On Fire

Neuropathic Pain
 Have tried to rest and recover the last few days.  The pelvic and leg pain has been fairly bad.  I have been cutting up my dilaudid pills into smaller and smaller sections to see the minimum I can take with the least amount of side effects and will take the pain down to barely tolerable.  I had to give up and take it more often today (I figure the dose I am taking each time to be about 0.5 mg) as the pills have not been keeping up with the pain adequately. The lower dose of neurontin just does not seem to be doing much for the pain at all.  My lower legs feel like they are on fire this evening.

I am still having to use inhalers for my breathing problems.  I have trouble breathing if I walk too fast or go outside even in the warm spell we have had the last couple of days.   Still feeling short of breath, but will wait until Wednesday or Thursday to see if I need to go back to the doctor.  Hoping to get to work bright and early tomorrow morning.  I am soooo ready to get out and do something!

Hoping that the hives the dilaudid gives me won't get worse.  I am taking benedryl with the small doses I have been taking (I called the doctor's office first to make sure it was OK) but the itching and hiving continues.

I am having trouble sitting still which I know is from uncontrolled pain and compounded by the benedryl and the itching and the hiving.  Instead of shake rattle and roll it is fidget itch and hive.  Sigh.  Wished I looked so mellow and fine like in the song. 

Low Dose Naltrexone

Wonder Drug? I Wonder. I Wish.

Naltrexone is an opioid antagonist used for treating addiction to alcohol and opiates.  The doses used for this type of treatment are around 50 mg once daily.  Reason would tell you that something that counteracts opiate pain medication would also be something that does not help pain.

There are some doctors now prescribing this in a very low dose to treat a variety of disorders (off label - meaning it is not the reason this drug has FDA approval).  The dose recommended is between 1.5 mg and  4.5 mg per day.  The website that touts this drug states that this must be compounded at a compounding pharmacy (where they build the pill from other components in the strength desired) and must be prescribed by a physician.  It seems to be fairly inexpensive and at that very low dose hopefully side effects would be minimal.

I learned of it through a discussion group I belong to.  One of the ladies who has a very destructive autoimmune disorder is giving low dose naltrexone (LDN) a try.  I don't know her success yet with it as I am not sure even how long she has been taking it - maybe just a few months.  I looked it up and read about it and am intrigued, though skeptical.

There are anecdotal claims and a few scientific studies that LDN can stop the progression of certain cancers, help with multiple sclerosis mood disorders and pain, help with fibromyalgia pain, stops the inflammation in Crohn's disease, and works to stop the immune response of autoimmune disorders.  Instead of working by suppressing the immune system (as prednisone, dexamethasone, prednisolone and cyclosporine do) it seems to work by boosting the immune system.

How does this work to decrease pain?  According to the authors of the website low dose naltrexone taken before bedtime produces "a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."  Endorphins are the body's natural opiates - pain killers manufactured by your body.  Enkephalin is a specific type of endorphin that is sensitive to certain types of stimuli that might damage your body.  Enkephalin is also thought to be part of the cascade that creates an autoimmune response.

Since I rarely am asleep in the middle of the night, I can see how my body might be missing some nature endorphins and enkephalins.  Maybe this is what my PCP means when he says lack of sleep creates a build up that increases pain?

In treating cancer some think that in addition to increasing endorphin and enkephalin LDN targets the opioid receptors on certain types of cancers and thus somehow inhibits reproduction.  My interest in this is because the type of cancer I had (endometrial cancer) is hard to treat with a recurrence. I am keeping LDN as a treatment possibility in case my cancer ever decides to return.  I believe in using conventional treatments, but this would be an option you could take with the conventional treatment. 

Do I believe all the hype?  Not really.  The studies done are just for small cohorts under controlled conditions.  Most of the evidence is from patient stories and physician use which of course are not a controlled scientific blind study. The studies seem to all agree there is no harm from taking LDN and that if LDN is taken concurrently with opioids it seems to boost the opioid effect instead of suppressing it.  The one study on fibromyalgia said a significant gain of 30% reduction in pain was found.  I guess that is another disease where people are not able to have restful sleep!  I do find it hard to believe that one drug treats all these disparate diseases with the same mechanism, but that's the logical me talking!

