I'm interested to know what you are taking on a daily / weekly basis - appreciate the medical models and also the complementary models ... to support our journey .... and know the weight gain / side effects of some of the current suggested medications.
Its been a steep learning curve and I wonder what you are taking that you feel helps - perhaps more on the Vitamin side than prescriptions ? But both would be helpful
Also does the cold or warmer /hot weather effect you ?
Enjoy your day - early eve on this side of our world.
I came across this website about MS. As there are some theoretical similarities between MS and CIDP ( damage to myelin sheath) I have decided to give the approach a try. I am taking fish oil and Vitamin D. The diet is pretty hard but I want to try it for 6 mths.
Janie,
I take 1200 mg of fish oil, alpha Lipoic acid and Wonder Valerin. Not valerian, Valerin! Only from Wonder. Plus, I get IVIg every 8 weeks, 2X, inpatient, so I have a very slow infusion rate.
It's my 3rd month since I was diagnosed with CIDP. My upper body wasn't affected so I guess I am still lucky. Aside from the prescribed predisone my neuro gave me, he supplemented it with AlaNerve. The healing rays of natural sunlight generates vitamin D which I expose myself every morning. A tablespoon of virgin coconut oil every meal. Omega 3 fish oil supplement (myelin sheath is fat) . Gingko biloba for blood circulation. Lots of water. Aside from physical therapy I regularly do my exercise (weights to strengthen my arms and walking in the swimming pool. It really helps a lot (swimming) not mentioning relieving leg pains due to water retention and swollen foot due to the side effects of steroids. From foot drop, to wheel chair, to walker, I am now practicing using a cane. My bladder issues have significantly improved though but still dealing with constipation which is not so bad as before. I still have the typical back pain when I get tired walking. I still have the typical leg discomfort at night. I never talk pharmaceutical anti-inflammatory drugs. And by personal choice and as an alternative to NSAID I chose to consume (not smoke) cannabis instead. I know it's illegal but what the heck it eases my pain.
On the question of weather, I find hot weather very debilitating. My neurologist explained that higher temperatures cause the nerves to conduct more slowly. When they are normal, you don't generally notice, but when they are conducting poorly already, a slight increase in temperature can cause noticeable problems. However, even many 'normal' people feel sluggish in warm weather.
After my neurologist told me this, I said, "I suppose I should not retire to Florida." He thought for a moment, then said, "No. Minnesota."
I once got myself in trouble taking a hot bath, before I realized the problem. I got so weak that I could not stand up, and had to flop over the side to get out.
By the way, people with MS have the same problem with heat. I trade stories with a friend from church who has MS.
Wowwww i have learned soo much thank you guys for sharing. Never really paid attention to the heat having that much of a effect on you but now that i think about it i recgnoize it now.Gosh i cant believe i missed that. Come to think of it my cidp has gotten better since the cool weather, Big hugs to all...amy
I’m on Ivig and imuran which both suppress my immune system and get food benefits. No daily steroids for me. I only take 10 mg of decadron with ivig so two days a month to keep away the meningeal headache from ivig
Since part of my therapy is to exercise in the pool, my rehab doctor advised me to swim in cool water. That is to wake up my nerves and I agree. He also told me that staying in warm water for more than 10 minutes could weaken my muscles and lessen my endurance.
Uncle Bill said:
On the question of weather, I find hot weather very debilitating. My neurologist explained that higher temperatures cause the nerves to conduct more slowly. When they are normal, you don't generally notice, but when they are conducting poorly already, a slight increase in temperature can cause noticeable problems. However, even many 'normal' people feel sluggish in warm weather.
After my neurologist told me this, I said, "I suppose I should not retire to Florida." He thought for a moment, then said, "No. Minnesota."
I once got myself in trouble taking a hot bath, before I realized the problem. I got so weak that I could not stand up, and had to flop over the side to get out.
By the way, people with MS have the same problem with heat. I trade stories with a friend from church who has MS.
I find it very interesting that you are using marijuana for your symptoms. I have done a lot of research on this topic, and although I probably would not smoke it, I would be open to trying consumption. My question to you is how well it actually works to treat your symptoms, or does it just have a generalized effect on your sense of well-being?
I am 53 years old, but not been exposed to marijuana since my college days. I'm a little reluctant to try it, but I'm interested in your overall experience. It may be that others on the site are using it also, and I would be interested in their experiences as well.
