I’ve had RA for a very long time now. Most of the time not knowing about it. I think it started in my fingers. I now have to pop my fingers every hour or so cause if I don’t they hurt and get stiff. In sixth grade my shoulders started hurting when I had a backpack on and when I sat on a seat with no back.
In seventh grade the pain started in my knees. That is when I told my mom I needed to go to the doctor because it was getting painful to play sports. I used to love playing sports. Now on this day I can hardly get out of bed without wanting to cry. As the past few years have gone by my pain has only gotten worse. I’ve had RA since at least fifth grade, when it started causing damage. But the pain didn’t start till a bit later on. Plus, I only got diagnosed two years ago in ninth grade. My mom cried cause she’s have to constantly see me in pain but now she just doesn’t understand the amount of pain I’m in.
My mom is the kind of women who thinks once teenage years hit we’ll stop talking to her, but in reality she stops listening. I haven’t been to a rheumatologist in over a year due to the fact we now move every few months and she’s a selfish prick sometimes. My first rheumatologist was terrible anyways. He never put me on a medication like humira. Just pain killers. With terrible symptoms. Then my clinic doctor switched me to a painkiller without as bad of symptoms and that’s what I’ve been on since. It no longer works btw. And both my parents yell at me everyday saying I’m using my arthritis as an excuse to get out of chores. When in reality I physically just can’t do it. I can’t sit for more than a few minutes without needing to lean back. If I sit slouched for a few minutes it hurts like hell to straighten up. I also can’t stand for long either.
I read somewhere that most people with RA end up in a wheelchair around a year and a half of diagnoses and it’s been two years and I sure do wish I had one. It’s embarrassing when I sit on the floor in stores because it hurts. I would like others opinions of what I should do to get through to my parents the amount of pain I’m in. How can I do that if nobody ever listens?
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Ccrowlu
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Sorry to hear that you're in such pain and have been suffering for so long.
There is much literature regarding RA and the impact, on here and lots of other reputable/ NhS sites that you may be able to print off to help your parents understand better.
You said you are 16 and at this age you are able to attend your GP without your parents and consent to medication etc. It may be worth approaching your gp and asking him to refer you back to rheumatology.
There is also a helpline attached to this site and it may be helpful for you to call for advice and some emotional support.
You sound not only in pain, but in a lonely place - keep talking here as you'll find a huge amount of advice, guidance and compassion.
Incidentally, and to put your mind at ease, it is highly unlikely anyone ends up in a wheel chair two years after diagnosis. I myself have been diagnosed over 3. Medication is much further advanced and with the right meds, I'm sure you'll make rapid progress.
The important bit is to see your gp and begin the process.
There's a good website and support service for younger people with juvenile arthritis. Have a look as it should give you some hope that with treatment you'll be fine
I've had RA for 7 years now and am completely fine, hardly any pain and certainly no need for a wheelchair! Yes there are some people who have a very aggressive disease that doesn't respond to drugs, but for the majority it's fine.
However it sounds as if you might be in the US rather than UK? If so I'm not sure what the rules are but here in UK as Eiram says once you are 16 you can get treatment yourself. So maybe the same there and you can find treatment yourself?
I am 30 years diagnosed and still trucking even though my parents were like yours! I was diagnosed in 1987 at the age of 12! I have kids your age and my heart breaks for you! I am in Kentucky, and I am curious where you are! If you like you can pm me any time day or night and I will do my best to be available to you! I went through periods of time where I could barely walk starting around age 5, and was told to get up and stop dramatizing!
Do you have private or government insurance? At 16 you can go to your local health department, and most of them do health services other that birth control. That might be a place to start. In the U.S. refusal of medical care by your parents is considered a form of abuse called neglect now. This law came in to effect after I was grown by DCFS.
Are you at school? In college? There may be a guidance teacher who would be able to support you? If your parents are unable to support you and the age of consent is 18, maybe you could contact social services to ask them for support to speak with your parents and asking them
To ensure you revive proper treatment?
Sorry, I'm not sure of your system over there but I'd imagine, that as a minor, it's your parents responsibility to ensure your medical needs are met and as such, there should be services you can access to support them in doing this for you?