Will I ever try it?  Definitely if my cancer returns (knock on wood!) because I won't have anything to lose. If my neuropathic pain and The Legs get worse or The Headache or The Belly pain are not controlled I might give it a whirl. I've tried a bunch of other stuff that didn't work so why not this?   Just more money down the drain!  After all, I bought HeadOn and applied it directly to my forehead - directly to my forehead - directly to my forehead - in a desperate attempt to quell The Headache!

Below find a link to a blog entry skeptical of most of the claims at the low dose naltrexone website.  Some points made agree with my conclusion that there are not enough real scientific studies to sort it out yet.

LDN - Medical Revolution or Psuedoscience?

Articles from peer reviewed journals concerning low dose naltrexone - most of these are for very small studies or a single case.

LDN and Pancreatic Cancer - a case study
DN and IL2 in Metastic Cancer Treatment
LDN and Crohn's Disease
LDN and Multiple Sclerosis 2010 (fairly lukewarm review)
LDN and untreatable solid tumors -2002- a study
LDN and fibromyalgia 2009 study (favorable)

Communication

Conversation Started

I let one of my bosses know how disappointed I am in my current ability to work and contribute.  I said I committed myself to seeing the business through the stream of installations and conversions last year, I am just very unsure how I can do that again this year.   I am not sure yet what I am going to decide, but I know that The Legs are my major obstacle right now.

I hope to talk with them next week, and see what they want to do and let them know what my limits are and if that is still acceptable for them for work.  I have thoroughly enjoyed my work with them.  I love their company, I love what I do - or rather did since I have cut back this fall.  I believe in their vision and feel that it is just going to take a little tip forward and things are going to take off even better than last year, which was a very good year for them for new business.  If my bosses think that we need to make a parting of the ways I will be sad, but they have been more than fair to me. 

I just can't in good conscious continue to be so unreliable and so illness prone as an employee.  I have ended up ill or unable to walk after the last two trips and have missed a couple of weeks of work each time.  I ended up in the hospital last summer probably as a cumulation of not taking care of The Belly properly while doing installs.  Not only do I feel bad about missing work, but it costs me money and it costs my employers money especially with insurance premiums and for lost man hours.  I hate that I have just gone from one illness to another the last few years; I had gotten a clean bill of health before I started this job nine years ago.

Incapacitated by this or that during the last seven years I have been injured financially also.  Co-pays, deductibles, out of network deductibles, travel to specialists, medication costs, missed wages have worked together to ruin whatever little credit I had.  I am lucky because my home has no mortgage, but even paying real estate taxes has been a struggle.   Not only do I have my own financial medical issues, I have my mother's also, and have been helping my brother pay for his prescriptions. 

I am terribly whiney tonight.  The lower dose of neurontin is not helping The Legs very much, and I am reluctant to keep supplementing with pain meds.   Feeling tired and woozy, think I will sign off and go to sleep!

Fighting The Inevitable

Time to Throw In The Towel?

In boxing, throwing in the towel means you give up, you've been whupped, you are not able to continue, you concede the fight.  I feel I am almost at that point. I get to this place just to revive myself and fight onward for another round or two.

I am so fatigued right now I fall asleep sitting up and it is scary to drive.  I am in enough pain from so many sources that I am almost willing to give up what little coherent thought I have left for adequate pain relief.  I can't digest food.  My incontinence issues are not improving. My ability to walk continues it's worsening path.  I want to quit trying to keep my forward momentum going.

This is probably just late night pain talking. I had a reality check today that started me down this path again.  The roads are still ice and snow covered around here.  I decided to go to work this morning waiting until noon so the roads would be at their optimal cleared levels for the day.  I only made it 15 miles, and then exited the interstate and headed back home.  I used to love driving, no matter the conditions.  Today the pain levels from driving were too much and my concentration and reflexes were too poor for the road conditions.  I feel like a dunce, a failure, a wuss. 

Where is the old Winny who would let neither rain nor snow nor dark of night stay her from her appointed work hours?  My poor health has drained my energy, stamina and strength for the last seven years.  I think it has drained my determination too.  Tonight I am debating what I should do.  I have been trying to delay any drastic decisions until I see Dr. House in April.  I just am not sure if I should wait.  I wonder if it is fair to my employer and my fellow co-workers and my company's clients, if it is fair to myself, to keep trying.  I love my job, I love my work but I don't even have the brain power to think right now to be effective.

