Transcript

Transcript of #ShitAbledPeopleSay thread, found here

• "You don't have a disability. It's just a little pain." I don't think you understand how much pain I'm actually in #ShitAbledPeopleSay
• I've had this chronic pain for over two years and it's only getting worse. There have been WEEKS where I haven't been able to sleep right
• All because of the pain I'm in. My wrist swells constantly, it changes temperature, and can go entirely numb for no actual reason.
• I'm currently on anti-depressants to try and control the pain. If this doesn't work, the next option I've been given is surgery on my hand.
• Before the surgery takes place I'll have to have an injection into the smaller nerves in my hand (and possibly wrist) which would numb them
• If that proves to be effective then I'll have surgery to REMOVE the smaller nerves/nerve endings from my hand
• I'm terrified, but it's all okay because "it's only a little pain" and nothing serious. And it's definitely NOT a disability in any way
• The definition of disability. A condition that limits movements or activities.

Photo: The definition of disability - taken from Google.

1. a physical or mental condition that limits a person's movements, senses, or activities.
2. a disadvantage or handicap, especially one imposed or recognized by the law.

• I can't do my job correctly because if my wrist goes then someone will end up hurt. Others are having to help me carry food I should carry
• If I'm holding a tray of five full plates and my wrist gives way, there is a high possibility of the tray landing on a young child
• I get that people don't see pain as a disability but chronic pain isn't like normal pain. I'm barely able to do what others can do with ease.

Thank you for reading my blog. If you are interested in finding out more about CRPS, then I have provided some links below:

According to www.nhs.co.uk: Complex Regional Pain Syndrome is a poorly understood condition in which a person experiences persistent severe and debilitating pain. Up to 1 in 3,800 people develop CRPS in the UK each year.

According to www.burningnightscrps.org: CRPS occurs when both the nervous system and immune system malfunction as they respond to any tissue damage from trauma. 

What Next?

Hey guys! Sorry I haven't been active for a while. Truth is, I've been stressing out over what may happen with my right wrist - the wrist with the confirmed CRPS.

I had a hospital appointment a few weeks ago, in regards to the CRPS. The consultant was not happy with my reaction to the Nortriptyline. I have been sleeping for several hours longer than expected which has resulted in me almost missing some very important appointments. Including the hospital appointment in which I saw the consultant.

He was not happy with me being on antidepressants, and I have an upcoming appointment with another consultant to discuss what can be done next. The idea that has been proposed is that I have an injection in the back of my hand. The injection should numb feeling in the smaller nerves (possibly nerve-endings) in my hand and my wrist. If this proves to be successful, I will undergo surgery to actually remove the nerves/nerve endings from my wrist.

This is a very scary prospect for me, as I am terrified of hospitals, The idea of actually removing nerves/nerve endings permanently has me very worried. A lot could wrong, but it could also do me a massive favour.

My next appointment is in just over two weeks, and when I know what is happening I will write another post.

Thank you for reading my blog. If you are interested in finding out more about CRPS, then I have provided some links below:

According to www.nhs.co.uk: Complex Regional Pain Syndrome is a poorly understood condition in which a person experiences persistent severe and debilitating pain. Up to 1 in 3,800 people develop CRPS in the UK each year.

According to www.burningnightscrps.org: CRPS occurs when both the nervous system and immune system malfunction as they respond to any tissue damage from trauma. 

Medication

Accurate as of 22/7/2016

So, in my last post I mentioned that a year after I broke my wrist I was referred to the pain clinic, and it was there that I finally got a diagnosis. What I decided not to mention was the various medication that I've been put on for my pain, and my reactions to the medication. I'm lucky, because even though I've been suffering for over two years, I haven't actually been on all that much medication.

In the beginning:
As they weren't entirely sure what was wrong with me, they prescribed me fairly normal painkillers to take when I felt necessary:

• Ibruprofen
• Paracetamol

These painkillers did very little for the pain. At this point, I was also taking them because I had damaged my knees and hips.

Pain Clinic #1
After a year of taking over the counter painkillers, I finally got an appointment with the Pain Clinic. I was prescribed:

• Prednisolone
• Pregabalin
• High Dose of Vitamin C

The Vitamin C made me physically sick, and so I refused to take it. At the point, I was starting my GCSE exams and so didn't want the medication to affect my results. Both the prednisolone and pregabalin made me feel sick, and once I had taken them all I felt no difference. I was still in immense amounts of pain.

Pain Clinic #2
A year on from my first pain clinic appointment I was given another appointment. After explaining to the consultant that the previous set of medication actually made no difference, he decided to put me on something stronger.

• Nortriptyline

The antidepressant works by increasing the amount of specific nerve transmitters in the nervous system, thus reducing the number of "pain messages" arriving in the brain.

