LETTER ABOUT PAIN

I HAVE BEEN WORKING ON THE FLYLADY ROUTINES - I AM ENJOYING IT MORE AND MORE. WHAT I LIKE ABOUT THE FLY LADY IS THAT I CAN ADAPT THE ROUTINES TO FIT MY LIFE. I CAN ADD OR TAKE AWAY, I CAN REARRANGE AND FIT THINGS WHERE THEY NEED TO GO. FOR EXAMPLE, ON A FLY LADY WEEKLY ROUTINE, THEY HAVE TUESDAY AS A FREE DAY AND THURSDAY IS ERRAND DAY, SO I REARRANGED, BECAUSE MY MONTHLY DR. H VISIT FALLS ON A TUESDAY, I MADE THAT MY ERRAND DAY. SO, I CAN RUN THE ERRANDS I NEED TO ON THAT DAY, WHILE I AM OUT. SINCE I DON'T LIKE TO GET OUT MUCH, THIS WAS PERFECT - ONE DAY TO PUSH MY BUTT THROUGH THE DOOR.

THEN ON THURSDAY I REARRANGED, AND I MADE MY FREE/OFF DAY AS MONDAY. MY REASON IS BECAUSE WE ARE PRETTY BUSY ON THE WEEKENDS. IT USUALLY TAKES ALL DAY MONDAY TO RECOVER FROM THE WEEKEND. SO, I CAN ADAPT THE ROUTINES AND SCHEDULES TO FIT MY LIFE.

TAKE A LOOK AT FLY LADY.COM TODAY AND CHECK IT OUT. WITH MY BEING UNABLE TO WALK WELL OR BECAUSE I FIND MYSELF SOMETIMES HAVING TO WORK AROUND THE THINGS I WANT TO DO. BUT, I CAN SPEND 15 MINUTES DOING ANYTHING. YOU CAN DO ANYTHING IN 15 MINUTES TOO.

THIS FLY LADY STUFF REALLY HAS ME GOING AND IT FITS MY WIEGHT WATCHERS STUFF TOO. I LOVE IT, AND I THINK YOU WILL TOO.

I AM REALLY DOING THOSE BABY STEPS AND I AM A FLY BABY!!!

I AM GONNA GET A FEW THINGS FROM THE FLY LADY STORE TOO. LIKE THE STAINLESS STEEL, SWEAT FREE WATER BOTTLE! I AM GONNA GET ONE FOR MY MOM TOO. IT'S PRETTY PLUS IT FITS MY LIFE WELL. SO - A FEW THINGS TO HELP ME OUT WILL MAKE THINGS SO MUCH EASIER.

SO, THERE'S MY UPDATE ON FLY BABY!





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Monday, August 24, 2009 9:24 AM
A Letter to ANYONE about my PAIN
Current mood: aggravated
Category: Life
........



