Finding The Good In Life – Stacey’s Spoonie Story.

Hello, my name is Stacey Moisant and I am chronically ill. My story began about 35 years ago when I was diagnosed with Diabetes Type I. I was sent to a hospital locally and for 2 weeks. I was taught how to take insulin multiple times per day and how to eat by measuring out my food; back then it was a ½ cup of this, 4 ounces of this, a small handful of that. I have since learned how to carb count and have been on an insulin pump for almost 20 years.

Diagnosis After Diagnosis

Then around 13 years of age, I began falling and having issues with both of my knees swelling terribly and being very painful. After four surgeries I was diagnosed with a “rare” form of Rheumatoid arthritis. I call it “rare” because it doesn’t show up in any of my blood work it only shows up in the fluid surrounding my knees. After multiple physicians telling me nothing was wrong or I no longer had rheumatoid arthritis I finally found a doctor who ran a test called Vectra DS which shows how severe my condition was.  The results came back zero to 29 is low severity, 30-44 is moderate and 45 to 100 is high; mine came back as 52. My joints had already began to disfigure so my new physician started me on Humira. My hopes are that my joints stop moving and my pain decreases.

In the midst of trying to find a doctor to believe me about the rheumatoid arthritis, I started having severe abdominal swelling, I couldn’t eat without throwing up and in a great deal of pain. I was diagnosed with Gastroparesis. On top of being Diabetic, I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

I had to learn what I could and couldn’t eat with this disorder. Pasta, pizza, potatoes, you know all the good stuff, was now off limits or at least limited … do I want to hurt, is that food worth the pain? Sometimes the answer is yes and sometimes it’s no.

A few years went by with no new symptoms, no new diagnoses, just living day to day. I woke up and my husband and I decided to go to the grocery store and I had a twinge of pain in my right back but really didn’t think much about it until half way through our shopping trip I doubled over in pain. We rushed home, I just wanted to lie down for a little while and see if it would subside. By this time my pain tolerance was very high and what use to by a 10 was now about a 6, so I lay down and about ten minutes later I rushed to the bathroom thinking I had to urinate and nothing, just more pain. I got my husband and he rushed me to the hospital to find out I had papillary necrosis in my right kidney. After about 15 surgeries to fix this, I am happy to report I have no further issues with my kidneys. They are hanging in there for the long haul.

At this time, I am now around 37 years old and I believe that my gastroparesis is acting up and I go to see my doctor after being in the ER due to vomiting and nausea etc. He took a CT scan and decides he needs to do a procedure to go in and look at my stomach and pancreas, the procedure is called an ERCP (endoscopic retrograde cholangiopancreatography). After my first ERCP I was diagnosed with a Sphincter of Oddi dysfunction and had to have a stent placed to keep that area from swelling shut. Then, I had to have another and another and another. One of the side effects of this procedure is pancreatitis and after the second procedure I again doubled over with pain and was rushed to the ER to find out I indeed had pancreatitis. Now you talk about pain but until you have experienced pancreatitis you have no idea what pain is. I thought I was dying. Due to the pancreatitis I have had multiple ERCP’s, 3 GJ tube placements, multiple hospitalizations and countless doctor visits. My GI doctor and I feel like family. He is an amazing man who has kept me alive for 11 years now.

Keep Living, Keep Moving & Finding Joy

I worked in the medical field for years; working at our local children’s hospital helping children to realize that yes they are sick and uniquely different, nevertheless you keep moving, keep living, keep finding joy in life and “if there is a will there is a way”. I have since been deemed disabled but I still make it one of my missions that with all of the above diagnoses and along with multiple others like hidradenitis, cellulitis, Morton’s neuroma, dyshidrotic eczema, GERD, fibromyalgia, high cholesterol, thyroid disorder, obstructive and central sleep apnea, obsessive compulsive disorder, depression and anxiety to name a few I can still get out of bed and live a productive life taking care of myself and my family.

truly believes that because I am chronically ill doesn’t mean I can’t find good things in life

I am now 46 year old and truly believes that because I am chronically ill doesn’t mean I can’t find good things in life. I keep myself busy with crafts and pen addictions and taking care of my ailing parents. I try to do everything with a smile on my face and love in my heart. I have one child in which we adopted at the age of 3 now going on 20 years old. She is my greatest achievement in life. I never thought I would have children or be able to raise I child due to all of the pain that I go through on a daily basis but with God’s help and direction I keep moving forward.

Check out Stacey’s instagram to follow her chronic illness journey.

The Guilt of Being a Parent and Chronically Ill

The Guilt of Being a Parent and Chronically Ill

Trigger warning: loss and miscarriage

A little back story, I was diagnosed with 3 chronic illnesses (rheumatoid arthritis, fibromyalgia, and lupus) when I was 17 and then after a car accident, they were in back to back flares and fighting which day they would “one-up” each other.

I tried to run off my husband by scaring him away by describing in detail the “horrors” of being a caretaker to me would be. He stuck it through with me and we got married August 8, 2014. Soon after, he had asked me to talk to my doctors about the possibility of getting pregnant. After making multiple appointments and talking with every doctor and specialist, we got the green light to actually try to get pregnant.

The start of my guilt of being a parent kicked in and never left.

I struggled with accepting that I could get pregnant after being told no for so many years. I wanted to try though since my husband was so excited. On February 14, 2015, we had our first miscarriage. The start of it as a telltale sign that it was going to happen was that my lupus flared up and I just could tell something wasn’t right.

The guilt set in fast and hard that my child didn’t survive because of my body, because of my chronically ill body. I spiraled into a depression where everything made me cry. Cat crossing the street, tears, a child laughing on the tv show, tears, husband made dinner like he did every night, tears. My lupus flare ended when I had a second miscarriage on November 18, 2015; the day before my husband’s birthday and the day I was going to surprise him with the news. I didn’t want to keep trying after that since my emotions and guilt just kept getting worse.

The summer of 2016, I was looking at puppies as a prospective service dog to replace my service dog since she was getting old. I picked up the puppy in September, and a few short weeks later I found out I was pregnant again. I was so afraid to tell my husband, let alone get excited for any check up because of being afraid. Fast forward to June 20, 2017, I had our adorable daughter, I will call “R”, at 10:16 am. My husband was ecstatic and I was reserved and quiet. I struggled with holding her and bonding because I felt guilty.

