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The Side Effects of Chronic Pain No One Talks About

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It’s normal to talk about the side effects that everyone can see, but what about the side effects that aren’t seen? The ones nobody dare ask because they are afraid of the answer (and then wish they hadn’t asked the question).

Chronic pain is an invisible illness and this means hidden side effects.

Firstly, and sometimes obviously, is weight gain and loss. I’ve not met or spoken to one person with a chronic illness who’s happy with their weight. Let’s face it, few people are really happy with their weight, but having all these medications just to be able to survive one day takes a toll on your weight. Be it steroids, nerve pain drugs or even opioids, prolonged use can have a big effect. But because of our illness, exercise may barely exist, because let’s face it, if you can get out of bed one morning you’ve basically just climbed Everest. Enough said. But it’s a constant battle with medication and exercise, and certainly not a battle any of us are choosing to fight.

Mood. Mood swings are a given, for any human being, it’s what we do as human beings, but add in severe and debilitating pain and medication, and it’s like a ticking time bomb. Everyone has off days, but when your are in so much pain, the slightest thing can make you explode, and for no apparent reason. Certain medications I have taken in the past have made me rage at times, and not having control of your mood is scary. You can almost see it happen — this switch inside you clicks and boom, look out! But in the next breath, you can be so delightfully happy, almost delirious, you forget about the bad moods, until that switch goes “click.”

Patience. Given that most of your time is spent waiting on doctors, surgeons, and everyone else, you’d think patience was a given. No. I have less patience now than I ever did, but not in everything I do. I have less patience for faffing around, being downright rude, general BS and stress. Stress being the main factor of pain in my body, I try to avoid it at all costs – which in itself can be stressful (go figure!). Of course it doesn’t always work, and I will get myself worked up which then causes a massive crash, but I’m learning to deal with things a lot better. But if we all had a little more patience with someone we know who has an illness, the benefit to that person is better than any gift.

Mental Health. Of course, this is a big side effect and one that’s very easily hidden. Be mindful of the fact that that person has gone from being a healthy person, to having their life changed in an instant. It’s not an easy process, it never will be, you grieve every day for the person you once were, but how do you deal with the fact that that person has gone, and probably forever? Is it any wonder depression is a major side effect? Anxiety also comes in to play here, because not knowing how to deal with this “new” life is extremely new territory, and terrifying. Is it any wonder people can be anxious?

Lifestyle. What was once perhaps a carefree life where you did as you pleased has now resulted in a carefully managed routine, and is such a shock to the system. Imagine having a successful career and a happy/comfortable life (as comfortable as it can be!) and then all of a sudden you become chronically ill, not able to work or provide for your family, let alone yourself. Not able to function without help, or do the things you used to. All that taken away in the blink of an eye. The lifestyle you once had has been swapped for something that you struggle to control, let alone get used to.

Skin/Hair, etc. Now of course you can see skin (not all skin of course) and hair, nails, etc., but through medication, tiredness, and other factors, our skin and hair can take a beating, too. My skin has changed from relatively normal to extremely uber sensitive. If something even brushes past my skin, I have a reaction. My face is now full of spots, which come for a couple weeks holidays, then disappear, then re-visit like never before. Reactions to medications can cause terrible skin problems. Hair can also fall out at a quicker rate than it grows.

Intimacy. Not everything is about sex if you are in a relationship. There are of course plenty of other ways to be affectionate and loving with your partner. But what if having sex is painful and hurts you — should that put you off ever having sex again? Should people who have chronic pain/illness never have sex again? I don’t think so; just because we are in pain doesn’t mean we don’t have the same needs like any other person. It’s all about adapting and finding what works, and what doesn’t aggravate pain levels. Just have fun experimenting!

Finance. I’m broke, like all the time. The never-ending medications, the lotions and potions, treatments, travel to and from appointments, everything adds up. And if you can’t work it’s even harder. It’s a gift that will take pressure off. It’s very hard for me to admit I need help financially. I do not like asking anyone for money or help, but that’s something I need to work on — my own pride. Worrying about money only adds to stress, and stress makes things worse.