A letter about my pain



Dear Loved Ones;
I have been thinking lately, how often I get asked about my pain, or how I struggle and make it through the pain. I have been asked if I would share my experience of being a pain patient, what I go through on a daily basis, the struggles I face, and the importance of my medications and my therapy that exist in my life. I thought about this and I felt the best way to do this was to share what other Pain sufferers have wrote and shared with me, and add in my own experience as well. I found after reading a similar letter as this one here, on an RSD website showed that a one Mr. Orsini, a pain sufferer for more than 30 years set up a wonderful template for any of us to follow in order to show what a typical day in the life of any Pain patient was like. That was found at http://www.ctpainfoundation.com.
I myself have had Trigeminal Neuralgia (TN) for over 6 years now, since 2002, That's just diagnosed thought, in October of 2002, it isn't the count of how long I have had TN. I have had TN since birth and a slap to a face set of the nerve pain higher than ever before and it spiraled downhill from there. It still took eleven years to diagnos. I had been in severe pain from just the TN alone since July of 1992. Although I have several other pain disorders as well as possible RSD, I have chosen to concentrate on all of them and not just one in particular. Since they all complicate my life.
To name a few I also have Neuropathy diagnosed in 2008, Fibromyalgia diagnosed in 2008, Nerve Damage, Arthritis, Asthma, Carpal Tunnel in both hands diagnosed in 2002, Pluerisy, Siatica Nerve Pain scine I was age 10 years, High Blood Pressure, High Cholesterol, Depression, Anxiety, and not to mention the few I am still being tested for such as RSD, MS, Lupus and a few others - the list never ends for me. So Chronic Pain and I are very old and very close friends. As a result, I have come to know my pain well. What it means, what I must do to accomodate that pain for that day, what I must take and how I must accomplish even a simple day of living. Just to make it to the next day.
I first developed TN when I was very young. Being misdiagnosed with ear issues fron a very early age, The pain became more severe after an attack caused even more damage to the nerve. I began to know pain like never before. Over the last 6 plus years I have talked to many other TN patients and other Pain patients of all ages and we all experience pretty much the same things with minor differences here and there. Some have more serious pain, some have less...
I have actually had people tell me, "It must be nice to not have to work” or “To just sit home all day, and do nothing” and “your lucky",or “ What do you do all day, Watch T.V.” If I thought they were really interested in a reply to these ridiculous statements I would tell them that having TN and/or other Chronic Pain Diseases, such as my fibromyalgia, however severely you have it, is much more work than ANY full-time job! And we don’t get to call in sick, get vacation days, and our work week is 24 hours a day 7 days a week!
As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don't take this letter as mean-spirited or hateful in anyway, I know some of it may be hard to read. It is not an attack, we just want our voices heard.
Now understand that quite a few TN patients, RSD patients (also known as RSDers) and CP (Chronic Pain), and Neuropathy patients have other diseases as well as RSD, TN etc. such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb and for others it is more, some have less movement while others a little more. Some take a few medications and some take a lot more. Some TN patients suffer with only one side while others have both sides, same with fibromyalgia, some have it less than others.. this is a true statement no matter your illness, disease, or disorder. Everyone also handles pain differently than others. For myself, from an early age, I learned to handle pain, and as a result I have a pain tolerance unlike most others.
I myself take a little over about 20 pills a day (not all different ones, but altogether). Contrary to some people's opinions taking a bunch of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who can not have some sort of normal day without them, you see we don’t get HIGH from them and none of us can fathom someone who takes narcotics for "fun and/or recreation!”
There are patients who use different types of machines or who have Spinal Column Stimulators or Pump units installed within their bodies in an attempt to reduce their pain, and of course some deal with the wheelchair issue as well. I have dealt with the wheelchair, walker and cane for over a year now. A few patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, massage, to help them continue to be able to do the basics things like walking and using their hands, feet, arms, etc. Most pain sufferers can not do Physical Therapy because the consequences are worse than the help, because if you aggravate the nerve it can cripple you for days if not weeks. The bottom line is that I can assure you that most patients deal with the same issues. The idea is to give you an understanding of the issues we face every day so forgive for me for making generalizations. If I spend a day of shopping or out for sightseeing while on vacation, it takes sometimes 2 days to recover from such simple activity as walking around for a few hours.
First, lets start with the sleep patterns. Unlike "normal" people all pain patients are prone to insomnia and do not get the deep REM sleep. This is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is physically painful to actually get up and get out of bed.
Why don't we sleep? It is because RSD and many other chronic pain disorders cause changes to the Limbic system of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and more.
We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea; constipation, headaches, and others. Many also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day and lets not forget the dry mouth we get to enjoy all day long too.
Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They allow us to function to a degree. I must say here, that sometimes, the “pills” don't even let me function, but cut the pain down enough to not want to give up...
Then a few pain sufferers head to Physical Therapy such as pool exercise or range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.
