I (32M) have Ankylosing Spondylitis for 18 years. AMA
Hi. I'm a 32 years old male. I have Ankylosing Spondylitis for more than 18 years (If you don't have much idea about the condition feel free to have a look at the YouTube link at the end of this post). I have literally forgotten how it feels to be without pain. This condition has somehow restricted most of my physical activities. It definitely has a huge impact on the quality and most of my choices in my life.
During my school and university days (I was undiagnosed back then) I skipped most of the classes because of immense pain. I have up played almost all outdoor sports by the age of 20.
It's a progressive condition. There's no cure. Immune suppression can help to reduce the speed of the progression. And that has its own consciences, so I've rejected immune suppression (biologics). I have tried my best to stay as much active I can be. Staying active helps to reduce the progression of the condition. Now I'm 32 and I find it very hard to stand straight. I'm in a hunched back posture most of the time.
I've been in immense pain all over me for almost two decades now. Because there are no external symptoms (no swelling or anything like that) nobody around me bothered. Now that I have this hunched back posture, and can be seen from outside that something is wrong in my body. So I get a lot of attention and people around me keep asking me. I'm used to the pain and the limitations come from it. But I'm not used to this unnecessary attention that I'm getting lately.
If you are still reading this feel free to AMA.
Please excuse my English skill. As you can tell, it is not my language.
More about Ankylosing Spondylitis - https://youtu.be/qmE5lxUVtmE
[Update - There is a flood of questions that i was not expecting. I'm trying to answer every question in detail. It may take a while but if you've a question I'll definitely get back to you]
Is it the physical and mental pain that you're referring to by 'double'?
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.
Can you explain in more detail Vedanta philosophy and meditation and how they have helped you with AS? I've never heard of Vedanta.
Vedanta is a physiology core of Indian spirituality. It is a more than 5,000 years old philosophy. There are many branches of Vedanta philosophy. The one I'm studying is called "Advaital Vedanta" (Non dua Vedanta). l It says the world is one and it is called "Brahman". And the world we see and feel is just an appearance in ignorance (it is called "Maya"). And ignorance leads to all suffering. Only knowledge can remove the ignorance (maya). Vedanta helps to gain that knowlwdhe. It is a huge subject and i know i didn't do any justice to explain Vedanta Philosophy. If you want to dive deep there's a podcast called "Vedanta Talks". It may help you.
Vedanta and meditation helped me not to get carried away anything in life. It is not just my condition by i every aspect of my life. It is very hard to explain in words.
What advice would you have for someone who has a family member with this condition? We recently discovered someone very close to me has it and im not sure what if anything I can do to help.
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.
Yeah, as someone with AS, it is difficult to actually do anything other than to be supportive and say "that sucks" when you can. Planning activities can be a good thing... Any kind of movement and exercise helps me a lot. The funny thing is that you might think that movement and exercise or painful for people with AS, but at least in my case, any sort of activity actually helps. It's the sitting still that causes stiffness and pain.
Why did you reject using Biologicals?
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.
If you ever can afford the biologics, you really should consider using them. I’m a nursing student and have AS, so I have focused my clinical research on AS. The immune suppression is SO minor—patients might have a cold for 5-7 days instead of the usually 3-4, or might need longer rounds of antibiotics to kick an infection (10 days instead of 7, that sort of thing)...but studies show that patients with AS/RA/PsA who use biologics not only live longer, but have a higher quality of life than those who do not. It is the only way to prevent disease progression.
I’ve tried every biologic approved for AS that is available in the US, the side effects are minimal. The worst I’ve had was on Remicade (more frequent sinus infections, but I had sinus problems before AS) and higher susceptibility to UTI while on Cimzia—which is stated as a possible side effect and can largely be negated with increased personal hygiene practices.
Edit: I don’t know what country you are from, but most pharmaceutical companies have prescription assistance programs to help patients cover costs. That might be something you could look into if you are interested.
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.
I’m on biologics for another condition and if you can give them a go, you absolutely should. I like you was initially concerned about compromising my immune system, but it’s about balance and deciding how you’re going to get the best quality of life, rejecting them outright for fear of the potential side effects is the wrong way to look at it, especially if you’re suffering everyday. As it stands I’m now 5 years down the line, live a full life and any side effects have been a non issue thus far - I wish you all the best!