There are so many side effects — side effects that seem to be taboo. But why? None of the above points need to be hidden or not spoken about! To those who have a loved one with a chronic illness, all it takes is a friendly and supportive ear to be there for a person, and have some degree of understanding what that person has to deal with.

Look beyond what you can see, and search for what you can’t.

This blog was originally published on Chronically Composed: A Scottish Journey With Chronic Pain.

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Thinkstock photo by Andesign101

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To the Guy Who Disappeared After I Had a Bad Week With Pain

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Dating is hard. Everyone knows it. Except it’s even harder with chronic pain. But what’s perhaps the worst is when you open up to someone and let them in on the “real you,” only for them to disappear shortly after.

I have just recently experienced this, and it is something that must be shared. I recently met a guy who I seemed to have an instant spark and connection with. I’ll admit, it was something I hadn’t felt in so long that I was rather excited about it. Things that spark excitement are rare when you live with chronic pain, but the idea of a potential love…well, that really intrigued me.

He was charismatic and we seemed to get along so well; I really thought maybe I had met someone special. I had told him I have inflammatory arthritis and what came along with that. He seemed to not only accept it, but actually embrace it. After hearing my story, he said, “You are so strong, and you’ve been through so much… I really want to be the person who is next to you, who makes you feel better.” I thought, wow, he has said everything I could only hope a man would say to me. He even read some of my pieces on The Mighty and told me how “honored” he would be to have someone like me in his life. I believed I had met someone who “got me,” someone who I could finally show the real me to; yet I was so wrong.

 

Things were going great until I was having a stressful week with my pain. I was having a flare-up and was pretty down about it. Since he had made me feel so comfortable talking to him about anything, I thought I could open up and tell him about how hard my week was. He, on the other hand, said he was having a hard week at work. He kept complaining about work, and all I could think was how lucky he was to be in the position to be able to work. After all, it is a privilege to be able to work. To have a body that lets you put in long hours without paying the price of pain is something that should not be taken for granted.

So, here we were: one person who would do anything to be able to work, and another who was complaining that he had to go out for a work dinner – clearly not on the same page. However, despite the different pages, I tried to understand and sympathize with his stress. Yet, I did not receive this in return. We began to argue and I tried to explain how the stress of my week was affecting my mood. Instead of being supportive and understanding towards me, he got extremely cold and claimed I was acting aggressive towards him. He did not try and understand what was happening in my life and that maybe I wasn’t acting like myself because of the pain. In fact, he said, “Are you ever happy or just always sad and down?” I couldn’t believe it. I had been so happy and uplifting every time we spoke; I had one bad week and he couldn’t take it?

Shortly after that, I asked if we could meet and discuss things, but he wouldn’t. I remember telling him that the stress of the fighting and his coldness was not only hurting me emotionally, but really hurting me physically. When you have an autoimmune disease, stress makes pain a lot worse. Yet, this didn’t seem to change anything for him. He continued to refuse to get together and told me his feelings had changed. The guy literally did an entire 360. From acting like the most caring and thoughtful guy, he turned into ice. Needless to say, it shocked me. I didn’t think a couple of bad days could change feelings so fast.

I know some of you may be asking, why did I want to see him after he treated me like that? It’s a good question and I’m not sure I have the right answer for it. But, I will tell you when you have a chronic illness and you decide to let someone in and they appear to “accept” you, it hurts even more when they disappoint you. I didn’t want to let go so fast. I wanted to believe I had met someone who I could be honest and open with and they would stand with me (like he had said he would). But I was wrong.

In all, I believe it comes down to character. From dealing with chronic pain, I became a strong person. I am a person who has empathy and loyalty. I don’t give up on things, or people so fast. If I had, I would never be where I am today. The man who I am looking for is strong too, but gentle. He’s someone strong enough to stand in the storm with me, and gentle enough to hold my hand through it. And this guy is definitely not him.

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Thinkstock photo via AntonioGuillem.

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When Depending on Medication Makes You Feel 'Weak'

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Prior to becoming ill, I wasn’t what you’d call a big “fan” of medications.

Sure, I’d take a few over-the-counter pain meds for a headache, but generally speaking, I’d avoid medication if I could. “Better that the body be left to do what it does best,” was my motto.

This motto has become one of my unexpected battles since developing chronic illness.

