I am having ANOTHER flare-up of my Trigeminal Neuralgia and it f**king sucks. Debating going to the ER for pain relief. I never worry about being treated like a drug addict when I ask for pain assistance for this, or if my Osteoarthritis and hip-related pain issues become overwhelming. When it comes to my Fibromyalgia though, I hesitate because I’ve seen the looks in the eyes of some of the nurses and doctors:
“Oh, look…another drug addict looking for a fix”
“she doesn’t even look like she’s in pain…and her BP didn’t register very high either”
I work hard on educating the medical professionals I see when I encounter this type of discrimination. The problem is, it’s often hard to advocate for yourself when you’re IN that kind of pain and seeking help. You tend to be defensive and desperate and the idea of having to prove your legitimacy is simply ludicrous. I just want someone to help me manage my pain dammit….we can talk about it all when I feel better.
So, I don’t know where tonight is going to land me….home in bed, or at the ER. I just hope my stoopid face decides to smarten up on its own so I don’t have to do no ‘splainin’ to anyone. But you know the drill…
there is always hope
In the course of the last few weeks, my husband and I took a quick trip from home (Victoria, BC) to Calgary to visit family and friends. We did the 12-hour drive there in one day and I’ve realized I just can’t do that anymore. Even trying to sleep in the car was painful – front seat or lying in the back. We did lots of visiting, I rested as much as I could, and we did the drive home in one day as well.
When we got home, we bought a house.
We have been house hunting for a while now and I found a listing that we passed to our realtor, who set up a viewing for us. As soon as we saw it, we knew it was perfect. It’s a single level 2 bedroom, one bathroom with a garage. There’s a good size kitchen plus dining area, a large living room with fireplace, the bedrooms are both a good size and there are two patios, one in the front and one in the back. I have 4 different rose bushes in the front of the house, lining the sidewalk, and a hydrangea in the back garden – my two favourite flowers in the world. There’s also a planter for other flowers, and we back onto a green space. Conditions come off at the end of the month and we move in mid-October.
So…what does all this have to do with Opiate withdrawal? Well, simply put, I screwed up my timing for my doctor appointment to renew my prescriptions. I ran out of my prescription of my Oxycontin on Monday, and the earliest I can see my doctor is Friday. And so I’ve been getting by through the use of all the “leftover” meds I’ve hoarded when I’ve had extras after a prescription has been filled. Or when I’ve “skipped” a dose during the day, just to have some extras in case of a situation like this. My current dose is 40mg, 3x per day, plus all the other meds I take. I also have some leftover morphine from my husband when he was dealing with a back injury. I’m taking whatever drug cocktail I can come up with just to get through, as stupid as that may be.
Why don’t I go to the ER? Because despite the fact I have well documented chronic pain, and I only go to one pharmacy for my prescriptions, I still feel like I’m being treated like a drug addict when I go there presenting with pain. I would rather deal with it at home than risk being ostracized or embarrassed. Yes, you read that right. I would rather be in pain than risk being seen as a drug seeker. The saddest part of this is that I sit on two different medical committees as a Patient Advocate, and I’ve told them this, and even though the doctors and nurses on these committees have told me how much that hurts them to hear that, it still happens.
So…I am praying for Friday to get here because Opiate withdrawals are hell, and I don’t wish this on anyone.
but there is always hope.
WARNING: OBJECTS IN MIRROR ARE CLOSER THAN THEY APPEAR
I’ve been having a tough couple of weeks with pain; flare-ups of my Trigeminal Neuralgia (TN) and the overall body pain of my Fibromyalgia, plus ongoing spinal pain from my D.I.S.H. These are the times when I feel like things are never going to get better and I start to feel a bit overwhelmed.
