5 Things That People With Chronic Pain Hate Hearing

We all have well meaning friends/ family/ co-workers that have loads of advice to "help" us with our pain. Hear are 5 things that I want banished in the sea of forgetfulness for all time.

1. Maybe you should take more vitamins or take this special green drink blessed by this guru. 

So Before I was struck down by this illness, I worked out 5 times a week, was a vegetarian, used pure whey isolate protein, and drank green and red lightening. Not to mention, I took a multi vitamin pack, fish oil, vitamins B, C, and E and I drank gallons of water. 

 Obviously none of that worked, so "Get yo Life!"

2.Is this Contagious?

No. It's not Vampirism. Stop watching lame ass Bella and Edward. 

3. I bet you get good drugs

Well...yes and no. If by good drugs you mean drugs that cause short term memory loss, issues with motor control, cold and tingly hands and feet, cataracts, liver damage, changes in taste, personality shifts and the list goes on and on. So yes come get high with us if you want to...

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4. Don't speak the illness into existence, it will become real.

This shit makes no sense to me. None of us never heard of this God forsaken illness before we got diagnosed right? So how did we speak it into existence in the first place? I don't even get that ridiculous logic.

5. I know how you feel. 

Really...so you broke a toe or skinned a knee once and you know what's it's like to have something called the "suicide disease". Oh ok. Try again.

This post really is all in good fun but there is a bit of truth to the things that we all hear. It's cool that the people who are healthy ask questions but we can always dream that the common sense fairy comes down but until then, let's laugh at their expense for once.

Having a Rare Chronic Illness: I Look Fine, But the Pain is Real

Having a rare chronic illness that people have never heard of, you have to not only deal with the debilitating pain, but the aggravation of trying to explain your disorder to people that have never heard of can make it worse. My mother still mispronounces trigeminal neuralgia and calls it “trig-mee-nal”.  Should you disclose it to your employers? That’s an agonizing decision and again you have to have a lengthy conversation over and over again with your boss, HR, and co-workers which could leave you in a vulnerable position at your job. The alternative could be suspicion that the side effects of the meds you are taking to control the pain are the effects of illegal narcotics or some type of psychological problem.
Just because you can’t see my pain, it’s real. I am a master of distraction and deception just to be able to make it through my day. I listen to music, watch TV, or troll people on Facebook.  Trigeminal Neuralgia is rare, it’s real and I wouldn’t wish this suffering on my worst enemy. All of us silent warriors want the same things, to be recognized as sane, intelligent people trying to cope.

               

But you look Fine.

A person with chronic illness, especially a long time sufferer has coping skills that are amazing, almost pathological. You are always in some level of pain, but at some point you start charting it on a numerical scale. Any pain level above a 3 is feeling great. Nothing is worse than having friends of family members that dismiss your illness or treat you with skepticism when you are in excruciating pain. You can provide your family or friends with research of the illness; take them with you to your doctor’s appointments, or ask them to hand you your special pain scarf or heating pad while you wince in pain and teach them all your pain triggers and medication quirks, such as tingly hands and feet or short term memory loss. Thanks Topamax!

               

There are good days and bad days.

My good days are days when I can walk in my 5’ stilettos and not have to concentrate to walk straight. A better day is when I can remember more than something for longer than five minutes prior. My bad days are days are when I don’t have the will to put on makeup to go to the ER to get a shot or if I contemplate wearing flats out to dinner. Other bad days are if I don’t take the effort to put on actual clothes and put on workout clothes and I don’t work out. Sweat pants are the universal sign of officially giving up.

Join a support group online or else.

Guess how many people I know face to face that have Trigeminal Neuralgia? 0. My neurologist that diagnosed me said that I was the first person he has met in 30 years that had the disorder. That gave me so much confidence. When there is no one you know, and no one has even heard of your disorder and the advice you get from family is to “pray it away”, you tend to feel alone. Who can relate to the side effects of your meds, the intensity of the pain, the depression associated with the disease, everything you lose? If it weren’t for my online groups, my TN family that I can vent to, that truly understands the agony and suffering, I would’ve given in years ago.

Learning Your Triggers...

How would you like being told by your neurologist that you are the first case of trigeminal neuralgia he's seen in 30 years? 

