I never really understood how someone could simply “feel pain” but not be able to identify where or describe what it felt like. A part of me always wondered how chronic pain felt, so the universe so generously bestowed it upon me. With that, I am taking this opportunity to do my best to explain what my chronic pain feels like, as an attempt to best describe my situation to my loved ones and to hopefully find a clearer way for you to explain your pain to your loved ones. So here are my 10 types of pain…
1. Musculoskeletal Pain
This pain is probably the most difficult for me to manage. Those with Sjögren’s, Fibromyalgia, Rheumatoid Arthritis, Lupus, and many other similar “collagen vascular diseases” may experience this pain. Musculoskeletal pain is felt in your bones, muscles, ligaments, tendons, and nerves, and can be widespread (whole body) or localized. As seen with fibromyalgia and why it’s a difficult disease for many to believe is “real”, it can be extremely hard to explain this kind of pain. My best description is a feeling of weakness mixed with burning muscles and tender ligaments/tendons, and any sort of slight movement flares a penetrating wave of paralyzing pain through the affected area. Musculoskeletal pain is the main source of my “painsomnia”, and can significantly affect people’s sleep patterns, increase fatigue and muscular atrophy, and contributes largely to depression and anxiety. My best way to combat this type of pain is mostly by utilizing braces to stabilize the affected area and prevent pain from movement, if possible. When the pain arises in my hips or legs, I have little to combat it and then I’m left with some serious pain and usually lots of tears…This can be the worst type of pain because not much, from medication to braces, really does anything to improve or delete this pain. Crying is definitely something I do, and maybe that will help for you too…
2. Hell’s Itch
Also known as Suicide Itch, this is officially the worst pain of my life, when I felt like I was going in and out of consciousness from the severity and the shock to my system. About 48 hours after a sunburn, when my skin is beginning to heal, my nerves can randomly start firing pain signals. And the pain is like no other. It starts as a basic itch, then magnifies within minutes into the feeling that millions of bugs are clawing their way out from under your skin. When Hell’s Itch hits its peak, I’m screaming bloody murder and tearing at my skin. I once called my husband while he was at work and just shrieked nonsensically into the phone, and he flew home to find out what warranted that wailing. Cue me running around the house, naked and sobbing.
Now, for me and a group of brilliant Internet bloggers with this shared heinous experience (disclaimer, this treatment is not necessarily “doctor-approved”), this pain can only be combatted by causing worse pain – essentially forcing your nerves to focus their attention on something else. I turn my shower to the hottest setting, and literally have to burn my skin. The pain of the scalding water trumps the nerve pain. While I am screaming viscerally from the burns on my skin, I am simultaneously relieved that the nerve pain has been dominated. Once the nerve pain calms down, I immediately apply diluted peppermint oil and a heating pad to the affected area. My husband told me once that he has never heard a human make the sounds that came out of me while I was experiencing Hell’s Itch. This has caused me to have a literal PTSD reaction to being out in the sun, and I refuse to be in the sun without sweating like a pig because I’m wearing a hat, long pants, and a long-sleeve shirt. I look like an idiot, but that pain is not something I choose to mess with. Days at the beach, barbecues, or eating lunch at an outdoor restaurant are all sources of extreme anxiety for me and activities I avoid without long and properly skin-covering attire.
3. Sensory Ganglionopathy
Fancy name, huh? This one comes in varying severities for me, but when it’s at its worst, it is truly and actually awful. Like, screaming and writhing in pain awful while my husband looks on in horror with no idea how to help me. Sensory ganglionopathy basically means that my body’s nerves are responding to normal stimuli in abnormal ways – with pain. For example, sometimes when I get into bed at night, the silky bed sheet feels excruciating when it touches a certain part of my leg. Sometimes I can’t wear a shirt because the skin around my ribs is so sensitive to touch that the softest cotton sends shock waves of pain through my system. And sometimes, a light breeze outside hits one of those areas of sensitivity, and I wince and have to get inside as soon as I can. When this flares up, showers are incredibly painful because the way the water hits my skin causes my nerves to react in pain, and my body is hit with needle pricks ALL. OVER. When it’s widespread needle prick pain, it feels like electric shocks or thousands of bugs are biting you over every inch of your body and you want to go out of your mind with insane pain and inability to stop the nerve override. When it’s localized, it feels like someone is holding a flame to your skin when the tender area is stimulated by water, a light breeze, a gentle touch, or a soft fabric. My husband can’t even touch me when this happens. Can you imagine a life where your husband is scared to touch you because he’s scared his touch will hurt you? This pain really messes with my head, and is one of the hardest to handle. The best physical relief is lidocaine patches, but the initial pain of placing them on that affected area is a penetrating shock that is truly excruciating.