Unfortunately, medical marijuana is not yet legal in my state, but it really should be. One additional question for you is the amount you need to consume for therapeutic effects. Thanks!
Eltimax said:
It's my 3rd month since I was diagnosed with CIDP. My upper body wasn't affected so I guess I am still lucky. Aside from the prescribed predisone my neuro gave me, he supplemented it with AlaNerve. The healing rays of natural sunlight generates vitamin D which I expose myself every morning. A tablespoon of virgin coconut oil every meal. Omega 3 fish oil supplement (myelin sheath is fat) . Gingko biloba for blood circulation. Lots of water. Aside from physical therapy I regularly do my exercise (weights to strengthen my arms and walking in the swimming pool. It really helps a lot (swimming) not mentioning relieving leg pains due to water retention and swollen foot due to the side effects of steroids. From foot drop, to wheel chair, to walker, I am now practicing using a cane. My bladder issues have significantly improved though but still dealing with constipation which is not so bad as before. I still have the typical back pain when I get tired walking. I still have the typical leg discomfort at night. I never talk pharmaceutical anti-inflammatory drugs. And by personal choice and as an alternative to NSAID I chose to consume (not smoke) cannabis instead. I know it's illegal but what the heck it eases my pain.
I came across this website about MS. As there are some theoretical similarities between MS and CIDP ( damage to myelin sheath) I have decided to give the approach a try. I am taking fish oil and Vitamin D. The diet is pretty hard but I want to try it for 6 mths.
Janie, I take 1200 mg of fish oil, alpha Lipoic acid and Wonder Valerin. Not valerian, Valerin! Only from Wonder. Plus, I get IVIg every 8 weeks, 2X, inpatient, so I have a very slow infusion rate.
It's my 3rd month since I was diagnosed with CIDP. My upper body wasn't affected so I guess I am still lucky. Aside from the prescribed predisone my neuro gave me, he supplemented it with AlaNerve. The healing rays of natural sunlight generates vitamin D which I expose myself every morning. A tablespoon of virgin coconut oil every meal. Omega 3 fish oil supplement (myelin sheath is fat) . Gingko biloba for blood circulation. Lots of water. Aside from physical therapy I regularly do my exercise (weights to strengthen my arms and walking in the swimming pool. It really helps a lot (swimming) not mentioning relieving leg pains due to water retention and swollen foot due to the side effects of steroids. From foot drop, to wheel chair, to walker, I am now practicing using a cane. My bladder issues have significantly improved though but still dealing with constipation which is not so bad as before. I still have the typical back pain when I get tired walking. I still have the typical leg discomfort at night. I never talk pharmaceutical anti-inflammatory drugs. And by personal choice and as an alternative to NSAID I chose to consume (not smoke) cannabis instead. I know it's illegal but what the heck it eases my pain.
On the question of weather, I find hot weather very debilitating. My neurologist explained that higher temperatures cause the nerves to conduct more slowly. When they are normal, you don't generally notice, but when they are conducting poorly already, a slight increase in temperature can cause noticeable problems. However, even many 'normal' people feel sluggish in warm weather.
After my neurologist told me this, I said, "I suppose I should not retire to Florida." He thought for a moment, then said, "No. Minnesota."
I once got myself in trouble taking a hot bath, before I realized the problem. I got so weak that I could not stand up, and had to flop over the side to get out.
By the way, people with MS have the same problem with heat. I trade stories with a friend from church who has MS.
I find it very interesting that you are using marijuana for your symptoms. I have done a lot of research on this topic, and although I probably would not smoke it, I would be open to trying consumption. My question to you is how well it actually works to treat your symptoms, or does it just have a generalized effect on your sense of well-being?
I am 53 years old, but not been exposed to marijuana since my college days. I'm a little reluctant to try it, but I'm interested in your overall experience. It may be that others on the site are using it also, and I would be interested in their experiences as well.
Unfortunately, medical marijuana is not yet legal in my state, but it really should be. One additional question for you is the amount you need to consume for therapeutic effects. Thanks!