We all know the throbbing, the ice pick stabbing or electric shock that comes from nowhere, that wave of intense pain that literally knocks you off your feet. The pain cycle is inevitable and so are the feelings of anger, fear, and depression. We all know the feeling when we get to the end of the painkiller bottle, have a month before our doctor can see us, the painkiller makes us a zombie and unable to function, or worse, the painkiller no longer works and the doctor refuses to prescribe anything stronger for fear of drug seeking.

It's important to try and understand this disease and learn what our triggers are. I learned the hard way that powerade is one of my triggers. Every sip caused unbearable pain to the point where remission was a foreign word, but something longed for like a pot of gold at the end of a rainbow. I also had a crap job as a customer service representative where I had to give misleading information to less than intelligent customers, so you can imagine I got cursed at a lot, plus the management allowed the customers to verbally abuse us and paid us virtually nothing, so of course that caused a significant amount of stress. In addition to the verbal abuse, they had the thermostat on sub arctic temperatures, which coupled with my topamax and tegretol made me even colder, which also triggered numerous attacks. Talking on the phone for 8 hours daily triggered attacks, smiling sometimes triggered attacks, as well as chewing. Naturally, this leads to a deep fear of dentists and any dental work, which isn't a good thing because that will lead to massive tooth decay and tooth loss and cause more facial pain in the long run, which also increases stress.

I have Atypical Bilateral Trigeminal Neuralgia, meaning it's on both sides, but the pain presents primarily on the left side of my face. When I sleep on the left side, that can trigger an attack, and I have to sleep on my right side all night, which causes my entire right side to be sore.

Never a day goes by without my maintenance meds and my rescue meds and rarely is there a day without some type of pain, even if it's a level 1. With this disorder, we learn how to cope and function with different levels of pain and if we aren't completely debilitated, then it's a good day.

There are some natural pain relief that I use that seem to help a little and takes the edge off of the pain when I have an attack. Of course there's Orajel which numbs the gums quite nicely, but my new favorite is a few drops of tea tree oil directly on the tooth above the nerve. Or, put a few drops in some warm water and use it as a rinse, just make sure you don't swallow. I have heard that peppermint oil and oil of oregano has some healing properties as well, but haven't used either.

Every day in remission or pain level 3 and lower is a good day!

Diagnosis...The Beginning,,,

OK...so the nightmare begins right? This pain overwhelms you on one side or worse both sides of your face, (like me). You have either spent tons of money going to the dentist, been accused of drug seeking by the e.r. or insane by your general practitioner before someone advised you to see a neurologist.




At this point, the drug cocktail, "wait and see" what works, because they really don't know what will respond game begins. Usually the first drug that is prescribed is Tegretol, (carbamazepine), an anti convulsant, 100 mg and gradually increase your dosage. When we begin with neurological meds, there is a litany of side effects that enter our world of suck, such as behavior changes, mood changes, anxiety, depression, restlessness, difficulty breathing, difficulty sleeping, swelling of face tongue and throat and my personal favorite, low white white count, i.e. compromised immune system.


I was initially put on 50 mg Topamax, lovingly called "dopamax" because I also have classic migraine without aura. With that dosage, it was just inert materials, no medicine. The only plus with topamax is that when you initially take it, you lose weight. The negative and it's a MAJOR NEGATIVE, is that it makes you stupid and I mean incredibly stupid. Like Beyonce on Final Jeopardy stupid. You're incapable of intelligently expressing a thought because you can't find the words you should know. There is such a physical and mental slowing that it causes a depression almost as bad as the neuralgia the drugs are trying to help. The dumbing down goes away in a few weeks to a few months, but the process is soul crushing. Topamax is usually used "in addition to" other drugs. So, this is like the gateway drug for most people and they go from here. The side effects in addition to gross stupidity are constant numbness and tingling in the hands and feet that never goes away and I mean never. This is called parathesia, the pins and needles feeling when your hands and feet fall asleep. Even when you discontinue the drug for a few days, the numbness is still there. Even your neuro will tell you to "Just get used to it". Lesser known side effects are cataracts and liver damage.


During the early stages of the disorder, learning what trigger the disorder is tantamount, and there are more triggers than things that can sooth the pain. Family and friends will not understand the crippling pain and trying to explain will become extremely frustrating simply because they haven't heard of the disorder and to them, it's not real yet. What's important at this stage is getting a handle emotionally on the disease, because emotional well being is a trigger point along with diet, exercise, caffeine, artificial sweeteners, heat, cold, hormones and barometric changes in temperature.

Enjoy the rest of your day and keep the faith!