These aren't luxuries but necessities for those who can physically do them. There can be month's even years, when the allodynia is too high to do even these simple things. Allodynia is when even the lightest touches, sounds, or light cause extreme pain. Maybe the person sitting next to you at dinner touches your RSD arm, your fibro stricken arm/hand or your RSD, or fibro foot gets accidentally kicked at the pew at Church, or your RSD, Fibromyalgia leg gets bumped into at school; or the touch of a loved one as a loving carress across your face sends you into a pain attack like no other. All these things seem harmless to the average person and they may not understand how they could ever cause pain to a chronic pain patient, but trust me, they can and do. Some people can even have a slight breeze cause them pain. Like with TN – the wind barely crosses your face and you can be curled up in pain for hours.
I know what you are thinking, that is crazy. No. That is RSD/Fibromyalgia/TN/Neuropathy. If you think its crazy, and I am telling you from a knowledge background, think how a patient feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot or your face, the tightness of a sock, sometimes even the very breeze itself blowing over the body can cause such pain to the patient it will bring tears to their eyes.
And when their friends and loved ones sit there and just can not imagine when they try to explain how it causes pain that hurts them even more. When a disconnected Dr doesn't believe you that is bad enough but when a loved one can not understand you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented in multiple tests. But, there is also no pain like that of TN either, it is said that TN is in the top 5 worst pains known to the medical practice, it called the suicide disease too which is also documented in multiple tests.
RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY! To put that in perspective, having a limb chopped off is less painful, or giving birth is even less painful. If interested look up THE MCGILL PAIN INDEX, which is recognized by every major medical group in the country and Europe. Trigeminal Neuralgia is also listed in the top 5 worst pains known to the medical practice today. So, to have these two together is already stressful,and more painful than your worst pain ever experienced then you can always add the finbromyalgia pain to these I already suffer from and while your at it, drop in a few cup fuls of Neuropathy.
As you can see on the scale of the MCGILL PAIN INDEX TABLE, Arthritis pain is ranked about a 18, Cancer pain, a 24, Chronic Back Pain, a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a limp but that is quick, RSD/FIBROMYALGIA/TRIGEMINAL NEURALGIA, AND NEUROPTHY is 24 hours a day, 7 days a week.
Does that bring it home to you?
It is a pain absolutely like no other. When people ask me to describe it to them the best I can do is say Imagine if you had RSD in your hand and arm. Now empty the blood vessels in your hand and arm out and refill them with lighter fluid and light them on fire and keep them lit 24 hours a day, 7 days a week. Now imagine no one else can see the flames or believe that the pain is that bad no matter what you say. Another way to describe it as such a deep ache that it feels like the bones are being crushed. The company that produces Lyrica has some awesome ads in national magazines, which show a pair of legs being swarmed by millions of fire biting ants, standing on hot coals. That is RSD. Lyrica is also used for nueropathy and finbromyalgia pain.
For Trigeminal Neuralgia imagine your worst tooth or ear ache ever, multiply it by about 100, then apply it to every tooth and in the side of your face all on one side and withf no end, no break in the pain, and imagine yourself not being able to even function for hours, to days, to weeks, to months, that is TN.
Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive there is always a price to pay in extra pain directly afterwards, or even the next day and/or for a week. On top of that you have the severe depression that comes with any pain disorder. Almost nobody realizes that pain sufferers are always depressed, it is not all physiological, you see Pain receptors eat up all of you serotonin, which we need to keep depression away, and vice versa, if we get upset or are sadden then the pain becomes even worse.
We Chronic Pain patients are cognizant of that every day. While the average person can sit there and say "Go ahead and enjoy the day, you can't let your pain control your life!" What they don't realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do, Where we go, who we see, and so forth.
What do I mean by doing things to remind us we are alive? When we spend some time trying to help our spouse with daily chores around the house, reading a book, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even hanging Christmas ornaments on the tree. Things that make us feel normal, if only for a few hours. No matter how painful, we will still try to push through to make it the best we can. We push so we feel normal to some degree.
Unfortunately some people who see you during these "good times" as I call them, believe that is how you are the entire day. What they don’t see is the pain you experienced that night and/or the next day because of what you just did. Nor do they take into account all the medications you took before and/or afterwards to be able to do that or the fact that you probably had to spend a great deal more time resting afterwards. They never realize how depressed you get because your always trying to put on a smile, so they will not feel uncomfortable. We are not just trying to push through for own sanity but also for that of yours, so you don't think we are loosing the battle. When we went on Vacation to San Antonio and went to Sea Worrld, I spent the entire day before sleeping and resting. I still had to do the last half of the day with my walker. I then took almost an entire week to recover just from the week of vacation we had.
The same is true for patients who go to the computer to get support from others with the same diseases or disorders they have - through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day and informs us of new procedures or medications and educates not only ourselves but our loved ones, and sometimes even our DRs., about how to cope/treat the chronic pain we feel. For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there we can talk with others who truly understand what we deal with every day and every minute. It is the computer that allows us to connect with others, to take our minds off of the pain, even if only for a few moments. When I reach about a 7 or 8 on “MY PAIN SCALE” is when being on the computer doesn't help at all. Up to that point I can loose myself in my laptop. But, at my level of about 7 ½ to 8 – it is to the bed to cover up, curl up, with pain medication, heating pads, dark and cool room.
