My neurologist says the pain I am feeling is from my nerves waking up. The pain is getting worse. Cramping deep aching , head aches are coming and staying. My arm is bruised and black and blue from blowouts in IVIG the nude just jokes she is leaving her mark. Not funny at all. Deep breathing is getting more painfull. I can’t drink enough water. It make bowel movements dificult. I feel like I am whining but is there something else going on?
Hi, your symptoms and mine are almost
identical. I don’t know about the nerves
waking up part, as the pain you describe
hasn’t decreased with my IVIG, but it now
comes and goes, when it goes it isn’t
gone for more than a day and then it
comes back with a vengeance. I felt
ok yesterday and today I can’t get out
of bed. Hang in there, you’re not
alone in this!!! Bobby
hi Robert,My neuro is keen for me to drink a lot of water during IVIG treatments.He says hydration is essential.Constipation,I guess you mean,I can assure you can be sorted out with a good old fashioned 1960s British enema-I used to give them for a living.I'm a little out of practice and they breached human rights anyway.
As for pain and cramps,I have researched medical cannabis and a good indica strain is recommended.If you have a legal cannabis medical system I would make use of it.I'm hopeful the law in the UK will change soon so we will not have to face getting arrested.Cannabis is the best thing that works for me,as an adjunct to IVIG.See what the medics say but I'm not keen on getting addicted to opiates they give you like confetti.
Hi folks.
Sadly it is my hubby who has CIDP. He was having IVIG every 4 weeks and then the neuro stretched it to 5 weeks - Not good. He is due for infusions on Thursday and the extra week has been really hard for him. His pain and cramps are similar to yours and can be a little less painful sometimes but then it can be very bad.
He also finds that cannabis is the best treatment for him and he was prosecuted for growing it!! However, the procurator fiscal understood the reason why he needed it and he was let off with a 'telling off' (the scottish way of dealing with it) When the police came they said that they knew of many people in his situation who grew their own supply. We got the feeling that they thought the whole thing was a waste of their time. We have asked both our GP and the neuro about the cannabis trials and they said that it didn't prove to be of any benefit! Ironically we were advised initially that the best strain was sativa - whatever - when he has it at least he is able to sleep at night.
akamalaccas said:
hi Robert,My neuro is keen for me to drink a lot of water during IVIG treatments.He says hydration is essential.Constipation,I guess you mean,I can assure you can be sorted out with a good old fashioned 1960s British enema-I used to give them for a living.I'm a little out of practice and they breached human rights anyway.
As for pain and cramps,I have researched medical cannabis and a good indica strain is recommended.If you have a legal cannabis medical system I would make use of it.I'm hopeful the law in the UK will change soon so we will not have to face getting arrested.Cannabis is the best thing that works for me,as an adjunct to IVIG.See what the medics say but I'm not keen on getting addicted to opiates they give you like confetti.
http://en.wikipedia.org/wiki/Autonomic_dysreflexia
READ COMPLETELY. THIS CONDITION NEARLY KILLED ME THREE WEEKS AGO. I WAS 5 SECONDS AWAY FROM DEATH, LUCKY IWAS NOT ALONE THAT DAY. Blaring sirens, 5 days in the hospital and I am still trying to recover.
Drink gallons of water or any non-sugar flavored drink! At least 60+ fluid ounces or more each day.
Dizzy when you stand? Take this very seriously.
Oh boy, did I get the constipation bit wrong! See a gastroenterologist, don't mess around this this or a probable urethral tract infection. Nerves, muscles no matter how small... if the spinal sensory neurons and the motor neurons clash in autonomic dysreflexia you have about 5 seconds to call for serious help!
Breathing at any level of dysfunction is dangerous.
As you can see, if your read down into this article, Gillian- Barr Syndrome is mentioned, so this also includes CIDP information.
To stay properly hydrated, take your weight in pounds and divide by 2 and that number equals the amount of ounces of fluids you need per day. For instance, if you weigh 224, divide that by 2 equals 112 ounces of fluids you need each day. The number is different for everybody and of course, you will get some ounces of fluid from the foods you eat each day. And remember don't try to drink all those ounces in a short amount of time or you can cause your brain to swell.
Thanks Sunshine... I need 80 plus ounces every day.
Sunshine said:
To stay properly hydrated, take your weight in pounds and divide by 2 and that number equals the amount of ounces of fluids you need per day. For instance, if you weigh 224, divide that by 2 equals 112 ounces of fluids you need each day. The number is different for everybody and of course, you will get some ounces of fluid from the foods you eat each day. And remember don't try to drink all those ounces in a short amount of time or you can cause your brain to swell.
No more than 64 ounces of water. You can drink additional juice, Gatorade ect… I had a bad episode of low sodium and could have died after 4th ivig. I was drinking 128 ounces plus of water everyday. The medicine were on and ivig deplete are sodium level so drink other things also. I now have to see a renal Dr to make sure I stay on right track. I’m doing good now. They also give me sodium with the ivig.
See if your DOC thinks it's safe for you to take moderate amounts of Taurine before bed with low sugar Tonic water (Quinine)
Taurine reference... thanks
en.wikipedia.org/wiki/Taurine
Will read more.
Loni Hart said:
See if your DOC thinks it's safe for you to take moderate amounts of Taurine before bed with low sugar Tonic water (Quinine)