I'm going to have to give myself an old fashioned pep talk.  I think I need Burgess Meredith from Rocky to tell me to "eat lightning and crap thunder".  On second thought, for someone with incontinence issues this may not be such a good idea....but I guess it would make me a "very dangerous" person!

Snow Storm

Blizzard Conditions

Having a bit of snow today.  I live in southwest Missouri.  Our major weather problems are tornados and ice storms.  We really don't know what to do with snow.  People who live or grew up in more nothern areas (as I did) can find it hard to understand that everything here comes to standstill with TWO inces of snow, so when we have 18 inches of snow in one day it is major league chaos.

I did not try to go to work.  Have had some issues with the internet today and phones (I am on a DSL) going down and back up, so I didn't even try to work via the internet.  Everything seemed closed today including the interstate I use to drive to work.  Apparently Oklahoma closed the interstate going westward, then the traffic started backing up into blizzard territory in Missouri, so the Highway Patrol closed the westward bound I-44 lanes from Springfield Missouri to the Oklahoma line.  Since that would have been my homeward route I am super glad I did not try to go to work.

I have a personal way of know when to not drive around here.  Three cars or trucks off the road and I pull off and wait or turn around and go back home.  That many vehicles off the road mean that people are driving in conditions they are not prepared or experienced in driving in, and I don't want to be on the road with them either. My understanding is that there were trucks and cars sliding off everywhere.  Sigh.

A nice neighbor cleaned our road and my driveway after dark this evening but I am pretty sure it will be drifted right back by morning.  Of course it should be melted in a day or two but those will be a miserable couple of days.  My outside dog is in her insulated dog house and we have her heater going full blast.  The cat asked to go outside and we saw him sneaking inside the dog house too!  I guess Bingo will have a full house!  I wish she would come inside or go in the garage but she won't stay in a building with the doors shut.  Her house should be very warm and kitty cat will make it even warmer!!!

My dachshund is very sad about the snow as his legs are not very long and he can only navigate where we have scooped the snow away.  He definitely does not like snow or cold or ice.

I am now on a lower dose of neurontin.  I was supposed to get the prescription Monday but I came home from my PCP to wait on the perscription and fell asleep sitting up in a chair.  I woke up around 6 PM - I had somehow during the day wandered over to the couch and knocked out there.  Don't remember anything other than sitting down in the chair.  Guess I'm still not over the flu.  Didn't get the prescription today because of the blizzard. 

I am taking 300 mg of neurontin now because that is what I have on hand, but the script is for 400 mg so maybe that will help the pain a little more. The 300 mg dose is not doing much.  My PCP said I will have to balance my tolerance for side effects against pain relief.  I said I really wanted to double the neurontin, but the diarrhea is just not workable as I am getting dehydrated.  So less neurontin, more pain, less diarrhea, less dehydration.

Going to bed soon, The Legs are not happy at all.  Not sure if I will be able to sleep.  To tell you the hard truth, some nights I simply lay curled up in a ball and cry when the pain gets too bad, especially the pelvic pain.  Why pain gets worse at night I don't know.  I suspect it is because there is less to distract me.  I will have to practice my deceptive distracting ninja skills in order to perfect this as a pain relief strategy.  If only I had a grappling hook, because my nephew in Florida told me that if he had a grappling hook he could become a ninja.  I think I could too, at least a ninja of distraction, or at least grappling WITH distraction!!

My Hair Hurts

Painful Face

I am proud of myself - I made it to work despite not hardly being able to walk once I got there, and I was actually productive working on three or four projects.  I didn't finish them, but I got close on a couple.  Woo Hoo!  Put the smackdown on those pesky Legs today!!!  I think my theme for the next year is going to be DISTRACTION!!!  I think it will work just as well as what the doctors have been dishing out.

Still no word from Dr. Kildare about his "plan" for my care.  I fear March 2012 may come and go before they call.  Oh well, it was a long shot at best.  In January I will have to see if I can get an appointment somewhere else.  This is excessively tiresome, but in the year of DISTRACTION maybe I can tackle The Legs and get the problem under some sort of control.  Or maybe not.

I think because of all the pain I am already experiencing today (my cup o' pain is chock full) The Headache is trying to revive.  I guess it is still the old three day cycle, as Friday was horrid, so I guess Monday has been horrid, then Thursday, then Sunday.  Yeah!!!  Christmas Eve and Christmas are not in the horrid cycle bad days, so I may get to enjoy a bit of holiday yet.