I am not in school as much as I wish to be. I have to drop out because of all the moving we do. And yes there are services to do that but despite them being told what they need to do they’d probably get mad at me and ignore what anyone I called told them
That's a very difficult position to be in and I really do feel for you. My experience is that when services become involved, parents generally listen and things are helped to change.
Other than this, I'm not sure what else to suggest?
Hopefully someone from your side of the pond will come along shortly and may be able to offer you some further advice, or at least signpost some appropriate supports for you.
I'm so sorry to read about your situation. You are in a tough spot.
Your parents may not realize this but If you are being medically neglected, that's a form of child abuse. Please phone your state helpline for children & teens. They can get a social worker involved. This social worker can help your parents understand your needs.
Your parents might be "sticking there heads in the sand" because they fear the medical costs of your disease. They may not know where to get help with the medical bills. The social worker will direct them where to go for financial help.
Some health insurances have a list of what they will or will not cover. Since you were diagnosed a few years ago, this is called a previous medical condition. Previous medical conditions aren't usually covered under new plans.
Oh hun, I really feel for you. You are only 16 with a horrible disease. You are too young to stand on your own, but you must. This is your life & you need treatment & you need to get your grade 12 so you can have a future.
I'm new to this site. My husband had undignosed juvenile RA and didn't get a dignoses till his 30's. He suffers his mom doesn't understand and still feels that he would get better if he just willed himself to be better. Some of the things he does to help with pain are: avoid foods that increase inflammation and eat lots of foods that help with inflammation. Googling such foods with pull up lots of information. He makes himself go for walks the less he does the less he can do. He drinks lots of coffee the caffeine is as effective as an aspirin but without the internal bleeding. He keeps his mouth and tongue very clean-learn about periodontal disease there are some very real connections. Lastly low protein plant based diets are effective for some in helping to eliminate symptoms.
I know it's not much. It's very much a form of child abuse for parents to not provide adequate medical care to minor children.
There is American group called CreakyJoints and they may be better placed to give you USA relevant medical care advice and we are still here if you choose to contact them as well.
Hiya Ccrowlu, welcome, though I really do wish I didn't need to welcome you, & that your parents understood your condition & supported you. Without going into blaming, you know your parents we don't, even though you shouldn't have to at 16 it seems you're to have to do some searching out, with or without support from your family.
You've had some good advice already & I hope that some from our members over the pond particularly will be helpful. I'm in the UK so limited somewhat but have you come across Peer2Peer mentoring, set up by the Arthritis Foundation - Kids Get Arthritis Too? kidsgetarthritistoo.org/res.... There's also the Arthritis Foundation helpline, toll-free 24 hours a day, details here blog.arthritis.org/news/art.... Either might be worth contacting possibly, see if they can point you in the right direction... towards treatment.
Keep talking here, if nothing else we can be here if you have any pertinent questions or just need a rant.
Can you go to social Services to get help/support/treatment - Its unlikely you will end up in a wheelchair but with the right drugs your life will improve 100% - there must be somwe organisation that will help - could one of your teachers help you find the right support good luck xx
Hi so sorry that you are in so much pain I know exactly what you are feeling as I've been in extreme pain for 2 years nobody understands how much pain we are inIf I groan when trying to stand or move I feel like they must be fed up listening to me but I can't help it I have recently been diagnosed with osteoporosis and Osteoarthritis I've never experienced anything like it and I have a high pain threshold but when it's there 24/7 it drags you down and then the depression because you can't do things that you love doing you are just a baby I have, 5 'kids all grown up and away just my 14 year old daughter and me and her life was turned upside down 2 years ago when I had my accident in work and fractured 4 Ribs in my back and Smashed my vertebrae but as the weeks and then months went by and the pain was getting worse so after all this time finally diagnosed and there's nothing that can be done except painkillers I'm a 50 years old in a 75 year old body I was always active walking cycling now I can barely get up off chair It's just not fair hunny but if anytime you need a chat il be here as for mum and dad I don't know what to say except do you want to move in with me lol 😂 take care xx
I would look into and consider functional medicine if your pain med's aren't helping anymore. I had that problem too and horrible side effects. Two specialists refused to try me on steriods either due to the risks involved. I'm aware that some people have no choice though. Especially, if they cant figure out why they are inflamed in the first place.
