As an autoimmune disease, my body is mistakenly attacking normal healthy cells as a result of a certain stimulus (in my case, not quite sure what that stimulus is). In particular, my body is attacking the cells lining my joints, commonly referred to as rheumatoid arthritis (not to be confused with osteoarthritis which is considered to arise from 'general wear and tear', again, I'll refer you to my About Me page). This is causing inflammation of the joints. This inflammation can sometimes be evident in the physical swelling of the joint or it can be unnoticable. Fellow sufferers are probably all too familiar with this. If people can't see the source of the pain, they are less likely to believe its there and this can be infuriating when you're in agony, but let's save that for some other posts.
I've attempted to illustrate (poorly in photoshop, I'm so sorry!) the areas of pain in the diagrams below (that I borrowed from work - these are forms typically used in skeletal identification reports and disaster victim identification reports for detailing the skeletal elements discovered or any particular distinct marks/scars/other identifying features on the body). In the skeletal image, I've attempted to illustrate the joints that are swollen and the areas of pain on the complete body image - as you can see the pain from one joint can manifest over a significant area.
KEY: Red = joint inflammation.
KEY: Red = pain manifesting from joint pain. Yellow = significant neuralgic pain. Purple = obvious spots of psoraisis.
The greatest cause of my pain is something called sacroilliacitis. This is at the joint between the sacrum and the illiacs - sacroilliac (SI) joint -, which is basically where the back attaches to your pelvis and there's not a lot of movement in this joint. Unfortunately this is the joint where I have significant inflammation. The whole joint on both sides and manifests as horrible pain (a combination of aching, pulsing, stabbing and burning pain all at the same time) and this never goes away. It spreads completely across my lower back and bum. This makes any sort of moving, walking, standing, sitting incredibly painful and exists everytime I make a movement, take a step or just sit/stand. It is most agonising in the morning as I wake up. Or actually whatever time I wake up. I rarely have any comfort sleeping as when I wake up, particularly this part of my back is so painful that it's almost impossible to move sometimes. Simple tasks like rolling over into a new position take so much effort and sometimes it's not worth the pain to get up. So if I'm struggling and slow to get up, you know why. No leaping out of bed like a ninja for me (which is verry trying when you're late for something!!)
I also suffer inflammation in my spine (spondyloarthritis) which is much the same as the pain in my sacroilliac joints but the inflammation is to a lesser degree and there's slightly less pain than there is in my lower back. But this radiates up my spine and is sore. Simple movements like rotation are very difficult. This pain is also present in both left and right shoulders and my neck. So things like looking over my shoulder have become increasingly difficult. In the morning this can be almost impossible. I will physically have to move my whole body round to look behind me rather than simply glancing over my shoulder. Similiar rotationg movements like putting arms in sleeves of coats generates the same pain. This pain also manifests in my ribs and makes things like breathing sore. Rapid expansion of the thorax is excruitatingly painful (a.k.a sneezing hurts like hell!!!) and there's nothing I can do to stop it other than try and get in a position to minimise the exansion and pain.
Hindsight is also a magical thing. I suffered from temporomandibular joint (joint where your lower jaw attaches to the rest of your head) syndrome while at University. I had surgery to relieve the pain in my jaw I had all the time. It was making a horrible clicking and cracking noise everytime I opened it, chewed, etc. It's only now that that has been attributed to my arthritis. Which also suggests that it began developing a lot early than I thought and way way before it was even remotely diagnosed.
Hindsight is also a magical thing. I suffered from temporomandibular joint (joint where your lower jaw attaches to the rest of your head) syndrome while at University. I had surgery to relieve the pain in my jaw I had all the time. It was making a horrible clicking and cracking noise everytime I opened it, chewed, etc. It's only now that that has been attributed to my arthritis. Which also suggests that it began developing a lot early than I thought and way way before it was even remotely diagnosed.
My ankles also really hurt. This one is strange. It's not as inflamed as my SI joints and isn't as painful, but bearing the weight from my body takes its toll and it can become increasinly difficult to walk. There are also times where my ankle joints feel so incredibly weak. Like I have absolutely no strength in them and I'm amazed they are even supporting me at all. Every step it feels like I could just imagine my legs snapping off from my ankles. It's a very strange feeling that can be difficult to imagine if you've never experienced it. I also experience this in my wrists to some degree (particularly the right), though it comes and goes. Sometimes I can lift a kettle with my right arm, sometimes I pick something up and it feels like my arm is about to snap off and I'll have to put it down.