So far it seems to be working pretty well. I had been sleeping terribly due to the pain, and the nortriptyline is knocking me out in about 40 minutes. However, I am finding it far more difficult to wake up in a morning and I am having to set several alarms at 10 minute intervals just so I can be sure that I'll be awake. My wrist is still very painful and sensitive, though the numbness and mottling of the skin seems to be reducing.

I'll write another post if anything regarding medication changes. For now, this is perfectly up-to-date.

Thank you for reading my blog. If you are interested in finding out more about CRPS, then I have provided some links below:

According to www.nhs.co.uk: Complex Regional Pain Syndrome is a poorly understood condition in which a person experiences persistent severe and debilitating pain. Up to 1 in 3,800 people develop CRPS in the UK each year.

According to www.burningnightscrps.org: CRPS occurs when both the nervous system and immune system malfunction as they respond to any tissue damage from trauma. 

My Diagnosis - What Happened?

I figured that I should probably do some kind of introduction to this blog, and give the readers of this blog some background knowledge about why I've decided to start a blog. 

In 2014 I fractured the right scaphoid (pictured below), which is a fancy way of saying that I broke my wrist. I broke my wrist by putting my hand between two chairs, and getting it stuck. Me and a friend then proceeded to wrench my hand out of the gap, which resulted in my wrist snapping at an awkward angle. I could still move it fairly normally however. This was later revealed to be due to my hypermobility; I overstretch the joints in my arms and my legs.

Image Credit: Radiopaedia

Due to limited blood supply to the bone, the estimated healing time for a scaphoid fracture is normally about 8-12 weeks. It varies depending on the person and the injury.

The First Cast

The Second Cast

After 10 days of complaining that my wrist hurt, I went to A&E and was put in a cast for two weeks with a suspected broken wrist. The cast was then removed, I had another x-ray, and I was put into another cast - this time for 5 weeks. 

Once the 5 weeks were up, I was still in a lot of pain and my wrist was still very swollen. I'm not 100% sure of how long I was in the third cast for, but I do remember it being red. 

The third (and final) cast came off, and I was sent on my way. I was informed that it may be very stiff and sore to start off with, but the pain would settle down once I was using it properly. Needless to say, this didn't happen. I was in a lot of pain all of the time, and my regular painkillers weren't doing anything. My hand would go entirely numb, or it would feel as though it was burning. The skin would become mottled (pictured below) and my hand would feel very heavy.

Image Credit: LondonPlusCentre

I was in and out of the hospital for almost a year before they finally came up with a diagnosis.

• I was sent to a physiotherapist who believed I had damaged the ulnar nerve, and so we spent several weeks working through a list of exercises. As it wasn't getting better, she decided to send me for a nerve-conduction study.
• I had two nerve-conduction studies to determine whether I had just trapped a nerve. Spoiler alert: I had not.
• I had a carpal tunnel screening TWICE as one of the consultants believed that I was symptomatic of carpal tunnel. The results both times were better than the average.
• I had blood tests taken, because they wanted to rule out a form of arthritis which has a history in my family. Results came back completely clear.
• I had an MRI on my neck and shoulder to see if the damage was linked to the whiplash I had suffered several years back. It wasn't.
• I was sent to another physiotherapist to see whether there were any trapped nerves in my neck. Again, there was nothing.

That list isn't a complete, as I bounced between several clinics for months. Eventually, my physiotherapist came up with a suggestion: I may have developed a form of chronic pain. She referred me to the local pain clinic, and I had to wait for an appointment.

The pain clinic at my hospital is a private clinic as well as an NHS clinic, and so it took a while before my appointment came through. By the time I got my appointment, I had broken my wrist just over a year before. It had taken this long for my doctors and consultants and physiotherapists to come up with a possible solution that had not yet been ruled out. 

When I finally met with the consultant, he gave me a diagnosis. By breaking my wrist, I had actually developed Complex Regional Pain Syndrome, which was formally known as Reflex Sympathetic Dystrophy Syndrome. 

I was relieved - after all this time, I finally had a name for my condition. It had gotten to the point where I was convincing myself that it was completely in my head and that I was making the pain up. However, this was where my relief stopped. As the consultant explained to me, if the pain went away within three months of the initial injury then it was acute pain, and easily fixed. If the pain remained for longer than three months, it was chronic pain and would be far harder to solve. 

The rest will be written about in following blogs, as there is still a lot of information I have yet to mention. This is just a brief outline of the lead up to my diagnosis, and there is still much more to come.

Thank you for reading my blog. If you are interested in finding out more about CRPS, then I have provided some links below:

According to www.nhs.co.uk: Complex Regional Pain Syndrome is a poorly understood condition in which a person experiences persistent severe and debilitating pain. Up to 1 in 3,800 people develop CRPS in the UK each year.

According to www.burningnightscrps.org: CRPS occurs when both the nervous system and immune system malfunction as they respond to any tissue damage from trauma.