Tuesday, 18 July 2017

Chronically Painful: 10 Things You Should Know About My Pain

1. Pain, whether it's chronic or acute, is a personal, subjective experience. Everyone experiences pain differently. I find it difficult to answer the question: "How bad is your pain on a scale of one to ten?" Someone's number 6 may feel like someone's else's number 8. Many of us have seen the look of disbelief on our doctor's faces from time-to-time, when they think we're exaggerating our pain score for attention or to get pain meds.

Revised Pain Scale by Hyperbole and a Half 

2. My chronic pain is exactly what it is: chronic. However, some days it's more bearable; other days, I can't move without feeling like I'm being stabbed repeatedly with a blunt knife as I lay stiffened with agony in bed. We cannot predict when good or bad days may occur. So please don't be offended if I have to cancel our plans. When I'm having a "good" pain day, I will show up and be there, I promise.

3. When the pain is overwhelming, it's difficult for me to communicate or concentrate on conversations. I will forget what you've just said, or I will struggle to string a sentence together. The pain is distracting. Often, I will only reply with one word answers, or I will simply be unable to respond to you at all, with emails/texts/messages/calls going unanswered for a while. Please don't think that I'm being anti-social, or rude. When the pain is more bearable, I'll be more communicative.

4. My pain makes me short-tempered, impatient and irritable. On my worst days, it makes me really bitchy. Unfortunately, this has cost me some friends. When I'm like this, it is best not to engage with me. I'm best left alone until the pain eases or until I'm feeling less bitchy.

5. My pain can be debilitating and I'm often stuck indoors, in bed or on the couch. I may also struggle to climb the stairs, walk or move without your help. During these times, I need help from other people. I hate being dependent on others and so, I may try to push helpers away; I don't like being seen as weak, dependent and burdensome. It takes a lot of strength to swallow my pride and let people help me.

6. When my pain is at its worst, my senses are overstimulated: daylight streaming in through a crack in the curtains, the sound of a boiling kettle, a bite of food, or the smell of cleaning products becomes unbearable. Regardless of my pain levels, I am chronically light-sensitive and need to keep the curtains shut during the day. My neighbours probably think that I'm growing a pot farm inside...or that I'm a vampire.

7. If you ask how I am doing, I may answer with "I'm fine!" when I'm not really, or I may be brutally honest and tell you that I'm feeling like shit. Please don't be offended by my honesty. My pain is what it is.

8. If my pain requires me to seek medical assistance (e.g. breakthrough pain), I'm likely to be treated as a drug-abuser and given lifestyle advice, rather than the pain relief I need. Then there's the frequent lectures from pharmacists about the dangers of taking pain meds long-term. Also, don't expect me to be impressed if you say things like "Are you sure you need those meds? Can't you do yoga or something instead?" Just don't go there.

9. Chronic pain is isolating. It is poorly understood in the medical community and it's difficult to measure, as pain is a subjective. I can't expect you to understand my pain unless you step into my shoes. I can't expect anyone to understand my pain, because we all experience pain differently. The pain may take away our social lives, employment, studies, hobbies and anything else that involves people contact. Not being able to go about our everyday lives may isolate us from society.

10. It is the little things you do that are actually a big deal for me. Even little things, like bringing me a cup of coffee or fetching my blanket or taking me grocery shopping etc, will make a huge difference to me. When the pain is severe, I may find it difficult to express my gratitude. But please know that I am grateful for everything that you do for me. It means more to me than you'll ever know. Thank you.

Wednesday, 12 July 2017

Lupus and Anaemia


Last year, I was diagnosed with severe iron deficiency anaemia. It crept up on me slowly and quietly at first, and I slowly became even more tired than usual, short of breath, light-headed, dizzy and faint. I soon began to suffer with fierce palpitations that were sometimes so severe I thought I was going to die. I looked like a vampire movie damsel in distress: pale, drawn, half-dead and listless. All I did was sleep. Blood tests showed that I had anaemia of chronic disease (see below). I was put on strong iron pills, but as they did not work at first, my haemoglobin levels kept falling and I nearly needed blood transfusions.

