Sunday, November 30, 2008

It's A PAINFUL Topic...

I'm going to take a limp down Memory Lame (no, that's NOT a misspelling) for a moment in an attempt to set the stage for what I hope to be one or two posts about pain with Multiple Sclerosis. This is a topic that gets far too little attention as a primary MS symptom, yet it is estimated over 50% of the MS population experiences primary or secondary neurological pain during the course of their disease process. And PAIN is the reason I was diagnosed with MS.

So, do do do do**lines begin to blur**do do do doo**taking you back in time, now almost 10 years...

In 1998, at age 33, I was attempting to hang a curtain rod in my home while standing on a short step stool...I'm handy that way with power tools and the task was only a minor accomplishment, considering I had just completed a home "make over" in the house I was living. Suddenly, and without warning, I fell backwards like a tree crashing in the forest. I had no idea why this occurred, but assumed maybe somehow I had simply slipped off the step stool. Later in the afternoon, I had climbed a short tree over our garage with electric chain saw in hand (I'm telling you, I USED to be very handy with the power tools! LOL), and proceeded to do some necessary trimming. I was only up in the tree about 8 feet off the ground, when suddenly (just like with the curtain rod incident) I tumbled backwards out of the tree onto my back. The jolt of the event put me in an immediate state of shock as I managed to somehow let go of the chain saw, which automatically killed its power and saved amputation of an appendage. I sat high above the drive way on a rock wall briefly, then jumped down like a rock star from a 10 foot embankment, only to discover I had injured my leg in the not so graceful exit from the tree and the stupidity of my leap.

A few weeks later, I developed a strange "dizziness and buzzing" in my head...I felt dizzy all the time...even when I was presumably asleep. I thought perhaps I had hit my head in one of my two falls, but decided to seek a doctor's advise because the dizziness/buzzing was causing me to feel awful. A doctor diagnosed me with an inner ear disorder called, "labyrinthitis"...I was given some pills and told the condition may or may not go away. It eventually did after about 3 more weeks of nauseating dizziness.

A few months passed from my falls and my alleged inner ear disorder. I was standing at my nursing supervisor job about to make rounds in the hospital, when I decided to reach down and fill a small cup with water from the dispenser in my office. As I turned my head and twisted sideways to push the button for water, a jolt of excruciating electrical pain shot up through my neck and into my head. The pain was so intense, I am told I dropped the cup, tried to grab hold of a chair, and proceeded to pass out on the floor, hitting my head on the way down. When I came to, I could hear the sirens of the medics approaching and saw the 10 or so staff gathered around me in concern...all nurses with their dangling stethoscopes waiting to be used. Of course I refused to be transported by the medics to the ER (it's a life long saga of stubbornness) and opted to have my friend take me to my primary care doctor's office blood pressure was extremely elevated and I still had fairly severe pain in my neck.

Through a few series of tests to rule out "stuff" and an MRI to rule IN "stuff", I was told in 1998 that the pain in my neck and shoulder was originating in my cervical spine, where I had developed two to three herniated disks. I was placed on Prednisone for the first time and sent to physical therapy. Eventually the pain in my neck/shoulder/and arm lessened then went away. I was told I most likely herniated my cervical disks when I fell out of the tree (but I had fallen MANY more times playing basketball in college and had several concussions before the age of 25!). I also have a brain scan done at the time of this MRI and it appeared to be a normal, pinheaded brain.

Over the course of nearly 5 years, I suffered from back pain/neck pain/shoulder pain/trunk pain nearly every 4 -6 months and was often put on high dose Prednisone, other anti-inflammatories, analgesics, and an assortment of VooDoo medicines...I would have periods of relief for several weeks, followed by a roaming return of pain, sometimes so severe I could not walk. I recall once being practically carried into the Urgent Care Clinic because I could not stand without pain shooting from my lower back and hips down into my legs. Needless to say, I received a variety of diagnoses and treatments - from psychiatric related trauma to radiculopathy to iatrogenic pain caused by medications to menstrual disorder to disk herniation/bulges. Physical therapy often only seemed to heighten my pain response versus relieve it and Prednisone seemed to be the only thing that brought consistent relieve...temporarily.