Many of us have to nap in the afternoon to rest our bodies. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole day of activities. It is just too much for us. We have to change our thinking to moderation. Can you imagine how difficult it would be if your spouse or lover wanted to surprise you for oh, let's say Valentines Day and they went through the planning of a day full of fun, love, laughter, good food, massage, gifts, and love making. But, you couldn't even make it through half the day. It's hard to imagine and equally as hard accept.
It is much easier to do something in the late morning or early afternoon. Usually mid to late afternoon we are done for the day. You also have to factor in your physical therapy and Drs appointments as sometimes these things wear us out for the day.
Another strange symptom that has to be factored in to our daily lives is that many of us are bothered by vibrations, noise, light and even an off comment can actually make the pain skyrocket! I believe that when you live with chronic pain daily, that your so on edge and defensive that you Due to the noise, light, vibrations or even an off comment which cause us extra pain for instance, there are a lot of things I cannot do or places I cannot go sometimes, and again, I am just an example of many out there. Places most people take for granted and wonder why we are not there or not talking on the phone, why we can not go to family or friends houses sometimes, why we rarely speak on the phone to others after mid day if at all, or why sometimes crowded areas are off limits.
If there are a lot of people making noise for example, even if it is simply singing or clapping, even family gatherings, have to be cut short sometimes due to all the typical regular noise generated or go off to another room, where you need to sit in the dark. Going to families or friends can also become depressing due to the fact, you either can not join in to the activities, you can not take the noise, or someone might say something off key which upsets you.
Imagine saying to your boss, "Sir, I have to go home, the thunder is causing me great pain and the wind blowing so strong hurts as well." Oh yeah, they would love that. Sorry I can't come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense! Can you imagine the restrictions us parents with kids have to place on our children or granchildren so as not to hurt their painful “HOT SPOTS”, after all kids will be kids. How about dealing with the fact that you always wanted kids with your spouse but because your pain disease is getting worse, you can not have them, first because it would be to much of a strain on your spouse, second and most important it would not be fair to the child, growing up watching a parent suffer and get worse, and the disappointment on unable to play a catch with them or go to their first day of school. It would be selfish of us to have a child just to make ourselves happy and not think of that child’s well being for the rest of their lives. I have four and no more, because I realised with the chronic pain diseases, my pain wouldn't allow me to have anymore children.
I have heard so many stories from so many people with “CHRONIC PAIN” whose siblings, spouses, and parents, tell them how they are just babying their pain, that they need get out of bed more, that they stay home and do nothing all day, or the best is they do not feel they are respected for the few things they try and accomplish each day, ect. Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the web and do some research, see what the truth is regarding the pain, see how depression of a pain patient can be helped, maybe attend a support group with them, if your really concerned that much about their well-being then these would be the proper steps. You don’t know how much it would mean to the patient if you took just an hour here and there to do that.
Our medications, our therapies, and of course our spouses are what get us through each day. The value of these things can not be measured. It seems no one appreciates what a spouse does for the patient, they see everything, the mood swings, spasms, crying, pleading, and the agony they go through. I have been blessed with a wife who puts up with all of this, works, and comforts me relentlessly no matter how many times I complain about the same thing.
Pain does not just bring physiological changes to our body but psychological ones as well. That doesn't mean our lives end, they just change. And CHRONIC PAIN patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of support. You can be a positive part of it or you can be a hindrance, it is totally up to you.
Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Seriously, the fact is that for us, CHRONIC PAIN is our life. It has to be factored into every decision we make, if it isn't we will pay for it later, as will our loved ones. So we need to work within it, we need to keep our minds busy in order to keep ahead of the disease. Constant Pain is a funny thing it always reminds you.
My wife and I often worry that our friends and family will get sick and tired of talking about Pain, and suffering with us. But then we think, it is no different than if we had cancer or MS, or MD, (which some pain sufferers have). People are just used to hearing those words more. Yes we will lose some people along the way, whether it be friends or family that is inevitable, some just will never try to understand or never believe in something they can not see but we will also gain some new wonderful supportive friends and those will be amazing true friends who will be in it for the long haul.
I hope this gave you some sort of idea, what a regular day is for a person who suffers from any of the many pain disorders. There are many groups and foundations set up to help people who suffer from pain and their families.
Thank you for taking the time to read this letter/article, hopefully this is the first step in the right direction. If you have any questions or concerns please feel free to contact me at tracytn@live.com
Tracy Knight
Phone suppot for the DFW Area for the Trigeminal Neuralgia

