20 Years With Reflex Sympathetic Dystrophy – A Post For CRPS Awareness Month

Good evening lovelies,

November marks CRPS Awareness Month. However, what few people realise is that I myself am a CRPS sufferer. CRPS, or Chronic Regional Pain Syndrome covers a broad range of conditions, including multiple sclerosis, arthritis and fibromyalgia. Today, I’m going to be sharing with you a little about how I came to develop, was diagnosed with and how I now live with my chronic pain condition. I hope that this post is informative and interesting to you. If you have any further questions, please leave them in the comments and I will endeavour to answer them to the best of my ability.

What is RSD?

RSD, or Reflex Sympathetic Dystrophy, is a chronic pain condition characterised by pain in either localised areas or diffuse regions of the body. It can happen suddenly (Type 1), or like in my case, it can be caused by an identifiable personal injury. Previously, this was referred to as RSD Type 2- Causalgia, with “caus” meaning ‘a reason’, and “algia’ meaning ‘pain’. However, these days, doctors typically lump Type 1 and Type 2 under the same name, regardless of the presence or absence of a known trigger. Like many other chronic pain conditions, RSD is not considered to be hereditary or genetic.

What happened to you?

It all started off in 2000, I was more or less a normal, active 12-year-old girl. I went to the park with my grandmother to play badminton and we were hitting a shuttlecock back and forth over the fence surrounding the parameter of the empty children’s play area, all was well. However, I have a strong competitive streak, and as the shuttlecock went low, I dipped down to hit it back up instead of conceding a point. Instead of hitting the shuttlecock, though, the top of the racquet hit the ground, bending my wrist back and damaging the nerves and tendons in my wrist. If that sounds painful, it was.

Then in 2002, I was attempting to get into a swimming pool and a young girl approached the steps from behind me with every intention of getting out of the pool. So as not to kick her in the face as I got into the water, I looked back and that was when disaster struck. My foot slipped down one step and collided painfully with the one underneath. Almost immediately, I had burning pain in my foot and ended up being assisted on the poolside by two rather tasty looking lifeguards (I have no complaints about that, mind you!). I tried to hold off, but the pain didn’t subside and that evening, I ended up going to A&E – not a fun way to spend part of your holiday!

Lastly, in 2007, I was the victim of a really stupid, rather hilarious accident. My Dad threw a solid rubber ball for our dog at the park, but it curved, hit a bin on the footpath and came hurdling in my direction. So what do you do in that situation? I curled up with my head between my hands and tried to make myself as small as I could, rather than taking a solid ball to the face. A great idea, except I was still in the way of the dog, a 14kg Labrador Alsatian mix. As you can imagine, in a battle between the dog and my kneecap, the dog won.

I ended up on crutches and painkillers for six weeks with a badly bruised knee, then one fateful evening I had to let our other dog back inside. Guess what? Head first, straight into the same knee. It’s not been right ever since. The doctor aren’t sure whether it’s RSD or just generally knackered, but given that I have RSD anyway and get myoclonic jerks in my knee, they consider it to probably be another pain site.

Why don’t you heal like most people?

Nobody really knows why some people have RSD and others don’t, but one theory is it might be a faulty gene. Not a lot of research has gone into RSD and although I was part of research studies at one time, I eventually withdraw my support when it seemed that I was spending more time in and out of various medical appointments than I was spending at school.

Technically, I do “heal” like most people do, in that if you were to look at an X-ray or an MRI scan of my wrist, then you wouldn’t see anything out of the ordinary. However, even in spite of the injury having healed, the body still sends pain signals unnecessarily.

The way that I was always taught to think of it is like a faulty telephone line. If all is well, the messages go through fine. However, if that like is damaged, then the messages don’t quite get through like they should. You can get interference or sounds that shouldn’t be there as systems try to decipher the signals. In the same way, because of pre-existing nerve damage, my body is still saying that there is an injury even when there is not. Just like those faulty signals, sometimes my body overreacts to things that wouldn’t normally be a problem to anyone else.

What are the symptoms?

Chronic pain would be the obvious answer, but when people think of chronic pain, they think of chronic, debilitating pain. My pain is chronic in that it’s there all of the time, but I’ve just learned to try and ignore it to the best of my abilities and not let it get in my way. It takes a lot of practice, a lot of meditation, mindfulness and focus, but it is possible to learn to live with chronic pain. Asides from that, I get spasms and painful myoclonic jerks, which are where my muscles cramp up suddenly. When that happens, I can’t ignore my pain anymore. When that happens, I normally do swear like a sailor.

When it comes to the pain itself, most people liken the pain to a hot metal rod piercing through their bones. It is deep, it is burning and it is intense. If you’ve ever broken a bone, then I would say that the pain is pretty similar to that. I have been unfortunate enough to experience both eventualities.

