FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
Wisest Elder Ever
|
I think the cold from MGUS or cryoglobulinemia is PAINFUL...like frostbite.
The cold from hypothyroid at least for me, is a deep cold, which leads me to making hot tea etc or soup. PNers here typically cannot stand heat...and prefer cooler temps. We typically stick our feet out from under blankets etc. When the heat sensing nerves are affected and over work, burning is often the result, and cooling off the area with Biofreeze or a cold pack helps. The people with the increased viscosity of the blood however, seem to like warmer temperatures. My feet will become uncomfortable at around 85 degrees. PN is a mixed bag depending on your particular case. Over 100 types of PN you know!
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
![]() |
![]() |
"Thanks for this!" says: | Kitt (04-13-2012) |
![]() |
#2 | ||
|
|||
Member
|
Quote:
Now that the temperature is getting warmer (at least here in Florida), when the sun hits my skin, particularly the area where the prickly sensation is the most, its very uncomfortable. The good thing about getting warmer is I dont use thick clothes which is good for my skin. Anything less touching my skin is better for me. It gives me the feeling of I am getting healed ![]() Talking about tea, I never read anything about tea in this forum. I am a tea drinker for as long as I could remember (no coffee). I limit myself to green tea (decaf). I hope there is nothing in the tea that is bad for the PN. ![]() |
||
![]() |
![]() |
![]() |
#3 | ||
|
|||
Member
|
100 types of PN?? Wow. How l am ever going to be diagnosed? So many to choose from. Will they find out where it's coming from? I really, really hope so. Then at least l can work on healing myself instead of being stuck with this.
My husband said yesterday, that we will not give up till we find out why l would have PN? Not even sure l have it, but it sure looks that way. Even though it can be something else. On Wed l see the neuro, l just have this feeling his going to play it down, like it's no big deal and send me on a couple of tests and say, they don,t know why l have it and that's it. Well, where does that leave me? It's just to easy for them to brush it off like it isn,t a big deal, because for me it is. They see so many patients and it just feels like we are another number to them. I really hope this isn,t going to be the case. Last time l saw him he told me, to seek mental help and to go on med for anxiety. Has he ever thought that the reason l am anxious is because nobody could tell me what is going on with me? Dizzy everyday ( back then) would make anyone go anxious. Sue |
||
![]() |
![]() |
![]() |
#4 | ||
|
|||
Junior Member
|
SUE, I don't know much about PN but I do know, as a lot of comments on this site also suggest, that worry and anxiety can make things worse. This has certainly been the case for me.
I thought MrsD comments were really helpful Quote:
It's probably a case of working with what I've got rather than trying to fix it. Sounds like you have a very supportive husband. I hope you had a good birthday. |
||
![]() |
![]() |
![]() |
#5 | |||
|
||||
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
|
If they figure that out from the testing, or get a clue, that won't be an issue.
Quote:
Quote:
Finding clues to a cause is another reason for keeping a journal, and getting/keeping all medical records, test results, & reports. Some people have found the Liza Jane charts & spreadsheets helpful in organizing & tracking tests, and determining which ones to ask for depending on results of previous tests. You can find them at http://www.lizajane.org/ I think it's important to be aware though, that except in a few cases where certain specific causes are determined, treatment is usually pretty much the same - treating the symptoms. The same applies to many causes that are found. What you described is pretty much how I was treated by a couple neurologists (one was the leading PN guy in the area, at a major medical center); they told me they couldn't find anything specific - that I was idiopathic, offered me a prescription for gabapentin, and told me I could check back in a year (if I wanted to) but there was nothing more they could do for me. I got similar treatment several years ago when I got IBS (initially dxed as Crohn's Disease). They sent me on my way, saying almost exactly the same thing. I did my own research then, found a treatment that worked, and I've been fine ever since. So this time I did the same thing; I got online, did a lot of reading & research (which is still ongoing) and I'm getting better (albeit more slowly). Finding a cause would be nice, but I'm not going obsess over it or make myself worse, or drive my family nuts, stressing over it. I would rather spend the time & effort finding things that help, and enjoying life as best I can. I'm still looking into & trying things, and keeping notes in my journal. I think that's why many of us are here, sharing what we've learned, our experiences, and if not getting better, trying to halt/slow the progress. Doc
__________________
Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. Last edited by Dr. Smith; 04-14-2012 at 09:12 AM. Reason: punctuation |
|||
![]() |
![]() |
![]() |
#6 | |||
|
||||
Wisest Elder Ever
|
Also... the very basic tennants of pain.... involve stopping whatever is causing it.