PAIN - LET'S TYOU KNOW - YOU ARE STILL ALIVE

PAIN - LETS YOU KNOW YOU ARE STILL ALIVE
Current mood:MISUNDERSTOOD
Category: Life
I HAVE ALWAYS HEARD THAT SAYING "NO PAIN - NO GAIN" I KNOW THAT IS TRUE, BUT IN MY CASE, ITS TWICE AS BAD. I MUST GO THROUGH HORRIBLE PAIN JUST TO GET ME TO A POINT OF GAIN, BUT THEN I NEVER REALLY GAIN ANYTHING.

I BELIEVE THAT IF YOU CAN FEEL PAIN, YOU ARE STILL ALIVE.
I HAVE BEEN NEAR DEATH, MORE THAN ONCE. I HAVE BEEN IN A STATE THAT
I FELT NOTHING. BEING POKED BY NEEDLES, BEING PRESSED ON, I FELT NOTHING.
I REMEMBER LAYING THERE AND THINKING TO MYSELF, I MUST BE DYING BECAUSE
I FEEL NO PAIN. THE PAIN LETS ME KNOW I AM STILL ALIVE. I WAKE UP TO PAIN.
SIT ON A HEATING PAD ACROSS MY BACK JUST TO GET MYSELF WHERE I CAN GET A CUP OF COFFEE, I CAN'T JUST HIT THE FLOOR RUNNING. WHY? I DON'T KNOW WHY...
BUT, I KNOW IT'S PAIN AND I AM STILL ALIVE.

I HAVE ALL THESE TERRIBLE PAINFUL CONDITIONS, DISEASES, ILLNESSES - WHATEVER YOU CALL IT...

MY PAINFUL BODY HURTS FROM MY HAIR TO MY TOES. I HAVE 4 KNOWN PAINFUL CONDITIONS...WELL ACTUALLY MORE THAN THAT -

FIGHTING THESE PAINFUL DISORDERS ARE VERY TOUGH.
I HAVE THE FOLLOWING: IF YOU ARE WANTING TO KNOW MORE ABOUT ONE OF THESE CONDITIONS, THEN GO AHEAD AND SEARCH IT, PUT IT IN THE GOOGLE SEARCH BAR, AND SEE WHAT YOU FIND.

1. TRIGEMINAL NEURALGIA - TOP 5 MOST PAINFUL CONDTIONS KNOWN TO THE MEDICAL PRACTICE, AND IT'S ALSO CALLED THE SUICIDE DISEASE. http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

2 . FIBROMYALGIA - ANOTHER PAINFUL CONDTION THAT EFFECTS MY LEGS, FEET AND ARMS


3. NEUROPATHY - VERY PAINFUL CONDITION THAT AFFECTS MY LEGS, FEET ETC. THE NERVES IN MY BODY. IT'S A SIDE EFFECT OF MY DIABETES.

4. REFLEX SYMPATHETIC DYSTROPHY (UNDER TESTING STILL) - THIS IS AS PAINFUL AS MY TN. VERY HARD TO DEAL WITH.

A PINCHED NERVE - IN MY BACK AND CARPAL TUNNEL SYNDROME, LET'S NOT LEAVE OUT MY DEPRESSION AND INSOMNIA DUES TO THE ABOVE CONDITIONS...
I AM WORKING SO HARD TO UNDERSTAND. TO UNDERSTAND MY PAIN,TO FIGHT THE PAIN. TO DO WHAT I CAN TO LOOSEN MY BODY UP AND GET ME TO WHERE I NEED TO BE.
THE MORE RESEARCH I DO ABOUT MY CONDITIONS AND THE MORE I UNDERSTAND THEM, THE BETTER I GET AT HANDLING THE STRUGGLES I FACE DAILY. SOMEONE ASKED ME TO DESCRIBE A DAY IN MY LIFE, I WILL DO THAT IN A BLOG NEXT....AS ALWAYS, THANKS FOR READING.
TRACY

A Letter to my loved ones about my pain

A letter about my pain

Dear Loved Ones;

I have been thinking lately, how often I get asked about my pain, or how I struggle and make it through the pain. I have been asked if I would share my experience of being a pain patient, what I go through on a daily basis, the struggles I face, and the importance of my medications and my therapy that exist in my life. I thought about this and I felt the best way to do this was to share what other Pain sufferers have wrote and shared with me, and add in my own experience as well. I found after reading a similar letter as this one here, on an RSD website showed that a one Mr. Orsini, a pain sufferer for more than 30 years set up a wonderful template for any of us to follow in order to show what a typical day in the life of any Pain patient was like. That was found at http://www.ctpainfoundation.com.

I myself have had Trigeminal Neuralgia (TN) for over 6 years now, since 2002, That's just diagnosed thought, in October of 2002, it isn't the count of how long I have had TN. I have had TN since birth and a slap to a face set of the nerve pain higher than ever before and it spiraled downhill from there. It still took eleven years to diagnos. I had been in severe pain from just the TN alone since July of 1992. Although I have several other pain disorders as well as possible RSD, I have chosen to concentrate on all of them and not just one in particular. Since they all complicate my life.