Thank you for sharing.
Thank you. I'll consider this if needed. I appreciate your words.
I was diagnosed with AS a few years ago (currently around the same age as you). It was pretty minor and manageable, but then I went through an acute episode of pain that was unbearable. Everything I did was painful, even staying still. It lasted about 2 weeks. I went to visit my rheumatologist, and we ended up making the decision to go with biologics. I am fortunate enough to have the cost covered (a mix of work and my countries health care), and young enough that I decided to take the risk of having a suppressed immune system.
The pain was gone within a few weeks of my first injection, and has never been back since. I inject myself once a month (no doctor supervision needed) so it's pretty non-intrusive. I definitely live my life a bit more carefully now (especially in covid times) but I have yet to have had a single bacterial infection since, and maybe only a slight increase in number of colds (maybe, hard to say without keeping stats). Other than the covid fears, it's impact on my life negatively has been negligible. I know someone else my age that also uses biologics and I'm pretty sure is also doing very well.
That's definitely not to say they are for everyone, and there is always a risk. Age in particular is a factor - my mother has AS and started using biologics, but had to go off because it was potentially causing a bunch of problems. But at your age, I'd urge you to at least reconsider it, assuming you can figure out the cost problem. I don't know your level of pain, but if it's anything like what I went through in my acute episode, I wouldn't wish it on my worst enemy.
Also, thanks for making this post and speaking up about it. It's so rarely talked about and so far outside the public discourse that it's nice to see it being discussed. Did you know Dan Reynolds, lead singer of Imagine Dragons, has AS? Fun facts.
I wish you all the best. Thank for the fun fact. No i didn't know about it.
I would say if you're struggling to the extent you are, perhaps try reaching out to Dr. Reveille at UTMB (https://med.uth.edu/internalmedicine/faculty/john-d-reveille-md/). He and his colleagues run the world's largest study on this illness, split between the US and China I believe, and it's gone on for probably 15+ years. Any past or upcoming treatments, they'll know about, as well as having a ton of data from thousands of AS patients.
They may be able to give you some recommendations based on your circumstances for how to treat your particular case. Or perhaps persuade you to try biologics or some other treatment that you may not be aware of or have rejected for various reasons. It doesn't sound like I can persuade you to rethink biologics, but if you've rejected them, Reveille might have other ideas (also bear in mind that not all biologics are the same, there are quite a few on the market now, with some key differences).
I'm always open to ideas and i never shut a door. This AMA post has already made me rethink about Biologics. I'll definitely have a look at the link. And i thank you for the comment.
Knowing people who have side affects and experiencing yourself are two different things. You should at least try biologics. You're already living in pain, what do you have to lose? What if you are not one of the people who gets side effects? Don't ignore something that might be able to change your life. At least try. My family has AS, there are ways to manage it. Also have you considered moving to a country that does help AS?
Thank you. I will give it a thought and maybe talk to my rheumy about it. I've never considered living out of the country.
It's very unfortunate that health insurance doesn't cover biologics. A country leaving people to suffer like that is really fucked up.
I've been taking biologics for years with no side effects. No infections at all and blood tests are all fine. Biologics are targeted and only supress a part of the immune system. It isn't AIDS. You'll probably be fine.
Of course it's your choice, but they're the only thing that worked for my condition. Maybe wait until the pandemic ends, but imho you should reconsider your decision if you can afford them.
There are lot of things that is fucked up in this world right now. And it's just one of them. If I stretch my pocket i will be possible for me to afford it. But I'm not sure how long. But i can definitely give it a try to begin with. Your story is inspiring. Thanks for sharing.
Have you developed any secondary inflammatory diseases like Sjögren’s syndrome or vasculitis? I wish I could go back to just dealing with AS. Now I’ve got AS pain, plus my tear ducts and salivary glass don’t work. So dry eye pain, dry mouth, and pain swallowing. Oh yeah, and my liver and kidneys will occasionally turn off. Oh yeah, and hemorrhoids, random numbness, headaches, and constant stomach pain. Sorry to complain. I’ve been dealing with this for 25 years. This last year has been a flare up that makes all other flare ups seem like nothing.