Some of the other, more bizarre symptoms that I experience are colour changes and allodynia, or sensitive skin. Sometimes, my wrist adopts a purply blue hue with red splotches. It’s usually in response to stress or cold weather, but it is linked to my RSD and has earned me the name of “Chammie” (for “Chameleon”) from my family because of it. When it comes to my sensitive skin, I can’t bear anything touching the outside area of my right wrist. It’s why you’ll normally see me wearing t-shirts with the heating cranked up, even in November!

Here is a picture I took of my wrist this morning looking a little mottled. This isn’t the worst it can be, but it’s still not as healthy as it could look!

Some skin mottling on my right hand, present in Reflex Sympathetic Dystrophy

How were you diagnosed?

It started when I kept complaining that my wrist hurt, even months after the initial injury. The colour changes were there and I would not let anyone touch it. The way that I flinched anytime someone touched it, a lot of people suspected that it was broken and so I was sent o=for an X-ray, but on the x-ray, nothing was there and so back to school I went. Weeks later, I was still complaining so I was sent for another x-ray, same fate. I was given a metal splint and sent home.

Around the same time, my brother was diagnosed with RSD. He was sent on a 3-week pain management programme, while I was still being treated with painkillers and a splint. My Mum didn’t know anything, but she thought to suggest to my doctor that my brother was on the programme, and would I benefit from it, or could I even have the same diagnosis?

A lot of the tests that I went through at the children’s hospital looked at things like manual dexterity, gross and fine motor movements, strength and sensitivity. It was a strange experience because I do remember on that day that the doctor invited two junior doctors into the exam without telling me, and I was so embarrassed and confused that I just agreed for them to stay. After the exam, I was sent for an ultrasound and thermal imaging, and that was where they started to detect some issues. When I saw the doctor again, he told me that the ultrasound showed inflammation and the thermal imaging showed heat. As it correlated with an injury that happened 2 years before, they started to suspect that I too had RSD.

In the end, I was sent to Bath Royal National Hospital for Rheumatic Diseases where I met with Dr Jacqui Clinch and her team. Getting my diagnosis was a bit of a strange experience because it wasn’t like when I normally went to the doctor, it was more like a court hearing. Instead of telling the doctor about my symptoms and then being told whether they thought I had RSD or not, they said nothing to me. They listened to what I had to say, then they sent me out of the room while they made a decision and looked at the results of the scans and X-rays. After about half an hour, I was called back into the room to be told that they were fairly confident in diagnosing me with RSD.

Is it treatable? What medication do you take?

The sad news is, RSD is not treatable. The good news is, like with mine, it can get easier with time or even go away entirely. I’m still hopeful that my RSD will go away one day, but it’s generally said that if you still have it after three years, you will probably have it for life.

In terms of treatment, painkillers and sometimes muscle relaxants are the most common approach, but antidepressants are also quite frequently prescribed, too. Unfortunately, there is an increased suicide risk for people with chronic pain if their condition is not properly managed, so aiding sufferers is about both their physical and mental health. For me personally, I used to be prescribed 50mg diclofenac sodium tablets three times a day, as well as 2 * co drydramol 10/500mg 4 times daily. However, I had a really scary experience one time with taking a maximum dosage that left me zoning in and out of consciousness for three days, so after that, I just stuck to the diclofenac which didn’t cause such nasty side effects. Unfortunately, because of the long term complications of those medications, they have now been stopped. Instead, these days I just alternate ibuprofen and paracetamol for a few days when I need it. I try not to use painkillers unless things are really bad though, because of the long-term risks.

How do you manage your life with chronic pain? How does it limit you?

Mostly, I learned a really helpful tip called pacing. Pacing is quite literally what it says on the tin, it’s all about pacing yourself and not doing more than your body can do. Sometimes I can walk for several hundred metres and be fine, and other times, like now in the winter, even getting to my front gate is a struggle. Certain things make chronic pain worse, like cold weather, stress and illness. In the winter, my family are more than used to having to be a little bit patient with me.

My family and my husband are amazing, and I cannot imagine a world without them. There is a term we use called “Setback City”. Setback City is a really dark, bad place, kind of like how the world feels in the coronavirus lockdown. “I’m at Setback City” is like saying to my family “this is serious, my pain is really intense right now and I don’t feel that I can go on. I need to get out of here immediately and recover for a few hours or days”. For my family, “Setback City” is like a Code Zero to the police, it’s very, very serious business.

In terms of limitations, one of the biggest ones that shock a lot of people is that I can’t handwrite anymore. I can, but I can’t write more than a line or two because of pain, and I hold the pen completely differently to a lot of people. Here is a photo of how I hold a pen:

How I hold a pen with my pinky finger sticking out. Caused by Reflex Sympathetic Dystrophy.

As you can see, I write with my pinky finger sticking straight out. This is because anything brushing the outside of my wrist is extremely painful for me, so I’ve learned to shift my positioning to relieve the pain. Think about how it would feel to rub the underside of your wrist against coarse glasspaper, that is sort of what it feels like for me.