To name a few I also have Neuropathy diagnosed in 2008, Fibromyalgia diagnosed in 2008, Nerve Damage, Arthritis, Asthma, Carpal Tunnel in both hands diagnosed in 2002, Pluerisy, Siatica Nerve Pain scine I was age 10 years, High Blood Pressure, High Cholesterol, Depression, Anxiety, and not to mention the few I am still being tested for such as RSD, MS, Lupus and a few others - the list never ends for me. So Chronic Pain and I are very old and very close friends. As a result, I have come to know my pain well. What it means, what I must do to accomodate that pain for that day, what I must take and how I must accomplish even a simple day of living. Just to make it to the next day.

I first developed TN when I was very young. Being misdiagnosed with ear issues fron a very early age, The pain became more severe after an attack caused even more damage to the nerve. I began to know pain like never before. Over the last 6 plus years I have talked to many other TN patients and other Pain patients of all ages and we all experience pretty much the same things with minor differences here and there. Some have more serious pain, some have less...

I have actually had people tell me, "It must be nice to not have to work” or “To just sit home all day, and do nothing” and “your lucky",or “ What do you do all day, Watch T.V.” If I thought they were really interested in a reply to these ridiculous statements I would tell them that having TN and/or other Chronic Pain Diseases, such as my fibromyalgia, however severely you have it, is much more work than ANY full-time job! And we don’t get to call in sick, get vacation days, and our work week is 24 hours a day 7 days a week!

As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don't take this letter as mean-spirited or hateful in anyway, I know some of it may be hard to read. It is not an attack, we just want our voices heard.

Now understand that quite a few TN patients, RSD patients (also known as RSDers) and CP (Chronic Pain), and Neuropathy patients have other diseases as well as RSD, TN etc. such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb and for others it is more, some have less movement while others a little more. Some take a few medications and some take a lot more. Some TN patients suffer with only one side while others have both sides, same with fibromyalgia, some have it less than others.. this is a true statement no matter your illness, disease, or disorder. Everyone also handles pain differently than others. For myself, from an early age, I learned to handle pain, and as a result I have a pain tolerance unlike most others.

I myself take a little over about 20 pills a day (not all different ones, but altogether). Contrary to some people's opinions taking a bunch of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who can not have some sort of normal day without them, you see we don’t get HIGH from them and none of us can fathom someone who takes narcotics for "fun and/or recreation!”

There are patients who use different types of machines or who have Spinal Column Stimulators or Pump units installed within their bodies in an attempt to reduce their pain, and of course some deal with the wheelchair issue as well. I have dealt with the wheelchair, walker and cane for over a year now. A few patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, massage, to help them continue to be able to do the basics things like walking and using their hands, feet, arms, etc. Most pain sufferers can not do Physical Therapy because the consequences are worse than the help, because if you aggravate the nerve it can cripple you for days if not weeks. The bottom line is that I can assure you that most patients deal with the same issues. The idea is to give you an understanding of the issues we face every day so forgive for me for making generalizations. If I spend a day of shopping or out for sightseeing while on vacation, it takes sometimes 2 days to recover from such simple activity as walking around for a few hours.

First, lets start with the sleep patterns. Unlike "normal" people all pain patients are prone to insomnia and do not get the deep REM sleep. This is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is physically painful to actually get up and get out of bed.

Why don't we sleep? It is because RSD and many other chronic pain disorders cause changes to the Limbic system of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and more.

We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea; constipation, headaches, and others. Many also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day and lets not forget the dry mouth we get to enjoy all day long too.

Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They allow us to function to a degree. I must say here, that sometimes, the “pills” don't even let me function, but cut the pain down enough to not want to give up...

Then a few pain sufferers head to Physical Therapy such as pool exercise or range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.

These aren't luxuries but necessities for those who can physically do them. There can be month's even years, when the allodynia is too high to do even these simple things. Allodynia is when even the lightest touches, sounds, or light cause extreme pain. Maybe the person sitting next to you at dinner touches your RSD arm, your fibro stricken arm/hand or your RSD, or fibro foot gets accidentally kicked at the pew at Church, or your RSD, Fibromyalgia leg gets bumped into at school; or the touch of a loved one as a loving carress across your face sends you into a pain attack like no other. All these things seem harmless to the average person and they may not understand how they could ever cause pain to a chronic pain patient, but trust me, they can and do. Some people can even have a slight breeze cause them pain. Like with TN – the wind barely crosses your face and you can be curled up in pain for hours.