I missed several blocks of work due to pain. I became sometimes severely depressed due to my pain. I bought into the notion "perhaps it was all in my head". I began to have more periods of dysfunction than functional body times. I thought I was growing *old* way too fast and could find no explanation the medical community would accept as a rationale for being in nearly constant pain. I finally chose to simply quietly live with my pain so as not to be labeled a "nut job". This only made me hurt worse during these episodes and emotionally I would become a basket case. There was, after all, no LOGICAL medical explanation for my recurring pain episodes that could be found.

In the Winter of January, 2003, my house was burglarized, my car engine began blowing the blue smoke of Death, and I started having what I KNEW were gallbladder attacks. I also developed the familiar burning, yet cold pain ache down my left was not a great start to a new year! Since I knew there was NOTHING medicine could or would do for my arm pain, I focused on police reports, buying a new car, and an ER trip for IV demerol for my gallbladder attacks...I was familiar with gallbladder pain as my entire family had already had theirs removed (the dead relatives, too), so I consented to the ultrasound test to look under my hood at my bile sack. The test was immediately forwarded to a surgeon and I was told to come in immediately, scheduling an urgent cholecystectomy the next day...this was March 18th. I made a sheepish mention of the pain I was experiencing AGAIN in my left shoulder and neck and let my surgeon know I was once again on Prednisone for this. She ordered IV steroids during the surgery to compensate and keep me from having withdrawal.

The 24 - 48 hours after my surgery were the most pain-free hours my shoulder/arm/neck had experienced in a very long time...of course, the pain in my abdomen from being punctured and cut open was present, but I was absolutely AMAZED at the relief I experienced in my left side. This of course subsided after 2 days and the pain returned. I was left to recuperate at home, with abdominal incisions, and walking around with my left arm bend high above my head as the only means of finding some relief to the now severe pain I felt radiating down my arm.

On a follow up visit to my ARNP, she decided maybe it was time for another MRI...since it had been five years since my first one and my degenerative disk disease diagnosis, I consented. I went to the hospital and got shoved back in the "tube". My original MRI was without contrast (gadolinium) because I hand carried the order to the technician. What should have been a 1/2 hour procedure to film my cervical spine turned into a 2 hour MRI investigation...I was suspicious. I repeatedly asked the technician WHY they were adding contrast to my order and WHY they were snapping shots of my brain (because they brought out the *coil*, used only for cranial views)...the silence was deafening.

That evening, I discovered a somewhat cryptic message on my answering machine from my ARNP...she needed to speak with me immediately...nothing to "worry" about, just leave her a message when she could reach me as soon as possible. I didn't leave a message. I didn't want to know. I was certain I must have a cancerous brain tumor growing in my noggin because you NEVER receive a phone call about a medical test within 24 hours unless there is something "wrong".

Eventually, she caught up with me via phone. "They think you have Multiple Sclerosis, but don't worry too much. They could be wrong. They found a large lesion in your spine and several others in your brain. I want you to see Dr. So And So, neurologist for a consult. I've got you an appointment already scheduled in 4 days."

And from here, my story doesn't change much from the typical "You've got MS" story...I DID consult THREE neurologists before believing any of them. LOL I argued I had never had any symptoms of MS that I could remember, only PAIN...and everything I had ever studied or read said PAIN was not considered a SYMPTOM of Multiple Sclerosis. In fact, 15 years prior to my diagnosis, PAIN could not be considered a diagnostic symptom of MS. Looking back over the 5 years prior to my diagnosis, it was thought my "labyrinthitis" was most likely a case of bad vertigo, my bowel issues most likely the cause of my spinal lesion (or IBS...jury is still out on this one), and my lethargy/fatigue was NOT because of depressive signs and symptoms.

This is MY MS story and MY MS pain tale...certainly, others will and do tell a different story because MS affects us all individually. Hopefully I will find the time this week to do some research (with links) about the causes of what are thought to be TWO, distinct forms of MS pain: Primary neurogenic pain (originating pain from demylenated nerves and nerve roots) and secondary symptom pain (resulting from spasticity, gait changes, etc.). I'll try to keep this information as "pain-free" a read and simplified as possible...wouldn't want to be the cause of trigger for someone to develop OPTIC NEURITIS from reading a computer screen!...


have myelin said...