I felt guilty for a lot of things

1. R survived, but my body failed me twice and I couldn’t stop thinking about the two I lost and what they would have been like.

2. I kept thinking about how R’s life will be different because I, her mom, is disabled.

3. I couldn’t stop thinking about how much of a burden it was going to be on my husband because my chronic illnesses/disabilities are unpredictable.

4. Feeling like a failure as a mom already because I cannot be a normal parent.

Having a child and dealing with guilt while chronically ill

It took about 6 weeks after R was born before I was willing to start trying to bond with her. I had the guilt from that because I knew that the early stages of bonding were beneficial. On top of that, I was returning to work towards the last week of August.

I struggled with every milestone she made, whether it was early or not, and then questioned whether it was because I was disabled that she would develop them early. I struggled when she started playing and growing up “too fast” in my mind because I knew that my chronic illnesses were causing me to miss some of what she was learning and growing.

A happy surprise!

I got pregnant with our second daughter around R’s first birthday, this one was a surprise to us, but we knew we would love her. During my pregnancy, I had the guilt of missing milestones for R because of me being extra tired and exhausted. It hurt to tell R over and over again that “mommy is struggling today and can’t hold you/play with you/read to you”. When I was getting closer to having our second daughter I cried over having to leave R with my dad while my husband, my mom, and I were in the hospital. I was taking away her playmate (my new service dog) and her regular babysitter (my mom).

My guilt was at an all-time high after I gave birth to our second daughter, February 14, 2019, I’ll call her “W”. I knew I was turning R’s world upside down and “forcing” her to have to learn what all was going on and have to share her precious mommy time with another one. Trying to split time evenly is hard, especially since my rheumatoid arthritis flared up right after I gave birth.

As I have been slowly recovering from giving birth, I have been slowly getting accustomed to two children, and having to learn to ask for help a lot more. This guilt will continue throughout my daughters growing up and I will have to cope with it.

I will need to breathe through their difficult questions as they grow up and realize just how different their mom is compared to their friend’s parents. I will also have to deal with the guilt that I am adding/putting more stress upon my husband with having to help raise our daughters and having to step into the caregiver role from time to time and more often as my chronic illnesses/disabilities progress.

I have realized that my guilt will come in waves and I will have to deal with them as they come. It is just like the stages of grieving that I have gone through and continue to go through as my chronic illnesses/disabilities progress. It is hard to reach out and talk to others about life, but I have learned to find someone to talk to that I can trust.

The Guilt of Being a Parent and Chronically Ill

Now it’s time for me to spend a little time with W (only 12 days old) and pray that R (20 months old) doesn’t wake up calling me.

About the Author

The Search For An Answer, a short story

waiting for diagnosis

Adrian looked around the waiting room, noting that he was easily the youngest person there. Most of the people sitting in the room were easily a decade older than him, probably more, and that all of them were women. This made him embarrassed. He knew that most people seeing a rheumatologist were women and probably older, but seeing it in person was different.

Feeling uneasy while waiting

            Adrian tried to ignore his embarrassment by looking at the decorations on the wall, which was all still life photographs. He had to suppress a snort, of course that’s what was on the walls. Just like every doctors office, there has to be boring, framed photos of nothing interesting.

            “Adrian Thompson,” the nurse called.

            Standing up slowly, Adrian followed the nurse to the exam room in the back. Even as he followed her, he couldn’t keep up and had to walk significantly slower than her because the pain in his joints was so bad. He immediately sat down in the lone chair in the corner when he reached the room, ignoring the exam table.

            “What brings you in today?” the nurse asked.

            “I’ve been having pain and swelling in my joints, muscle pain, fatigue, and stiffness when I wake up in the morning or if I move after I’ve stayed in the same position for too long” Adrian replied.

            She wrote everything down, looked at him quizzically, and said the doctor would see him soon. Adrian looked around the room after she left. He noted several arthritis posters, a osteoporosis poster, and some three dimensional models of joints on the counter.

The doctor

            30 minutes later, the rheumatologist, Dr. Erikson, entered the room. He read the notes that the nurse had made and asked what brought him in. Adrian repeated exactly the same thing he had said to the nurse.

            “Hop onto the exam table,” he said.

            Adrian flinched several times when Dr. Erikson pressed on points that hurt, then ordered some blood tests and offered to prescribe him painkillers for the intervening days until he saw him again.

            “No, thank you,” Adrian said, “I am an addict in recovery, I have 60 days clean and sober today, and I don’t want to risk going back into active addiction.”

            “Good for you getting sober,” Dr. Erikson said. And with that, he left the room, telling Adrian to make another appointment in 30 days.

Second appointment

            The following 30 days were agonizingly painful and long. Adrian desperately wanted to know what was wrong, because something was obviously wrong. The constant pain was something he didn’t think he’d ever get used to, almost worse than the pain was the fatigue that was making it hard to be a functional human being. Adrian could barely remember what it felt like to wake up feeling rested.

            Returning to the doctor’s office, Adrian waited an hour just in the waiting room just to wait another hour in the exam room. When Dr. Erikson finally, finally, showed up, Adrian became hopeful that he might finally have an answer. He was disappointed.

            “All your labs came back negative, there is nothing physically wrong with you,” Dr. Erikson told him.

            “So what happens now?” asked Adrian.

            “Here is the business card of a good psychiatrist in the area. I’d recommend talking to her and getting on the proper medication” the doctor told him.

            Adrian was so upset he couldn’t speak. Even a doctor, the best rheumatologist in a 50 mile radius, thought he was making up the pain and various symptoms he was experiencing. Adrian numbly walked out of the office and got into his car. When he closed the car door, he finally broke down. He wasn’t crazy, was he? He didn’t think so. But either way, he pulled out the psychiatrist’s card and made an appointment.

Continuing the search for awnsers

            Over the next year, Adrian searched for an answer. He saw the psychiatrist, who referred him to a therapist and a different rheumatologist, that rheumatologist referred him to a different psychiatrist, who told him to see another rheumatologist. He didn’t have anyone actually believe he was actually in pain until he finally gave up on specialists and saw his general practitioner.

            Adrian told his general practitioner his symptoms, telling him about all the struggles to find an answer, and he watched the doctor’s eyes light up. Adrian knew then that he finally found a doctor who completely believed him, and he was ecstatic.