Headaches and migraines most commonly come from disturbance to my nervous system. Headaches occur in 50-75% of Sjögren’s patients, and can be acute or chronic. Mine tend to be acute, but when they hit me, they hit hard. I have spurts of severe and debilitating migraines daily for 2 weeks straight where I can’t leave the house, all the blinds are drawn, I can’t speak above a whisper if at all, and I can’t open my eyes from the pain. I have gotten familiar with the symptoms of migraine onset, and I always get overwhelmed with anxiety when those feelings hit and I’m out in public. Caffeine can help quell a migraine once it hits, but prolonged caffeine use can be a factor in the development of migraines. The best care is a warm bath, darkness, silence, and sleep. Crying definitely makes this one worse…
5. Peripheral Neuropathy
Ah, neuropathy. This one is easy to describe for me – burning, tingling, and numbness in my hands and feet. And when I say burning, I mean BURNING. I am perpetually cold and hate feeling cold, but since developing neuropathy, I always want to be standing on cold floors and holding cold things. If I’m out at a restaurant, I wrap my hands around my ice water glass or I push my palms onto the window when I’m inside a cold car. The burning feet pain makes walking or standing extremely painful sometimes, especially that first time standing in the morning. If I wake up from the burning feet pain, which is most commonly my morning alarm, I have to psych myself up to stand up (which my husband can usually tell that I’m doing, so he comes in and helps me rise to my feet slowly). This hurts because imagine it feels like your feet are literally burned from touching fire, and then you have to put all of your body’s weight on them. I dread it every single morning. I work through this pain with medications (SNRI’s work oddly well for nerve pain, I am on duloxetine/Cymbalta), compression gloves for my hands (these are heavenly), compression socks and bands for my feet, and an electronic foot massager that helps to break up some of that nerve pain. Massage can be incredible for this type of pain.
6. Joint Pain
This one is so common in autoimmune diseases. Joint pain can have varying levels of pain depending on age, specific disease, etc. I have an elevated Rheumatoid Factor, which doesn’t guarantee a Rheumatoid Arthritis diagnosis, but suggests that my Sjögren’s may have more joint involvement than those without a positive RF. My joint pain is sudden and stabbing, and usually hits randomly. If it persists for longer than five minutes, as some of my joint pains cause acute shooting pains and then stop, I wrap my heating pad or an ice pack around the affected area. I also utilize braces if need be, such as shoulder braces or wrist braces to stabilize the joint and prevent further pain from movement or use. Naproxen can also help to decrease joint pain, and eating an anti-inflammatory diet works wonders.
7. Chest Pain
Pains that may send otherwise healthy people to the emergency room are pains that are relatively common for me, such as chest pain. I get this from lying in certain positions or from exercise. If I go on a three mile walk with my dogs, I can get chest tightness and pain for an entire week afterwards, usually worsened when breathing, coughing, laughing, or sneezing. This can be characterized as costochondritis or pleuritis, and is seen in Sjögren’s patients.
8. Sore Throat
I wake up every single morning feeling like I have strep throat and swallowing is extreme pain. On my worst morning, I have sugar free popsicles to numb my throat a bit to allow myself to swallow and hopefully eat breakfast. This it tough because it hurts to breathe through my mouth, speak, or swallow, and occurs every, single, day. This is caused from the dryness of Sjögren’s.
9. Chronic Dry Eye
This may seem just like a symptom, but it also carries pain with it. Chronic dry eye feels like air is blasting into my eyes at all times, and the feeling that something is scraping across my eyes every time I blink. In the mornings, the dryness of my eyes from Sjögren’s destruction of my lacrimal glands (the glands that produce tears) causes my eyelids to stick to my eye balls, and require careful placement of eye drops and slowly peeling my eyelids back. Otherwise, I can rip off the top layer of my cornea, something that is not uncommon in Sjögren’s patients when their eyelids are dried onto their eyes. Another concern with chronic dry eye is corneal ulcerations. Need I explain that pain? Dry eye can also bring about photosensitivity, aka sensitivity to light. I can’t go out into the world without sunglasses or I’m literally blinded by the light, and often need to draw the blinds inside the house on a sunny day. My first exposure to natural sunlight feels like the world is trying to slap my eyeballs.
10. Mouth Ulcers (Canker Sores)
Have you ever bitten the inside of your cheek so hard that it started bleeding, and then you just kept biting it over and over again by accident? Imagine waking up with that exposed welt inside your cheek, but you have 4 more and they all randomly popped up over night. My mouth ulcers used to get so bad that I couldn’t eat or speak for days from the pain inside my mouth. This can happen commonly in Sjögren’s due to the lack of saliva production. I have almost completely eradicated this pain by switching to toothpastes without SLS (sodium lauryl sulfate, a chemical found in common toothpaste brands and can cause these canker sores for those of us with dry mouth), such as Jason brand toothpaste. If I use a toothpaste with SLS in it, or have too much sugar one day, I will immediately wake up with canker sores the next day, for which I then employ a mouth-numbing oral gel intended for canker sores.
In the end, when I decide someone has earned the vulnerability of me divulging that I live with chronic pain, they often ask where and how I feel pain. Or if I say that I am in pain, I often receive the “where?” question. I’m sure this is something we are all familiar with, so I would love to hear what kinds of pain you are managing and if you have any remedies to share. To those who don’t experience chronic pain personally, please be patient with your loved ones who do. It’s not easy for us, but feeling supported, understood, and loved gives us power in our worst of days.