Pro Tips from the Hound for Living with Inflammatory Arthritis

This is not a comprehensive guide, it is just a few things I have learned since being originally diagnosed with rheumatoid arthritis. I have deliberately picked things which I don't think are usually obvious from the literature and people have to learn the hard way, it might help someone for them all to be in one place. I will also put this up as a separate page.

These tips only relate to inflammatory arthritis, not osteoarthritis (the difference is here) although that said some of the other causes for swollen joints are bloody scary. Don't take this as medical advice, get professional help. In the UK, your GP/111/walk in centre/A&E/999 if an emergency. Goddess I can't believe I have to say this because who would take advice from a bloke pretending to be a dog on the internet? These tips are things from my experience intended to help people navigate the experience.

So here we go with the actual tips.

Inflammatory Arthritis is an auto immune disease and they are unpredictable

Literally, don't think you're doctor is hopeless if they can't always tell you what the disease is going to do to you. It's not them, it's because it's impossible to say. I spent 25 years as a mental health nurse working in the branch of medicine which is the most Cinderella one and even there you could surprise people by telling people what was likely to happen because disease process and human responses are well established. Because that's how illnesses go, the diagnosis means it's going to do basically the same thing every time. But not auto immune diseases which like to hide and then surprise you.

Inflammatory Arthritis doesn't always look like what the books say

This is a biggy, once you start reading you keep noticing people saying that they get things happening which must be the arthritis but their specialists don't think they are. For example a woman who sometimes can't lift up her left arm. She gets frustrated because the rheumatologist tells her it's because of her age (it isn't, natural ageing is a progressive irreversible process and would not explain it). Honestly this is so frustrating but again it's because the illness plays tricks and does odd things. My own tattoos keep rising up as if the needle went too deep then going back to normal, but my consultant, while interested, can't connect it to arthritis.

Health professionals find it difficult to understand the experience

I phrased that quite subtly for me didn't I? In people's accounts you notice over and over again people say it's like health professionals don't get it. I can't think why anyone would specialize in rheumatology and it must be heart wrenching. Health professionals want to help and when you have a disease which is refractory but not fatal, they don't have a script. The closest I've got to a solution to this is to keep stating what my priorities would be and then suggest possible ways to get there, but I don't have a solution really. 

Take the medication and tell your provider if there are problems

This one is huge and is the one health professionals will totally get. The medicines used in arthritis are completely freaky and have some horrible side effects. There are ways to change how you take them or move to different ones and your team will be well used to this, so don't hesitate to say. As a mental health nurse I made a point of telling every man on fluoxetine that it might stop him getting a hard on but not to be ashamed to tell his GP.

We all know that living as healthily as possible will help arthritis

But it's easier said than done to get there. Being a healthy weight, gentle exercise, a sensible diet and stopping smoking will all help. The other danger is of over vigorous exercise - the trick to get gentle exercise is to go for things meant for seniors and ask if they'll let you join if you're too young on paper. Sorry about this, but that's the truth.

There is no alternative remedy for inflammatory arthritis

The practitioners of So Called Alternative Medicine (SCAM) are well used to targeting people with emotionally difficult illnesses with poor or doubtful prognoses, such as cancer and arthritis. In addition to homeopathy, chiropractic, acupuncture, Chinese medicine etc, there is a flood of bizarre diets and methods supposedly to treat arthritis. They don't work. I totally get that you're desperate but take the  prescribed tablets and live healthily because they're the best and only chance you've got. Because what the practitioners of SCAM want you to forget is that Methotrexate caused a revolution in health care, can stop cancer in its tracks, and actually preserves your joints. No amount of taking homeopathic remedies will do that. Again, if you are poor and your choice is methotrexate or nothing, there are ways to optimize the dose and side effects.

Do things that help

Despite there being no alternative remedies you may find things which make you feel much better. A lot of people say this about swimming and while I can doggy paddle (ha) my only sorrow here is that I am frightened of swimming pools so that's out for me. My own arthritis is psoriatic and while there is no apparent mechanism for it to work, I have found that like psoriasis, direct sunlight helps my joints like nothing else. I recommend you do not try this: I am aware it is dangerous and will kill me but have made the decision that that it is preferable given my quality of life, even if this would be considered an unwise decision.

Be prepared for arthritis's effects on unexpected areas of your life

Because nobody ever actually says it but feeling like you inhabit a crumbling carcass really has an impact on your sex life. Again, I don't have a magic answer to this one.

Don't keep your arthritis quiet

Make a point of telling employers, insurers, lenders, and pension providers. I don't mean telling everyone as if you're a vegan but be upfront if they ask. It can help since you may count as disabled and due some adjustments. Some of these vampires may have given you a contractual obligation to tell them these things and insurance may not pay out if you don't. Even though people with arthritis are living longer there is still impact on life expectancy of up to ten years (yeah, they don't tell you that one either). Pension providers are gambling on the odds and if they think you are likely to die young it can work to your advantage with these people in getting a better pension.

Ghoulish, I know, but there was no way I wasn't going to find one advantage.