I saw my Pain Doctor, Dr. Winston on Monday (August 8/16) to discuss my spine and the TN. Basically, there’s not much that can be done for the bone spurs that line my spine in the Thoracic Region and look like melted candle wax…the hallmark of D.I.S.H. – Diffuse Idiopathic Skeletal Hyperostosis, which literally means a bony overgrowth of unknown origin everywhere. It’s usually found in men and depending on which information you read online, is “common” or “rare”. Hmmmmm, I wonder how that works.
He has suggested using a Massager like the TheraCane or the BodyBackBuddy to help with the Myofascial release
These allow for use on the entire body, not just the spine, but are especially good on the back because they make it easy to get deep into each disk and apply exactly the amount of pressure you want. They are both lightweight so they won’t hurt me by being too heavy to hold (not generally a consideration for most people, but when you already have arthritis in your shoulders, elbows, wrists, etc., you have to think about these sorts of things).
As for my Trigeminal Neuralgia, we are putting in a request to my Insurance Company to see if they will cover a small dose of Botox, to try and paralyze the muscles around the nerve that is triggering the flares. It’s an off-label use of Botox and there’s no guarantee they’ll approve it, but it’s worth a try. The next step is going to be a referral to a Neurosurgeon, to discuss the various surgical options. I’m getting flare-ups 2-3 times a week and I’ve tried all the various medications that are usually prescribed, so there’s not a lot of options left.
There are apparently several different surgeries that might be tried, so it’s time to research those and see what they are. I know one of them is invasive and is classified as “brain surgery”. I can’t quite wrap my head around that (no pun intended). But, if there’s something that will work, I’m willing to give it a try. The idea of putting up with these flares is too much to handle.
I wrote this a while ago when I was in a really dark spot, but lately, it’s applied
i wore my burden gently, as it burned my tender skin i pleaded with my enemy, my heart would not give in it wracked my body, pummelled me, i fought back with my all the pain, it tried to kill me, but still i wouldn’t fall i’ve always thought a traitor lived inside my skin and bone an evil little bastard never leaving me alone each stabbing pain, each ache, each throb, each pounding in my brain that rhythmically sends the message i’ll never be the same again
I thought I’d share some tips with you on dealing with a Person with Chronic Pain (PwCP).
1. A PwCP may seem unreliable to others (heck, we can’t even count on ourselves). When we’re feeling good, we plan and promise (and genuinely mean it); but when the pain hits, we compromise, adjust or even cancel, because we simply can’t manage through the pain.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it and even harder to explain.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. You may have to repeat a request or write things down for a PwCP. Don’t take it personally, or think that they are stupid.
4. The senses can overload for a PwCP. For example, noises that wouldn’t normally bother you can be overwhelming to us, especially if the sound is repetitious or high pitched. Certain sounds that bother me personally include metal against metal (i.e.: two forks stuck together), the smoothie maker, or repetitious sounds I can’t identify.
5. We don’t have an abundance of patience when it comes to things like waiting in a long line or listening to a long drawn-out conversation. Our pain levels are usually fluctuating and we mostly want to get back to our “safe places”, such as the home. PwCP don’t want to be seen as rude, ever…but we may come across that way if we seem in a rush to get away.
6. PwCP need and value a support system, so this next point is really difficult. Please don’t ask “how are you” unless you are genuinely prepared to listen to the answer. Chances are, we’re only going to answer you with “fine” anyways, to save you from how we’re really feeling.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like loading the dishwasher, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. There’s no way of knowing when this will happen. We’re not being lazy when something doesn’t get done…we may just be trying to get over a hurdle.
8. Pain can come on fairly quickly and unexpectedly. Sometimes it lasts, and sometimes it abates after a short rest. A PwCP may appear perfectly fine one moment and look like they’re at death’s door the next. It doesn’t take much to wear us out – but often, when we’re in the middle of something fun and dear to our heart, we will continue on long past the point we should have stopped because it makes us feel normal.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the PwCP knows there is a refuge if needed. A PwCP may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a PwCP. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Just know that when we say we hurt…we hurt.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That doesn’t reduce the pain, – it only reduces our ability to give it a label. Having you believe us is still the most important thing that we need to feel validated.