            “Here’s an order for more blood tests and an order for getting your hands and feet x-rayed,” Dr. Johnson said, handing Adrian the stated orders, “Come back in two weeks and we’ll review the results.”

waiting for diagnosis
U.S. Army Spc. Juan Hernandez, Jr., McDonald Army Medical Center U.S. Army Medical Activity medical laboratory technician, draws a blood sample from a patient at Joint Base Langley-Eustis, Va., June 26, 2017. The JBLE lab technicians perform over a million tests annually and study the hematology, coagulation, chemistry and microbiology of the samples. (U.S. Air Force photo/Staff Sgt. Teresa J. Cleveland)

            Adrian immediately went to get his blood drawn, and two weeks later he was back at the office, eagerly awaiting the results.

The results

            “Adrian Thompson,” the nurse called. Adrian got up and followed the nurse into the exam room, and 20 minutes later Dr. Johnson came in.

            He spent five minutes looking at the results from Adrian’s tests, and then looked at Adrian.

            “I know what’s wrong,” Dr. Johnson told Adrian.

            “What?” Adrian asked eager to finally have an answer.

            “I have two diagnoses for you. The first is about the joint pain. You have no markers for it, but you have what’s called seronegative rheumatoid arthritis, based on the high amount of inflammation and the damage to the joints in your hands and feet. The second is related to the muscle pain, and there’s no specific test for this, but I believe you also have fibromyalgia.”

            Those were exactly what Adrian thought he had from his research, but having confirmation was both a relief and a weight on his shoulders.

            “So where do we go from here?” asked Adrian.

            “I will give you a copy of the results and write a diagnosis on a prescription pad, and I’ll give you a card for a rheumatologist. He will know better on what medications to put you on, but I’ll give you a couple of things to treat the conditions while you wait to see the rheumatologist.”

Finally getting a diagnosis

            Adrian went home in a daze. As soon as he got home he called and made an appointment with the recommended rheumatologist. With that done, Adrian got back into his car and began the hour and a half drive to the beach, the place that always seemed to calm him. Since it was still winter and he was in Washington, Adrian made sure to take a heavy coat with him. He tried not to think much on the drive, and to appreciate the beauty of the forest around him.

            When he reached the beach, he put on the coat and began to walk along to beach right on the edge where the forest ended and the beach began. The beauty of the place, with the rock cliffs in the middle of the ocean that somehow had trees on top the constant green of the forest, and the drift wood that had washed up on shore. This place always brought Adrian a sense of calm. Adrian got to be alone with his thoughts since it was nearly deserted because it was no longer tourist season.

finally diagnosed

As Adrian walked, he thought about how much his life would change because of the two diagnoses he was just given. He didn’t know if he would be able to continue to work at his goals, if he would be able to work as a nurse like he was studying for. He didn’t know if he could continue to live in this beautiful area, because the weather always hurt his joints. But most of all, Adrian thought about how scared he was about the future. He knew what advanced rheumatoid arthritis could do to joints.  He had seen the pictures online. Adrian even let out a couple tears as rain began to fall, counting on the rain to hide his tears from anyone who might look at him.

            Adrian knew his life was about to change, and as he got back into his car to begin his drive home, he tried to just be grateful to finally have an answer after over a year of searching and allow the future to turn out however it’s meant to.

Chris Thoman is a 23 years old, college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. Follow him on Instagram

Pain Awareness Month: Why Does It Matter?

Learn about chronic pain during Pain Awareness Month at The Unchargeables.

When the editors at The Unchargeables asked for someone to do an article on pain for Pain Awareness Month, which is recognized during the month of September, I jumped at the chance. Pain is something I am a living expert on and I thought I’d have no trouble at all writing an article all about it. Then, somewhat ironically, a flare up of my Rheumatoid Arthritis (RA) set in and the very thing I was supposed to be writing about caused huge writer’s block and left me too exhausted to put fingers to keys.

“Show People What It’s Really Like”

The past three weeks I’ve been so unwell that I’ve barely left the house, which means nothing very exciting has happened. This stumped me because while I wanted the article I wrote on pain to be informative and raise awareness, I had also hoped to keep it relatively positive. In my writing about life with chronic illness, I aim to instill hope and keep a positive focus; so being stuck in bed, not feeling very positive and with not a lot to say, I wondered what on earth I should write about. I spoke to my brother about this frustration and I had to laugh when he responded with, “Rachel, it’s ‘Pain Awareness Month’, not ‘talk crap’ month. Show people what it’s really like”.

Learn about chronic pain during Pain Awareness Month at The Unchargeables.He was right; this month is to raise awareness. Anyone already living with a chronic illness likely knows what living with pain is like. The purpose of this month is to show people who don’t know what it is really like and raise awareness by doing so. The purpose of this month isn’t to say, “Life is hard with pain, but it’s all sunshine and roses really.” That just isn’t true. So, as I write this from bed, with splints on both wrists, dosed up on painkillers, trying not to be infuriated that every position I sit in is so uncomfortable I wish someone would just knock me out, I’m going to share with you what my life can be like behind the doors I normally choose to close.

Trying to Be Positive About Pain

I’m a pretty positive person; I refuse to believe life is bad just because I got ill. I try not to let my illness stop me from being me and doing the things I love with the people I love. You’re more likely to see photos of me on social media out having fun than curled up in bed.

The thing is, I do spend a lot of time unable to do things I love. In fact, I even spend a lot of time unable to do things I don’t love like housework, washing and food shopping. One fun thing, or even one stupid day-to-day task can leave me bed bound. Pain and fatigue go hand in hand and being in pain all the time is absolutely exhausting. When pain takes over I hide from the world, not because I’m ashamed, but because who is interested in seeing or hearing about that? The reality is, people would probably be a lot more understanding if they did see and hear about that side of it. Being super positive all the time is not a bad thing, but when raising awareness, we have to share what living with pain is really like, not some Instagram-filtered version of it.

Imagine Living with Pain Every Single Day

I live with pain every single day. That is hard to comprehend unless you do, too. Before RA I couldn’t ever have imagined what this was like. Take a second and just imagine how your life would be impacted if you were in pain every single day, constantly.

