Bent Like A Pretzel

PT Evaluation Day

Had my physical therapy evaluation today.  I had two therapists do the eval, one a student and one an experienced therapist.  I certainly hope I didn't scare the student away!  Physical occupational and speech therapists are generally quite jolly people, so we are sympatico in our approach to life.  Or maybe they are just closet sadists that really are jolly about hurting people, but I don't think so.  They are generally upbeat all the time, whether they are increasing your range of motion or talking about the weather.

I had some pain during the eval, a few times I actually shed a few tears [thank heavens I was face down at the time] but I am in general stupidly stoic.  Must be my stubborn German ancestry coming out.  The experienced therapist told me she thought I had a great deal of pain tolerance (nice of her to notice since she was trying to see where it ended) but my toes gave me away - good poker face, but apparently my toes were curling when the pain started getting bad.  Drat those toes!  They are almost always in shoes where no one can see them.

I still have no reflexes from the knees down.  My right leg is weaker than my left leg - which is no surprise.  My left leg is a quarter inch longer than my right leg, which was a surprise - but apparently there is an exercise that can help with that.  Some moves made my feet more tingly, and a couple of positions they pretzelled me into were quite painful not only on my sciatic nerves and hamstrings, but my pudendal nerve area also.  They mentioned a femoral nerve problem, but am not sure if the test was positive or negative for that.

I came out of the session with a couple of exercises to do, one to "glide" my sciatic nerve through the muscle structure of my legs and hips, and another to help correct my leg length difference.  Neither are hard, but I feel very weak in my lower legs, so it will be a challenge.  I was so afraid there would be nothing they could do so am glad I have something to work on.

The Headache is behaving itself, The Belly is grumbling and trying to put out feelers of pain (it got a little scrunched today), and The Legs are having a fit.  I started getting extreme spasms of pain starting at 45 minutes to midnight, and am still having them although they are dying down a bit.  The pelvic pain started at the same time, so hoping tomorrow I will be able to drive.  I have a two hour drive to a client, several hours of training and walking to do when I get there, and a two hour drive home.  I don't have anything for the pain except the Soma, and 1) the physiatrist took me off that medication and 2) I have to drive tomorrow so I don't want to take any risks for alertness.  I am just buckling down, gritting my teeth, and riding it out.  I certainly hope it quits soon, as the pain has started radiating down my legs in addition to the spasms.  Sigh...BIG sigh...

I have another physical therapy session Wednesday so I will be giving them some feedback about the pain.  This is what happened to me several years ago when I tried PT before.  I experience some pain during the sessions, but later is when it gets extreme.  The therapists suggested I get with a pelvic floor therapy specialist for the pudendal nerve pain, but my fear is that agressive treatment of that will end up with me laid up for a week or two unable to walk and I simply have no time for that right now.

The area of the radiation field from years ago is very sensitive to touch and perceives even light touch as pain so I am supposed to try to desensitize my skin and retrain it as to what is normal sensation.  Didn't know you had to train your skin!  The therapists said that I need to have deep tissue massage and myofacial release done but I won't be able to tolerate it until I am able to get this overreaction under control.  They want to do a case study of me because they don't see many people with my type of problem - not related to a spine issue or an accident.  Glad to be an object of interest I guess!

Gonna try to go to bed, hot needles are being poked in the bottom of my feet and up my shins now.  Starting to jiggle the legs in the dance of pain.  Hoping that this will be the end of the pain for a few hours.  The therapists acted surprised I was still working.   I told them I just want to improve my ability to work - pain I can handle but loss of function I can't. 

I was so excited about getting the PT done because I want so much to do better at being able to stand and walk for work.  We are such a small company I feel like I'm not being a good team member because I can't carry my share of the "go-live" support like I used to.  Travel is becoming such an issue - carrying luggage is a problem, stairs are problems, driving is a problem, standing in line at airports is a problem.  I just want to do my job and it is frustrating to keep hitting limits I have no control over. Looking forward to a better day tomorrow!   Will try to stretch the pain out tonight - using the cat in this video as a model of relaxation!!!

Brain Fog

The Headache Doth Persist

Last weekend I woke The Headache from its slumber.  I have not been able to put it back to sleep yet.  The occipital stimulator helps, but nothing really works completely when The Headache starts to escalate.  I'm trying a little stimulator vacation this evening as my head was getting over stimulated (you feel "sore" in the stimulation area especially after hours of running it at high levels; the only way I know to make it better is to turn the stimulator down where you barely feel it running).

I hope The Headache stays at its present level while I keep the stimulator turned down.  I'm at about an eight out of ten on my pain scale; I can handle it up to a nine.  My brain is fuzzy and foggy right now, not thinking right so I hope I spell everything correctly and include all the words I intend to write!

I'm not taking any pain medication at all this evening, even though The Belly is protesting.  I have taken anti-nausea medication and antihistamines today, trying to manage the feelings of sea sickness, vertigo, and pain with non-narcotic solutions.  I don't know how people who take narcotics daily for severe headaches do it.  The headache gets really bad really quick and the narcotics don't really touch it and for me they seem to make it worse.  Maybe its just the hemicrania continua, it's a bit of a strange duck in the chronic headache world...or maybe I'm just excessively sensitive to strong pain killers...

A recent article in About.com on hemicrania continua by Betsy Lee-Frye stated that

Hemicrania continua can be one of the most debilitating headache types experienced by migraine sufferers. The cause is unknown...