I can feel you. Thankfully I'm only dealing with AS till now. With occasional other symptoms. None of them are persistence. I hope you find some relief soon. I'm extremely sorry that we all have to go through this. And please know that you're not complaint. You're just sharing your experiences. Please don't be sorry about it. I wish you all the best.
How long did it take you to remember how to spell "Ankylosing Spondylitis"?
Haha, it took me at least few weeks as i can remeber.
Was diagnosis difficult? Was HLA-B27 testing the main diagnosis?
Definitely yes. They say avarage time for an AS diagnosis can go upto 10 years. It took me more than 6 years to get diagnosed. I tested positive for HLA-B27 that lead to my diagnosis. But i know people tested negative yet diagnosed with AS. Less that 10% diagnosis don't have HLA-B27 positive yes they have Ankylosing Spondylitis.
I think the toughest time both physically and mentally was before the diagnosis. None believed that how much pain i can some. I remeber a doctor said me that i have this pain in my mind. Not to mention countless misdiagnosis.
Can you describe your symptoms as they progressed? I understand that your posture has changed probably partly due to the fusion of your spine.
Lower back pain and si joints pain has been the primary symptoms. Later the pain started covering upper side of spine and started having signs Stiffness gradually. Other symptoms are pain in chest, elbow, jaw, knee, ankle, eyes etc.
You're right. The posture is mostly because of the fusion.
In your experience, what does “relief” feel like? Is there a euphoric feeling when your pain goes from 10/10 to like 7/10?
Well, my body feels less heavy when pain comes down. Also muscles feels a bit relaxed and I'm able to move more than I'm used to. The fire that is always there in my spine and hip feels cooler.
My Uncle has this and he has found that his pain is a lot less in warmer climates, have you found that temperature affects your pain much?
Definitely yes. Always summer is better. I live in a tropical country. So I'm grateful in that way. We have a very short winter that it not strong.
Funny, I have AS as well, I always have less pain during winter.
Every person has their own experience. Even mild winter can be very hard on my joints.
Do you have a romantic partner ar this time?
Yes. I was in romantic relations during this time. It can be very hard to find a partner who can accept this (not impossible). My ex partners were very understanding. I think proper communication in the beginning is very important.
Mick Mars of Motley Crue also has it. I always found it kind of inspirational that he fought hard and is still going. Have you seen The Dirt?
Nope. I haven't seen it.
Michael Slater also has AS. He had very successful carrier in professional sport.
Same boat, mate. Sorry.
You should seriously consider the TNF inhibitors they're suggesting you take. I assume that's the "immune suppressants" you mentioned in the OP? They actually work. It reduces the pain a bit, after a few months. Only annoying thing is they keep testing for TB every six months.
Also, you tried pregabalin? 'cause, that makes a huge difference in my ability to function. Gabapentin fucked with my head, but pregabalin has virtually no side effects (at least for me - this differs on a patient to patient basis).
I'll give it a thought. I've been talking pregab in past. Not anymore. I started 75mg and ended up having 150 ER in couple is years.
My Dad has this. Just hit 60 and still has days where he can avoid the wheelchair. So my question is "what is your line?" When will things become too much that you will wonder if it is worth continuing.
It is great to hear that your dad can still spend days without wheelchair at 60.
Worth continuing what? Can you please explain what do you mean by this?
Are you a fan of Zach from the Try Guys? He has the same condition.
No I'm not.
Hey OP, this may be a dumb question, but have you tried all the various NSAIDs to see if one might work for you? My SO has AS, and takes Celebrex 3x/day which keeps the pain away. It is also COX2 selective which reduces the risk of stomach ulceration. She tried four different medications before she found one that worked.
That is a very interesting question. I've tried different drugs. And found paracetamol with advertisement acclofenac works best with me.