There is no cure. You now have to live with pain all the time and you have to continue to function and live your life. Some days you may have pain levels of two or three out of ten on the pain scale; some days you will have pain that is a ten. Those are the days you will scream, cry and desperately long for something to make it stop.

The other days of moderate pain you must function as usual. Imagine how that would have changed the day you had today? Would you have showered? Would you have applied makeup? Would you have gone to work or called in sick? Would you have cooked tea? Tidied or cleaned the house? Picked the kids up from school? Done the shopping? People living with chronic pain must keep going and have to do all these things. Imagine how exhausting and difficult that would be.

Learn about what chronic pain is like during Pain Awareness Month at The Unchargeables.Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep? You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep; welcome to painsomnia.

Now imagine a few months go by of this daily pain. How tidy and clean is your house? How many sick days have you had? How many social events have you missed? How many times have you eaten takeaway instead of a cooked meal? How many days have you managed to shower or get dressed? How many people have grown frustrated with you? How many friends have stopped calling to check on you? How many times has someone questioned if it’s really that bad or asked if you’re “better” yet? You can’t get better, there is no cure. How do you feel about the future now? How do you feel about facing a life of pain knowing how much it’s already changed your life in a few short months?

The Reality of Living with Pain

This is the reality of living with pain, and it isn’t pretty. The last three weeks I have managed to shower an average of every three days. I used to shower daily. I’ve worn makeup twice. I used to wear it daily. I’ve had to choose between preparing lunch or walking the dog, unable to do both. I’ve had to choose between brushing my teeth or brushing my hair, between changing the bed or changing my pyjamas. I’ve had to sit down to shower, I’ve had to lie down on the sofa after simply walking down the stairs, I’ve had to take a nap between getting dressed and getting a coffee.

Learn about chronic pain during Pain Awareness Month at The Unchargeables.The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion.

When Pain Causes Judgement

I recently went shopping with a good friend, who pushed me in my wheelchair because getting ready to go out had left me too exhausted and in pain to walk. While waiting for her to arrive at the shops a man walked past my car, parked in a disabled spot and glared at me. He literally glared at me the entire time he walked around my car. It was obvious he wasn’t sure I should be in that spot, even with my badge on display…and a wheelchair in the boot.

Makeup hides a lot, but it didn’t hide the tears that came from his judgement. Every day people living with pain encounter judgement and discrimination and that isn’t okay. You cannot see if someone has a disability or chronic illness by simply looking at them; they aren’t always visible. A comment of judgement, or even frustration, from someone who doesn’t know what it’s like to live with chronic pain can do so much damage. We need to be a little kinder to each other and show compassion.

Adapt and Try to Be Positive

The thing about pain is that you can manage it, but even with the best medicine, treatments and therapies in the world, there isn’t a cure for most chronic illnesses or the pain that accompanies them. You learn to adapt and live with it, and you don’t let it stop you living the best life you possibly can, but it does change your life. I refuse to be beaten by it and I refuse to dwell in the darkness that clouds me on the worst days. I have moments where I’m overtaken by negative thoughts and a sense of hopelessness, but I have learned how to pull myself out of that. I remain positive and focus on the good in each day, even if the good is that I simply survived that day.

However, being positive doesn’t mean reality should be hidden and to raise awareness we have to get real. You can share the reality of pain without letting a negative attitude consume you. I encourage you to speak to people about what it’s like to live with pain, and be real with them, whilst also keeping a positive attitude. Hopefully it will start some really important conversations and make for a future where people are a little kinder to each other.

Reach Out

Learn about chronic pain during Pain Awareness Month at The Unchargeables.If you know someone who lives with pain, I encourage you to ask them about it; you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the loneliness that can often come with a chronic illness.

If you are living with pain, then please know you are an absolute warrior, a champion and you are so much stronger than you realise. Don’t be afraid to share your story and don’t be afraid to admit when things are rough. You deserve support, love and compassion. I know some days it can feel hopeless, and I know some days it can feel like you’ve lost everything, but please know you aren’t alone and everything you are is more than enough. If anyone tells you otherwise, it is their issue, not yours. Keep going, keep fighting and keep shining a light during Pain Awareness Month, and beyond.

About the Author:

Rachel writes about Pain Awareness Month at The Unchargeables.Rachel is a 29-year-old Chronic Illness blogger at, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.

A Comedy of Errors: When Doctors Doubt Their Patients

Don’t be afraid to confront a doctor if they doubt you.

When’s the last time you were really honest with your doctors? Never? That used to be me.

Anyone with any type of chronic pain knows that there are better days, bad days, and the worst days. If you battle chronic pain, I’m also betting you minimise it to those around you. You put on a brave face and don’t reach out for medical support anywhere near as often as you should.

I’m very much the same. I rarely reach out to my team of medical professionals unless I really, really need to. This is partly because of numerous negative experiences in the past and partly because I don’t want to be a bother. However, a month ago I went from feeling as well as I ever will be, my version of normal, to feeling worryingly unwell in just a matter of hours.

A Flare-Up Like No Other

Not a lot scares me when it comes to my health. To my husband’s frustration, I continue to minimise even the severe symptoms and won’t admit when it’s getting to be more than I can handle. However, on this day I was genuinely scared by this sudden onset of pain in my ankles (later spreading to other joints). This, and the other symptoms that I had, felt like no other flare up I’d ever experienced. So I reached out to my GP, but failed to get past a particularly obstructive receptionist. I didn’t have the energy for a battle, so I accepted her dismissal and ended the phone call.

When doctors doubt their patients, it can make you feel helpless.Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.

A short time later I had become utterly consumed by the pain and was genuinely becoming very concerned. I called an out of hours service who wanted me seen immediately, given that I have a disease which means my immune system isn’t working. I’m also on a lot of complex medications which can cause issues of their own (as well as suppress my immune system). It turned out theirs was the right call. I ended up in hospital for a week while the doctors tried to get my pain back under control and work out what on earth had happened to cause such a rapid decline in my health.

Never Was A Story Of More Woe?

Before I share what happened next, I wanted to just pause to share the purpose of this article. Now I know you may be thinking this is a tale of woe and misery. But it does have a positive ending. I’ve chosen this experience to write about because it’s one I come across time and time again in the chronic illness community. I hope to encourage you to speak out the next time it happens to you…in whatever form it may take.

