The Worst Pain Known to Man

I planned to read a book this evening, but instead I have become fascinated by the website www.painonline.org.

It has been amazing learning that there is a name for the kinds of pain that I feel, which is Central Pain. And that my various pains are related! I knew that they were all related to MS, of course, but this website helped me understand it better. And this is what it said about Central Pain:

Fully developed Central Pain can be the worst pain known to man. No doubt many would be shocked to learn that spinal injured patients with some motor ability often indicate they would sacrifice any remaining motor ability if the pain could only be stopped (see studies by Davidoff, Nepomuceno, and Britell). If observers will stop and think about that for a while when gauging the severity of Central Pain, they may be inclined to pontificate less about "keeping a stiff upper lip" and start saying, "We simply must devote the needed funds for research. To do less would be inhuman."

Powerful stuff. My Central Pain is not fully developed, but it has come a ways along that road in a short amount of time. It began six months ago.

Here are components of Central Pain and how they have manifested themselves in my body.

Muscle Pain (gamma pain)

I do not understand this type of pain well, but I related to the descriptions of soreness when trying to lie in bed and waking up feeling as though I have been beaten. This type of pain also has to do with feeling as though you have had a major workout when you have not. I have described my pain in these very terms before. My thighs often feel like I have skied hard the day before.

Dysesthesia: "Indescribable" pain felt by those with nerve injury

This was the most jaw-dropping section for me to read. I absolutely have this, and it SUCKS. This is the feeling of burning/freezing/numb, as though walking barefoot in snow. If you read the webpage, it describes spontaneous and evoked dysesthesia; mine is spontaneous. Except that it did improve when I removed my socks and turned off the heat, so maybe there is an evoked component to it.

Hyperpathia: An increase in response to normally painful stimuli

Remember wayyyyy back in August, when I commented that CPI training was painful for me? More painful than it should have been. It was not bad at all when I went through it two years ago. CPI training involved learning how to get out of situations where another person is violent, such as trying to pull your hair out, bite you, or kick you. We were playing at putting each other in a hold or grabbing the other person's arm. It was unreasonably painful for me. The pain I felt that day is just one example of hyperpathia, which I have had quite a few times.

Allodynia: Pain from what is normally a nonpainful stimulus

I have had location allodynia occasionally. I do not think I am bad about having pain from nonpainful stimuli, but I have definitely paresthesias from nonpainful stimuli. For example, a light tough might feel tingly or itchy. Firm pressure makes it feel better.

Shooting Pain (lancinating pain)

I get this in my left leg.

Circulatory: Pain that mimics circulatory insufficiency

Obviously I get this. Don't I rate my pins and needles every day? Mine are not severe--or at least not as bothersome as my dysesthesia and other pains.

Peristaltic Pain: Pain in the hollow organs (visceral pain)

I think that my peristaltic pain is mild.

So, have we all learned something today? I think the takeaway is that I need to get on a disease-modifying medication before my Central Pain becomes severe.

OK Morning, Rough Evening

I had a pretty decent morning, was tired and had quite a bit of spasticity and pain beginning in the afternoon, and have had a lot of nerve pain this evening. And it is only 7:30. Things do not get better at this point in the day, just FYI.

Being in this kind of pain is exhausting. I suspect that it is what brought on my recent emotionality--pain is more emotionally exhausting than physically. When I am in a lot of pain, I am much more likely to cry at small things or to become overwhelmed easily.

Sensory:

-Pins and needles: 2

-Tingles: 2, I guess I should say where: tongue, right foot, groin. I have had groin tingles for a few days now. Mostly before I need to use the bathroom or something. I guess my body gets confused on what it feels.

-Paresthesias (burning): 5, both feet and up the outsides of my heels were quite painful this evening. Today Dr. Google taught me that this is called dysesthetic pain. Although this website looks rather suspect, it describes dysesthetic pain perfectly: Link.

-Paresthesias (other): 1

-Numbness: 4, losing feeling in my legs frequently this evening, also sometimes along an arm. Also semi-numb tongue.

