Dearest Sjogren's Angels,
Recently I have stopped taking a medication which very much helped my neuropathic pain. As a result I am experiencing the 'daily cycle of Immune Disorders' to a greater degree.
1. Wake up feeling really awful.
2. Take my meds, get up and get going (eventually, since I'm retired).
3. By about 10 or 11 am I feel better.
4. I feel pretty much OK during the day, unless I do anything stressful (social events, doctors' appointments wear me out).
5. Begin to be tired in late afternoon.
6. Go to bed early.
7. Have a restless but reasonable night unless I'm in a flare.
1. Wake up feeling really awful (myalgia, headache, etc).
This is a cycle that I had made pretty bearable with Gabapentin...but now, it's worse again.
I will start on something for seizures/nerve pain soon, I hope. Or at least in January. I need to make an appointment with my neurologist, since I think he's away for the holidays and he hasn't responded to my email.
I'm still recovering from the first part of the day misery......the stinging, itching and burning of my skin seems like the 'final straw' oh, and my chest and throat and mouth also sting and itch. All symptoms dampened down by the right med.
Hugs, Elaine
Hi Elaine,
I know how you feel. Often I compare myself to a cart stuck in the mud in the mornings. Only a bunch of horses can pull me out - or so it feels. However I have to get up for my 9 to 5 office job. Luckily you can sleep in, if desired... My prime time is probably just after dinner. That's how long it take for the machinery to be greased up. Have you tried MSM for neuropathy? I find it helps somewhat.
Take care.
Maria
Mornings are rough for me too for the most part. I don't always get a good night's sleep. Sometimes I sleep well and my eyes pop open at 6:30 and that lasts for a while. I hope you can find something that works for the neuropathy.
Do you take alpha lipoic acid, vitamins or supplements for the neuropathy? These diseases can really be rough and sometimes the side effects of the medications are as bad as the disease itself.
Wishing you a pain free and Merry Christmas!
I am a morning person. It does take me a bit longer to get going now, but that could be age. I find that being kept awake until after 11:30 causes me to be up earlier.
I have better days if I can sleep through the morning chorus. (That happens about an hour before sun rise). The birds often make a good sound at that time and that is why I call it a chorus.
I hope you find something that will help you with your neuropathy. For years, the foot patches or Ionic foot baths helped me. I currently have no access to them.
The acetyl-L-Carnitine repairs DNA damage to the mitochondria genes. R-Lipoic acid removes the debris from the repair. It can also remove some toxins from your system.
I take super omega 3 fish oil, R-lipoic acid, N-acetyl carnatine, N-acetyl-Cysteine, Ubiquinol, D3, D-Mannose, Jarrow probiotics, Magnesium, Potassium, a Multivitamin, Iron, Copper, PQQ, SamE, and my RX medications, too.
If it isn't dangerous and it might help, I give it a try.
I know when I can return to some treatment either for my seizures or my SFN, I will probably feel better again.
However, learning to live with discomfort and with pain (to a certain degree)is part of what has kept me going. My expectation to be 'pain free' is unrealistic given my conditions.
I had to give up one of my most important pain medications, Aleve (Naproxen Sodium) because even with Omeprazole at 40 mg every evening, I was still finally developing an ulcer from the NSAID.
And then giving up the Gabapentin, which was horrible withdrawal, has added to my current discomfort/pain levels.
I just don't always get what I want. You know?
You are my lifeline to sanity and peace of mind.
Hugs, Elaine
Were you having issues with the Gabapentin? Did your doc suggest that you stop taking it and did you tirate off of it?
I have been fortunate that GB has helped with nerve pain, though I need to up the dosage some (doc has approved) to see if I can gain a bit more relief.
Mornings I am slow, but I've found getting a breath of fresh air helps.
SjoGirl,
I suggested stopping the Gabapentin. It, and Lyrica, have a 4% chance of causing exactly the kind of Myoclonic seizures that have caused me to fall to the floor many times since June.
I was taking a high dosage to get complete relief (3600 mg/day!), so the withdrawal was awful.
For the first month after discontinuing Gabapentin I continued to have seizures, but almost only the type that cause shaking of my body, NOT falling.
After that month, however, I haven't had any seizures (the past five days) and so it may be that the gabapentin was involved. If it turns out not to be involved, and I continue with seizures, then I will add back some gabapentin and also a medication for the seizures (Depakote most likely).
That's why I'm putting up with the horror of itching burning stabbing skin on my neck, scalp, face, lips, tongue throat, hand (including the palms) and arms. The itching is like stinging mosquito bites and the burning is like a bad sunburn. Even my eyes itch.
But, I will wait this out and eventually some medications will be added that can help me.
My neurologist doesn't really think my seizures are the result of the effects of the Gabapentin. He thinks I have what is called Primary Progressive Myoclonus of Aging, and should be treated with specific anti seizure medication.
It will all be resolved, until the next fun thing is added to my litany.
I am quite happy that the worst of my asthma attacks stopped once I reduced the humidity to no higher than 50%.
I think I will get a DE humidifier for the summer.
I have a humidistat which tells me what the percentage of humidity there is in the air next to my bed. So if it is high in the summer, I can run a dehumidifier perhaps to help.
It's all a balancing act, it seems.
Hugs, Elaine