So, there I am stuck in hospital, exhausted but in too much pain to sleep. I was trusting the medical professionals around me to care for me and get to the bottom of what was going on.

Issue #1: You Can’t Still Be in Pain!

It is a terrible experience when medical professionals doubt your pain.The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.

Issue #2: Oops…

The second issue that cropped up was that the hospital delayed contacting my rheumatologist, despite my numerous requests because I knew he would know what to do. When they did eventually contact him and get his recommendation, which was steroid injections to try and get the inflammation causing the pain under control, they accidentally administered the injections twice! Thankfully it did me no harm, but it was far from reassuring.

Issue #3: A Ridiculous Diagnosis

Doctors can doubt a patient’s diagnosis due to ignorance.The third, and perhaps most important issue, was when a junior doctor decided I didn’t have Rheumatoid Arthritis. Unknown to me at the time, she had checked my bloods. (My blood tests are different from many of those with RA because I am seronegative). Despite there being a wealth of information on file from my specialists, she decided she would interpret my bloods with no experience of autoimmune or inflammatory disease. She concluded that I didn’t have Rheumatoid Arthritis at all. What she did conclude was I must have simultaneously broken both ankles without realising. Go ahead, you can laugh. I did when I later found out because it was so utterly ridiculous. However, many of you with a chronic illness will know this type of experience is not unusual, which is no laughing matter.

At the time this junior doctor was “treating me,” I had no idea about any of the above. She lied and told me the Rheumatology department had requested x-rays of my ankles. I went along with this because it wasn’t unreasonable. I had the x-rays despite crying with pain trying to bend my feet into the correct position for the radiologist. The doctor later made a passing comment that my x-rays showed I hadn’t broken my ankles, which I thought was odd, but was too exhausted to think more about it.

The search for the cause of this crazy pain continued. Eventually I got so fed up, I called my rheumatologist from my hospital bed and got an emergency appointment with him the following day. It was only as I was being discharged that following day that a doctor came to apologise to me. I had no idea why she was apologising until she explained the junior doctor who requested the x-rays had been reprimanded for requesting them and for jumping to incorrect conclusions about my diagnosis.

Speaking Up

Normally, I would have smiled and said it was fine and let it go, because I have the utmost respect for medical staff. They have an incredibly challenging job, and I understand all doctors must learn and knowledge comes with experience. But this time something stopped me, and I called the doctor back and asked if I could speak with her. I spoke more calmly than I felt when I told her that the care I had received in her hospital was well below the standard I expected. I highlighted several issues (some not included in this article) that I was unhappy with.

Speak up if you feel a doctor is doubting you!Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.

My rheumatologist worked out that the reason for me being so poorly was an infection, which had also caused a drop in my temperature and issues in my liver. The hospital had all this information, but because there wasn’t an obvious cause, it seemed easier to see me as a hypochondriac.

Your Voice Matters!

The point of writing this article was because I know so many of us with invisible or chronic illnesses regularly face doubt from so many people. It is incredibly hard when you feel those most qualified to help you don’t believe you. I want to encourage you to speak up about this. Doctors are humans, too, and we don’t need to fear them. They make mistakes and don’t know it all. They can learn from us as much as we can from them.

Working together with your doctors is vital to your mental health, as well as your physical health. Never be afraid to disagree with them, educate them, or be honest with them if their attitude is hurtful. In my experience, the best, most respected, and knowledgeable doctors are those who listen to and learn from their patients.

It is so important to be actively involved in your own treatment. You know your body best; don’t afraid to speak up when something concerns you. An honest conversation may just mean a better relationship between you and that doctor, or a better experience for a future patient.

Thanks for reading, and don’t forget: your voice matters.

About the Author:

Rachel is a 29-year old Chronic Illness blogger at living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Rachel is passionate about challenging stereotypes and disability discrimination. She is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.

Social Media: It’s A Stranger Thing

Social Media: It’s A Stranger Thing by Kelly Conway on The Unchargeables

The recent security issues on Facebook have a lot of people wondering if they should delete their accounts. I see the validity of the concern, but in no way would I even consider deleting my account. Why? Well, it’s quite simple.

I Just Need Someone to Listen and Not Judge

Strangers on the Internet understand me better than many life-long friends and even family. I live with rheumatoid arthritis, fibromyalgia, thyroid disease, and a skin disease called DSAP. I struggle daily to get through the simplest of tasks because I live with chronic pain. My family and friends are very supportive and I know I am lucky, but even when they try to understand my pain, they just don’t get it at times. Honestly, I’m glad they don’t live in pain like I do.

Living with a chronic illness is very difficult. If I need to vent about the difficult times, I find people close to me either pity me or try to fix things for me. There are even outliers in my life, like a former boyfriend, who accused me of faking things to get out of doing stuff. It wasn’t true and that accusation is a big part of the reason that we are no longer together. Then there are the people who just want to cure me with all kinds of diets and treatments. Sometimes, I just need someone to listen and not judge. This is where Twitter and Facebook play an important role in my life.

Finding People Who Truly Understand Me

Social Media: It’s A Stranger ThingFinding groups of people on social media who understand when I post about living in pain is a blessing. I can post how hard it is to vacuum because my hand keeps going numb and I’ll get Sally Smith from Anytown, USA responding to me with, “Me too!” or “I get it!”. The simple fact that I know I am not alone is so reassuring.

Prior to social media, I felt totally isolated. My close friends were all married and starting to have kids. None of them had time to help me or be with me as I went from doctor to doctor to try to “cure” myself. I became bitter and resentful. Their lives all moved forward while mine was bogged down with pain and illness.

In 2009, I found a blog about a woman living with RA. I showed her cartoons to a coworker who said, “She sounds exactly like you!” It was one of those “aha!” moments and it changed my life. I started seeking out people on social media who also had multiple chronic illnesses. Since joining Facebook and Twitter, I have developed life-long friendships. Through social media, I helped to cofound a non-profit, traveled to Washington D.C. to advocate for patient rights, and have found comfort with strangers who simply get how hard it is to live the chronic life.

My personal Facebook account is filled with people who know me longest but my Facebook blog page and my Twitter account are filled with people who truly understand me. I value each one. Don’t get me wrong, I make a conscious effort to only share certain information online; I’m not oblivious to the dangers of social media. Not everyone is nice, but the ones who are make all the difference on a tough day. I value these interactions with fellow patients online and plan to continue my patient journey with others who truly understand me.