Who told you biologics were dangerous? Can you get affordable access to them? I have never heard of a person having severe side effects. The alternative is to slowly cripple yourself and live in a world of pain. I have AS. I suffered for years in incredible pain waiting for a diagnoses. I decided to try the biologics. They are a miracle. I have been on them for years and sometimes I even forget I have AS anymore. You might want to give them a try. Sure there are some nasty potential side effects, but you find those with many life saving medications. Maybe some people who have experienced side effects that outweigh relief from AS will speak up on the thread. I have never experienced a single side effect, and I am able to roll around and wrestle with my kids now. The longer you wait the more fused your spine will become and the less benefit you will see from taking the medication. Before I was on the meds they were just throwing Vicodin and Ibuprofen at me. Those were much more dangerous than the biologics. I just thought I would give you my example. Stay strong. Take care of yourself.
Your story is inspiring. Makes me rethink.
People who have been on biologics for more than a decade told me. I can afford them. To begin with I've the money. But if i want to continue (which i have to) with biologics I've to find a support program.
You have to get on a biologic or it’s very unlikely you’re going to prevent bone fusion. I have AS and have been on Humira (a biologic) for 4 years. It has got me my regular life back. They are state of the art for treatment, and to forgo them is pretty foolish, to put it frankly.
Thanks, I'll reconsider.
Hey man I also have ankylosing spondylitis. I was 2 years into my Navy career when I was diagnosed. I was 20 at the time and was medically discharged 2 years later. I'm 25 now. It kinda sucks knowing that as a young (used to be abled body) person, doing daily tasks such as getting out of bed, getting up from the toilet, or getting out of a car as become a battle with pain, but it's been a while now that I'm used to it. The VA is able to prescribe me Humira to help slow down the progression but the pain is always there.
So my question is: why do you choose not to take medication? Is it because of the immune suppression? I obviously don't know your whole situation, but for the most part I haven't had any serious side effects so far. I did have to get off Humira ever since covid-19 due to fear of having a weakened immune system though so while I am corona-free, I am in intense pain.
Yes it's because the the suppression. It was a trade off. Maybe I'll reconsider after do many good experiences in this post. I hope you find some relief soon.
My mom got it, too. She was in her early twenties when she was diagnosed. She is still going strong at 64! No wheelchair, nothing. You wouldn’t even know she’s got it when you see her.
Luckily I had my DNA tested and did not inherit it from her. Are you the only one in your family to suffer from it?
I'm happy to hear about your mom. Very inspiring.
My dad has RA. my brother is symptom free. He's 34 now.
Are you able to work?
Hello, fellow warrior.. A.S. is no joke. I had it for 18 years before diagnosis, as it was considered a man's disease and I am a woman. I got told to lose weight, and that it was fibromyalgia, and sometimes that my pain wasnt real. The irreparable damage to my spine and mental health with 18 years not knowing what was actually wrong is my biggest regret. I I urge everyone to push and advocaye for your own health. If I had done that, it'd have been discovered faster.
I still work full time. I had kids. Life goes on and it hurts whether you sit still in pain or try to do normal activities. Try to keep yourself busy mentally. Video games help me escape my pain sometimes.
Because of random infections,, and now Covid I've written off taking any more immunotherapy drugs.
Hey, i had symptoms for 6 years before i got the diagnosis. It was though. I don't know how tough it can be to go undiagnosed for 18 years. I can only try to imagine.
I was working full time (remotely) till last ll month. I lost my job and currently working as a freelancer.
That is a very good point you've mentioned. Keeping mind busy can be an easier way to stay away from pain. I was reading a book on similar topic called "flow" few months ago.
I hope you can get back to immunotherapy soon.
I was diagnosed with this 2 years ago. I'm 23 now. I joined swimming and used to do it almost regularly. Amidst the pandemic, I started going for a jog since everything else is closed. But every step of the jog hurts. Do you think jogging is a right thing to do?
One of the biggest bummers is that if try to turn over in my sleep, bam, there's a sudden pain and I'm up for 15-20 mins. Do you sleep in a particular position that you've found useful?
I wish you all the strength in the world, my friend. We'll get through this :)
Walking, jogging and running can be very painful. I never find it comfortable. Riding a bike is better to me.