For the above reasons i turned to functional medicine. These Dr's look at the root causes of disease, conventional doesnt. They just mask symptoms with drugs. I find magnesium great for pain and vitamin c flushes. There's research on pub med about this:
Strongly disagree. This child needs to be brought under control & quickly, she's suffered too long as it is. She has no support from her parents, how do you think she's going to feed herself what you're suggesting, even if it was the right way for her? No, symptoms aren't masked by meds they are suppressed, two very different things. Suppressing the disease reduces the risk of damage.
Supplements aren't advisable without being tested for deficiency, little point taking something without knowing if it's necessary. Please bear in mind Ccrowlu 's age, she's still growing, not an adult.
Please read all the articles nomoreheels . Yes steroids in the short term may be a good idea but I've read that because they mask pain they damage the joints in the long term.
One rheumatologist said to me there is no conventional cure which is true and they dont know the root cause....
Another specialist said that he had seen young people in a mess due to steroids. They need to do a risk assessment. It doesn't look like he put her on steroids. He will have his reasons for doing this. Pharma drugs have there place depending on the circumstances.
Ps there are dairy free milks with calcium like coconut and almond etc and gluten free options are everywhere!
We know there's no cure, that's not news. There are other meds, there's no saying a Rheumy would consider steroids for her. Yes steroids have their down side, no doubt but used correctly they are helpful in bringing down damage-causing inflammation. My T scores are on a downward turn, after 5 years on steroids.
Is it not better to tackle why people are inflamed in the first place nomoreheels ? Seems sensible to me.
Please read all articles so you know where I'm coming from. The girls pain meds arent working anymore. I'm sure it will help you too. Please keep an open mind about its suitability until you research the subject.
Hidden - you're coming across with the evangelical zeal of one recently converted to a new way of eating - might I ask, is that the case?
And, does disagreeing with you automatically mean that people haven't read extensively or that it's possible to have a different opinion that they are offering from their extensive research and personal experience?
Yes I was at deaths door before functional medicine.
Not interested in an argument with anyone. Only in helping people. I could tell that not all of the articles had been read. The blood tests for nutritional deficiencies aren't always accurate. Like magnesium and b12 .
I have tonsillitis so I may have clicked on the wrong article. I have been told by my Dr anyway about the dangers of masking pain long term and my conventional specialists support me doing functional medicine.
I honestly don't mind if no one listens. I'm just presenting what I regard as useful information. I only ask that people read what i have posted before addressing me in a disapproving manner. ITYFIALMCTT
• in reply to
ITYFIALMCTT sorry I actually meant to post this research article about the adverse effects on bone.
Commented on that below - yes, we're all in agreement that steroids aren't optimal but they seem to be the best available current option.
So, yes - many people have been aware for decades that steroid use has a deleterious impact and that it takes a careful risk:benefit assessment before prescribing/using them.
I'm sorry to hear you have the dreaded tonsillitis, it can be a troublesome down side with our tricky immune systems. I guess you're drinking plenty, it helps.
Please return the courtesy & have a read of this ncbi.nlm.nih.gov/pmc/articl..., the Conclusion is on page 18 if being poorly concentration is a problem. You'll see there's plenty of more recent evidence that steroids used appropriately in RD have proven to be beneficial in the long term. I've explained that I did read the links & I'm sorry if you thought me disapproving, our thoughts differ but I constructively explained why, it is in concern for a 16 year old who not only receives no support but no treatment when she explained eloquently it's needed & wanted.
Thanks for your kind reply nomoreheels . You are perfectly entitled to go for whatever treatment option you deem best.
I'm afraid long term use of pharma drugs (depending on the drug) will always make me nervous due to discussions with my own drs and due to the article below. However, I read your article. Thank u.
Like yourself i do read the studies, however, I don't trust them all due to the following: theguardian.com/science/occ...
As I've already stated though, I'm not against short term use or in special circumstances. I just want to tackle the root cause of inflammation and pain etc. I feel that it's the way forward for me. Just sharing my experience etc incase it helps others.
Obviously, because of what has happened to me, I have gone down a different path. I just wish my parents had known what I know now over 20 yrs ago, because i wouldnt have been so seriously ill from childhood. Too late, damage is done and I lost most of my life being bedbound. I have to hope that I can repair all the damage. Ive reversed some on the functional programme. Thank god. I couldn't even sit up before it!