Want to connect with other Chargies? Visit The Unchargeables Facebook page!

About Author Kelly Conway:

”I am a patient advocate living with multiple chronic illnesses including fibromyalgia, thyroid disease, rheumatoid arthritis, DSAP, and high blood pressure. I work full-time as a speech-language pathologist and trying to balance my health and career is difficult. I’m the cofounder of IFAA (International Foundation of Autoimmune & Autoinflammatory Arthritis) and the author of the blog “As My Joints Turn: My Autoimmune Soap Opera.”

Spoonie Story: Lois Woken

lois w


My name is Lois Woken. I have been a spoonie all my life, however I didn’t know I was until about two and a half years ago. It seemed like growing up I was always sick. I got told I was faking it a lot. I wasn’t supposed to feel lethargic at my age,must be because I was lazy! At least that’s what my step father would tell me. I also was told I was faking how bad my joints hurt, however no one was laying with my while I cried myself to sleep every single night I was in pain. I learned to believe those lies. I told myself I hurt because I was fat, or not exercising enough, not eating healthy enough. I also told myself it only hurt when I exercised because I was so out of shape. I figured the sharp pains in my back and feet were normal after after 8 hours on your feet.
After the birth of my second son at 21 my body really changed. The bouts of fatigue were intense but short lived, and always accompanied by a slight fever and body aches. (some of the lovely symptoms of RA.) I thought I was getting frequent colds so I started taking tons of immune boosting vitamins and herbs, but it never helped, in fact I felt worse. (I now know that’s because I have rheumatoid disease, so I have an immune system that doesn’t work right, so by increasing my immune system I was only increasing my symptoms, by boosting an improper immune system.)


I pushed myself more and more, tried different diets, different exercises. Any thing I could think of to keep going. Then one day my body had enough. I went in to work one night ( I was an ER nurse at the time) and the pain in my abdomen was so severe I became sweaty and couldn’t draw in a full breath. They put me in a bed and began a work up, and that’s when I officially became a spoonie. I was diagnosed with gastroparesis and autoimmune hepatitis at the time. A year after that I was diagnosed with fibromyalgia and my doctor, at the time, was on the hunt for something autoimmune. Finally four months ago I was given the diagnosis of rheumatoid arthritis. I prefer to call it rheumatoid disease since it is not arthritis but an autoimmune disease. I also have Reynauds, migraines, asthma, RLS.


Becoming a spoonie was not an easy transition. I went from high paced, fast working, always going, active ER nurse to stuck in bed ill person almost over night. My husband suffers from PTSD which was quite severe at the time and also had a very hard time adjusting. I was not able to return to work. It took me a year to get disability. In the mean time we were struggling to make ends meet as we had a house payment an RN could afford but a disabled me could not. I had to give my car back to the bank, we tried everything to save our home but lost it as well. In fact we had to sell 75 percent of our belongings in order to be able to move. It was devastating. I was fairly ill at the time (this was 2 years ago). I had a PICC line with 24 hour fluids running and could only eat liquids. I weighed about 105 pounds. The stress of the move made things even worse. We moved from Texas to Las Vegas and put our belongings in storage. But due to just losing our house, belongings and owing in medical bills and everything else, we didn’t have enough money to cover our bad credit to get an apartment. So we left our stuff in storage and went to live with family in Washington until we could get on our feet.


During that time I was incredibly ill. All I wanted to do was die. My husband and I were struggling to get along because we were both grieving over our total loss and had no clue what to do. Thankfully I had my father during this time. He never gave up on trying to help us get through it, help us to see there was a light at the end of the tunnel. He honestly helped me to see that this was not worth life being over with. He helped me see I have a choice in how I feel. I was feeling like a complete loser. I lost everything and had to live in a studio hotel room. He helped me see how wrong I was in my self talk! I didn’t ask to become disabled. I didn’t ask for a body that hurts and wants to die. I certainly didn’t work my butt off for years to earn my RN and now be unable to use it. Becoming disabled does not make me a loser. It makes me a person who suffered through some terrible circumstances. I am a person who is strong enough to survive total loss and still find happiness in this world. I am still worth something. So with my fathers help and a husband willing to fight with me, I made some major changes to my self talk.


Here I am a year and half later. We live in a beautiful apartment in Las Vegas, doing many things we always wanted. Like art for instance. I have been able to access the best doctors I have ever had. We are finally able to pay off bills and will be out of debt in a year. I became very active in Spoonies for life and now have become an administrator, able to help others once again. I also get to be part of the Spoonie space talk show, another way to reach out and help others. I have found I cope better when I am able to help others. It fulfills the part of me that loves being a nurse and helps me feel a little more normal. I hope everyone who feels like giving up has someone in their life to help them see that there is always a light at the end of the tunnel as long as you keep going. Spoonies for Life has been an amazing game changer for me. I finally found people who could understand my pain. People who could help me make sense of the craziness my life had become.


My body still hurts and I still get flares but they are not as bad as they were. Changing how I think about my chronic illness has helped me achieve a better quality of life. I search for things every day to make me smile, things that remind me of the beauty in this world and in this life. My wish for everyone suffering a chronic illness is that they can find the beauty in their lives, whatever that may be.

lois woken2






Lois is an admin of the Facebook Spoonies for Life Support Group, as well as a panelist on the Youtube webshow Spoonie Space.


What are My Awareness Ribbon colors?