Certain psychological aspects of chronic illness are well known in the CI lexicon: Mourning. Anger. Grief. Fear.

But for me, a newfound reliance on medication has been an additional emotional blow: Shame.

 

In my previous, healthy life, I took for granted that I’d get through each day taking nothing more than a multivitamin. Now, when I have to take my handful of powerful (and addictive) medications, I feel ashamed.

I feel ashamed because just a few years ago, I was very cautious not to take too many ibuprofen – now, I have to take scary medicines you hear about on the news. Medicines government agencies want to crack down on because they can be addictive. Medicines that, taken inappropriately (and even sometimes as the doctor prescribes), can kill you.

And now I need them to get through the day. I feel shame for taking these because, to the old, healthy me, these medicines are an admission of weakness – a mea culpa that I can’t “hack it” on my own. That I have somehow failed at being the tough-as-nails Superwoman I once thought myself to be.

Each dose feels like an acknowledgement that my body isn’t working correctly. That I am broken, and cannot be fixed. That I am somehow less than I was.

For what it’s worth, I recognize the shame I feel is but one of many difficult emotions with which I struggle each day. I am seeing a counselor to attempt to better battle the shame and the blame, as I realize they are detrimental to my overall fight.

It remains my hope that I will one day no longer need medication, but I am working, in the meantime, to see meds as part of my Warrior Armor instead of as an Achilles Heel.

It’s a slog.

A painful, terrible, daily slog.

But I will conquer this as I have conquered so much else, and I will do it in my own time.

Because I am a tough-as-nails Superwoman. And shame ain’t got nuthin’ on me!

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Thinkstock photo via Purestock.

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When Positivity Just Isn't a Priority During a Pain Flare

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Here I am at 4:14 a.m., still awake due to a flare. My joints are red and hot to touch. My muscles ache as if I’ve run a marathon. I have a migraine and no amount of Tums are helping my nausea.

Chronic illness sucks. Let’s just be honest. Everyone seems to want us to blither on about strength and positives, and yes, those things can be found amidst the chaos.

But sometimes I don’t want to find them. That may sound pessimistic, but when you’ve been awake for 20 hours from throbbing muscles and other symptoms, positivity isn’t a priority. Expressing yourself and self-care are. This sometimes means crying or laying on the couch all day. It differs from person to person.

For me it means watching romantic comedies and remembering I have a phenomenal fiancee who cares for me despite my moments like this. Moments where I want to give up. Or be someone else. Escape the body that has seemingly betrayed me.

However, as much as things seem dark now, I am reminded I will find light at the end of the tunnel again. Sure, this sucks and I want to scream and throw a tantrum any toddler would be proud of. But I will get through this. Even if it’s painful. Hang in there no matter what.

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Thinkstock photo via Lanka69.

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The Frustration of Being Unable to Put a Name to My Chronic Pain

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I had eagerly logged into my online patient portal to check for results of the MRI from a few days prior. I wanted so badly to find results which would lead to the name of my health problems. My heart sank when I saw the conclusion: nothing. Once again, on yet another test, I was a perfectly healthy individual, and yet, I know I am not a perfectly healthy individual.

I have dealt with chronic pain in various forms for several years now with a sudden escalation in the recent months. Where I had only had migraines and tension in my shoulders, I now have muscle weakness, chronic fatigue, hip and knee pain, difficulty walking, sensations like pins and needles up and down my arms and legs and more. I used to go on walks for an hour at a time, and at my worst, I could barely walk 100 feet. I have had blood work done, CAT scans, X-rays and recently the MRI that all show up as simply normal.

 

The frustration and feeling of helplessness to not know how to help myself came back with the latest results. I had gone into my MRI desperately hoping my journey to find an name would be at an end, but my expectations had been too high. Now I am not sure what step will even be taken next. More blood work? Spinal taps? I was fortunate enough to find a medication that helped with the pain and other symptoms after receiving countless medications which had no effect. However that medication is only a band-aid, not a solution.

