Pain, Behcet’s Symptoms, and Medication Side Effects

Every morning I wake up in pain. As my eyes start to open and groggily reach up to pat Penny and hand her a treat, I am simultaneously taking a mental inventory of what is happening in my body. During my waking hours I am on a constant dose of analgesics (medications that control pain) and engaging in any number of other strategies to mitigate my pain levels. At night, the constant dosing of medications stops, I am not massaging myself, or using ice and heat. At night I sleep. In the morning when I wake the medications are out of my system and I am not feeling great.

I used to immediately declare it a bad day before I even got out of bed. I have learned now to wait about 30 minutes for me to get up and take my medications and see what my medicated state will be like for the day. Not only that, I need to wait for the early signs of withdrawal to dissipate. On this particular day, my medicated state still renders me useless and on the sofa. That is truly a bad day.

Pain is a subjective experience. It is difficult to quantify and qualify. We have pain scales but even those are up for interpretation. What is a “five” for me in the morning may be an “eight” come night time when I am tired and in need of downtime. My experience of pain varies greatly depending on the site, what is causing it, and what it is accompanied by. Are there multiple sources of pain at one moment? Is it sharp? Achey? Throbbing? Today it was a lot of things.

When I woke up I was immediately aware of the cramping in my abdomen; the familiar twinge of lower right quadrant pain that has been persistent for months. Next I became aware of my lower back. I was laying on my back and though I am not sure how long I had been in that position, I could speculate that it was for a significant period of time. I thought this because of the stabbing pain that starts just above my right hip and then ventures down my leg, through my glutes and hamstring and into my calf. With trepidation I shifted my head from side to side. Two days ago I moved the wrong way, sending my neck into a painful and prolonged spasm. The twinge of pain and contraction remained but I had already regained some range of motion – at this point that was a moment worth celebrating.

I slowly got out of bed and threw on some comfortable clothing, knowing I would not be venturing out today. I fed Penny and while she was eating I took my first dose of pain medication for the day, along with the other medications that form my morning drug cocktail. There is a muscle relaxant to help the spasms in my legs, an immunosuppressant for the Behcet’s Diease, Prednisone –a steroid—for the Behcet’s Disease, a stool softener to help deal with the side-effects of taking certain pain killers, a dose of normal Tylenol combined with another muscle relaxer in hopes of helping my neck, and two puffs of my steroid inhaler to ward off any asthma attacks and keep my symptoms in check. As I took Penny outside I waited, acutely aware that when the medications took effect I would finally know what kind of day to expect.

Close to an hour later I was still cognizant of my inflamed knee joint, the twinge in my neck had re-escalated and was threatening to seize up at any moment, and the abdominal pain had me clutching my stomach at times. My nausea was rampant so I added an anti-emetic (a medication to reduce nausea) into the mix and prayed it would take effect before I would throw up everything I had ingested that morning. It was only at this point that I wrote off the day. I found my comforter, grabbed a pillow, and curled up on the sofa with Netflix. Penny was at my feet, occasionally checking in and licking my face. She let me be all day except for the one alert when my telephone rang and a gentle nudge to let me know she needed to go out. For a while she even laid right on top of me, ensuring that I got a healthy dose of therapeutic puppy cuddles.

It isn’t just the pain that keeps me contained in my apartment. This disease, and the medications for it, make sure I am fatigued beyond the point of functioning. They make me nauseous, threatening to send me to the bathroom vomiting at any moment—and often I do end up throwing up and camped out on the bathroom floor so I am close to the toilet. The ulcers in my mouth add to the pain, but after having them for close to 20 years I have adjusted. I have learned how to eat around them, or what benzocaine solutions work best. I have developed a taste for pureed food and apple raspberry baby food. Despite all of the symptoms I have found ways to continue to live my life. Sometimes I do need to live it from the sofa, but that is okay.

Today was one of the days that I lived life from the sofa, which is certainly better than the bathroom floor. I can’t predict what tomorrow will be like, but luckily I have it off. On Wednesday I see my rheumatologist for the first time since starting on my current treatment course of Imuran and Prednisone, which is clearly not working. My sincere hope is that I will be given new medications that may actually help. Prednisone does help at higher doses but it makes me feel so out of control and like I am on an emotional roller coaster. At 5mg a day, my current dosing, I am able to function but I still feel out of control. I cry constantly, without warning, and in inopportune places. This disease is bad enough without the medications joining in and adding to my symptoms and daily hell.

I have been the worse blogger ever and I really do what to shift that. I do plan to write about a few things, like working with ASL interpreters in medical appointments, being a student with a chronic illness, and maintaining a social life as a 20-something year old with a chronic illness. Some things in my life have recently changed, freeing up a bit of time for me to write.

Pain, Stigma, and Internalization

Pain is a universal experience. Everyone will experience pain at some point in their lives, whether it be a stubbed toe, a needle poke from a vaccination, a scraped knee, or strained back. Despite pain effecting everyone at some point in their lives, the experience of it is completely subjective. Everyone experiences it in a way and to different degrees. It is greatly misunderstood and the experience of pain, especially when it isn’t linked to a blantantly obvious wound or visible mark is often stigmatized and judged. For those of us with chronic, largely invisible, illness that happen to have a pain component this can be one of the hardest parts to deal with.

I have chronic pain and it isn’t an experience I can easily hide. I have experience moderate pain in my legs my entire life. I have dealt with spasticity, which is when your brain tells your muscles to contract and engage even when they don’t need to and this plays a role in causing secondary painful conditions. The constant muscles contractions have put a lot of strain on my joints and I started having knee and hip pain before I was even in my teens. Now I have tendon problems and chronic bursitis in a few joints. The spasticity in and of itself is also painful. In the last few years it has begun to catch up to me even more and part of me wonders what role Behcet’s Disease is playing in this as well.