You see them everywhere, awareness ribbon charms, pins, magnets. Do you ever wonder what the colors mean or wonder which color represents your chronic illness? We have gathered the most common Spoonie and Chronic Illness ribbon colors here to help you out.





blue              Ankylosing Spondylitis


Chronic Fatigue Syndrome



            Restless legs Syndrome












bt blue

Addisons Disease

Behcets Disease

Chronic Illness

Graves Disease

Thyroid Disease




dark blue               Arthritis

Chronic Fatigue Syndrome

Crohn’s Disease

















Spinal Cord Injury








Lyme’s Disease









Celiac Disease


















Polycystic Ovarian Syndrome (PCOS)










Multiple Sclerosis








Invisible Illness









Chiari Malformatio

Chronic Pain

Crohn’s Disease




   Hidradentis Suppurativa



lavendarEosinophilic Disorders

Irritable Bowel Syndrome (IBS)








Congenital Heart Disease/Defect









Brain Disorders


Sciatic Disorders






bright yellow










Ehlers Danlos Syndrome








Kristina: My Life With Fibromyalgia

fibromyalgia bad day

I have lived with pain in some degree for close to 25 years. As a child, situations became overwhelming because of overstimulation. Noise made me irritable, I would go into another room to find quiet away from too much activity- even at Christmas! In my teens, I had a hard time sitting in one place, such as when we traveled. Sitting in the car for hours made my hips ache terribly. I had strange skin sensitivities and rashes that the doctors said were allergy related, although no allergy medication did more than make me drowsy.

I tried not to complain when I was hurting or tired because of the many times I heard, “It’s just growing pains,” “If you get up and do something, you will feel better,” “You are just trying to get out of doing___,” or “There is nothing wrong with you, it is all in your head.” Because of this, I thought it was just me, and that the amount of pain I had was normal- everyone had it.

I often went months with no problems, and had times where I practically lived outside, walking and riding my bike all over town. Eventually, during one of the worst times, I complained so often about the pain in my hips and knees, my mom took me to a doctor who told me I had arthritis. He said to take ibuprofen when it hurt, which did not help stop the pain at all.

fibromyalgia bad day

Searching For An Answer

In my twenties, I got married and had my son. Surprisingly, in hindsight, I had no pain issues while pregnant, and other than being highly fatigued with occasional swollen ankles, no other pregnancy concerns either. Shortly after having him, I began to have health problems including kidney stones, migraines, knee, back and hip problems, and other random aches and pains. Some mornings the pain in my hands and feet were so bad I could hardly make it through a shower, down the stairs and through breakfast with my son. After seeing a few more doctors, I was told I had Rheumatoid Arthritis. I went to physical and occupational therapy, took medications that did not help me and which had awful side effects, as well as the potential of causing long-term harm to my eyes and liver. I got counseling. I lived in fear that I would be wheelchair ridden, physically disabled before my son was even out of high school.

Through all of this I worked, usually full time. I was a wife and mother. I had my first house and all it entailed. I opened and ran a used bookstore. Many times, I didn’t have the energy to do the household chores, or run errands. My friends would come over to help with my dishes or laundry. They and my family were my saving grace in a tough time. I spent many days flat on my back in terrible pain. I often had my parents or grandparents take my son for the day because I just couldn’t take care of him. I would make plans to do things, and then have panic attacks, because of the pain I knew would come if I became too tired. Sometimes I would be so tired or miserable; I could not follow through with the plans at all. I stopped making plans. Routine shopping made my skin crawl, and gave me headaches- especially at Christmas time- or in a mall.

My ex-husband would tell me I was lazy, or a slob because I couldn’t keep up with the house. He called me a hypochondriac when I would mention aches and pains, or say I felt I needed to see a doctor for something. When I would miss some family function because of pain or fatigue, he would say I was making excuses not to see his family. I spent a lot of time with friends because they were understanding and helpful. The frustration of an unsympathetic marriage became immobilizing. I had severe depression because of all he told me I should be doing, but knew I was unable to do, and the guilt I felt because of it. In part because of my low self-esteem and feelings of failure, I filed for divorce.

Around the same time, I had a work-related accident, which left me with crippling back pain. After months of physical therapy, I found I needed back surgery. I went to a Rheumatologist, afraid I would trigger even worse flares of the Rheumatoid Arthritis, or that it would attack my back. Since the original doctor I had seen had moved out of the area, I saw a new one. He spent about 30 minutes talking to me about my symptoms, the timing of them, frequency, etc.; he spent another 30 doing tests- blood work, physical limitations, and a tender point test. That test just about sent me through the roof! This doctor listened more closely than any other doctor I had ever been to. He did not just make a conclusion based on 5 minutes of knowing me, he was very thorough! He said he did not believe I had RA, but needed to wait for my blood work to come back to see if I did have RA or another rheumatologic disease such as Lupus.

When the results were all in, the doctor had me return for a consultation. He told me that what I had was Fibromyalgia. I was elated! Instead of a progressive degeneration of my body, which would cripple me, I had a Syndrome, one that worked in flares and regressions. I could handle that, right? Just give me the meds and I will be on my way!


fibro warrior purple hoodie
Fibro Is Not For The Weak! Get yours here. (Click the image)


What Is a Good Day Like?

I have some degree of pain every day. On good days I can get showered, dressed and go to work. I can get through my day without anyone asking if something is wrong, and without losing patience with others. I have re-married. When I get home, I can probably do some errands, and manage to feed my family. I could pay attention to my husband and kids’ needs without being snappish. My pain on days like this is likely limited to achy feet in the morning, and stiff neck and back if I sit too long. At the end of the day, I probably need to sit and read in order to relax tense muscles before bedtime.


A Bad Day?

A bad day is usually preceded by a night with little sleep, aches and night sweats (the kind where you have to get up and change…ick! Night sweats are a symptom, but also a side effect of the medication I take for sleep and chronic pain.) When I wake up, my feet typically feel like the bottoms are bruised, my joints sound like Rice Krispies, and my neck is locked up. I take a shower (hot, because cool water actually feels as though it burns) and try to stretch. I dry my hair in stages because my arms get tired while I do it. I blow dry my face on cool so I can put makeup on, otherwise my skin is too moist, and lets the makeup slip right off (my make up only usually lasts until lunch on these days.) Then I go through my closet trying on outfit after outfit until I find clothes that do not hurt. Some fabrics are painful to wear because my skin often feels sunburned. Others are too tight and feel restricting (especially bras and elastic bands). (Read Katrina’s article: Dressing from head to toe)
When I could go to work, I could usually tune out the worst of my pain. Those that know me best know that I was passionate about my job and can be totally consumed by it. As an in-home behavioral therapist, I was up and down on the floor with children, and driving between clients. Once I was driving, it was all I could do to get to the next home. When I finally got home, I would put on the loosest, baggiest clothes I have, take a painkiller and muscle relaxer and hit the couch. I have recently left my job because of this.
Usually I will read a little, and then take a nap for an hour or so. On the worst days when I am asked what is for dinner, the answer is, “Whatever you can find.” These are the days I am on the couch until it is time to go to bed. These are the days I have everything from migraines or random shooting pain, to crippling muscle cramps and hot flashes. They are the days when hugs hurt and when my husband lightly rubs my back or arm to comfort me, he gets his head bitten off because it is so painful. My temper is short and my words sharp. The weekends following these flares (and they can last days, or weeks) I move from bed to couch, back to bed. The dishes and laundry pile up, the floors get sticky. I feel useless and pathetic. I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today. I am acclimating to the push-crash cycle I tend to put myself into.