I can understand your pain in middle of the night. I've gone through the same at some point. Now I don't move once i fall asleep. I've developed this habit in years. It is very painful to move once I'm laid.
Thank you. My best wishes.
Sorry to hear this, I can relate because I have a similar condition that I got a spinal fusion for which has eliminated the pain but more or less after an hour or so of heavy labor will come back. It's really tough to have it happen, is it in the area of your cervical, thoracic, or more in the lumbar area? I had Scheuermann's Disease so I know things like this can be tough.
Thank you. I hope you find some relief on the other end of three internet. I have no idea about your diese and I'm trying to gather some knowledge about it. But sounds similar to Ankylosing Spondylitis. Misty of my pain and fusion is at lumbar area. Also the SI joints. There are occassional pain in upper are as well.
I had never heard of Ankylosing Spondylitis until last year when my son was diagnosed with this condition. He was 22 years old at the time. He had spent several months in severe agony and couldn't even get out of bed to go to the bathroom at one point.
He also suffers with epilepsy and is on a variety of medication for this. Because of this he is somewhat restricted with other medications such as pain relief.
Reading your symptoms and the varying types of pain you suffer is exactly what my son is describing to me on an almost daily basis. Some of the pains don't seem to make sense because of where it is affecting him such as his toes, elbows etc but reading somebody else's experience makes me understand a little more just how debilitating this condition actually is.
We are fortunate to be in the UK and have access to many types of treatment which my son has been offered. He has gone from pain killers and steroids to anti-inflammatory medication. He is currently using a fortnightly injection into his leg which seems to be helping him greatly. I do not even know what the injection is as I have no knowledge of medicine at all. I still do not fully understand the condition after months of reading about it.
I just wanted to share and wish you all the best because after seeing what this illness can do to a person I would not wish it upon my worst enemy. I hope you find a way to get the treatment you need long term and can continue to enjoy life.
My question is, does this condition always continually get worse? We have been told there is no cure but nothing about whether my son will deteriorate over time or continue to manage the condition and have a fairly normal life.
Thank you for your comment. My experience is the condition always gets worse in long term. There are certain period of remissions when them pain and symptoms reduces significantly. But it always comes back with even more intensity. I believe I've i entered 30's my condition started working faster than before. Which leads to significant Sydney l stiffness. Stiffness becomes a major part along with pain lately. But this condition his everyone differently. So it doesn't apply to everyone. I wish your son all the best.
How would you describe the pain? Dull, sharp, where, etc.?
You state that there is no cure. Is there still research towards it?
My English skill or is not good enough to justify the pain I'm talking about. I'm still trying my best to explain it.
Suppose you're laying upside down. Someone put a huge brick on you that covers your entire back. Imagine that brick will be always there on your back and you are tired up with the bed and you can't flip from being upside down. And someone is adding a new brick every month. This is one pain. I'll say this is the primary one.
Other than my back there are pain in other parts of my body. Every pain is different. Sometimes I've pain in my sturnam (middle of the chest) feels like someone pinching me with a niddle. It makes breathing so painful.
Sometime I've pain in my eyes makes me feel like hammering and burning at the same time. There are pain in knee elbow, jaw, shoulder. They come and go. But the main pain (mentored above) is always there.
Yes there is no cure yet. You can only manage symptoms by managing immune system (as it is an autoimmune disease) i believe there are research going on. But i don't have any details about them.
For my sister with AS her biggest challenge (before starting biologics) was getting out of bed in the morning. She would be so stiff & sore after being still all night.
What motivates you to get up & moving in the morning?
To go to pee. My bludder is so full every morning that i need to unload it asap.
Morning pain and stiffness is a typical AS symptom and i also have it for years.
I wish you and your sister all the best.
IM 16 and have JA and I use methotrexate and humira and was wondering if either of those have ever helped u with pain management?
I was on metho for brief period. I didn't feel any difference and my blood report let me stop the drug. I've never been on humira.
I'm sorry to hear that you're going through JA. Sending love.
So sorry to hear about your condition and how much pain it has caused you.