I was sent for various tests: endoscopy, colonoscopy and ultrasounds. The tests revealed gastritis, a hiatus hernia and gallstones, but nothing that explained the anaemia. If I wasn't at a medical appointment, I was asleep in bed, too exhausted to lift my head some days. Eventually, the iron pills did start to work and my haemoglobin levels stopped falling, and for a while, I felt better. But recently, the beast started creeping up on me again. So the whole exhausting process of tests, medical appointments and seeing specialists begins again. I'm absolutely thrilled by this...NOT!

What is Anaemia?

Anaemia is a very common illness, affecting both lupies and non-lupies. It affects half of all patients with active lupus. Dr Michael Rosove, speaking to the LFA says that "anemia means too little haemoglobin. Haemoglobin is the protein inside red cells that carries oxygen from the lungs to all the tissues of the body."
Anemia is a condition in which a person has a lower than normal number of red blood cells or the amount of hemoglobin in the red blood cells drops below normal, which prevents the body’s cells from getting enough oxygen1.
Symptoms of Anaemia

Symptoms include fatigue, palpitations, breathlessness, dizziness, fainting, pale skin, headaches and rarer symptoms such as tinnitus, sore tongue, itching, spoon-shaped nails, pica and ulcers2. Frustratingly, many of those symptoms are the same as those in lupus, so it may take a while before the anaemia is diagnosed.

Causes of Anaemia in Lupus Patients

There are several causes of anaemia in lupus patients:
  • Inflammation
  • Inadequate erythropoietin, a hormone produced by the kidneys, that stimulates the marrow to make more red cells
  • Iron deficiency: Iron is necessary for the production of hemoglobin. Iron (as part of the protein hemoglobin) carries oxygen from the lungs throughout the body. Iron deficiency also may result from menstrual bleeding or from intestinal bleeding due to non-steroidal anti-inflammatory drugs.
  • Loss of bone marrow caused by certain drugs used to treat lupus (such as azathioprine or cyclophosphamide)

How is Anaemia Diagnosed?

A complete blood count (CBC) is used to check for anaemia; plus your doctor may order the following blood tests:

  • Haemoglobin levels 
  • Red blood cell count (RBC) 
  • Reticulocyte count
  • Serum ferritin level
  • Serum iron level

Anaemia of Chronic Disease (ACD)

This is an anaemia that occurs with chronic illnesses, inflammatory disorders, cancer, infections and other illnesses. "Inflammatory and chronic diseases interfere with the body's ability to use stored iron and absorb iron from the diet."2

Anemia of inflammation and chronic disease is caused by red blood cells not functioning normally, so they cannot absorb and use iron efficiently. In addition, the body cannot respond normally to erythropoietin (EPO), a hormone made by the kidneys that stimulates bone marrow to produce red blood cells. Over time, this abnormal functioning causes a lower than normal number of red blood cells in the body. Some of the chronic diseases that lead to ACD include infectious and inflammatory diseases, kidney disease, and cancer. Certain treatments for chronic diseases may also impair red blood cell production and contribute to ACD.3

People with lupus and similar illnesses are often diagnosed with "anemia of chronic disease", if all other causes (e.g. poor nutrition, gastrointestinal bleeding etc) of the anaemia has been ruled out. This type of anemia develops slowly. Doctors treat the illness by dealing with the underlying disorder (e.g. lupus, rheumatoid arthritis, infections etc). If the disorder doesn't respond to treatment, drugs that stimulate the bone marrow to produce red blood cells may be given. If the anaemia becomes severe, blood transfusions may be recommended.4

Treatment of Anaemia

Depending on the severity, cause and type of the anaemia, treatments may involve dietary changes, iron supplements, iron injections, B12 supplementation, folic acid, erythropoietin injections and in some cases, blood transfusions. Bupa says that "Your GP or specialist will always treat the underlying cause of your anaemia [such as lupus] before considering a blood transfusion."