-Vision: 2, still blurry, hard to focus

-Nerve pain: 6, left leg all the way down sciatic nerve

Motor:

-Walking: 1 this morning but has degenerated to 4 this afternoon--very stiff

-Sore muscles: 6, spastic quadriceps were so sore this afternoon. A tendon behind my left hip is sore right now. And my calves... but not as much as those quads were!

-Fine motor: 2

-Weak muscles: 4 (I guess--not my main concern with all the pain)

-Spasticity: 6

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 2

-Balance: 1

-Sleep: 2

-Bladder: 0, at least something is working right

-Proprioception! Welcome, new category. I will start you off with a 3 for difficulty this morning and for nearly causing me to fall down the stairs this afternoon.

Emotions: See previous post!

Tears

I just gave you a rather cerebral post on proprioception, and now here is a rather emotional post on... well, emotions. Specifically one called fear.

I just had a little cry, which was because I am scared. I am scared of what MS is doing to me. But I am also scared that I have something worse. I think lupus is worse. I wish those lab results would come back already! I am going to call tomorrow.

I do not know what to do what I get scared like this. Or when I get

One thing I am scared about is that I really have Lyme Disease, and I will be treated needlessly for MS. And that I will not get better.

My main fears are the usual: money and disability. How would I support myself, blah blah blah. Well, the bottom line is that there may come a day when I cannot support myself.

The funny thing is that living in a care facility or something does not scare me or freak me out. But wondering how I would pay for such a facility absolutely freaks me out.

Also, I do not want to live with either of my parents. And I do not want to live with my best friend's parents, who I know would take me in. That is mostly because I detest her father.

My other best friend would take me in, which would be ironic on so many levels. We won't go there.

My aunt offered to take me in.

It is nice that people offer, that I would not be "on the street." I suppose that I would never be on the street, since it would be due to disability rather than poverty. No doubt there are programs for people like me.

OK, I just thought of the boredom that might reign in a care facility. Now I do not know that I would be so accepting of it. Luckily it is far enough from today, and I am able to see that it may never be necessary, that it is not freaking me out too much. I am not a fan of boredom.

The thought of losing my life (while still alive) scares me. I like to ski, go to the beach, etc. I like to pick up and go where I want, even if it is just to a bookstore.

I also cry sometimes when I get frustrated. One thing that really frustrates me is when I am held to an impossibly high standard, like being expected to cook or clean or walk around a store or stand for more than a minute. Everything is so much harder than it was. Everything! Thinking, moving, feeling (physically, not emotionally), seeing, and even existing with severe pain--all hard or impossible. I am barely making it through work. I cannot do everything else that I used to do. Just showing and getting ready for work wears me out most days.

I ordered those books on MS that I found at the bookstore last weekend. One is by a psychologist who has MS herself--it's about Emotions and MS. I am really looking forward to reading it. Also one by an OT, which is about handling fatigue. And one about cognition and MS! Well, I am looking forward to reading them all.

Lost Limb: Reward... Oh Wait, I Have MS So I'm Broke. Sorry, No Reward.

My "lost" hands have come to mind a few times since my MRI two days ago. Because I have cognitive problems, the issue has left my mind before I could fully think it through, of course. In fact, I will be surprised if I can write a coherent post about it in a single sitting. My brain is not cooperating right now.

Let us review what happened:

I was in the MRI tube for a while when my left hand disappeared. Then my right. I am trying to remember if my legs did... Um... Yes, I think so. They did during my EEG, another test where I had to lie completely still for a long time.

This also happens to me when I try to take a nap, which slightly freaks me out and makes napping even more difficult than it already is. I think I fall asleep quickly enough at night that it is not a problem.

Basically, if I do not move for a while, I will lose track of my legs and hands. Not my whole arms. Yet?

I googled to see if this is truly a proprioceptive problem and not numbness. Seems to be. Also, it is more logical that is would be proprioceptive, because numbness would not subside immediately upon moving. During my MRI, if I moved my thumb a tad, I could suddenly feel the padding next to it.