How I Cope

I try to evaluate every situation; how will this situation affect me tomorrow, or next week, if I skip it? I know I have to live in the moment, and have learned the rules of “play and pay”. I have to weigh chores, trips, and tasks with “is it worth the pain I will pay with if I do it?” I try very hard to look at each day individually. Am I always able to do this? No, I have many days when I have little pity parties. Sometimes that is healthy, as long as they do not last too long!
I have been more frustrated and ornery with it this time, but it has also forced me to accept that this is part of who I am, and learn that I have to recognize it will always be with me to some degree. I am still grieving for the things I could do yesterday, which I want to do today.

What you need to know about Rheumatoid Arthritis

rheumatoid arthritis

Like many autoimmune diseases, the precise causes of rheumatoid arthritis (RA) are still not fully understood, although existing research points to a combination of genetic and environmental factors.

The first traces of rheumatoid arthritis in archaeological records date back to at least 4,500BC, although the disease was extremely rare in Europe prior to the 17th Century.

RA primarily affects the joints – in particular the hands and fingers – and causes swelling in the synovial membrane, and pain which can develop slowly over a period of weeks or months. Inflammation and swelling can also occur around the lungs and heart, and the condition may lead to fever and low energy levels.

There are other autoimmune conditions which may present similar symptoms, such as systemic lupus erythematosus,psoriatic arthritis, and fibromyalgia – and so whilst diagnosis is usually based on a patient’s symptoms, further tests and x-rays may be used to rule out these other possibilities.

Also in common with other autoimmune diseases, rheumatoid arthritis is classified as being incurable. For this reason, treatments are focused on reducing pain and discomfort and improving the patient’s general quality of life.


RA warrior blue hoodie
Get Your RA Warrior Hoodie Here. Click The Image To Order Yours.


Signs and Symptoms

Rheumatoid arthritis is a condition which primarily affects the joints. However, 20-25% of patients may also experience symptoms in other organs.

Swelling and painful inflammation of the joints occurs more often in the morning and last for more than an hour, and can also occur after periods of rest or inactivity. The time and duration of the discomfort can help to differentiate rheumatoid arthritis from other forms such as osteoarthritis.

Typically, the symptoms occur symmetrically (affecting both sides of the body equally) although this is not always the case and symptoms may develop asymmetrically. As the condition advances, the inflammation can lead to damage to both cartilage and bone in the joints, resulting in a loss of mobility and movement, as well as further pain and discomfort. This damage to the cartilage and bone may also result in deformity of the joints, particularly in the fingers.

As well as issues with joints, around 30% of patients experience what is known as the ‘rheumatoid node’. the most common non-joint symptom. It is a kind of inflammatory reaction which occurs in the skin, usually over bony areas such as the elbow, heel and knuckles. Other, less common, skin associated symptoms include pyoderma gangrenosum, Sweet’s syndrome, drug reactions, erythema nodosum, lobe panniculitis, atrophy of finger skin, palmar erythema, diffuse thinning (rice paper skin), and skin fragility.

Fibrosis of the lungs is commonly associated with rheumatoid arthritis. In studies in the USA, approximately 25% of RA patients also developed rheumatoid lung disease.

In addition, rheumatoid arthritis can cause complications in the kidneys (such as renal amyloidosis) and in the heart and blood vessels. In some cases these associated conditions are a result not of the arthritis itself but a reaction to treatment. Anti-inflammatory drugs in particular can have an impact on blood vessels and doctors need to consider this when prescribing treatments.



Current research suggests that genetics account for approximately half of the known causes of rheumatoid arthritis (although as mentioned earlier, the causes are not yet fully understood).

Of the known non-genetic causes, smoking is believed to be the most significant, with rheumatoid arthritis being up to three times more common in smokers.

It has also been observed that a deficiency in Vitamin D is more common among rheumatoid arthritis patients than the general population – although it is unclear whether this deficiency is a cause or result of the disease.

There is no evidence as yet to suggest that rheumatoid arthritis is hereditary.


Treatment and Management

As yet, there is no cure for rheumatoid arthritis, and so treatment is based on managing and alleviating symptoms.

The primary treatment is known as Disease Modifying Anti Rheumatic Drugs (DMARDs). This collection of drugs has been shown to cause remission of rheumatoid arthritis in up to 50% of patients when started early and they are generally found to reduce symptoms, decrease joint damage and reduce pain and discomfort. DMARDs include methotrexate,hydroxychloroquine, sulfasalazine, leflunomide, TNF-alpha inhibitors (certolizumab, infliximab and etanercept), abatacept, and anakinra.

Other anti-inflammatory agents can also be prescribed to rheumatoid arthritis patients, although these must be used with caution in the presence of other conditions such as gastrointestinal, cardiovascular or kidney problems.

In the early stages of rheumatoid arthritis surgery can be an option, removing the inflamed synovia. In later stages, joint replacement surgery may become necessary.

In addition to medical treatment, lifestyle measures such as taking regular gentle exercise and receiving occupational therapy have been demonstrated to reduce the symptoms and advancement of rheumatoid arthritis. There is as yet no evidence that dietary measures have an impact although research is continuing in this area.


Facts and Figures

● Named in 1859 by English rheumatologist Dr Alfred Baring Garrod
● Affects between 0.5 – 1% of adults in the developed world
● Approximately 25 new cases per 100,000 population per year
● Rarely seen in those under 15 years of age
● Most commonly begins between 40 – 50 years of age



Like many other autoimmune diseases there is no known cure for rheumatoid arthritis. However, advances in medicine and continuing research are uncovering ways to manage and treat the symptoms. In addition, it is possible to ‘self-manage’ to a good degree by making appropriate lifestyle choices.