Our nervous system's perceptive job is to signal that something is wrong. The fragile nerve endings are supposed to tell you that an injury is happening. With much of PN, some injuries may be chemical and not visible to the naked eye. Having an exterminator come to your building and spray a potent chemical to eradicate insects, may react with YOU and set off the warning system. Consuming certain drugs or foods, may do the same. It is like a car alarm, may set off with a light touch to the car, by a dog or cat, or the wind, or a bird landing on it, and set off the alarm, when no human is stealing it in fact. Our nerve endings are an alarm system, to say--- we do not like "this" (whatever "this" is). Because the peripheral nervous system has to be sensitive to signal us to stop what is causing it to go off, there can be many triggers. Pain can come from an injury, accident, surgery and those are visibly apparent. We see and understand it. With chemical injuries, or infectious ones, we cannot see it happening with our eyes, and therefore only the pain can be the signal. And with the complexity that humans now live with, the environment is so complicated, that we have to figure out what is going on. You don't get training in school in how to read your own body. Often you don't get other training you might need too, like parenting a new baby, how to find a job, how to be a supportive spouse. If we are lucky our family network is positive and provides this "training". But having a condition like PN is a shot out of the blue, that we don't have training for and therefore don't know where to look to fix it. Doctors have always suspected things they cannot see, as either mythical or psychological, so when you go to them, they have little empathy for helping. Doctors cannot see pain, unless there is trauma or swelling to indicate it. So they tend to minimize it, and think it is imaginary or evoked for a sympathetic response. Back in history, doctors did not know bacteria existed, and thought "bad air" caused malaria, or plague. In history some disease was at times looked at as a punishment from God. If you read any medical history books you'll see examples of the evolution of "medicine" and that attitudes are still taught to students in medical school. They are for now our "modern" attitudes, but say in 50 yrs we'll look back on today and roll our eyes, and say "I can't believe they did that back then"! So the bottom line is that where medicine is still not well along in effectiveness, we as patients are left to fend for ourselves. With education, computers, books, and other skills, we can do some things ourselves. Learning how your body works, is a skill you can learn, to help yourself in many ways. But to expect a doctor to give a pill after making a pronouncement as to what the cause of a sneaky thing like PN is ...is just not here yet. We think that taking a pill, like for headache, or antibiotic for an infection, is how PN is going to be treated. And it just isn't so. IVIG and similar strong IV meds, remain the only treatment for certain types of PN which is not the common majority. For the rest of us, finding tricks to reduce pain, or to remove a chemical trigger, or help a metabolic chemical error like diabetes, is all we have. Many neurologists don't really put forth effort for sensory PNs. They figure if you can walk and talk normally, you are lucky. They cannot feel YOUR discomfort or measure it, and therefore it is not real to THEM. It is very frustrating and really, it is the exception here and not the rule to have a doctor who will go that extra mile and really do a good job with PN. Some people do come here who have good doctors, but many find little relief from doctors at all.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
|
|||
![]() |
![]() |
"Thanks for this!" says: | echoes long ago (04-14-2012), Idiopathic PN (04-14-2012), Kitt (04-14-2012), Susanne C. (04-14-2012) |
![]() |
#7 | ||||
|
|||||
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
|
Quote:
Quote:
Quote:
I have a few 19th century medical & veterinary books. They used to be great fun to read aloud at parties after people had loosened up a bit... We even made a board/parlor game out of it. A couple of examples that stuck in my mind: Treatment for lead poisoning - mercury Treatment for mercury poisoning - lead Quote:
Doc
__________________
Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
||||
![]() |
![]() |
![]() |
#8 | ||
|
|||
Junior Member
|
Hey Doc, off topic for the thread but I really want to know: what did you do about your IBS? A dear friend of mine is struggling with that and, um, I like the way you think things, so your findings will be very much appreciated.
