My wife's spasms were significantly reduced by switching from Neurontin to Lyrica and adding powdered Gaba and Taurine to my smoothies. See if your Doc’s and pharmacist think it’s valid for you…
estaban said:
Thanks for that reply, Greepster!
Egad, it's flu season! Yesterday I got the dreaded flu shot and today it shreds me ... the palm fronds must wait.
The flu shot, according to my neuro's decision about getting it... well, I think he just flipped a coin when we spoke on the phone. He is all textbook and only one of three nervous neuros practicing on this island... pathetic!. My PCP refused to administer a flu shot over malpractice concerns ( I think), so I went to a CVC pharmacy.
Did I get CIDP from a flu shot in 1999 or 2010 or ? Who knows, who will ever know? My neuro is good, but not versed in this disease... yet.
Geepster said:
I went through the same thing with my neuro (continue to go through) when I explain my "spasms" as severe, sometimes affecting almost any of my muscles : fascial, abdominal, etc. He just looks at me like I had two heads and carries on with HIS thought process. UGGGGGGG! I go through the same extremes trying to deal with my stress from frustrations generated by the disease itself but made worse sometimes by the medical profession itself in it's failure to really understand all the facets of this disease that can make our lives miserable but with which we try to deal with daily by shredding the palm fronds, going to the gym to overdo it, running, or doing the opposite by medicating and just doing nothing. Where's the middle ground? I think it's right here on LivingwithCIDP!!!! The understanding of fellow patients ( I refuse to use the words "suffers", "victims") is what keeps me afloat sometimes -my beacon in the night. PS I think it's a great idea to see a Physiatrist to get an overall, independent evaluation of the condition and some practical recommendations.
estaban said:
Just had a through exam by a physiatrist (for rehabilitation). I mentioned spasticity as a symptom of my muscle dysfunction, but he told me spasticity was upper neuron driven. He then tested all range-of-motion muscles for spasticity and i had no upper neuron involvement (thank all the Gods in the universe!).
So, what is our muscle cementing called? Rigidity? Numbness? Paralysis? Paresthesia? Stiffness? I have all these sensations and more, but trying to explain muscle symptoms of CIDP to neuros, physiatrist, PCPs, nurses, oncologists, urologists, etc...is at times impossible because each relapse or trough I suffer is so different in terms of muscle dysfunction presentation.
I'm thinking that if I buy a new Nissan Exterra I will be more macho driven and feral... then I'll buy an ocean canoe, fishing gear and regardless of the state of the disease, I'll force/push myself to the pain state, and then, as I explore my island, I may get over that hump of fear, of trepidation about all the negative aspects of this ()*&* !!*&!! disease! I swim miles and miles to relieve stress now, but it's getting boring. Stress relieving drugs... like a pat on the head from MOM when I was a teenager. I want more out of my final years.
Tomorrow... I''ll shred and mulch trees and palm fronds. Constant movement in one place, noisy as hell, dirty and sweaty work... but Ill walk away, when done 4 or 5 hours later, like the guy in the Brawny paper-towel commercial! And the next day, I'll fell great, or feel like I was run over by a rock-crushing tractor. LOL
Sunshine said:
I always thought that I was good with dealing with stress by pushing it way down into my soul, but all it really has done is make me ill & fatigued. I've never heard of lorazepine or do you mean lorazepam which is Ativan? I currently take diazepam (Valium) for stress, bruxism, and spasticity.
Right now, I have a dual dx of MS & CIDP and was really hoping it was "only" CIDP, but if spasticity is upper motor neuro driven, I'm screwed! My 3rd & 4th toes curl under something fierce and my calves will tighten. I will have to bend down and release my toes with my fingers, but my calves will stay spastic. Luckily I don't have much feeling in my calves or I imagine it would hurt way worse than it does, but the diazepam does help. UGH!
estaban said:
Just had a through exam by a physiatrist (for rehabilitation). I mentioned spasticity as a symptom of my muscle dysfunction, but he told me spasticity was upper neuron driven. He then tested all range-of-motion muscles for spasticity and i had no upper neuron involvement (thank all the Gods in the universe!).
So, what is our muscle cementing called? Rigidity? Numbness? Paralysis? Paresthesia? Stiffness? I have all these sensations and more, but trying to explain muscle symptoms of CIDP to neuros, physiatrist, PCPs, nurses, oncologists, urologists, etc...is at times impossible because each relapse or trough I suffer is so different in terms of muscle dysfunction presentation.
I'm thinking that if I buy a new Nissan Exterra I will be more macho driven and feral... then I'll buy an ocean canoe, fishing gear and regardless of the state of the disease, I'll force/push myself to the pain state, and then, as I explore my island, I may get over that hump of fear, of trepidation about all the negative aspects of this ()*&* !!*&!! disease! I swim miles and miles to relieve stress now, but it's getting boring. Stress relieving drugs... like a pat on the head from MOM when I was a teenager. I want more out of my final years.