I want to be able to put a name on my illness. A label to research online. A reason to tell others for my new physical limitations. A way for loved ones to understand me. Having a name for my condition doesn’t change anything about my physical state, but there is comfort in knowing what is happening to your body. Barely in my 20s, I struggle to come to terms with my new life after such a sharp decline in my health. Not knowing why my youthful body had betrayed me takes a huge toll on my emotional and mental health.

I am in pain every day. The pain shifts and the intensity varies, but from the time I wake up to the time my head hits the pillow my body aches. I have gotten used to always having a certain amount of pain and discomfort and honestly struggle to remember what it is like to not be in pain. My days have shifted from doing what I want, to doing everything I can before my body gives out. I try to count my small victories and applaud myself for doing little things that seem easy to everyone else.

I know I am not alone in my pain and frustration of not having a name for the day-to-day struggles I face. I try to remind myself that an answer will come eventually, and that I will be taken care of by my loved ones until then. According to Confucius, “It does not matter how slowly you go so long as you do not stop.” It may take years to find the name of the condition that has altered my life, but until then, I will hobble, sometimes literally, along, doing the best I can.

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14 Things That Helped Me Improve My Chronic Pain

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I had a period of time not long ago when pain dominated every aspect of my life. I had days when I could barely walk. To go from sitting to standing I had to have help and support otherwise I couldn’t get up. My family always had to be around to help me and make sure I was safe. But one year on and I still have flare-ups if ever I overdo it or have a bad night’s sleep, but it’s nothing in comparison to the pain I used to have.

It’s been a long battle, and one that requires a lot of discipline and courage even now, but it’s completely worth it. Although your pain may seem like an impossible battle right now, don’t lose hope. Take it one step at a time. Progress can be slow but just remember, you might be able to look back to this day a year from now and see just how far you’ve come, and be able to thank yourself for not giving up.

When you are in a lot of pain, it can have a severe impact on your quality of life. You might struggle to think of anything other than your pain and find it hard to enjoy day to day life. Managing your pain is something you probably dream of – you might not even be able to remember a time when you weren’t in pain! When it comes to managing pain, apart from drugs, there isn’t much advice out there as to what else you can do.

As someone who has chronic pain, I discovered some very simple but effective ways to help reduce my pain. Each person’s pain is different and individual to them, so what might work for you might not work for others – remember, it’s all trial and error. Where the majority of your pain is and what’s causing it will influence which things might help you. If your pain is variable, this may mean something that helps your pain one day might not be as effective another day, so keep returning to this page and try different things. All these tips are things you can start doing right now, but like taking your medication every day, doing these things regularly helps them work. Here are some tips on ways to manage your pain:

1. Compression socks – If you have poor circulation, spend a lot of time lying down, or have pain in your lower legs, I found that compression socks are worth investing in. Compression socks encourage blood flow to and from the legs and feet, which improves your circulation, and helps prevent conditions like blood pooling, swelling and venous conditions. They can also help soothe tired, aching and fatigued legs and make standing for long periods more comfortable (especially useful after the shower).

2. Stretches – When you stretch, you increase the blood flow to areas that have become stagnant (cease to flow or move), which can help alleviate pain. It can also increase your range of movement and oxygen flow, which helps the body to heal. It can not only help reduce your pain, it is also great for reducing stress levels and to helping you relax more. If you’re very tired and fatigued, only do stretches that you feel comfortable with. These might be stretches on the floor with your back supported with a pillow against the wall/sofa. You can get some stretching exercises from your physiotherapist or health professional. If this isn’t suitable or available to you, I recommend Elle Fit — these guides have a full variety of stretches from head to toe and you can pick and choose stretches to suit you.

3. Walking – If you have back pain, circulation problems, or stiff muscles and joints, walking can be very beneficial. It can increase strength and flexibility, reduce joint pain, and enhance your quality of life. Many people think exercise will aggravate your joint pain and stiffness, but that’s not necessarily the case. It can help keep your muscles and surrounding tissue strong which is crucial to maintaining support for your bones. If you have fatigue, make sure you only do what your energy levels allow – do you not overdo it. If you’re too tired to walk, I recommend trying to just focus on doing some gentle stretches instead.