As I was googling, I saw many people describing proprioceptive problems that I have but had not thought of in those terms. When it is dark, they bump into walls and "march" instead of walking.

I do this!!

If I try to walk in the dark, I lift my legs way too high without trying. And not evenly, either. I might have a sort of okay step, then a really high one. And I do bump into walls. Remember how I keep chalking this up to balance issues and saying that my balance problems are only in the dark? They were proprioceptive problems! I do lose my balance occasionally and begin to tip over, but the proprioceptive problems happen every day.

Another thing people commented on that I have experienced is clumsiness related to misjudging distances, like not realizing how close my leg was to a coffee table. Everyone stubs their toe sometimes, but I knock into stuff regularly.

I nearly fell down the stairs today--onto a hard tile floor, yikes. I was going upstairs quickly and was about three quarters of the way up when I misjudged where the next steps would be and tripped. Luckily I grabbed the rail and slammed my other hand against the wall. Understanding proprioception and the nature of my staircase makes the reason for this clear. My staircase is open on one side halfway up, and then it has walls on both sides. This was in the afternoon, and there was sufficient light in the room that I did not turn on the light on the staircase. That meant that the lighting on the staircase was dim for the last half of the way up, but then it would be fine upstairs. I was just running (figuratively) up to grab something and then back down--no need to turn on the lights. Ha, guess there was need to turn on the lights. I lost track of my feet. I guess I did not know that, because I tried to go two more steps, but I hit both of them wrong, one too high and one too low, I think. It was rather cartoonish.

And that is my treatise on proprioceptive problems.

Good Day

I had a good day today. Except that my tingly/numb tongue (part of it?) is bothering me. And crazy crawling/itching feelings in my leg. That is normal, right?

It was raining today... just FYI. I love rain.

Sensory:

-Pins and needles: 1

-Tingles: 1

-Paresthesias (burning): 2, left foot

-Paresthesias (other): 1, sudden itches, feeling that something is crawling on me. Left leg, as always.

-Numbness: 2, kind of numb in arms and legs a few times. Feels cold. As always, I have my permanently numb spots. Let's do a quick run down on that:
     -Left foot, baby toe, lateral/ventral
     -Left foot, distal/lateral part of foot (contiguous with numbness on baby toe)
     -Left foot, ventral/lateral heel (about an inch to inch and a half in diameter)
     -Right foot, big toe, small spot on medial side, near toenail
     -Right foot, baby toe, lateral (small area)
     -Right foot, heel--similar to left heel

-Vision: 2

-Nerve pain: 2--left leg

Motor:

-Walking: 1, nearly normal

-Sore muscles: 4, pain in spastic muscles

-Fine motor: 2

-Weak muscles: 4, still having difficulty opening doors

-Spasticity: 5, very tight legs today. Neck and upper back, too! (Is that MS?)

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 3

-Balance: 1

-Sleep: 1

-Bladder: 0

Emotions: Still have not done the examination that I need to do. I forgot. Sometimes MS makes me laugh.

Tinnitus

My tinnitus is back. I have had a few twinges in the last couple of days, but today it has been going since I woke up. That is a record for me. Usually it lasts no longer than a few seconds. I think it might be only in my right ear. It goes away when I plug that ear. It is so quiet that I really cannot tell which ear it is in.

I Rocked Another MRI

Yes, oh yes, I rocked yet another NO REPEATS MRI. What do I mean by no repeats?

An MRI (well, the ones I have had anyway) is made up of a series of sequences. They scan different areas, as well as the same areas in different ways. Each series is anywhere from a few seconds to a few minutes. Maybe five minutes at the most.

While the machine is scanning, I have to be careful not to move at all, and even swallowing saliva is discouraged. What stinks is that if you mess up a sequence, you still have to finish it out and then begin it over. For me, I usually do not even know I have messed up until after the sequence, when the technician checks it and finds blurriness. Sometimes I swallow or twitch without realizing it. And during previous scans, when I was not as MRI-wise, I did not realize that I could not move my arms. I thought as long as I did not move my head and trunk... sigh... long appointment.

