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Old 08-05-2015, 08:50 AM #1
Healthgirl Healthgirl is offline
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Default Did this ever happen? Did anyone think they were getting better?

If it weren't for the prescription narcotics that I have, I would have been in the emergency room for the past 5 days.

I don't understand what is going on.

I was living life again. It wasn't as good as I wanted it to be, but it was manageable. I was driving, cooking, doing housework. I hadn't needed help from my mother in 3 months (that is how much better I was doing). I was even doing a little work out routine. I was thinking more clearly, the brain fog was cleared.I was sleeping for about 2 months with only 2 all nighters. When I did wake up with a pain issue I would take 1/2 of a pill and it would settle.

Throughout the long months after my onset, my blood pressure had improved so that I could stand up without everything going black much more often. The buzzing was still there but very mild.
I was so much recovered and had a few short setbacks, but always rebounded and kept coming back and still improving. It took so long to get where I was. It was hell. The recovery was so slow- but happened and now here I am again.

I am buzzing, tingling, and in disgusting pain.
I can't drive my car because I can barely move my neck. The pain in my whole spine is nauseating. I was chewing a piece of turkey yesterday and had to spit it out because the pain from swallowing shot nerve pain throughout my cervical and thoracic spine. I can't think because my whole face, head, and neck feel like they are being compressed and full of some kind of fuzz.

I am so sad. I was me again. I was happy again. I can't think of what happened that set me off into this state again.
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Old 08-05-2015, 12:13 PM #2
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Thumbs up Sourcing of flares

Quote:
Originally Posted by Healthgirl View Post
If it weren't for the prescription narcotics that I have, I would have been in the emergency room for the past 5 days.

I don't understand what is going on.

I was living life again. It wasn't as good as I wanted it to be, but it was manageable. I was driving, cooking, doing housework. I hadn't needed help from my mother in 3 months (that is how much better I was doing). I was even doing a little work out routine. I was thinking more clearly, the brain fog was cleared.I was sleeping for about 2 months with only 2 all nighters. When I did wake up with a pain issue I would take 1/2 of a pill and it would settle.

Throughout the long months after my onset, my blood pressure had improved so that I could stand up without everything going black much more often. The buzzing was still there but very mild.
I was so much recovered and had a few short setbacks, but always rebounded and kept coming back and still improving. It took so long to get where I was. It was hell. The recovery was so slow- but happened and now here I am again.

I am buzzing, tingling, and in disgusting pain.
I can't drive my car because I can barely move my neck. The pain in my whole spine is nauseating. I was chewing a piece of turkey yesterday and had to spit it out because the pain from swallowing shot nerve pain throughout my cervical and thoracic spine. I can't think because my whole face, head, and neck feel like they are being compressed and full of some kind of fuzz.

I am so sad. I was me again. I was happy again. I can't think of what happened that set me off into this state again.
Sorry for your relapse. When trying to figure out a puzzle that has no answer the process spirals down to include all known influences on the body. When food, environment, air, water, etc. have been examined, you are left with "what did I do wrong"? Don't blame your self. It might just be the nature of the beast. Do what you know to do and that is all you can do. Hopefully the wait won't be too long. Good Luck, Ken in Texas.
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Old 08-05-2015, 12:35 PM #3
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This is actually very common with autoimmune diseases...to have remission for weeks/months, then a "flare" occurs and symptoms return, sometimes worse then they were before the remission.

A flare can be triggers by something as simple as stress. But of course, any trauma, illness, fever, infection, bug bite, etc will set it off.
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Old 08-05-2015, 04:07 PM #4
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I feel for you, sorry to hear what is happening. Good advice from the post above, do what you know works. Take care we are thinking of you.
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Old 08-06-2015, 12:14 PM #5
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Quote:
Originally Posted by en bloc View Post
This is actually very common with autoimmune diseases...to have remission for weeks/months, then a "flare" occurs and symptoms return, sometimes worse then they were before the remission.

A flare can be triggers by something as simple as stress. But of course, any trauma, illness, fever, infection, bug bite, etc will set it off.
Thanks, This is so miserable. I can't even breathe or swallow food with out horrific nerve pain. It has spread back into my shoulders and I am so upset.

I can't figure out what the trigger was. No stress, was very happy and optimistic, no fever, no infection....

I though it was easing last night, but it was a probably because I was steady with the meds. Today is even worse. I can't even tolerate any noise with out it causing vibrational nerve pain in my whole upper body. My legs are getting floppy again and my hips hurt. So so sad.
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Old 08-06-2015, 05:46 PM #6
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Sorry to hear your having such a rough time Healthgirl. I hope you feel better soon. It's just not fair how this disease toys with us, then smacks us back down for no reason.
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Old 08-07-2015, 09:18 AM #7
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Hello, I am sorry to hear that. I got this also. It was better, almost no tingling/vibrating but it came back. I really do not know how I will live with this condition where will I get the energy for my baby.
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Old 08-07-2015, 09:33 AM #8
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Quote:
Originally Posted by Healthgirl View Post
Thanks, This is so miserable. I can't even breathe or swallow food with out horrific nerve pain. It has spread back into my shoulders and I am so upset.

I can't figure out what the trigger was. No stress, was very happy and optimistic, no fever, no infection....

I though it was easing last night, but it was a probably because I was steady with the meds. Today is even worse. I can't even tolerate any noise with out it causing vibrational nerve pain in my whole upper body. My legs are getting floppy again and my hips hurt. So so sad.
Stay strong. Just be reassured that this is common in everything I have read. There are even some places that say it may be a sign of healing. My neurologist said a sudden increase in pain can be a sign of healing. He made no guarantees of course but said he wouldn't rule it out. Try to remain hopeful, I know it is awful.
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Old 08-07-2015, 09:33 AM #9
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No need to be confused it just happens. A sad but tough reality to accept.
I thought this couldn't get any worse, how wrong I was. Mine was triggered by the MRI test I had to lay still for.
It does rob you of yourself...I try to look at it as L.M Montgomery's character Anne said about her mind....I do know my own mind. It just changes and I have to get reacquainted with it all over again. Or something to the like.
Keep up the fight, you are not alone.

Last edited by Enna70; 08-07-2015 at 09:34 AM. Reason: Typo
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Old 08-08-2015, 07:54 AM #10
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I lived in increasing pain for over 4 years, it was when I had an MRI to explore the possibility of a spinal cord stimulator that I got some sort on answer. The MRI revealed too much damage for the SCS to work so I saw a neurosurgeon.

Two months ago I had a spinal fusion on L3-4-5, for the first few weeks I too thought I was healed and the nueropathy was gone. Little by little the tingling and burning returned. Its nowhere near what it was before since the pain from the back isn't adding to it.

I know that I'm still going to have flares from the nueropathy yesterday was one of them. All I know is I try my best to enjoy the good days and do my best not to let the bad days get me to far down.

Good luck I hope you find relief.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history.
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