Try some of those THC thingies.... yeah those! :-} Are they legal in your state?

Lazy Julie said...

I feel so fortunate to have an uncommonly fast diagnosis story. It's amazing how seriously everyone takes vision loss but how little they address chronic pain. I guess it's another reason to not curse my ongoing optic neuritis. Thanks for bringing up this important topic.



I have just finished reading your latest blog on your pain history. Again, I can post a comment but the arrow won't go down far enough to press Post. I don't have anything to add to your hx except it is very interesting. I repeat, if I hadn't read the ms blogs of which you were the first, I never would have known about pain as a symptom of MS....none of my friends has ever had that. Nor did my mother. It pops up alot on the people's blogs but I have just shrugged and passed it I know and this is just in my foot area--like a raw nerve ending on is incredible. I only took one pill this morning and that has held up--maybe it was just a lighter day and may be worse tomorrow--I am seeing from your blog, these things can come and go...etc. Thank you so much for writing about this--if it was in the MS journals, I wasn't reading it because it never concerned me...You can print any of this is you think it will add interest to your blog. Thanks....Joyce

Anonymous said...

Years ago, the only pain I had bad enough to complain was back, neck and shoulder pain. Many car accidents were attributed to be the cause. Pain was not an acceptable symptom of MS, as you said.

But the pain would have to be realllllly bad for me to complain. It was kinda like "no brain, no pain." And it was like that for years.

After menopause kicked in, pain was daily - migraines, back pain, neck pain and various neuropathies in feet and hands. It has now travelled to my full legs and full arms.

SO YES, pain is present with MS, but for some people - not present immediately or in beginning years.

Incidentally, I had gall bladder removed in May 2003. No previous attacks, just the one, which was bad enough.

There is something to be said about breaking bones and sprains. Because of various neuropathies, I do not feel fractures/sprains immediately. I have walked on a broken foot for up to three weeks before making the connection that "Hey, it could be broken!" Stress fractures are prevalent with me and I am on Fosamax now (about 2 years) so hopefully that will help.

Although I did break two ribs last August and I just broke one more last week - stress fractures from sleeping on that side too long and hard. Only hurts when I breathe or bend. Nothing is done for those, as you know.

So know that you have MSers that have pain too and that you are not alone. I hate mind altering drugs so I try to make due with TYlenol (or Aleve), prednisone but when it does get bad, Hydrocodone works best for me, but then only one.

Take care,

PS I was never good with power tools, but wielded a mean scalpel and that is a skill what is now lost.

Miss Chris said...

I've got a handle on my pain for now... I can't seem to get that image of you with a chainsaw out of my head!

Denver Refashionista said...

Thanks for this. I do have bad pains at times in my skull, arms, hands and neck. It is awful and I sometimes am not sure if it is MS. Thanks for the validation.

Spaz Attack said...

i have constant chronic primary neruogenic and secondary from spasticity. Really wears me down, yea know? Look forward to readiang what you find out about it. Dealing with spell of major fatigue this week. REALLY SUCKS! Lemme know if you discover muscle relaxer and pain meds that don't make one drowsy.
Hang in there and no falling this week :-) Soon as I get energy back I'll be using my own power tools to add a little room on me little house.

Merelyme said...

Braincheese with a chainsaw! Run!

I need to save all your posts...they are so informative. I am so glad that you are detailing all of this. You are right...people don't talk about pain and MS very much. What else doesn't get discussed are the cognitive issues.

Wanted to ask if you or anyone else knows about any supports or people to talk to for a caregiver whose husband has primary progressive MS which has been very aggressive. An anonymous woman left a very poignant comment on one of my health central posts and I promised I would try to find others who she could talk to...about her husband's primary progressive MS. is the link to find her:


Natalie Ford said...

We DO seem to have similar disease progressions!

BTW, I also second the THC therapy for pain... ;-p