Thanks, dyc |
||
![]() |
![]() |
![]() |
#9 | ||
|
|||
Member
|
hi
Ride-on l had a great birthday. But l had a terrible sleep that night. I had 2 glasses of champagne. During the night l woke and my heart was pounding so hard, l thought it was going to jump out of my chest and l had hot feet again and hands. But then on Sat night l went out to dinner at friends, and l had 3 glasses of white wine, and l was fine that night. Go figure. I am not as anxious now as when all this started 2 weeks ago, so l am getting there. Probably also because l am seeing Neuro on Wed and l know its not to far now to actually see if l have PN or not. Dr Smith, l do keep a diary and have so for quiet some time, since l had my dizziness episodes. You were saying 30% of patients the cause cannot be found. Wifes neuro told me the opposite she said that 70% of patience the cause of PN cannot be found. So now l am completely confused. Also you were saying to treat the symptom, but if the cause can be found, you can then treat the cause of your PN? I also don't blame the doctors entirely. mrsD-l guess when you first find out you have PN, you need to rely on somebody,and that someone is the doctor. If l didn't have this appointment coming on Wed, l think l would break down. I need to think, that there is hope, and that he may be able to help me. Like you said there is always research being conducted to find out more about this, so we have to at least hope they find something, and then put our trust in them. Otherwise what is the point of going to them in the first place. My neuro, is the only one who can probably diagnose me, so l have to trust him. The thing l dislike about doctors is they are so quick to give meds. I am not one for meds and usually have to be in immense pain to take any kind of meds. I am not saying Natural is always the best either, as l have adverse reactions to natural vitamins and minerals as well. I think diet and lifestyle are the main things we should look at. Which l have done most of the time, but have let loose here and there, and probably pushed my body too hard at times. i have learnt so much from all of you, and l suppose l won't stop learning. Its not always easy to find time, with twin girls, but l need to do this for myself and my family. I have been a pain for them in the first few days of this, but now l am back to normal, l still have it in my mind all day and night, but l am more calm. This has definitely made me more aware of my drinking and eating habits. As l have suffered with a bit of an eating issue all my life and that will too much wine, the body can only take so much. My body is probably nutrient deficient, and wine would make it even worse. So now l am eating regularly and more food in general. i don't care if l gain some weight, l just want to be healthy again. I have been slim all my life, but l have had to go hungry most of the time. Most people comment on my figure and say l look great, but at what cost? I may have ruined my health, for vanity. Just not worth it. So now l am trying to eat breakfast and lunch and dinner each day, even if l not hungry, so l can try and get more different foods in my daily diet. I want to eat more beans, legumes, sweet potato and seeds, and more yogurt as l don't eat enough of these kinds of foods. I usually just stick to protein and veggies, in one meal per day. Done this for years and ran 3-4 times per week. Many times l was starving but didn't eat. My body is trying to tell me something, and this has been my wake up call. Not to mention the message l was sending my girls. I did eat more on weekends but still waited till 5pm to eat each day. Not normal is it? Scared to eat that was my problem. I feel much better now, my symptoms have settled down. If they stay like this forever, l can live quiet happily. I can only think for today, and not worry too much about tomorrow, as long as l keep clean living and eat healthy and not drink too much and stress l think l will be fine. Thanks again, you are fantastic, l love this forum so much. This has really helped me regain control. Sue ![]() |
||
![]() |
![]() |
![]() |
#10 | ||||||
|
|||||||
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
|
Quote:
![]() ![]() Quote:
Quote:
![]() Concerning doctors being quick to give meds, that's what they're trained to do. Our western doctors are (in general) taught basically two modalities of treatment - medication and surgery. They don't have a lot of education/training in nutrition, supplements, alternative therapies, or holistic views. They have been trained to value the concrete and precise, and dismiss the intangible (difficult to define or describe, but nonetheless perceived/real). So if a problem can't be dealt with by either medication or surgery, they're apt to pass it on, ignore/dismiss it, give up, etc. Doctors are also individuals like us, so not all are going to strictly conform to the above. Quote:
![]() Quote:
![]() Quote:
![]() Best wishes, Doc
__________________
Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
||||||
![]() |
![]() |
"Thanks for this!" says: | ginnie (04-20-2012) |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
should I be worried? | Traumatic Brain Injury and Post Concussion Syndrome | |||
Worried | Reflex Sympathetic Dystrophy (RSD and CRPS) | |||
Worried about liver problems in future from so many meds... | Vitamins, Nutrients, Herbs and Supplements | |||
worried | New Member Introductions |