I believe the writer misspoke about it being experienced by migraine sufferers, but maybe she meant that migraine sufferers can get HC.  Hemicrania continua used to classified as a TAC (Trigimenal Autonomic Cephalgias) along with cluster headaches, not as a migraine disorder, and now is considered a primary headache disorder just like migraine and cluster headaches are.  When I am in an emergency room and I describe HC for the nurses and doctors I describe it as a cross between a migraine and a cluster headache.  The pain is more towards the cluster spectrum of pain (you can't sit still, you writhe in pain) and the swelling of the eye and runny nose are similar to cluster headaches, but the photophobia, and nausea, and unilateral presentation are more like migraines.  For me, the cyclic nature of The Headache also makes one think of cluster headaches rather than migraines.

The article also states that exercise and alcohol consumption can make hemicrania worse, which has also been my experience.  I have had one drank, a white wine spritzer, since The Headache began and I have not repeated any exposure to alcohol since.  That night was not a pleasant experience and I ended up in an ER two days later - a very expensive glass of wine.

Ms. Lee-Frye also states there has been some evidence of a link between HC and brain stem lesions from a stroke.  Nothing has shown up in any of the CT's or MRI's I have had, but I can't do the contrast so I suppose something could have been missed.  I do think I would have known if I had had a stroke when this all started, and I am not sure what difference it would make if I did find some evidence of a lesion - there would be nothing they could do for it anyway.

The old "bad pain" at 2 AM business is starting up again, making it difficult to rest.  I'm just being a whiney butt tonight.  The stimulator has gotten me used to a relatively painfree life, at least compared to the last two years.  I am just going to have to take some bad with the good, and know that life is better than it was, even if The Headache is not behaving itself.

Going to pack my head in ice, and put heating pads on my neck and shoulders and see if I can get my pain and blood pressure back under control.  I'll be so elegant, with my blue ice pack on my head and two heating pads draped on my back. 

Pain Descends

Bad Night and Day.... ad infinitum

No pain medication, too much snow, sick, and then The Belly balks. Spent most of Friday fighting to tromp down the pain, Friday night and Saturday incapacitated for the most part, tonight trying to drink more liquids debating how much longer I can try to manage with heating pads, hot baths, pacing the floor, and hunched over pillows.

The Headache decided to have one of those days when the pain spikes quickly and then disappears for awhile and returns to do it once again. The right side of my head decided to jump right in and join the party. I finally turned the stimulator down after trying to kill this with electricity. The muscles and skin get "overstimulated" and then the stimulation starts to translate to your brain as pain too!

Thinking maybe I have another kidney stone as part of the pain, so I have been hydrating hydrating hydrating even through the pain and nausea. I think I am losing the pain battle tonight, but would like to make it until morning as I am actually feeling too sick to drive 45 miles to an emergency room. Darkness and cold and roads that have turned to ice just is hard to face when you don't even feel like sitting up.

I wish I could dare take another hydrocodone. I tried to get my doctor's office on the phone Friday, but they didn't make it in because of the heavy snowfall. I laugh, as I grew up where you had three feet of snow most of the winter, and drifts maybe 20 feet tall and you still went to work and got to school. Down here, three inches of snow is enough to close everything, and it looks like we got about 12 inches. Today it was melting where it was shoveled or scraped off, but tonight it is cold enough to refreeze.

I want to stop the pain, but I just can't risk another allergic reaction after how big the hives got last time I took a pain pill. I have had hives as big as dinner plates, and have permanent dark spots all over me where hives have broken into the vascular levels of my skin. I'm trying all the tricks I know to see if I can derail the ouchy train before it gets going full steam again.

The pain is coming in waves, then it backs off, then comes again. Not pleasant at all, and I'm whiney about it. I tell myself, you've been through worse and came out OK. I'm just very tired tonight and feeling ill, and I think that makes the pain seem worse than it probably is. I just have no point of comparison anymore, because I don't have any pain free days. I find it very difficult to be objective about pain anymore. It's a sore subject for me, pun intended.

I have to train next week at a client's for three days straight. I don't know at this time if I am going to make it. I'm trying my darndest to get ready for it, but it's a tossup if I can make it. I feel like I am letting my team down, and myself down by not being able to control my recalcitrant body. I wish I had a wonder twin, so I could say "Wonder Twin Powers Activate!" and fix all my problems with my wonder twin powers. Sigh. Wish I had a Gleek too... and an invisible airplane.

Good day? Bad day? Boomerangerama

At least I got to go to work!

The Headache was pounding away today, burning and piercing my brain so it was hard to think and hard to sit still. I woke up with it at 3:00 a.m., never a good sign, yet I triumphed over it, and did 5 hours of work today!

It becomes so difficult to think with my mind returning to pain each minute it increases, sorta of a boomerang effect: The Headache, I'm driving; The Headache, I'm typing; The Headache, I'm talking on the phone; The Headache, THE Headache, THE HEADACHE, try something else....

I did the pain dance with my feet under my desk, I couldn't stop myself from grabbing my head a few times and moaning, BUT I did make it through the day and back home where I could take some more benedryl and phenergan, so I'm not counting this as a bad headache day. It was a moderately bad headache day that I got through without making myself unconcious. I'm still doing the dance of pain, but not as many times an hour.

I hope I was moderately productive at work - I can't tell when The Headache is really active. I hope no one noticed my efforts to keep the pain at bay - its bad enough I feel so bad about missing work - having my fellow workers notice my pain jitters is worse. I am trying to gain control of my body and it looks like I'm losing control of it. Thank heavens they have never seen me at times The Headache wins. It just feels so undignified.