I have a good friend who was diagnosed with Ankylosing Spondylitis several years ago. He is now in his mid 30s. He is very active and fit and was very much in the same boat as you (feeling constant pain and being pushed to use stronger and stronger drugs). While he is still in pain, he found that changing his diet had a massive impact on his well-being and overall level of pain.
His key was to remove starch from his diet. He did explain the rationale behind it once, but I don’t know the details. It made such a difference in his ability to continue with sports and physical activities that it may be worth trying for you.
Have you tried any changes to your diet or lifestyle to help combat the symptoms?
Hope you find what helps you get through the day! Sending love from Canada.
Thank you. Low starch diet can help people. I've tried the diet for a brief period but find it not very practical to me. I was always very hungry. I think i gave it up too early.
Though I have shifted to a vegetarian diet and find it somehow helpful. I also quit smoking weed and tobaco and drinking alcohol. It has definitely reduced my inflammation.
I too have it, 29m and does my father 64m, I have daily pain that never goes away. I normally sit on the 5-6 pain scale without anything else. Same for dad, how well do you handle regular day to day pain plus the back pain?
I got used to it. 5-6 can be a easy day for me.
I'm so sorry to hear both of you are going through a lot of pain. Hopefully you'll get some relief.
My uncle has this condition. I got tested for a gene which it turns out I have which means I have an increased rush of developing this. Is there anything I should be looking out for?
I guess you're referring to HLA-B27. If that is the case don't worry until you've the symptoms. Just because you are treated positive doesn't mean you've AS. Typical symptoms can be pain in SI joints and lower back. If you've the symptoms please visit a doctor.
My wife has an auto-immune condition that comes with chronic pain, but they're not sure exactly what it is yet. Lupus seems to be the primary candidate (and yes, we know the 'its never lupus meme) but no firm diagnosis yet.
What do you wish your significant other would do for you, that you have trouble communicating about? What advice can you give to someone living with a person with chronic pain that might not be obvious? Or even should be obvious, but still isn't done?
Sometimes It can be very hard and frustrating to live with a person with chronic pain. Proper communication can be very helpful. People with chronic pain hurts so much that it is not always possible to share every aspect of it. Sometime it can be overwhelming. You can help your partner to make a coffee. Try to help her with little things. Like grabbing a remote. (I think you're already doing it). Every little effort is appreciated. Be gentle with her. It is not possible to truly understand the emotional aspect of having chronic pain unless someone has it. She's going through a lot. Try to keep this in mind. My best wishes to both of you.
My Dad has this condition. He is 70 and thankfully he has never and still doesn't use a wheelchair. His spine is completely fused, he didn't get a diagnosis until he was 40 (none of the doctors he saw in my small country had ever really heard about it before then). He doesn't have great lung capacity as they can't inflate as much as a normal persons, as his ribs have also fused but thankfully to a lesser degree.
I have seen your answers before about meds not being covered for you but my Dad has been on Cimzia for the last few years and it's helped him an incredible amount. His pain is much less than it was. Is there any way you could avail of Cimzia or something similar? Also, do you swim? That was the best recommendation for my Dad. Best of luck to you. As my Dad's primary carer, I'm all too aware of the difficulties you face.
Thank you. We have similar in our country. I do swim. It is the best thing i do everyday. I wish you and your dad all the best.
Any tips on dealing with pain constantly?
About 8 months ago I developed extreme sciatica coming from a lower back injury.
The last year has been me pretty much unable to move in extreme pain.
I’m struggling to cope at times, seems to be no end in sight.
What has helped me deal me pain mentally is to accept the fact. And don't be judgemental about it. That doesn't mean you ignore your emotions. Rather take it just an emotion. It may take a bit of time.
There's a book i read named "Happiness Trap". It has nothing to do with chronic pain. But it can help you with constant pain mentally.
So deal the physical pain plate follow your doctor's or therapists advice.
All the best.
What makes you happy?
Floating in water for longer period.
Do you live with your parents/alone/shared appartment? And what do you work?
I live in a shared house. That includes parents, brother and his family. I was working remotely for last few years. I'm a content creator managing news portals. I lost my job in June. Currently working on a project as a freelancer.
