Sunday, 12 October 2014

World Arthritis Day: Arthritis & the extras.

So this is my second time writing a post for World Arthritis Day, an event that I never knew that I would be writing about, as many others would have never have thought they would do either & my first blog post can be found here.

However, this year I thought I would focus on the often missed “extras” as many often see arthritis as just a disease that you have in your pension years that gives you “Creaky Bones”. When in a matter of fact that is only the headliner, the “star attraction” & there are many added extras that come with it & that these “extras” can vary from type of arthritis, down to the individual, with people experiencing the same disease quite differently.

For myself personally, I have Psoriatic Arthritis (along with other conditions) so I will be referencing my experiences & my specific type of arthritis.

As well as inflammation affecting the joints, there can be inflammation affecting the ligaments, cartilage, other tissues & even an individuals organs. I often have inflammation affecting the muscles & cartilage in between my ribs & have had many bouts of tendonitis (inflammation around the tendons). I’ve also have had bursitis which is inflammation of the synovial fluid in the joint, none of which did I know could happen when I was first diagnosed.

Also a major factor is fatigue & this occurs due to elevated levels of inflammation in the body.

The best way to describe it to someone who doesn’t have the disease is to think of the worse bug you have ever had & how exhausted you felt. You were exhausted because your immune system is going into overdrive fighting the bug (so obviously hence why you're tired) & when someone has psoriatic arthritis, their immune system is overacting but with no infection present.

People don’t know exactly why the immune system is overactive, the general consensus is that it’s likely caused by a genetic fault &/or triggered by an infection.

Because my immune system is overactive, I have to take a drug called Humira which is an anti-TNF to suppress my body's immune response, thus lessening the inflammation. For some people they find that it halts the active inflammation & for others a level of inflammation remains which seems to be what has happened in my case.

I take my Humira with the use of a subcutaneous injection (didn’t think i’d be doing that) & as a result of the medication it means that i am immune compromised, didn’t think that would happen either. Obviously, when you're immune suppressed you're more susceptible to infections & this unlocks a whole new level of possible sucky extras. There is some suggestion that people with arthritis may experience added dental problems & for me this has certainly been the case where I had some dental work completed & all seem successful.

However, it is believed that a small gap had remained & due to my immune compromised state, a cyst formed which later became infected. Due to the infection I had to come off my arthritis medication in order to not compromise my immune system further. However this meant my arthritis was uncontrolled for 6 months whilst my dental cyst was diagnosed, treated & I recovered. As a result of being off my medication for that period I now experience pins & needles in my feet & legs which they think has happened because of damage caused from high levels of inflammation in my system. I am currently awaiting nerve tests to confirm the cause & extent of the damage.

This only briefly highlights some of the issues that I have experienced, one individual with one type of arthritis & is by no means the complete story. Many won’t experience what I have, they may experience different symptoms depending on the type of arthritis but I am writing this to highlight that arthritis isn’t as simple as just “Creeky Bones” & is still greatly misunderstood by the general public.

It’s not surprising when there are between 100 & 200 different types of musculoskeletal conditions depending on reference cited & many people still view it as a disease of that you get in your elder years. People still don't understand the great impact arthritis has on someone’s health & they often miss how complex a disease arthritis is & that although you may not see an effect outwardly, it can have a deep effect on the individual.

The public needs to be made more aware of the complex nature of arthritis so that to better understand some of the difficulties someone with arthritis may face. To also understand that there needs to be more research conducted & that arthritis research still receives markedly less in funds than other conditions. There also needs to be a more inclusive nature in the campaigns that arthritis charities conduct, as too often they focus solely on older people with disease & when charities do focus their campaigns, they are often at children & teenagers, often missing those in between. This will help to change peoples’ perceptions towards those that are not elderly & have arthritis & may also help with some of the hostility that often these people may face.

Finally if there is anyone reading this that has been newly diagnosed with arthritis, don’t freak out. I know that is harder said than done but arthritis is really very unique to each individual & often people don’t experience the complications I have. However, I have no doubt that it won’t be as you expect & my best advice is don’t panic, don’t think you’ll get everything & become as informed as you can.

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