The MRI tube is not the most comfortable place in the world, so I brought my own MRI-friendly clothing, as usual. I wear old scrub pants and a tee shirt. And socks! It always seems to be cold in MRI rooms.

Today I went to a new place, and it was freezing. My goodness. So freezing that when the technician pulled me out of the tube after an hour and a half [of lying in a tube four inches from my face, with my arms pinned to my sides] to inject the contrast, she had trouble getting a vein. Or maybe she just was not very good at it.

The technician tried my right elbow and was surprised that my seemingly good vein rolled. She dug around then pulled out. Left elbow--same. Right wrist--same. Judging by the little puncture wounds, she tried three times in that wrist vein. She was ready to call for backup from another location, because their policy is to stop after three tries, but I told her she could try one more spot. She tried my right hand and the vein "disappeared."

She called for backup from another location.

Meanwhile, I really needed to use the bathroom. I had felt it since right before I came out for the injection, and she had been working on that for about 15 minutes. Unfortunately, I could not get up or even move my head and back. The urge got stronger and stronger.

Luckily the other technician got me on the first try. Yeah! It took forever to inject the contrast, because she had used a tiny needle and the contrast is kind of thick. And my darned vein was not exactly flowing, although I had at least stopped shivering. Because I was freezing!

I cannot believe I made it another 20 minutes in the machine.

I was having proprioceptive issues while I was in the tube. I could not feel my hands, particularly the left--but it was not like numbness. I think. It felt like I did not have hands at all. I could not feel the latex panic bulb in my left hand.

At least the needle sticks did not hurt too much. Either I am getting used to it, or I am getting more numb. I would guess that I am getting more numb, because I remember when I had blood drawn every month for 14 months when I was on Accutane--it was painful every time. So maybe I am getting numb in my arms!

And at least the images were good on the first try, with no repeats. Because I rock at MRIs!

While we were waiting for the other technician to show up, the first technician chatted with me. That was nice, because it helped take my mind off of my potty needs. She commented that we were 80% done, and I asked her why the "with contrast" portion of the program was always shorter. She said that on some series, they can see a lot without contrast. But there are certain types of images where they need contrast. I asked if they were the T2-weighted series. She said no, the T1... And how do you know so much about it? She commented that when I said on the phone, "I'm down for C- and T-spine, with and without contrast, right?", she realized that she was not dealing with your average patient. Apparently most of them say something along the lines of, "You're doing my back, I think, and am I having the dye?" I told her that I have tried to educate myself about my disease and the testing that I have to go through. I want to understand why the tests are ordered, how they are interpreted, and what the results mean.

She brought up Lyme disease. It does occur to me from time to time. The so-called Lyme-literate doctors say that blood and even CSF tests for Lyme are not very accurate. But most doctors say that they are accurate. I am not going to believe something just because the medical establishment says it is so, but on the other hand, I do not want to get involved with fringe people. I guess I could bring it up with the MS Clinic doctors.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Paresthesias (burning): 2

-Paresthesias (other): 1, electric shocks in my left butt and thigh during the MRI, and in my left butt, thigh, calf, and hand (yes, all left) this evening. Moving helps.

-Numbness: 2

-Vision: 2, still blurry

-Nerve pain: 2

Motor:

-Walking: 0

-Sore muscles: 1

-Fine motor: 4, whoa, I had to write something today, and my handwriting was terrible! It was difficult to print my name neatly, or even legibly. Yikes. I usually type everything, so I did not know.

-Weak muscles: 4

-Spasticity: 4, mainly during the second hour of the MRI. And I had muscle twitches in my left thigh/hip for about 15 minutes straight. I probably could have stopped them by moving around, but that was not possible during the MRI.

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 2

-Balance: 2, I think I lied the last few days when I rated it at 0. Darkness=suckness for balance.