My fiancé (f29) suffers from this as well. She’s on biweekly cimzia, while also taking holy basil, turmeric and glucosamine daily. CBD oils really help her specific joints that ache too.
Do you have any homeopathic remedies or suggestions you’ve found have helped?
I've tried homeopathic treatment couple of years. I didn't find it helpful.
Have you looked into disc replacement?
Not really. It can be very expensive. Law in my country doesn't provide health insurance for any generic disease. And Ankylosing Spondylitis is a genetic condition. So all my treatment has to be paid by me. I'm not financially strong enough to do it.
Or steroid injections?
Steroids definitely helps my pain to some extend. But How long can you be on steroids? Worst part is when you wear off from steroids. Hero to zero in a few days.
Have you experienced UVeitis as a symptom? I had 2 big flare ups of UVeitis this year and it was absolutely no joke. I hear that it can be related to ankylosing spondylitis.
Once. Just a brief one. But I've seen my dad having uveitis since my childhood. He has RA. It is definitely no joke and if not treated immediately vision can be lost permanently. Uveitis can be related to both AS and RA and many other autoimmune diseases.
I got tested for this a while ago and it absolutely scared the living hell out of me knowing what the disease is about, so I hope you're doing as well as you can be.
What were the first symptoms you were getting before your confirmed diagnosis?
Thank you and I'm doing really well. today i played football for more than 20 mins after long time. At the age of 14 i started having pain in my SI joints. That was my initial symptoms.
It can very overwhelming in the beginning. My advice will be not to get carried away by all the information. I wish your all the best.
Hey I have AS, I have mitigated a lot of pain mentally and physically through meditation, yoga and being present. Being present, in the now, seems to be the most critical aspect of all this. I am working on increasing my mobility and straightening my spine. Progress is slow but it seems to be getting better. I have also rejected immune suppression methods. If you or anyone with AS would like to talk about anything or how I use meditation and yoga to combat this disease, feel free to message me.
My question to you is: when did you develope this condition? I had a severe AS attack when I was 15 years old, I was paralysed in hospital for 2 weeks. I'm now 23 and still living. Life is beautiful, enjoy it.
Hey, sounds like we're on same boat. I will definitely want to know more about your experiences and stay in touch.
i started having random SI joint pain at 14. I had an accident (hit under my right eye) and i started having extreme pain in my back that made me bed ridden for several weeks. I believe that was the trigger.
What pain meds are you on?
Don't get sucked into the opiate spiral friend!
Unless you already are :/
Currently I'm having paracetamol and aceclofenac when hurting. Otherwise I'm only relying on swimming, yoga and cycling.
I was very much there. It took me years to come out of that spiral.
Thats seriously great to hear.
Good luck. (We just went over this in school and how much of a pain in the butt it is to give Anesthesia to patients with AS )
I have a background in both yoga and medicine. Can't find you a source on this immediately, but one relatively well-known yogi, pretty sure he's Australian, has your condition and has a near-complete handle on it through a rigorous Ashtanga practice.
I realize this condition evolves and may be more or less severe by case. Still, may I suggest digging into that practice much as possible, preferably with a trained yoga therapist.
Thank you. I'm already doing yoga. If you can find any resource that can be helpful please feel free to share.
Does weed lessen the pain at all?
I was a chain smoker at one point. Smoking weed definitely helped with pain when high. But when the highness comes down to normal (i don't know if that is right English) pain used to struck me twice harder than before. It was not worth. So i quit smoking.
Sorry you have to manage such a debilitating condition. Have you explored yoga as a way to manage pain? A friend of mine has AS and found yoga to be one of the only things that helps (he's now a full time yoga practitioner).
Thanks. I have been doing yoga abd swimming for most of my life to start away from pain. But the physical pain is getting top of it lately (maybe just a flare that is longer than usual). I also ended up having a teachers training course on yoga in 2018 but never started teaching.
Do you find high dose Vitamin D helpful?
Direct Sunlight helps pain. Not sure if it's because of vitamin d.
Have you heard of Pavel Kolar?
No, but now i know him.
How does it feel with ”double pain”?
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