Every Day

Hi, I just found this community. I'm 16 and I've recently been diagnosed with Polyarticular Juvenile Idiopathic Arthritis. I have 10 out of 12 joint areas affected. Stairs are the worst for me, but even just walking, writing, standing, and literally just existing is constant every day pain. We don't know when this developed, because I've also had hyper joint mobility since I was really young, and that causes pain as well. It's a lot to cope with and I was just wanting to come here to find a group of support. I know others on here probably have more painful conditions, but my therapist keeps telling me to stop trivializing my struggles, so here I am, trying to accept that I am hurting as well.

[Mary-intussuception]

I think you are very brave.

Is this a rare condition? It's one I hadn't heard of.

Maybe you're not actually "trivialising" your conditions. I think of it more as 'positive denial' ! Sounds strange - my pains are bad when I have them, but I have to get on and do what I can or I would become so depressed and get nothing done. Life is for living - as far as we can - isn't it?

I find distraction helps.

I'm sure my pain is not as severe as yours is though, and I hope you are able to find a good combination of analgesia that helps to at least 'take the edge off it'.

Do you have regular Hydrotherapy sessions?

What do you do/can you manage for distraction? I like photography, but can't manage to handle a camera as large as I'd like. Very grateful for times that I can use one, though. I suppose if you're fingers are affected that would make photography tricky also. I get frustrated when I can't write a simple letter - the pain it causes and the time it takes - unbelievable!

After several months of struggling severely I'm reasonable just now so making the most of it - nice to have a short break from severe pain for a while. Hope you get a break soon.

Sending lots of Love xXx

🌹🌹🌹♡

[Hidden in reply to Mary-intussuception]

Thank you

More common is rheumatoid arthritis, but I didn't have the rheumatoid marker in my lab work, so here I am with idiopathic. I'm not sure how rare or common it is. I think it's somewhere in the middle; not rare but not common either.

I basically think something along the lines of others having it worse so I shouldn't complain or acknowledge my own problem. It's not very positive in my case haha. I also have to just keep on doing things. I like that: "Life is for living - as far as we can." It's a good ideal to live by. Just live as much and as fully as we are able.

Oh yea, distraction is key. If I'm left to sit with my thoughts, I get very upset and depressed about my situation, and my thoughts spiral.

That right there is what I do... I think automatically that I'm not the worst one off. I hope the same.

With school, school work, and how tired I am, it's not really on my roster right now, but it is on my radar for when things slow down a bit.

I typically watch videos, shows, or movies. Submerging myself in a video completely empties my mind. Also, I literally don't have to do anything physical, which is a plus because I'm not focusing on my pain as much when I'm not active. Lots of "little" things like that irritate me too. I just wish I could live normally, I suppose.

Here's to making the most of it! That's great you've caught a break! I hope I get one soon too.

Thank you for your kind reply! Internet hugs!

[Hidden in reply to Hidden]

You could also try posting on the NRAS community healthunlocked.com/nras

Most of the members (me included) have RA or JIA so some might be able to help you. Also, visit the NRAS website nras.org.uk/ which has info and advice about RA and JIA. Hope this helps.

[Hidden in reply to Hidden]

I have joined! I am following another arthritis community as well, but this one you've recommended seems more applicable to me. Thank you! I'll check out the site.

[johnsmith]

I suspect that you are under 16 and are saying you are 16 to meet the requirements on being on this site. You need to pass on the interaction on this site to your parents or your teachers for their approval.

You say: "my therapist keeps telling me to stop trivializing my struggles". I do not know what is meant here. Please give more detail. This is important. There is the possibility that you have misunderstood what the therapist is trying to get at.

I do not know what the type of therapist you are seeing is. When you have mastered the correct way to struggle the struggle is actually trivial. It is known in Buddhism that pain is not the problem, but the emotional attachment that we place on the pain that is the problem. So you may have grasped something that took me a long time to grasp.

You say you have been diagnosed with "Polyarticular Juvenile Idiopathic Arthritis". To me this is a diagnosis which can have a number of causes. The "hyper joint mobility" may be part of a cause. You need to get your parents to take you to an Alexander Technique teacher. The Alexander teacher cannot cure what you have. They can help you develop better coping strategies to enable you to have a better quality of life.

alexandertechnique.co.uk/

I suspect that muscle is trying to compensate for the lack of strong ligaments. Your pain may be due to muscles pulling on bone. So it is worth seeing a McTImony Chiropractor to work on reducing the number of over contracted muscles you have.

It is important that you investigate the amount of sleep you need. The younger you are the greater your sleep requirement. Sleep is needed for fine control of muscles. There is a vicious cycle. Pain interferes with sleep. Lack of sleep prevents fine muscle control which induces more pain and more disturbed sleep. The body needs to move for good health. Having too much time in bed is not good. So you need to find a time to in the day to catch up rather than having a very long lie in bed to catch up. This will mean sacrificing time that you want to devote to other things.

Any questions please press the reply button.

[Hidden in reply to johnsmith]

What gives you that impression? I recently turned 16, actually.

She said that it is a common thing that lots of people do. She had an official name for it but I don't remember it, unfortunately. Basically when you think, "Oh this person has it so much worse than I do, I should stop complaining," or something of the sort. Where you invalidate your own thoughts and feelings.

She helps me deal with my anxiety and OCD. I'd never thought of emotional connection in relation to pain before. I suppose I'm pretty angry and upset about it... is that what you mean? I'm unfamiliar with Buddhist theology. I don't feel like I've grasped anything haha.