4. Posture – If you have back pain, it’s important to make sure your posture is right. To help you, you might want to consider investing in a lower back support cushion, as this will help support your lower back and can help prevent further back pain. You can take the cushion everywhere with you – home, work, appointments, theater trips, car journeys or even on the airplane! There are lots of support cushions out there so find the best one for you, an example of the one I use is the Medipaq.

outdoor chair in backyard with back pillow

5. Hot water – If you’re someone who has stiff muscles in the morning, having a long hot shower can be a great way to help your muscles relax and loosen up. The heat from the hot water helps promote better blood flow and circulation.

6. Heat Pad – Another effective form of heat is through a heat pad. I love these transportable heat pads! You can use it on areas that are especially painful, such as your back, neck, shoulders and abdomen.

7. Epsom salt – Epsom salts are not actually salts but a naturally occurring pure mineral compound of magnesium and sulphate. Having an Epsom salt bath can ease pain and relieve inflammation, making it beneficial for the treatment of sore muscles and migraine headaches. The absorption of the magnesium also helps to produce serotonin, which creates a feeling of calm and relaxation. However, my advice is to make sure if you’re having a bath you have enough energy for it, because baths can be very exhausting if you have chronic fatigue and you need to make sure you can safely get out of the bath afterwards.

bathtub with epsom salts

8. Pacing – When you overdo it, even by the tiniest amount, your pain levels can shoot up. When this happens, it’s tempting to say, “I’ve over done it now so I may as well keep going,” but don’t! You can still save your pain and fatigue levels from going down even further. As soon as you feel the “over-doing” signs, I recommend immediately sitting down, putting your feet up and resting. Even if you’re in the middle of a task, remember you can finish it later — the severe pain and fatigue you will face tomorrow may not make it worth it. Pacing take a lot of discipline, but it’s vital to help keep the pain levels manageable.

9. Massage oils and massaging – Doing some very gentle massaging can help ease the pain and promote relaxation. You can massage yourself or get someone very close to you to do it, so if it does hurt you feel comfortable enough to tell them to stop. Just be very careful that it’s gentle and doesn’t then cause you further pain.

10. Meditation – Increasingly, psychologists are using meditation to help their patients cope with pain. Pain is only a sensation, albeit, a very unpleasant one. Meditation exercises can help to change your perception of that sensation and help reduce the pain.

11. Mindfulness – You may be surprised, but mindfulness can be very effective for pain relief. Many people try to push the pain out of their minds and try to avoid thinking about the pain, but this only makes it worse! When we try not to think about something we sometimes end up thinking about it more. For example, if you’re lying on the sofa focusing all your thoughts on your pain and how bad it is, you then might fall into a downward spiral of negative thoughts such as “my pain is so bad,” “what if it never goes away,” “what if I’m in pain forever.” These kinds of thoughts are unhelpful and only make your pain and situation worse.

So instead of thinking “my pain is so bad,” recognize these as thoughts of pain and instead think “I’m having feelings of pain.” By accepting and acknowledging your thoughts of pain, it can allow you to then move on and direct your attention back to the present moment. By mindfully accepting these thoughts it does not mean your pain will be any less, but I believe it allows you to spend more time and energy on living everyday life in the present rather than ruminating about your pain all day, which will help improve the quality of your life.

feet on stone path

12. Hydrotherapy – Doing hydrotherapy with a physiotherapist can work wonders! It can be amazing for your pain and is a lot gentler on the body doing exercise in water than on land. However, hydrotherapy is only something you can do if your fatigue is at a good level, so make sure you are well enough to do this otherwise it can be very damaging to conditions like myalgic encephalomyelitis

13. Sleep – Sleep is such an important aspect of managing pain, and many of you who do have pain probably struggle to sleep, as the two come hand-in-hand. It can become a vicious cycle — you can’t sleep so your pain becomes worse, then because your pain is worse it’s harder to sleep… Getting a good night sleep is so important for your mood and health.

14. Look after yourself – When you’re tired, hungry, sick or in pain, you’re more susceptible to strong negative thoughts and emotions. So, make sure you take care of your diet, eat nutritious meals, get enough sleep, and give yourself extra love and attention for those really bad and difficult days.

bedroom

Learning to manage your pain is a big learning curve, but over time things can improve. Don’t give up hope!

This blog was originally published on Mindfully Evie.

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