Sometimes when The Headache gets to going (like today) I experience a lot of facial pain, and anything touching it (glasses, hair, wind, me) sets it off worse.  I was told this is a type of allodynia - experiencing pain from non-painful touch.  It is a symptom that goes with the diagnosis of Hemicrania Continua, but I think most headache conditions have this as a possible symptom.  Tonight even my hair follicles seem to hurt when I move my hair.   I wonder at times like these if I need a Sinead O'Connor hair cut.  Probably the irritation of shaving my head would hurt worse than the irritation of the hair.   Dang!  Can't win for losing!

One of the problems with having too many health problems is that the problems from one distinct issue (i.e. allodynia from a headache condition) cross over and create different problems for another health issue. 

I have mild sleep apnea (diagnosed by Dr. Dense in 2008 after forcing me to take a sleep study in her freezing torture chamber / sleep center combo) and am supposed to use an APAP machine to assist with this.  Dr. Dense insisted I get this study done when first trying to treat me for The Headache, and refused to prescribe any medication until I did this. I am sure this is because she could charge several thousand dollars for reviewing a report spit out by a machine instead of just a few hundred dollars for my office visits, but I guess I'm being cynical aren't I??  Anyway, I could barely stand the wires strapped to my face for the sleep study, and THEN boy howdy try putting an elastic band tightly across some region of your head that does not like to be touched to hold a mask on.  The allodynia from The Headache prevents me from wearing the mask to assist with nighttime breathing which is supposed to help The Headache.  Impossible!

The cankle situation got totally out of hand this weekend.  I not only had cankles, but I couldn't even stick them in my big ol' cankle shoes.  I called the endocrinologist Dr. Kid to say I need a new diabetic medication, Actos is not for me or put me back on Avandamet.  The last time I took Actos I swelled up like a puffer fish, and I'm doing it again.  So this is how it works.  Called at 8:00 AM, talked with medical assistant who put a note in the system.  She said they would call the new prescription in and give me a call back.  In the meantime I make it to work, and get busy distracting myself.  At 2:30 I call my pharmacist and they have not received a new prescription.  I then call Dr. Kid's office and speak to the medical assistant who apologizes that they have not called me yet. Dr. Kid won't prescribe Avandamet, even though I had taken it for two years no problems found, so he wants to know what I want to take.  Huh??  I then tell the MA that I can't take sulfonylureas because I had had an allergic reaction to them, and I couldn't do metformin alone because I was at the limit I could tolerate.  She said they would call back or call in the script.  I wait until after 4:00 and call the pharmacy, no new script.  I call Dr. Kid's office.  They are closed.  So I guess I will try again tomorrow morning.  Big Sigh.

The lunar eclipse is starting, and I am going to run out and see what I can see.  It is very foggy tonight, so hoping the full moon is enough to burn through the clouds and the fog.

Neuropathic Pain

Hopping Legs & Hives??

I have gotten through the week without any pain meds or muscle relaxers so far. Each day I drive into work the leg pain increases.  Today I carried a few trays of veggies and fruit for the office Christmas party from my car into the office, and then took a couple of the empty (but heavy) trays back home tonight.  I don't know if I am just having trouble tonight because it is cumulative pain, or the weight of the tray (which might have been between five and ten pounds heavy) was enough extra to push me over the edge.

Last night I spent the night tossing and turning with my legs cramping and pulling.  I had nightmares about trying to climb stairs or deciding to take an elevator, and then sitting in a doctor's waiting room swinging my legs while I sit in office chairs too high off the floor for me.

I have jiggling, cramping, burning, tinging, numb, and malfunctioning legs tonight.  As the pain increases my nausea has been increasing also. The bottoms of my feet and the arches are cramping and on fire.  I feel like hot needles about six inches long are being stuck in my heels.

It's now almost 1 AM and I have been trying to outlast this since about 9:30 PM.  I think I am going to have to break into my medication.  I have had only a few hours sleep since Saturday because of the pain.  My PCP says not sleeping makes the pain worse, so I am sure that is a contributing factor.  

My knees for some reason are burning and itching too, they actually feel hot to the touch, as do the palms of my hands.  Sometimes I feel this way before I start getting hives or angioedema.  But I have been a good girl all day, and have not eaten any mammalian meats even though I was sorely tempted by something called "Settler's Beans" a gentleman at work brings every year.  It has ground beef and bacon in it so I resisted, but it was very hard to do.