I know what you are thinking, that is crazy. No. That is RSD/Fibromyalgia/TN/Neuropathy. If you think its crazy, and I am telling you from a knowledge background, think how a patient feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot or your face, the tightness of a sock, sometimes even the very breeze itself blowing over the body can cause such pain to the patient it will bring tears to their eyes.

And when their friends and loved ones sit there and just can not imagine when they try to explain how it causes pain that hurts them even more. When a disconnected Dr doesn't believe you that is bad enough but when a loved one can not understand you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented in multiple tests. But, there is also no pain like that of TN either, it is said that TN is in the top 5 worst pains known to the medical practice, it called the suicide disease too which is also documented in multiple tests.

RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY! To put that in perspective, having a limb chopped off is less painful, or giving birth is even less painful. If interested look up THE MCGILL PAIN INDEX, which is recognized by every major medical group in the country and Europe. Trigeminal Neuralgia is also listed in the top 5 worst pains known to the medical practice today. So, to have these two together is already stressful,and more painful than your worst pain ever experienced then you can always add the finbromyalgia pain to these I already suffer from and while your at it, drop in a few cup fuls of Neuropathy.

As you can see on the scale of the MCGILL PAIN INDEX TABLE, Arthritis pain is ranked about a 18, Cancer pain, a 24, Chronic Back Pain, a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a limp but that is quick, RSD/FIBROMYALGIA/TRIGEMINAL NEURALGIA, AND NEUROPTHY is 24 hours a day, 7 days a week.

Does that bring it home to you?

It is a pain absolutely like no other. When people ask me to describe it to them the best I can do is say Imagine if you had RSD in your hand and arm. Now empty the blood vessels in your hand and arm out and refill them with lighter fluid and light them on fire and keep them lit 24 hours a day, 7 days a week. Now imagine no one else can see the flames or believe that the pain is that bad no matter what you say. Another way to describe it as such a deep ache that it feels like the bones are being crushed. The company that produces Lyrica has some awesome ads in national magazines, which show a pair of legs being swarmed by millions of fire biting ants, standing on hot coals. That is RSD. Lyrica is also used for nueropathy and finbromyalgia pain.

For Trigeminal Neuralgia imagine your worst tooth or ear ache ever, multiply it by about 100, then apply it to every tooth and in the side of your face all on one side and withf no end, no break in the pain, and imagine yourself not being able to even function for hours, to days, to weeks, to months, that is TN.

Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive there is always a price to pay in extra pain directly afterwards, or even the next day and/or for a week. On top of that you have the severe depression that comes with any pain disorder. Almost nobody realizes that pain sufferers are always depressed, it is not all physiological, you see Pain receptors eat up all of you serotonin, which we need to keep depression away, and vice versa, if we get upset or are sadden then the pain becomes even worse.

We Chronic Pain patients are cognizant of that every day. While the average person can sit there and say "Go ahead and enjoy the day, you can't let your pain control your life!" What they don't realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do, Where we go, who we see, and so forth.

What do I mean by doing things to remind us we are alive? When we spend some time trying to help our spouse with daily chores around the house, reading a book, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even hanging Christmas ornaments on the tree. Things that make us feel normal, if only for a few hours. No matter how painful, we will still try to push through to make it the best we can. We push so we feel normal to some degree.

Unfortunately some people who see you during these "good times" as I call them, believe that is how you are the entire day. What they don’t see is the pain you experienced that night and/or the next day because of what you just did. Nor do they take into account all the medications you took before and/or afterwards to be able to do that or the fact that you probably had to spend a great deal more time resting afterwards. They never realize how depressed you get because your always trying to put on a smile, so they will not feel uncomfortable. We are not just trying to push through for own sanity but also for that of yours, so you don't think we are loosing the battle. When we went on Vacation to San Antonio and went to Sea Worrld, I spent the entire day before sleeping and resting. I still had to do the last half of the day with my walker. I then took almost an entire week to recover just from the week of vacation we had.

The same is true for patients who go to the computer to get support from others with the same diseases or disorders they have - through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day and informs us of new procedures or medications and educates not only ourselves but our loved ones, and sometimes even our DRs., about how to cope/treat the chronic pain we feel. For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there we can talk with others who truly understand what we deal with every day and every minute. It is the computer that allows us to connect with others, to take our minds off of the pain, even if only for a few moments. When I reach about a 7 or 8 on “MY PAIN SCALE” is when being on the computer doesn't help at all. Up to that point I can loose myself in my laptop. But, at my level of about 7 ½ to 8 – it is to the bed to cover up, curl up, with pain medication, heating pads, dark and cool room.

