2kun2686 karma2020-07-18 12:18:23 UTC
Physical pain is very much there. And it is increasing every month. Along with pain my movements are significantly restricted. I try to be on drugs as less as possible. So often when the pain makes me numb i take NSAIDS. That often can me once a week or once in two weeks or twice a week. my doctor has refused an appointment for more than two years and asked me to accept the fact that things will be worsen rapidly. So i take pain meds and most of the time it gives me some relief.
Talking about mental pain, it was very hard. Initially it was hurting more than physical pain. But after i started meditation i started managing mental pain better. I have also started studying Vedanta philosophy. Meditation and vedanta has helped me to accept things as it is. It has given me a complete a new perspective towards universe. So for past few years I'm not suffering from mental tiredness or pain.
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2kun2435 karma2020-07-18 10:14:45 UTC
Is it the physical and mental pain that you're referring to by 'double'?
2kun2201 karma2020-07-18 12:07:47 UTC
Biologics is expensive and the law in my country doesn't support health insurance for any genetic disorder. That's one of the reasons to not having initially right after my diagnosis more than a decade ago. I was very depressed about the fact that i can't have biologics and continue living in pain.
Later i realised even if i have the money to pay for the biologics I don't want to have a compromised immune system. So the reason to not having biologics is mixture of both.
I know people on biologics have for doctor visit for side effects from Biologics than for AS. So i choose to live a healthy life with lot of pain pain a pain free life with many infections.
Edit - this post is not to discourage people from having biologics. Rather I always encourage people to have the treatment. Refusing it is absolutely my personal opinion. It is an AMA, so i have decided to share what i feel about it when asked.
Update - I had a chance to talk to my doctor this morning and told him about this post on reddit. After hearing from so many people with biologics and how it changed their life i may consider to try it out. He has asked me to wait till the pandemic is over. Also confirmed me there is support program for Adalimumab that he can help me with.
2kun2175 karma2020-07-18 13:02:38 UTC
It is very tough both physically and mentally. Be gentle. Try not to judge the person by his/her pain. But remeber to ask about the pain level. Please encourage him/her to stay as active as possible (don't push). And try not to skip a rheumy appt.
You can always have look at following links to educate yourself and your family.
2kun2132 karma2020-07-18 14:50:06 UTC
Wow. That is a bold claim that people in biologics live longer. That inspires me. I value your word. We have some program run by NGO to have biologics at lower cost. AMA post is slowly convincing me to give biologics a second thought. Thank you.
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