-Sleep: 2

-Bladder: 1 

Emotions: I shed a tear when the MRI tech wondered why I am so knowledgeable about MRIs, and I explained that it is my body, and I want to understand what is going on. I want to understand the tests that are ordered and their results. I do not know why that made me cry. One and done, though (with tears), because I shoved the feelings down yet again. I need to do some processing (translation: crying), but who wants to do that in the evening, after a long day of work?

Little Oops But Great Day

I had a great day today! Not much walking; I sat in the car and rode or drove for six hours. Alright, so I got worn out by the taxing task of going out for breakfast with friends. I nearly fell asleep afterward! But that may have been because my body was working overtime on digesting lactose when I did not take enough pills for what I ate.

I do not know what I was thinking. I took one pill for my pancakes with butter, because I knew that I was putting the butter on them. I neglected to consider the dairy products in the pancakes themselves until my friend reminded me. I was sick about half an hour later. This kind of clouded judgment is not typical for me, or at least it was not before MS.

But... all things considered... I would call this a good day.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Paresthesias (burning): 1, left foot

-Paresthesias (other): 0

-Numbness: 1

-Vision: 2, just blurry

-Nerve pain: 3, mostly left leg, some in right leg

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 1

-Weak muscles: 4

-Spasticity: 3

Cognitive:

-Language processing: 1

-Memory: 0

-Attention: 0

-Confusion: 1, see the afore-mentioned milk pills lapse

General:

-Fatigue: 3

-Balance: 0? I was sitting in a car all day!

-Sleep: 3

-Bladder: 0

Emotions: Nothing to report.

It Worked!

This morning I got up and used the bathroom, and my body worked. Or at least my bladder did--no point going into how other body parts were behaving. My bladder behaved! I was astonished.

I had forgotten how easy it used to be to use the bathroom. Sit down and things just happen. Wow. The body is so amazing.

If you can just sit and go... If you have it easy... Thank your Heavenly Father for the blessings you have. Do not be shy--he knows about bodily functions!

Went Shopping

Today was soooo long. I did some shopping with friends, went to lunch, and did some more shopping. Then I came home and took a nap. Then I went back out with a friend and sat around reading at a bookstore. Dinner at a local spot.

Somehow this day felt uberlong.

I found several MS books I would like to read. I want to order them from Amazon.

Sensory:

-Pins and needles: 2, left leg this evening

-Tingles: 1

-Paresthesias (burning): 2, left foot

-Paresthesias (other): 0

-Numbness: 2

-Vision: 3, still blurry, some stabbing pain in my left eye

-Nerve pain: 2, a couple of times in my left leg--but fine most of the day

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 2

-Weak muscles: 5, I thought I would collapse a couple of times.. like I was on the edge of it most of the day. I pushed it when I was weak and tired, because I wanted to spend time with an old friend.

-Spasticity: 4

Cognitive:

-Language processing: 1, some paraphasias, which I was able to detect and correct

-Memory: 0

-Attention: 0

-Confusion: 0

General:

-Fatigue: 6--I got tired enough to take a nap in the afternoon, but I also stood and walked in three different stores. Before MS, that would have been nothing--I was a champion mall walker. Now it is a major achievement.

-Balance: 1

-Sleep: 4, I got eight hours but woke up about a half dozen times. Broken sleep is not the same.

-Bladder: 0

Emotions: I got choked up when an old friend (whom I have not seen in quite a while) brought up my MS. It is still hard for me to talk about.

Just Another Day in MS Town

Today was great! My friend drove the rest of the way to where we were going, and I saw old friends. I am staying at their house for a few days.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Paresthesias (burning): 2, left foot, behind/above my right knee (NEW). But the burning behind my knee feels different. It feels like a rug burn (but the skin shows nothing). The burning in my foot feels like walking barefoot in the snow--freezing/burning.

-Paresthesias (other): 1

-Numbness: 1

-Vision: 3, blurry, pain in left eye this evening

-Nerve pain: 1

Motor:

-Walking: 2, and their house is too darned big!