Many of us have to nap in the afternoon to rest our bodies. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole day of activities. It is just too much for us. We have to change our thinking to moderation. Can you imagine how difficult it would be if your spouse or lover wanted to surprise you for oh, let's say Valentines Day and they went through the planning of a day full of fun, love, laughter, good food, massage, gifts, and love making. But, you couldn't even make it through half the day. It's hard to imagine and equally as hard accept.

It is much easier to do something in the late morning or early afternoon. Usually mid to late afternoon we are done for the day. You also have to factor in your physical therapy and Drs appointments as sometimes these things wear us out for the day.

Another strange symptom that has to be factored in to our daily lives is that many of us are bothered by vibrations, noise, light and even an off comment can actually make the pain skyrocket! I believe that when you live with chronic pain daily, that your so on edge and defensive that you Due to the noise, light, vibrations or even an off comment which cause us extra pain for instance, there are a lot of things I cannot do or places I cannot go sometimes, and again, I am just an example of many out there. Places most people take for granted and wonder why we are not there or not talking on the phone, why we can not go to family or friends houses sometimes, why we rarely speak on the phone to others after mid day if at all, or why sometimes crowded areas are off limits.

If there are a lot of people making noise for example, even if it is simply singing or clapping, even family gatherings, have to be cut short sometimes due to all the typical regular noise generated or go off to another room, where you need to sit in the dark. Going to families or friends can also become depressing due to the fact, you either can not join in to the activities, you can not take the noise, or someone might say something off key which upsets you.

Imagine saying to your boss, "Sir, I have to go home, the thunder is causing me great pain and the wind blowing so strong hurts as well." Oh yeah, they would love that. Sorry I can't come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense! Can you imagine the restrictions us parents with kids have to place on our children or granchildren so as not to hurt their painful “HOT SPOTS”, after all kids will be kids. How about dealing with the fact that you always wanted kids with your spouse but because your pain disease is getting worse, you can not have them, first because it would be to much of a strain on your spouse, second and most important it would not be fair to the child, growing up watching a parent suffer and get worse, and the disappointment on unable to play a catch with them or go to their first day of school. It would be selfish of us to have a child just to make ourselves happy and not think of that child’s well being for the rest of their lives. I have four and no more, because I realised with the chronic pain diseases, my pain wouldn't allow me to have anymore children.

I have heard so many stories from so many people with “CHRONIC PAIN” whose siblings, spouses, and parents, tell them how they are just babying their pain, that they need get out of bed more, that they stay home and do nothing all day, or the best is they do not feel they are respected for the few things they try and accomplish each day, ect. Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the web and do some research, see what the truth is regarding the pain, see how depression of a pain patient can be helped, maybe attend a support group with them, if your really concerned that much about their well-being then these would be the proper steps. You don’t know how much it would mean to the patient if you took just an hour here and there to do that.

Our medications, our therapies, and of course our spouses are what get us through each day. The value of these things can not be measured. It seems no one appreciates what a spouse does for the patient, they see everything, the mood swings, spasms, crying, pleading, and the agony they go through. I have been blessed with a wife who puts up with all of this, works, and comforts me relentlessly no matter how many times I complain about the same thing.

Pain does not just bring physiological changes to our body but psychological ones as well. That doesn't mean our lives end, they just change. And CHRONIC PAIN patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of support. You can be a positive part of it or you can be a hindrance, it is totally up to you.

Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Seriously, the fact is that for us, CHRONIC PAIN is our life. It has to be factored into every decision we make, if it isn't we will pay for it later, as will our loved ones. So we need to work within it, we need to keep our minds busy in order to keep ahead of the disease. Constant Pain is a funny thing it always reminds you.

My wife and I often worry that our friends and family will get sick and tired of talking about Pain, and suffering with us. But then we think, it is no different than if we had cancer or MS, or MD, (which some pain sufferers have). People are just used to hearing those words more. Yes we will lose some people along the way, whether it be friends or family that is inevitable, some just will never try to understand or never believe in something they can not see but we will also gain some new wonderful supportive friends and those will be amazing true friends who will be in it for the long haul.

I hope this gave you some sort of idea, what a regular day is for a person who suffers from any of the many pain disorders. There are many groups and foundations set up to help people who suffer from pain and their families.

Thank you for taking the time to read this letter/article, hopefully this is the first step in the right direction. If you have any questions or concerns please feel free to contact me at tracytn@live.com

Tracy Knight

Phone suppot for the DFW Area for the Trigeminal NeuralgiaAssociation