My middle finger, also really hurts. You'll often see people with significantly swollen fingers or toes. Where they've swollen up so much that they look like sausages (technical term is dacylitis). This is happening in my middle finger (and trying to show this to folk and not looking like you're swearing at them can be difficult). There is significant swelling in my interphalangeal joint (joints between the little bones in my finger) and as a result the joint looks huge and is incredibly sore and tender to touch. My finger did used to look like some of the sausage fingers but luckily for me is now only swelling at the site of the joint. The process is also happening in my big and pinky toes and they can be tender to touch and put any weight on, which makes walking difficult.
But walking is particularly difficult at the best of times. As a result of the inflammation and swelling in my lower back, I have sciatica. The swelling is compressing on the sciatic nerve causing horrible neuralgic pain to shoot down through the middle of each bum cheek and the back of my thighs (the course of which the sciatic nerve runs inside the body) and this is horribly painful. A horrible shooting burning pain that transmits down to my mid thigh. Mine doesn't extend below the knee but this can happen to many sufferers. This is displayed in yellow in the diagram. It's difficult to describe. Those who have suffered neuralic pain will understand what I am talking about and how difficult it is to describe and those of you who don't, please take my word for it and I hope you never have to experience it. Imagine lightning burning and shooting through your body constantly. (If anyone who has been struck by lightning is offended, let me know and I'll try and describe it in some other way).
This makes it difficult to put any weight on particularly my right leg where the sciatica is most prevelant though it does also occur in the left to a lesser degree.
Over the last two years my gait has significantly changed. To reduce the pressure on my leg, I walk by turning my right leg in at an angle and have a weird sideways waddle limp when it's really bad. I also have enthesitis which is a swelling of the site at which joints and tendons insert to bone, givingme plantar fasicitis. The site of which the plantar fascitis attachs on the sole of my foot is very inflamed, sore and tender. You can't touch it without me recoiling in horror. It's just where the arch of your foot begins. Runners often suffer from this. You can also experience a horrible burning and stabbing feeling at the site of the inflamation. Which is very difficult when it's on the underside of your foot and you have to walk, putting all of your body weight on it (I like to think I'm of average weight for my size). Walking at the odd angle helps to reduce this pain. I experince this predominantly on the right foot (you're beginning to see a pattern) but occurs to a lesser degree on the left. On a very bad day, I won't be able to walk. On an average day, I can walk but not without significant pain and in a very odd gait that's probably not very good for me. On a good day....well, I'll let you know when I get one.
The purple spots on the diagram are my psoraisis. I have typical looking psoraisis consisting of red plaques with built up layers of white skin on top. This doesn't typically cause pain if left alone. But I like to pick at it and then it bleeds. It's not the best too look at either. I had sunbed treatment while at university, maybe 6 years ago now. It was very effective and removed most of the plaques. But a common problem with that treatment is as soon as you stop, it comes back. Most of my plaques are positioned conveniently that they can be hidden (and are suprisingly quite symmetrical), but I know lots of others aren't so lucky. There is a massive group of plaques that cover completely the under-breast area from one side to the other. There are some misc. spots on my sides, back and bottom. There's one spot on my elbow and one on my thigh. There are two spots either side at the base of my neck where the clavicles (collar bones) are. There are some larger plaques on the back of my neck luckily covered by my hair most of the time. This also helps obscure the larger plaques behind my ears. Otherwise there is some psoraisis around my hair line and two spots behind each nostril. The last two is one tiny spot growing right in the corner of my left eyelid and a tiny spot on the right eyelid at the point the eyelashes grow from - that's a really awkward one for sure!
And that is it for the most part. I hope this wasn't too upsetting reading for some of you. I wanted to give as detailed an account of my pain as possible so other sufferers can understand what it feels like and know they aren't alone in suffering. This will also help serve as a basis from which I will assess the success (or failure) of future treatments. If anyone has any questions or wish to discuss anything, please feel free to contact me here or through social media. If you were upset or offended by anything raised in this post, you know where to find me.
Thanks!
Robyn
Hi Robyn, I'm so sorry to read that you're going through so much pain. Your so brave to write about it. Blogging can be really therapeutic and inspiration to others going through a similar situation. I know we haven't spoke a lot in the past but if there's anything you need, blog advice or just someone to talk to don't hesitate to contact me hun. Looking forward to future posts lovely! :)
ReplyDeleteRoxie ♥
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