-Sore muscles: 4

-Fine motor: 2

-Weak muscles: 5, I had trouble cutting my meat today. :(

-Spasticity: 5

Cognitive:

-Language processing: 2, it is hard for me here with all the people talking. And once I meant to say my friend's friend's sister's name and I accidentally said my friend's dead sister's name. She looked shocked that I mentioned her sister. Um.. didn't mean to. And some word finding for a while, but later it was better.

-Memory: 0

-Attention: 0

-Confusion: 1

General:

-Fatigue: 4, crashed a couple of times but not enough to fall asleep. I did lie down and rest this afternoon.

-Balance: 1

-Sleep: 5, poor sleep in a hard hotel bed!

-Bladder: 0

Emotions: Nothing to report.

Thanksgiving

Yesterday I went to a friend's house for Thanksgiving. It was so nice, and I was fortunate to be having a wonderful day. I was worried that I would be sick but was not bad at all. I took a little walk in the woods--slowly--which was nice.

And then I drove three hours. Crazy! I wanted to get at least halfway to where I wanted to be today. I kept going partway into the lane next to me, and I was afraid I would hit the divider. Someone was with me, but she ended up not being able to drive.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Paresthesias (burning): 1

-Paresthesias (other): 1, crawling

-Numbness: 2

-Vision: 3

-Nerve pain: 2

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 2

-Weak muscles: 3

-Spasticity: 4

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 1

-Confusion: 1

General:

-Fatigue: 5, I was exhausted all morning and ended up going back to bed. Didn't sleep, but I guess lying down did the trick. I was fine all afternoon and even survived driving in the evening.

-Balance: 2

-Sleep: 1

-Bladder: 0

Emotions: Almost cried when I mentioned my comprehension problems, so I guess it is near the surface. But I was fine otherwise. Of course I was not about to examine those feelings on Thanksgiving. Push them down! Way down!

Good Tradeoff

So pain is down, but spasticity is up. That is a good tradeoff.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Paresthesias (burning): 3, burning mainly (only?) in my left foot

-Paresthesias (other): 1, crawling on my left thigh

-Numbness: 2

-Vision: 3, blurry, pain in left eye this evening

-Nerve pain: 3

Motor:

-Walking: 1

-Sore muscles: 4, again, sore because I pushed it... see below

-Fine motor: 2

-Weak muscles: 3, good thing, since I had to stack wood today. Got a firewood delivery. Seriously, Heavenly Father gives us what we need to get through.

-Spasticity: 5

Cognitive:

-Language processing: 0

-Memory: 0

-Attention: 0

-Confusion: 1

General:

-Fatigue: 4, one of those days where I crash every two or three hours... but not low enough to fall asleep... and the two or three hours between crashes are not bad

-Balance: 3, lots of tipping this morning

-Sleep: 0

-Bladder: 1? very minimal issues, nearly normal

Emotions: Nothing to report.

Another Not-Low-Pain-Day Day

Today was so long! I had to take "almost-nap" breaks in a comfy chair.

Still wondering about the barometer...

Sensory:

-Pins and needles: 4

-Tingles: 0

-Paresthesias (burning): 5, in my feet

-Paresthesias (other): 0

-Numbness: 4, left leg off and on, plus the usual suspects, plug some fingertip issues

-Vision: 2, no double vision today, just blurriness--but I cannot figure out what exactly the problem is.

-Nerve pain: 6 

Motor:

-Walking: 1

-Sore muscles: 4, because I pushed it when I was tired and spastic

-Fine motor: 1

-Weak muscles: 5

-Spasticity: 5, did I rate this 2 yesterday? Am I on crack? No, it was worse than 2. Maybe I should up my confusion rating for yesterday.

Cognitive:

-Language processing: 0

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 5

-Balance: 0, I have definitely improved in this area.

-Sleep: 2

-Bladder: 0... seriously... normal today

Emotions: Nothing to report. I was fine all day.