I hope this helps a bit to give some understanding of how PwCP work. If you have questions or comments, I’m happy to reply. Thanks for reading and as always…
I’d like to introduce you to a condition I have called Trigeminal Neuralgia. Another one of those invisible illnesses, it has been described as “the suicide disease” by both patients and doctors because of how outrageously painful and debilitating it can be. Here’s the official description, from the Mayo Clinic:
Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.
I feel the pain just under my right cheekbone, into the right eye socket and the right sinus cavity. In fact, when I first started experiencing pain, I thought it was a sinus infection – but when none of the other symptoms of an infection came along, I realized it had to be something else.
I’ve been having flare-ups of TN going back almost 14 years now, but they were so few and far between that I didn’t put a name to them at the time. It was easy to brush them off – maybe a sinus thing, maybe a dental thing…as long as they went away fast, I had other health issues to deal with and I didn’t need more. Unfortunately, over the last 6 months or so (give or take a few months), I’ve had flare-ups that have been so much more frequent, I had to finally talk to my doctor about them.
We’ve tried a couple of things – I was taking Carbamazepine, which is the first line drug, but it stopped working fairly quickly, so now I’m on one called Topiramate. We have to be so careful with medications because of the other drugs I take for pain, etc. The Topiramate has been working up until recently, but it seems to me that I am getting flare-ups far more often than in the past. It might be time for a referral to a Neurologist, and possibly a discussion about one of the various surgeries that can be done.
When I get hit with one of these flare-ups, it starts as a mild ache just under my cheekbone. It then starts to spread to the eye socket and sinus cavity, and completely under the entire cheekbone. It often moves into my jaw, and down into my esophagus. The ache is gentle at first, almost teasing, and then becomes absolutely relentless. There’s no one place to pinpoint where the pain is….it’s just “there” and steady without a break. It begins to feel like tiny little hammers are hitting me…not quite enough that the actual hitting is painful, but the endlessness of it is instead. And because there’s no one place that hurts more, there’s no place to put ice or heat, etc. that helps. Neither helps the pain, and neither do much for distraction either. There’s also no rhyme or reason on how long it’s going to last. Sometimes it’s 30 minutes. Sometimes it’s 12 hours. However long it goes on for when it’s finally done, it feels like I’ve been punched in the cheek over and over and over but the bruises are all on the inside. The gentlest touch on my skin is agony, yet all I want to do is press my fist into my face as hard as I can at the same time. Yes…there is a reason it’s called the suicide disease.
I am now looking at having Micro Decompression surgery as my last medication has stopped working and there are no further options left for me. I have tried Botox which wasn’t effective and surgery is my only alternative.
As you can imagine, because this is an invisible illness, you would never know I was experiencing a flare-up unless I told you (or you were allowed to watch me if I let down my guard). So, stop for a minute. Think of the last time you were out for the day…shopping, working, working out, whatever. Think of how many people you might have run into or interacted with on that particular day. Do you think you could have picked out the one who was having a flare-up? I can almost guarantee you that somebody YOU interacted with on the day you chose was fighting some type of invisible illness, be it TN, Fibromyalgia, Arthritis in one of it’s many, many forms, or more.
This is why I chose to start writing this blog – to help educate people on the fact that there are so many of us out there who are living in Chronic Pain from something, yet you might never realize it. We want so badly to be seen as “normal” i.e.: healthy, that we often push ourselves way past our limits, just to fit in. Or, you never see us, because we’re too unhealthy to get out in public much anymore, period.
I hate TN. I hate the invisible illnesses my dear friends suffer with (migraines, cluster headaches, Fibro, and more). I hate that we are living in pain with no end in sight. But I’m glad that more and more people are learning about us, and wanting to know more about these illnesses. I’m always happy to answer questions – just fill in the contact sheet and I’ll get back to you as soon as I can.