Eltimax said:
It's my 3rd month since I was diagnosed with CIDP. My upper body wasn't affected so I guess I am still lucky. Aside from the prescribed predisone my neuro gave me, he supplemented it with AlaNerve. The healing rays of natural sunlight generates vitamin D which I expose myself every morning. A tablespoon of virgin coconut oil every meal. Omega 3 fish oil supplement (myelin sheath is fat) . Gingko biloba for blood circulation. Lots of water. Aside from physical therapy I regularly do my exercise (weights to strengthen my arms and walking in the swimming pool. It really helps a lot (swimming) not mentioning relieving leg pains due to water retention and swollen foot due to the side effects of steroids. From foot drop, to wheel chair, to walker, I am now practicing using a cane. My bladder issues have significantly improved though but still dealing with constipation which is not so bad as before. I still have the typical back pain when I get tired walking. I still have the typical leg discomfort at night. I never talk pharmaceutical anti-inflammatory drugs. And by personal choice and as an alternative to NSAID I chose to consume (not smoke) cannabis instead. I know it's illegal but what the heck it eases my pain.
I'm on Ivig and imuran which both suppress my immune system and get food benefits. No daily steroids for me. I only take 10 mg of decadron with ivig so two days a month to keep away the meningeal headache from ivig
I find it very interesting that you are using marijuana for your symptoms. I have done a lot of research on this topic, and although I probably would not smoke it, I would be open to trying consumption. My question to you is how well it actually works to treat your symptoms, or does it just have a generalized effect on your sense of well-being?
I am 53 years old, but not been exposed to marijuana since my college days. I'm a little reluctant to try it, but I'm interested in your overall experience. It may be that others on the site are using it also, and I would be interested in their experiences as well.
Unfortunately, medical marijuana is not yet legal in my state, but it really should be. One additional question for you is the amount you need to consume for therapeutic effects. Thanks!
Eltimax said:
It's my 3rd month since I was diagnosed with CIDP. My upper body wasn't affected so I guess I am still lucky. Aside from the prescribed predisone my neuro gave me, he supplemented it with AlaNerve. The healing rays of natural sunlight generates vitamin D which I expose myself every morning. A tablespoon of virgin coconut oil every meal. Omega 3 fish oil supplement (myelin sheath is fat) . Gingko biloba for blood circulation. Lots of water. Aside from physical therapy I regularly do my exercise (weights to strengthen my arms and walking in the swimming pool. It really helps a lot (swimming) not mentioning relieving leg pains due to water retention and swollen foot due to the side effects of steroids. From foot drop, to wheel chair, to walker, I am now practicing using a cane. My bladder issues have significantly improved though but still dealing with constipation which is not so bad as before. I still have the typical back pain when I get tired walking. I still have the typical leg discomfort at night. I never talk pharmaceutical anti-inflammatory drugs. And by personal choice and as an alternative to NSAID I chose to consume (not smoke) cannabis instead. I know it's illegal but what the heck it eases my pain.
I'm on Ivig and imuran which both suppress my immune system and get food benefits. No daily steroids for me. I only take 10 mg of decadron with ivig so two days a month to keep away the meningeal headache from ivig
I'm on Ivig and imuran which both suppress my immune system and get food benefits. No daily steroids for me. I only take 10 mg of decadron with ivig so two days a month to keep away the meningeal headache from ivig
I had no idea about the heat. I absolutely HATE the heat. I would always tell people that it just completely zaps the energy out of me but I never knew there was an actual physical reason why I felt like that!!! Thanks Uncle Bill for that bit of information!
Uncle Bill said:
On the question of weather, I find hot weather very debilitating. My neurologist explained that higher temperatures cause the nerves to conduct more slowly. When they are normal, you don't generally notice, but when they are conducting poorly already, a slight increase in temperature can cause noticeable problems. However, even many 'normal' people feel sluggish in warm weather.
After my neurologist told me this, I said, "I suppose I should not retire to Florida." He thought for a moment, then said, "No. Minnesota."
I once got myself in trouble taking a hot bath, before I realized the problem. I got so weak that I could not stand up, and had to flop over the side to get out.
By the way, people with MS have the same problem with heat. I trade stories with a friend from church who has MS.
i can relate to the hot weather,i'm from vegas and just as i moved here 18 months ago i started to get all the symptoms of CIDP and last summer was the worst could not even go outside,even at night it bothered me to go outside. thats why i'm getting out of dodge and move back east to cape cod in a couple of months.............