Yes, it can have any number of causes. That's what the idiopathic stands for; they literally can't pin down a cause. The HJM may be part of it, yes. We just really don't know. I've actually not heard of either the Alexander technique or McTimony chiropractors. I'll look into them.

Sleep is a struggle for me. I either sleep too much, can't get to sleep, wake up a lot, and/or have fitful sleep. I'm trying to figure out a system . that works for me when it comes to my sleep schedule. Vicious Cycle indeed. Very apt description. While I wish I could sleep during the day, I am currently in high school, so that pretty much rules that out. Naps after school also are a no-go because I can't get to sleep until late when I do.

Thank you for your reply and extensive comment

[johnsmith in reply to Hidden]

Thanks for the reply. I have a better handle where you are coming from.

Feelings are in the body. Change body posture and movement and the feelings change. You are right to limit complaining. Complaining alienates people. It also has the effect of making what ever you have worse. This is a matter for you to investigate. As emotions come so will they go. But it is a line that takes a little time to learn and believe. It is a bit unbelievable at present because adolescent emotions are all over the place and many of them you will have never felt before. This is because emotions are in the body and your body is changing.

Anxiety is a breathing issue. That will reduce if the rib muscles relax and the shoulders drop and you breath through your diaphragm. An Alexander teacher can point this out with their hands.

One of the things that happens during adolescence is the change in sleep pattern. You want to sleep later. Anxiety modifies ability to get to sleep because there is something to be anxious about. Cuddly toy presents a soothing aid by touch and sight. Forget about trying to sleep. Trying gets in the way. Do something that slows yourself down. Like reading "The Little prince" by Saint-Exupéry.

Naps after school is actually a good idea because they give the brain much needed rest. They will actually help reduce your anxiety. OCD has a relationship to anxiety and sleep deprivation. I cannot comment further than that. Each person has to investigate themselves to find out how they respond to events in their environment. Note: a kitchen timer can help keep a nap short.

Find out about meditation and mindfulness.

amaravati.org/dhamma-books/...

This is written for people with a bit of life experience i.e. 20 plus so it may not be suitable for you at this point in time. However it will be a useful aid to discuss with one of your teachers.

[Hidden in reply to johnsmith]

Thank you. I'm sorting through how to organize my time and emotions at the moment. I looked into the Alexander Technique, and all the teachers can see are in the UK. I live in the US. Thank you, though.

[helixhelix in reply to Hidden]

You might find that the site that is specifically for juvenile idopathic arthritis is more useful to you....here

jia.org.uk

It's also an english based site, but welcomes everyone.

I have RA, the adult equivalent, and what I can say is that treatments have improved dramatically in last 10-15 years and are improving all the time. So please try to stay positive about the future.

Exercise and mental techniques are important, as are good sleep and healthy diet. But you do also need the right treatment too...

[morphalot]

Hi! I'm sorry to hear you have so much pain and that is idiopathic - things that have an identified cause are usually easier to treat. I've had 5 ops on my spine, bilateral hip replacements and have now been told that the rest of my joints have arthritis. I've also had a stroke (I'm 59). I've been attending a pain clinic but it's closing down at the end of this month. The consultant the referred me to a chronic pain support. Do you live in America? The reason I ask is there's no point in my advising you to see various people of you don't have the same thing in the States. The staff from the chronic pain clinic have started to reduce my drugs, which has been quite upsetting. The third one to go is amytriptilline (anti depressant that also has good effect on pain.) I now don't feel sleepy until 4am, when I finally go to bed - I feel sick, have headaches, anxiety, stomach cramps etc and really want to see a nurse there to adjust my other tablets! When I had the stroke, the rehab clinic advised me to have a nap in the afternoon, using mindfulness to get to sleep. They told me not to have more than an hour, otherwise my nightly sleeps would be difficult. You should be able to fit in an hour when you get home from school?I have also been advised not to eat after 7pm, not to have any lit screens (computer, o phone etc) for two hours before sleep. If I wake in the night (or more likely if I don't go to sleep) I shouldn't get out of bed but should use mindfulness and ACT therapy to relax and get back to sleep. I've also been seeing a cognitive behaviour therapist about the guilt I feel at what my condition has done to my family - . My head knows it's not my fault that I'm virtually immobile but another part of my head blames myself. Anyway, let me know where you're from as I might be able to recommend more then. I hope I've been able to give you a few tips. Come back to me if you're feeling rotten you can pm me if you like. Take care and look after yourself. 'Speak' soon x

[Hidden in reply to morphalot]

Hello! Yes, I wish it was a for-sure thing that was easily treated. Oh wow, that's a lot. I do live in America. Why are they reducing your drugs? If they are helping you, why are the taking them down? I'll try taking a short nap when I get home to see how that works out. I feel kind of guilty as well, which, as you pointed out, is irrational. Will do! Same for you

[waylay]

I had JIA as a kid/teen, but I'm lucky that it seems to have gone away now. I only had knees and hands/fingers affected - you're unlucky to have so many!! I'm also hypermobile. The pain from the arthritis was really bad, as I remember! Your therapist is right, don't trivialise your experiences! Comparing pain doesn't really work anyway, because none of us can feel someone else's pain. Are you seeing a rheumatologist? Taking any meds? I was given high-dose NSAIDS as a kid (careful, bad for tummy), and as a teen I was given a few steroid courses per year (they have nasty side-effects). I also had my knees tapped (draining the fluid) and injected with cortisol every few months, but with so many joints, that's probably not an option for you.

I have chronic back pain, muscle spasms and sciatica now, so I hear you on how difficult it is to deal with not being able to move around. :/ Your GP can send you to a pain clinic and/or rheumatologist for help.

Good luck!