Tomorrow... I''ll shred and mulch trees and palm fronds. Constant movement in one place, noisy as hell, dirty and sweaty work... but Ill walk away, when done 4 or 5 hours later, like the guy in the Brawny paper-towel commercial! And the next day, I'll fell great, or feel like I was run over by a rock-crushing tractor. LOL
Sunshine said:
I always thought that I was good with dealing with stress by pushing it way down into my soul, but all it really has done is make me ill & fatigued. I've never heard of lorazepine or do you mean lorazepam which is Ativan? I currently take diazepam (Valium) for stress, bruxism, and spasticity.
Reply to Sunshine re:some spasms can be due to UMNL vs LMNL/ upper lesions vs lower lesions
Yes, some upper motor neuron “lesions” are associated with spasms of the extremities eg CP, but not all spasms are UMNL. I have identical spasms as you but my neuro says there’s a greater probability that it arises in the screwed-up end mechanism at the neuro-muscular junction that result in spasms bec. Of abberant excitation of already pathologic muscle and nerve endings. More significantly, there should be identifiable changes on the electro-diagnostic studies. I sure hope for your sake that is not upper AND lower motor involvement. I empathize with the “Ugg”.
Sunshine said:
Right now, I have a dual dx of MS & CIDP and was really hoping it was “only” CIDP, but if spasticity is upper motor neuro driven, I’m screwed! My 3rd & 4th toes curl under something fierce and my calves will tighten. I will have to bend down and release my toes with my fingers, but my calves will stay spastic. Luckily I don’t have much feeling in my calves or I imagine it would hurt way worse than it does, but the diazepam does help. UGH!
estaban said:
Just had a through exam by a physiatrist (for rehabilitation). I mentioned spasticity as a symptom of my muscle dysfunction, but he told me spasticity was upper neuron driven. He then tested all range-of-motion muscles for spasticity and i had no upper neuron involvement (thank all the Gods in the universe!).
So, what is our muscle cementing called? Rigidity? Numbness? Paralysis? Paresthesia? Stiffness? I have all these sensations and more, but trying to explain muscle symptoms of CIDP to neuros, physiatrist, PCPs, nurses, oncologists, urologists, etc…is at times impossible because each relapse or trough I suffer is so different in terms of muscle dysfunction presentation.
I’m thinking that if I buy a new Nissan Exterra I will be more macho driven and feral… then I’ll buy an ocean canoe, fishing gear and regardless of the state of the disease, I’ll force/push myself to the pain state, and then, as I explore my island, I may get over that hump of fear, of trepidation about all the negative aspects of this ()& !!*&!! disease! I swim miles and miles to relieve stress now, but it’s getting boring. Stress relieving drugs… like a pat on the head from MOM when I was a teenager. I want more out of my final years.
Tomorrow… I’'ll shred and mulch trees and palm fronds. Constant movement in one place, noisy as hell, dirty and sweaty work… but Ill walk away, when done 4 or 5 hours later, like the guy in the Brawny paper-towel commercial! And the next day, I’ll fell great, or feel like I was run over by a rock-crushing tractor. LOL
Sunshine said:
I always thought that I was good with dealing with stress by pushing it way down into my soul, but all it really has done is make me ill & fatigued. I’ve never heard of lorazepine or do you mean lorazepam which is Ativan? I currently take diazepam (Valium) for stress, bruxism, and spasticity.
I've been tryng part of the sleep aids related to a study at UCLA by Dr. Dr.Dale E. Bredesen below.
GABA lozenges, time released Melatonin and 5-HTP 100 mg right before sleep (L-5-Hydroxytryptophan) along with a full glass of water with liquid magnesium added…sleep and extra hour and now my dreams are back! Which I take as a sign of stress reduction ;-)
This is not meant as a suggestion. Just one personal observation. Anyone should speak with their pharmacist and Doc’s before self-medicating with OTC’s.
Reply to Sunshine re:some spasms can be due to UMNL vs LMNL/ upper lesions vs lower lesions Yes, some upper motor neuron "lesions" are associated with spasms of the extremities eg CP, but not all spasms are UMNL. I have identical spasms as you but my neuro says there's a greater probability that it arises in the screwed-up end mechanism at the neuro-muscular junction that result in spasms bec. Of abberant excitation of already pathologic muscle and nerve endings. More significantly, there should be identifiable changes on the electro-diagnostic studies. I sure hope for your sake that is not upper AND lower motor involvement. I empathize with the "Ugg".
Sunshine said:
Right now, I have a dual dx of MS & CIDP and was really hoping it was "only" CIDP, but if spasticity is upper motor neuro driven, I'm screwed! My 3rd & 4th toes curl under something fierce and my calves will tighten. I will have to bend down and release my toes with my fingers, but my calves will stay spastic. Luckily I don't have much feeling in my calves or I imagine it would hurt way worse than it does, but the diazepam does help. UGH!
estaban said:
Just had a through exam by a physiatrist (for rehabilitation). I mentioned spasticity as a symptom of my muscle dysfunction, but he told me spasticity was upper neuron driven. He then tested all range-of-motion muscles for spasticity and i had no upper neuron involvement (thank all the Gods in the universe!).
