“Do you feel like your doctor really cares and is making a big effort to help?” I belong to an HMO. The doctors have limited time for each patient. I have seen my PCP, dermatologist and now a rheumatologist. I believe they care and doing the best they can.
“…I don’t believe you necessarily have a life sentence…” It is affirming to know my EM peers are willing to share their experience and knowledge dealing with this disorder; they broaden my perspective on EM from a sufferer point of view. EM or not, I will try to live my life to the fullest, but aware of the limitations.
Hi Charlie, sorry you are going through all this. A few thoughts, and you should talk any changes over with your doctor.
When you had the Grovers experience, did you also take antibiotics or any other medications around that time? If so, which one?
I wonder if you are taking any supplements? Green tea? If so, consider trying some time off and see if you get somewhat better.
Are you too hot? California is a hot state which may not help. Have you tried swimming at your neighbourhood pool or beach? How do you feel afterwards? That night? Good exercise and may help with cooling.
Is it worse at night? Is it generally tolerable during the day? Can you sleep OK?
Have you looked at the difference between pregabolin and gabapentum? Maybe you could talk over with your doctor trying to cut down your doses or maybe you have already tried it.
Carter has hit the nail on the head, often it seems to come down to exercise, weight discipline and perhaps also alcohol use, smoking, diet, common sense things, they all seem to play into it. Weight is often the elephant in the room.
I wonder if you went through some severe emotional time in 2000 which wouldn’t have helped ? Did you get covid? Not necessary to reply with private information but these things may come into the big picture.
Do you feel like your doctor really cares and is making a big effort to help?
I don’t believe you necessarily have a life sentence, but i would not want to give you false hope. As you research and try different things you may well improve, and there have been spontaneous healing of EM.
All the best, I am also 68.