I can feel hives popping out on my face so I guess I must be having an allergic reaction or mast cell degranulation.  Sometimes if I let pain get out of control I will just start hiving all over.  I think my body just doesn't like pain very much.  I think it just needs to get used to the new "normal" and move on!!!  No more drama!!!  According to what I have read about mast cell activation disorders trauma can start mast cell degranulation.  Just what I don't need tonight.

On the plus side I finished a programming task for a client today even with my brain full of cobwebs.  I felt like I actually accomplished something!  Just trying to make it until tomorrow.

I'm not feeling too well right now, as my face is starting to swell up a bit.  Maybe that is why I am having nausea and stomach pain.  Going to medicate with antihistamines as I am feeling more than a little light headed.  Just what I don't need right now. Hrmph!

Facial Pain And The Headache

Working on A Pain Action Plan

I was told when the occipital stimulator was installed that there could be some "crosstalk" between the occipital nerve and the trigeminal nerve, the supraorbital nerve and my facial nerves.  These nerves do not touch the occipital nerve network, they sorta interweave their nerve networks with the ends of the occipital nerve network.  The idea was that as the occipital nerve received stimulation it could somehow influence (chemically?, electrically?) the other nerves and problems I have with facial pain could be improved.

Now that I have not had my electricity fix for a couple of days I realize that the facial pain had been reduced.  The pain on the left side of my face at present is at the "let me rip the nerves out with a pair of pliers - it couldn't hurt worse" stage.  I'm also noticing my left eye is turning in at times - I'm sure this is a side effect from the burning nerve pain that bisects my entire face beginning at midline and extending back to my left ear and ending under my chin.  I think of those cliche German officers in the old WWII movies who have saber cut diagonally over their eyes and down their cheeks: I feel like there is a big saber cut running down my face too.   I guess it will go well with my Ms. Peanut monicle.

I am not feeling very with it today, but yesterday wasn't too bad - so one good day out of four! Yeah!!!  Trying to figure out pain management vs. driving tomorrow because I will need to go get the controller and reprogram my new one.  To medicate or not medicate - that is the question.  To drive or not to drive is the next decision.  Big Sigh.

I was looking up allodynia (which is an exaggerated pain response to normal stimulus) and stumbled upon a link from the National Institute of Health (NIH) to a site called PainAction.  I have signed up, and I'm going to see if I can formulate a pain control plan utilizing their tools.  There are four main sections:  Back Pain, Migraine Pain, Cancer Pain, and Neuropathic Pain.  I definitely have Neuropathic Pain, and I think some of the information under Migraine Pain will be of assistance with The Headache.  Too bad they don't have a section called Belly Pain!  Then it would be like the trifecta of pain websites! 

There is a pain tracking tool, and a section on self-help, and information on alternative therapies.  I have downloaded their pain management booklet, and am going to read up on chronic pain and how to manage it.  Hoping to get a few new tips that I can use in addition to my daily stretches and biofeedback.  I know I need to get back in physical therapy - it did help my endurance this summer as I was able to be on my feet longer without pain intervening.  Also the myofacial release decreased some of the sensitivity (allodynia) I have in the radiation fields where I received treatment, so physical therapy definitely is a winner in my world!!

The hives are dancing across my skin tonight, here, there, and everywhere.  They are bigger than they have been, and I fear I may be allergic to dilaudid, which I have been taking for The Headache when it is at its worst the last few days.  I will be extremely sorry if that is the case, as I will be almost completely out of pain medication options.   Plus I will be back to having the Big Lips.  My ears feel like they are swelling and are extremely itchy.  My digestion quit working earlier today, so The Belly is having its turn while all systems are out of operation.

I am having trouble sleeping between The Headache, The Belly, and The Hives.  The Legs are behaving which is a plus.  The weather has cooled to a nice fall temperature, and I have started the furnace because my mother (who will be 80 in another month or so) has a hard time staying warm.  I personally keep my bedroom at about 68 in the winter because since The Headache came along I can't sleep in a hot bedroom. 

Hoping this next week will be better than last.  I have things I need to get done at work, and did not plan to have a health crisis.  No repeats this next week.  Am predicting smoooooth sailing and a productive work week!  I want to be able to pull some long days, as I know exactly what I need to do - just getting it done is another matter.