May 31st, day 37
This is HELL. I can hardly take the pain in my feet. It has come back and broken through the meds AGAIN. :( It is unbearable and making me feel total despair. I don't think its a herx, I think it's something in my body that has changed. I have increased the neurotin and it's not working...
I am slightly off balance with some minor twitching...most other symptoms are either gone or just can't be felt over this level of pain. WTF!!!
Sunday, May 31, 2009
Wednesday, May 27, 2009
Wed, May 27th, Day 33 .**** another herx??***************
Feeling shitty. Foot stuff has been bothering me a lot, went back on neurontin full dose after pulling back a bit. feel very wavy, run down, tired. Some back pain, LOTS of confusions, buzzy feeling. Face burning, stinging, emotional. Noticing tummy problems..feeling bloated and uncomfortable, some cramping, burning...
Saw Dr. R today, she doesn't believe neuropathy encompasses wavy feeling..thinks it lyme related...doesn't feel IVIG would benefit me at all, said there is zero literature supporting its use at all..
Feeling shitty. Foot stuff has been bothering me a lot, went back on neurontin full dose after pulling back a bit. feel very wavy, run down, tired. Some back pain, LOTS of confusions, buzzy feeling. Face burning, stinging, emotional. Noticing tummy problems..feeling bloated and uncomfortable, some cramping, burning...
Saw Dr. R today, she doesn't believe neuropathy encompasses wavy feeling..thinks it lyme related...doesn't feel IVIG would benefit me at all, said there is zero literature supporting its use at all..
Monday, May 25, 2009
Mon, May 25th-Happy Birthday Brooke- #5:) Day 31
Wed-Sat, feeling great! No foot issues so I slowly backed off the nuerontin. Had full energy, almost no symptoms. I have noticed though that when I have my period lately, symptoms seem to be reduced. Cant be totally sure. Feet and waviness started bothering me again yesterday so I added back in Neurontin...stinks! They are both bothering me again now. Im starting to wonder if my remaining symtpoms arent totally neuropathy since they are both back once decreasing neuro meds. I do have twitching back as well...i am concerned im on antibiotics for nothing, there would bo no reason if it's all neuropathy.
Wed-Sat, feeling great! No foot issues so I slowly backed off the nuerontin. Had full energy, almost no symptoms. I have noticed though that when I have my period lately, symptoms seem to be reduced. Cant be totally sure. Feet and waviness started bothering me again yesterday so I added back in Neurontin...stinks! They are both bothering me again now. Im starting to wonder if my remaining symtpoms arent totally neuropathy since they are both back once decreasing neuro meds. I do have twitching back as well...i am concerned im on antibiotics for nothing, there would bo no reason if it's all neuropathy.
Tuesday, May 19, 2009
Tues, May 19th, Day 25 **********************************************
Noticing overall energy increase...feeling a lot less wavy and run down overall...feeling a bit more "normal" these days. If it weren't for the foot thing, I'd be at 90%. Dare I say it...
The foot thing is still scary but it's under control for the moment with the nuerontin...i'll take it! Some off balance/wavy sensations now, minor twitching today...still some back of the knee pain...but nothing to speak of(scale of 1-10, i would rate it a 2). Felt great playing with the kids the past coulpe of days, I feel so much more connected and able to be the fun mommy I have inside of me but can't normally be to the besy of my ability. My head has just felt more clear? Huh. Lets see how tomorrow goes...
Noticing overall energy increase...feeling a lot less wavy and run down overall...feeling a bit more "normal" these days. If it weren't for the foot thing, I'd be at 90%. Dare I say it...
The foot thing is still scary but it's under control for the moment with the nuerontin...i'll take it! Some off balance/wavy sensations now, minor twitching today...still some back of the knee pain...but nothing to speak of(scale of 1-10, i would rate it a 2). Felt great playing with the kids the past coulpe of days, I feel so much more connected and able to be the fun mommy I have inside of me but can't normally be to the besy of my ability. My head has just felt more clear? Huh. Lets see how tomorrow goes...
Monday, May 18, 2009
Mon, May18th- Day 24
SO premenstrual, irritable...horrible stiff neck and back upon waking, took ibuprofen for pain-worked well. Leg felt better as the day went on, still having some sensations in my feet:( they are sore...pains in right calf?? random tingles, prickling...
after infusion the pain behind my knee is back??? sore feet, need to take nighttime nuerontin
no waviness to speak of..still twitching...
SO premenstrual, irritable...horrible stiff neck and back upon waking, took ibuprofen for pain-worked well. Leg felt better as the day went on, still having some sensations in my feet:( they are sore...pains in right calf?? random tingles, prickling...
after infusion the pain behind my knee is back??? sore feet, need to take nighttime nuerontin
no waviness to speak of..still twitching...