So, what is our muscle cementing called? Rigidity? Numbness? Paralysis? Paresthesia? Stiffness? I have all these sensations and more, but trying to explain muscle symptoms of CIDP to neuros, physiatrist, PCPs, nurses, oncologists, urologists, etc...is at times impossible because each relapse or trough I suffer is so different in terms of muscle dysfunction presentation.
I'm thinking that if I buy a new Nissan Exterra I will be more macho driven and feral... then I'll buy an ocean canoe, fishing gear and regardless of the state of the disease, I'll force/push myself to the pain state, and then, as I explore my island, I may get over that hump of fear, of trepidation about all the negative aspects of this ()*&* !!*&!! disease! I swim miles and miles to relieve stress now, but it's getting boring. Stress relieving drugs... like a pat on the head from MOM when I was a teenager. I want more out of my final years.
Tomorrow... I''ll shred and mulch trees and palm fronds. Constant movement in one place, noisy as hell, dirty and sweaty work... but Ill walk away, when done 4 or 5 hours later, like the guy in the Brawny paper-towel commercial! And the next day, I'll fell great, or feel like I was run over by a rock-crushing tractor. LOL Sunshine: What lessened my wife's spasms was:" Lyrica, GABA and TAURINE (Neurontin did not work as well)
Perahps consider a discussion with your Pharm & Docs... < ? >
Sunshine said:
I always thought that I was good with dealing with stress by pushing it way down into my soul, but all it really has done is make me ill & fatigued. I've never heard of lorazepine or do you mean lorazepam which is Ativan? I currently take diazepam (Valium) for stress, bruxism, and spasticity.
............. just a follow up with Estaban and Sunshine about the state of your spasm/cramps/lead pipe/muscle conditions and any resolution? Does pushing it help or just make it worse in the long run? The only thing I find that helps is the small dose of Lorazepam (0.5mg) plus plenty of Powerade Zero Electrolyte Sport Drink. When it affects my neck I go bonkers then have to deal with the headache it produces. Save me a seat in the Extra but I'll pass on the canoe for now!
Loni Hart said:
Geepster said:
Reply to Sunshine re:some spasms can be due to UMNL vs LMNL/ upper lesions vs lower lesions Yes, some upper motor neuron "lesions" are associated with spasms of the extremities eg CP, but not all spasms are UMNL. I have identical spasms as you but my neuro says there's a greater probability that it arises in the screwed-up end mechanism at the neuro-muscular junction that result in spasms bec. Of abberant excitation of already pathologic muscle and nerve endings. More significantly, there should be identifiable changes on the electro-diagnostic studies. I sure hope for your sake that is not upper AND lower motor involvement. I empathize with the "Ugg".
Sunshine said:
Right now, I have a dual dx of MS & CIDP and was really hoping it was "only" CIDP, but if spasticity is upper motor neuro driven, I'm screwed! My 3rd & 4th toes curl under something fierce and my calves will tighten. I will have to bend down and release my toes with my fingers, but my calves will stay spastic. Luckily I don't have much feeling in my calves or I imagine it would hurt way worse than it does, but the diazepam does help. UGH!
estaban said:
Just had a through exam by a physiatrist (for rehabilitation). I mentioned spasticity as a symptom of my muscle dysfunction, but he told me spasticity was upper neuron driven. He then tested all range-of-motion muscles for spasticity and i had no upper neuron involvement (thank all the Gods in the universe!).
So, what is our muscle cementing called? Rigidity? Numbness? Paralysis? Paresthesia? Stiffness? I have all these sensations and more, but trying to explain muscle symptoms of CIDP to neuros, physiatrist, PCPs, nurses, oncologists, urologists, etc...is at times impossible because each relapse or trough I suffer is so different in terms of muscle dysfunction presentation.
I'm thinking that if I buy a new Nissan Exterra I will be more macho driven and feral... then I'll buy an ocean canoe, fishing gear and regardless of the state of the disease, I'll force/push myself to the pain state, and then, as I explore my island, I may get over that hump of fear, of trepidation about all the negative aspects of this ()*&* !!*&!! disease! I swim miles and miles to relieve stress now, but it's getting boring. Stress relieving drugs... like a pat on the head from MOM when I was a teenager. I want more out of my final years.
Tomorrow... I''ll shred and mulch trees and palm fronds. Constant movement in one place, noisy as hell, dirty and sweaty work... but Ill walk away, when done 4 or 5 hours later, like the guy in the Brawny paper-towel commercial! And the next day, I'll fell great, or feel like I was run over by a rock-crushing tractor. LOL Sunshine: What lessened my wife's spasms was:" Lyrica, GABA and TAURINE (Neurontin did not work as well)
Perahps consider a discussion with your Pharm & Docs... < ? >
Sunshine said:
I always thought that I was good with dealing with stress by pushing it way down into my soul, but all it really has done is make me ill & fatigued. I've never heard of lorazepine or do you mean lorazepam which is Ativan? I currently take diazepam (Valium) for stress, bruxism, and spasticity.