I have also written before about the lumps/tumors that have grown in my lower back in the last several months. Getting them evaluated has been difficult but we seem to be moving forward with that. Last week an MRI requisition was sent in to have imaging done and hopefuly be able to see what they are. We have ultrasounded them but they weren’t visible despite being easily palpable by even non-professionals. They were recently looked at by a physio, mostly to try to assess the pain in the area and it was determined that they are irritating the bone in the area and that I have a bunch of trigger points around it. All I know is that sitting is painful and I use a wheelchair. It kind of sucks and I would love for them to be treated or removed, but first we need to figure out what we are dealing with!

The point is that I experience a lot of pain. Somedays my pain levels are such so that even people who barely know me can tell I am uncomfortable based on my face, my squirming, and inability to focus. Somedays I am better at keeping it on the inside but I am still experiencing it. It is hard to explain to someone who doesn’t have chronic pain what it is like to constantly hurt. It is hard to make them understand how it impacts my ability to focus and get things done. It is hard for them to understand the psychological impact of constantly hurting. I am not sure I even what them to undestand though – what I really want is for them to respect my experience.

Pain is so deeply stigmatized in Western culture. If you have chronic pain you are seen as weak, as just looking for drugs, as an addict, as someone who just can’t cope well. Expressing that you are in pain, even to a doctor, can be incredibly hard. Pulling out a pill bottel several times a day to take a narcotic pain medication, explaining what the medication is for, it isn’t easy. What I do not understand is why this is the case when pain is a universal experience. Everyone will experience pain that brings them to tears at some point in their life. Everyone will take tylenol or advil for pain at some point in their life. Why is my experience so difficult to digest for the average person? I wish I had that answer and I wish I knew how to challenge it better.

The reality is that I internalize it rather than challenging it. I take on the discomfort of others as my own. I waited a long time to complain about pain to my doctor. I spent months convincing myself to ask to increase my medication dose because of tolerance. By the time I was talking about it I was desperate and it took several weeks to get started on a new path. I have been suffering as a result of internalized ablism and accepting societal pressure to just “suck it up” and “deal with it” but in trying to do that, I lost the ability to function and thrive. I was robbed of a lot of experiences as a result.

I started on a new medication last week. It wasn’t one that I ever wanted to be on. When I started talking to my doctor about pain I was pretty clear that non-narcotic pain management is what I was after but that isn’t what was offered and I have been desperate. The new medication is working. It isn’t perfect and we need to mess around with dosing, but the last few days have been significantly better. I know I deserve that and it is okay for me to hurt less and be more functional. Part of me is holding out for it to be fixed though. I want the pain to be cured, not masked. That is what I have really been begging for from my doctor but I know it isn’t possible. I know she can’t cure it, and I know no one can. Accepting this pain managment and this pain medication is accepting that the pain itself can’t be cured and it will never go away.

Behcet’s Disease

Today I want to write two posts – one on hearing ear dogs and one on Behcet’s. I am going to start with the Behcet’s post though.

I first heard the term “Behcet’s Disease” about 4 years ago. I had been complaining about ulcers all over my mouth and I was sent to a dermatologist. She said she thought I may have something called Behcet’s disease but she didn’t say anything more. Fast forward 3 years and I had just gotten a new GP. I was explaining the ulcers and begging for something, anything, to help them. They hurt and made it difficult to eat, sleep, talk, etc. We tried a few more topical steroids but to no avail. I was sent to an ENT, with the intention of having her biopsy one of the ulcers to test it. When I went to her there weren’t any ulcers, but she said the same thing – she asked about Behcet’s disease and said that is maybe what I would have. My GP had also said that she though I have Behcet’s disease.

Fast forward to this summer and the GI stuff. Everyone decided at that point that it was Crohn’s disease and that explained it all. Until it didn’t. Then I was without diagnosis and Behcet’s was back to being hypothesized. I finally saw a rheumatologist for the first time who didn’t feel qualified to diagnose it but she was willing to continue to see me until it was determined and she sent me to the vasculitis specialist. On Friday I saw him and we went through everything, right from the beginning. He said I was the classic “Crohn’s VS. Behcet’s” case but given the order of the symptoms appearing and how they reacted to meds he was leaning towards Behcet’s. By the end of the appointment I was started on the basic med to treat Behcet’s disease, called colchicine. We also had a plan. In January I would check in with my GI doctor once more and see him again about a month later. At that time we would see how the colchicine is going and if I am tolerating it okay. Depending on what the GI said and where my blood work is at by then we would start me on other meds then if it was needed.

What does it mean? This is probably the most common question I get. Really, I don’t know. No one does. No one knows exactly how this disease will effect me. We don’t know if I will have eye involvement or if the GI involvement will continue or shift. We know I have had past GI events that weren’t caught in the moment based on my imaging studies. Does it mean I will continue to have GI issues? Most likely. I may end up with more joint involvement. I may end up with neuro involvement, or I may already have some – we aren’t sure. Basically the future is still uncertain. You would think I would feel scared, but I don’t. I feel relieved and validated because there is finally a name for what is going on. There is something to call it when I go into doctors appointments and there is a diagnosis to write on medical certificates for missed classes or exams. It isn’t “I have a mystery illness” anymore. Now I can name it. There is a lot of relief in that.

There will still be more doctors appointments and there will be more tests. If I can I want to write openly about what is happening and what I experience, because I think it is important. I think people need to de-stigmatize this stuff. I also really find getting information ahead of medical tests to be helpful in preparing for myself. I assume others do too.