In terms of aids and adaptations, then perhaps one of my best-kept secrets is that at home, I use adapted cutlery. Gripping normal cutlery is very painful and causes my hand to cramp up, so I need something wider which doesn’t require my hand to curl so much. One of my biggest grievances with adapted cutlery is they do make you stand out, so I tend to struggle if I dine out and eat a lot slower than some other people. I don’t like using my cutlery in public as people make assumptions about you or change how they speak to you. I’ve had many years of people talking to me differently as soon as they realise I have multiple disabilities so I try to limit it, albeit sometimes at my own expense.

Asides from that, anything with a twisting action is unbearable, so I have to ask my husband to open jars and I have an electronic can opener to help me out. I’ve tried various jar openers, but I haven’t found one yet that is easier for me than asking my husband for help. A lot of jar openers still require a tight grip which, although I still have, is very painful for me to do. When the jar gives as it opens, that jolt is often so excruciatingly painful that I usually end up dropping the jar anyway. If we want to eat dinner, it’s just better to ask my husband to open the ingredients for me.

To get around, I have a pair of crutches under the stairs ready for when I need them. I also have a foot and wrist splint that I wear for support when the going gets tough. They’re painful to put on, but they do help in time and with painkillers. I don’t like using my crutches as they put a lot of pressure on my wrist, which sort of turns getting around in the winter into a bit of a double whammy. I do suffer a lot more in the winter, so if I seem not quite up to myself in these months, then I’m sorry.

When I blog, I use a memory foam wrist rest to lift my hands up and stop them from brushing against the keyboard, I also have a pair of sexy neoprene fingerless gloves that I wear when I’m using my laptop which gives my wrist some warmth and gentle support. If I have to write an informal note to someone, I usually type it (unless it is very short), but I pick a more informal font to take some of that seriousness off. By now, most people know my reasons for typing notes instead of handwriting them, and they fully understand.

Some people with RSD have amputations. Have you ever considered it? Why or why not?

Yes, it is true that some people have amputations if they suffer from Reflex Sympathetic Dystrophy. However, Phantom Limb Pain is also a thing, which sort of sounds like hell when you’ve gone through such an ordeal to relieve your suffering. Phantom Limb Pain is sort of when your body “remembers” the pain, so you think that your foot or hand still hurts, even if it’s not there anymore. For this reason, I’ve never considered amputation to be a viable option for managing my condition.

You always seem so positive, how do you keep smiling?

Humour, really, is my biggest antidote. I can have quite a sick, sardonic sense of humour about my condition, which sometimes helps to make my condition more manageable. If I get spasms, for example, sometimes I will say something like “oh, my wrist/knee/foot is having a party and clearly we’re not invited”. Sometimes though, my humour is a front because while I’m joking about my condition, I’m on the brink of tears inside, and my family knows that. They can see right through my humour sometimes.

On the flip side, I also know three other people with RSD, and I’ve met all of them personally. One is as mad as a box of frogs and goes skydiving and rock climbing in a wheelchair or on some sort of bodyboard, one is a rower, but the other lady has tragically given in to her condition and the last I’d heard, she was more or less bedridden and was having all sorts of aids and adaptations put into her home. I remember her mother just seemed to enable her to give in at the time and I felt really sad about that. When I met her at some of the open days on my brother’s pain management course, I noticed that she never seemed to even try. She would make a half-hearted attempt then say she couldn’t do the activity and just laugh about how bad she was at it. My family know what I can and can’t do and they don’t let me fall short. Even if I need them to bring in a fish for me, I’ve still found my own way to cast out that sort of involves almost throwing my fishing rod and grabbing it back at the last moment. Still, having met this lady and her can’t do attitude, she was kind of my inspiration to say “no way! I can, I can, I can!”. I might have to do things a bit differently and I might need some amazing people to help me but you better believe that if I can, I will, and even if I can’t, I will still try.

How can I support someone with RSD?

Really, just be patient and understand that this is a condition that has good days and bad days, and that chronic pain is not fake or made up. Growing up, I was often called a “faker”, which is absolutely horrible. Just because you can’t see the pain, doesn’t mean it doesn’t exist. People with chronic pain conditions wish that they were making it up, but sadly, we’re not.

Please don’t do things for us. Look, we know you mean well, but when you do things for us, it underscores our inabilities and makes us focus on our condition. Let us have a go first. If we need your help, we’ll ask.

Should you ever meet me, left-hand handshakes only, please. I know it seems weird. but your finger wrapping around and pressing on the outside of my right hand is more than I can bear. I’m not kowtowed by your handshake, I promise, I just have a pain condition.

One last thing? Please don’t tell me that I’m brave or inspirational. Living with chronic pain is not like going into battle. Soldiers are brave, I’m just a normal woman trying to go about living my life.

Where can I find more information?

For the amount of support they gave me at the start of my condition, I can only ever recommend Burning Nights CRPS. They also provide links to other support networks worldwide, should you need them.

Alright lovelies, I hope you enjoyed this post and I hope it has given you some food for thought. Like I mentioned above, if there is anything else you would like to know, please do ask and I will do my best to answer you. Don’t be afraid 🙂

Until next time.

Until next time!

Stay safe & have fun,

Helen xx

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