Thursday, May 14, 2009
Thursday, May 14th- Day 2o
Pain in feet is back. Burning, pinching, etc. Not a 10 on pain scale but getting there. I took 150 in the am 150 at lunch and now 300 at mid day. Still feeling pain/burning, pinching/cold. SO frustrating!!!!!!!!!!!!!!!!!! Nothing is helping :(
Pain in palms, twitching, vibrating, buzzing, sore fingers, lower back is sore, wavy, dizzy at times
Pain in feet is back. Burning, pinching, etc. Not a 10 on pain scale but getting there. I took 150 in the am 150 at lunch and now 300 at mid day. Still feeling pain/burning, pinching/cold. SO frustrating!!!!!!!!!!!!!!!!!! Nothing is helping :(
Pain in palms, twitching, vibrating, buzzing, sore fingers, lower back is sore, wavy, dizzy at times
Wed, May 13th, day 19
Feet were doing well from Neurontin (or so it seemed) for ONE day. Took 150 in the am but by 4, the sensations started to return. took 300 before bed, woke up at midnight with the pain again. This foot problem is taking over my life. Random pains all over, sore palms, wrists. Foot pain is by far the worst of my symptoms right now.
Feet were doing well from Neurontin (or so it seemed) for ONE day. Took 150 in the am but by 4, the sensations started to return. took 300 before bed, woke up at midnight with the pain again. This foot problem is taking over my life. Random pains all over, sore palms, wrists. Foot pain is by far the worst of my symptoms right now.
Tuesday, May 12, 2009
Tues, May 12th- day 18
Awful, awful, awful. The foot pain got incredible last night- I couldnt sleep at all...im in a full on panic. Took a neurontin around 1:30 am. Jamie was up for 2 hours as well, im beyond exhausted. This morning my feet still burn and im getting itchy all over. My hands are tingling now too. I'm very off balance/wavy but prob from lack of sleep ,neurontin and whatever my issue is.
foot pain was bothersome but not as bad as last night- feeling tingles/pricks in hands along with very sore heels of my hands? SO WEIRD! Took a small portion of neurontin late afternoon and it seemed to dull the pain. Did infusion, went fine- brain waves right after. Still feeling wavy, took 300 mg neurontin now...
Awful, awful, awful. The foot pain got incredible last night- I couldnt sleep at all...im in a full on panic. Took a neurontin around 1:30 am. Jamie was up for 2 hours as well, im beyond exhausted. This morning my feet still burn and im getting itchy all over. My hands are tingling now too. I'm very off balance/wavy but prob from lack of sleep ,neurontin and whatever my issue is.
foot pain was bothersome but not as bad as last night- feeling tingles/pricks in hands along with very sore heels of my hands? SO WEIRD! Took a small portion of neurontin late afternoon and it seemed to dull the pain. Did infusion, went fine- brain waves right after. Still feeling wavy, took 300 mg neurontin now...
Monday, May 11, 2009
Mon, May 11th Day 17
Pretty symptom free day except for the returning foot disturbances. Itchy, mild burning, twitching-SO distracting! :( Pains in heels, stabs, etc. On a scale of 1-10, the pain in my feet today is about a 4. Feeling very depressed after researching neuropathy. wish I knew why this was coming on and how to reverse it. Need answers but am afraid there just wont be any. A major question for Dr.J. Just now starting to feel off balance. Read that off balance can also be caused by neuropathy. Makes me wonder..hope im treating the right thing. Trying to stay positive but it's so very difficult. What if this is life long? ALL of it? Am I just now realizing how permanent this all is?
Pretty symptom free day except for the returning foot disturbances. Itchy, mild burning, twitching-SO distracting! :( Pains in heels, stabs, etc. On a scale of 1-10, the pain in my feet today is about a 4. Feeling very depressed after researching neuropathy. wish I knew why this was coming on and how to reverse it. Need answers but am afraid there just wont be any. A major question for Dr.J. Just now starting to feel off balance. Read that off balance can also be caused by neuropathy. Makes me wonder..hope im treating the right thing. Trying to stay positive but it's so very difficult. What if this is life long? ALL of it? Am I just now realizing how permanent this all is?
Saturday, May 9, 2009
Sat, May 9th- Day 15
Was up in the middle of the night with Brooke and nightmares. didnt feel any foot pain. Now that im up for the day, there is minor tingling and some stiffness when first walking..lost of twitching but twitching doesnt hurt..
Late day- 6pm, minor foot tingling, pinching-itchy sides of feet and sides of hands, minor tipsy feeling...feet have been abnormal all day but not as bad as a couple of days ago...going to remain off of neurontin and see...
Was up in the middle of the night with Brooke and nightmares. didnt feel any foot pain. Now that im up for the day, there is minor tingling and some stiffness when first walking..lost of twitching but twitching doesnt hurt..
Late day- 6pm, minor foot tingling, pinching-itchy sides of feet and sides of hands, minor tipsy feeling...feet have been abnormal all day but not as bad as a couple of days ago...going to remain off of neurontin and see...
Fri, May 8 day 14
took a 300 neurontin upon waking..foot pain still bothersome but less stabbing for sure..pain down the right calf..all sorts twitching, random lightening pains...fatigue from either neurontin or other?
By late day, foot pain gone. Calf pain gone. I am not going to take neurontin tonight because I want to know if I was herxing or not...if pain comes back and is unbearable, I will go back on and stay on.
Overall a MUCH better day...a lot less wavy feeling..seems if the pain from the feet is gone, everything feels so much better- even close to 80-90%!
took a 300 neurontin upon waking..foot pain still bothersome but less stabbing for sure..pain down the right calf..all sorts twitching, random lightening pains...fatigue from either neurontin or other?
By late day, foot pain gone. Calf pain gone. I am not going to take neurontin tonight because I want to know if I was herxing or not...if pain comes back and is unbearable, I will go back on and stay on.
Overall a MUCH better day...a lot less wavy feeling..seems if the pain from the feet is gone, everything feels so much better- even close to 80-90%!
Thursday, May 7, 2009
Thurs, May 7th- Day 13
What a horrible night. I took the 600 mg's of Neurontin and two hours later I was drunk as a skunk. I could hardly walk up the stairs to go to bed. I did however notice a decrease in the pain in my feet. Now that I'm up and walking around, it's coming back. I don't know if I can handle another pill while home alone with the kids. I'm going to cut in half as the doc said I could and see if that will suffice. Doc suggested this increase in pain could be from a "die off."
Wavy/dizzy, burning legs,foot pain/pinching/vibrating, some lower back pain, some ankle pain-feet were decreased in pain but not gone..
saw PCP said Neuro prescribed far to0 high of an amount and to start much lower..took 300 at bed time
What a horrible night. I took the 600 mg's of Neurontin and two hours later I was drunk as a skunk. I could hardly walk up the stairs to go to bed. I did however notice a decrease in the pain in my feet. Now that I'm up and walking around, it's coming back. I don't know if I can handle another pill while home alone with the kids. I'm going to cut in half as the doc said I could and see if that will suffice. Doc suggested this increase in pain could be from a "die off."
Wavy/dizzy, burning legs,foot pain/pinching/vibrating, some lower back pain, some ankle pain-feet were decreased in pain but not gone..
saw PCP said Neuro prescribed far to0 high of an amount and to start much lower..took 300 at bed time
Wednesday, May 6, 2009
Wed, May 6th
Left message for neuro yest with regard to feet pain-no return call. it's around the clock-what is going on!? Stopped waking up at night however. Woke up with feet pain, stiff neck, sore back, burning in backs of legs, pins in fingers, twitching, fatigue, some vibrating in feet and fingers.
Has to be a herx, feeling so out of it, sore feet, wrists, dizzy, spacey, feeling run down, tired, confused....like death. Pain in feet, heels, knees, head pressure...no appetite
FINALLY got a call back from neuro, started 600mg Neurotin(7:30) tonight...praying for relief, this is hell.
Sudden pinching from sutures in port..will call to get them snipped off.
Hoping for a better day tomorrow.
Left message for neuro yest with regard to feet pain-no return call. it's around the clock-what is going on!? Stopped waking up at night however. Woke up with feet pain, stiff neck, sore back, burning in backs of legs, pins in fingers, twitching, fatigue, some vibrating in feet and fingers.
Has to be a herx, feeling so out of it, sore feet, wrists, dizzy, spacey, feeling run down, tired, confused....like death. Pain in feet, heels, knees, head pressure...no appetite
FINALLY got a call back from neuro, started 600mg Neurotin(7:30) tonight...praying for relief, this is hell.
Sudden pinching from sutures in port..will call to get them snipped off.
Hoping for a better day tomorrow.
Tuesday, May 5, 2009
Saturday, May 2, 2009
Sat, May 2nd- HAPPY 1ST BDAY JAMIE!!
Woke up at 1 am and could NOT fall back to sleep until almost 4:( WHAT is going on with my sleep all of a sudden?!!! I am so tired, pass out right away and the next thing I know, I'm just "awake." I dont even feel a waking up process, I'm just awake. Foot pain is significant, wavy brain, achy fingers, twitchy all over. I feel like I have little firecrackers popping inside of me-all over. Buzzing/vibrating all over.
Woke up at 1 am and could NOT fall back to sleep until almost 4:( WHAT is going on with my sleep all of a sudden?!!! I am so tired, pass out right away and the next thing I know, I'm just "awake." I dont even feel a waking up process, I'm just awake. Foot pain is significant, wavy brain, achy fingers, twitchy all over. I feel like I have little firecrackers popping inside of me-all over. Buzzing/vibrating all over.
Friday, May 1, 2009
Subscribe to:
Posts (Atom)