I better go because of the nerve damage in hands. Not being treated as a child has had devastating concequences. Thus, for good reasons I feel that functional medicine can be an appropriate treatment for children. It would have been life changing for me.
If you're meaning I hadn't read them, I opened them otherwise how could I have given an informed reply? As I suspected all but one I had read before. I am particularly clued up on magnesium as because of several conditions my husband doesn't absorb it well & as a result has needed magnesium infusions. This isn't by any means the first time diet & supplementing has been recommended, you won't be aware but I have read extensively having an enquiring mind & do believe that certain diets are helpful but not exclusively. Neither would I recommend anyone supplement without evidence to support it's necessary. Do you think her parents will just hand over money to pay for them given that they're ignoring the fact there's actually something wrong with her? Functional medicine doubtless has it's place but not in this instance, actually I would never recommend either option to a 16 year old child, I believe what's required is her parent's acceptance that she needs medical intervention & their support, that's the uppermost concern here.
A functional Dr saved my life so I can't agree that it is bad advice.
The girl stated that her pain meds weren't helping and that was why I posted about safer alternatives. I also recommend medical help.
I appreciate that most people won't have tried or maybe even heard of functional medicine. I only discovered it two years ago.
Therefore, the majority will support conventional medicine only. I support both (conventional & functional) depending on the circumtances. first hand experience has taught me the important role of functional medicine but I accept people to be skeptical of the unknown.
Yes I agree, functional drs are expensive and may not be an option. However, reading the website of ex president bill Clinton's functional Dr may help (Dr Mark Hyman) he gives plenty of free advice. I posted one of his articles above.
Also, an article by a cardiologist on vitamin c. There are also a variety of books by functional Dr's. Not as pricey.
You suggested no supplements without testing so I assumed that you hadn't read the article on the inaccuracies of the magnesium test by Dr Sircus. The testing of b12 deficiency is extremely poor as well, that is why they have changed the BCSH guidelines. Sometimes testing isn't enough to determine deficiency. I have nerve damage due to this. Therefore, obviously I feel strongly about it.
In spite of this, some supplements aren't safe in high dose like calcium, vitamin b6 and vitamin A etc. Always research or ask a Dr regarding safe dosages etc.
Regardless of this, statistical data has highlighted the safety of vitamins in terms of not causing death. It also states how many people are lacking in nutrients: orthomolecular.org/history/...
I personally have the backing of conventional specialists on my functional programme. Some were against me taking certain pharma drugs. Also, i have experience of functional medicine helping, so respectfully my opinion won't change.
Do not wish to argue or offend but everyone should do their own homework and decide what's best for them.
Ps I took ill under the age of 10 and believe I wouldn't have been in this mess if I had had a functional Dr as a child. They help children too. Hence, why I posted info about functional medicine.
Pharma drugs didn't generally agree with me. Therefore, it was a comfort to me, knowing that their was other options.
Im no longer a child but still a young woman. As I've already stated some functional doctors are conventionally trained. So have knowledge of medications too.
We are in agreement that she desperately needs emotional and medical support though nomoreheels
My newest clinic doctor said that the fact that I’m only on pain meds only covers up the problem. In the beginning though it did lower my levels only slightly but at this point I believe my levels would be that of an 80 year olds. But I have no way of knowing since I haven’t been tested in over a year.
I understand. I've been told the same by quite experienced Dr's. It's not a long term solution. I know that some people react negatively to alternative medicine but they don't usually know much about it. I felt like I was going to die before i did my functional programme.
I've been told that I have more than one autoimmune disease. Pernicious anaemia and connective tissue disease. I better go because Im still healing nerve pain in hands. I really felt for you tho and I took ill as a very young child so I know what it's like. I only discovered functional medicine two years ago. Hence , why by that time I felt like I was on the way out. Don't feel like that now. My functional drs got me awake all day now ( I was crippled with fatigue) , brain fog gone etc. Just got damage still to heal. Keep in touch. All the best.
Hi, I know how tough it is to be young and trying to explain what is going on to someone who is not going thru it. I am 23 now, but was diagnosed at 12 after my 4 surgery. I have sadly had it since birth or in utero as I showed signs at birth but being a premi they did not realize it. Finding a docter is hard but worth it in the end. If you need to talk or vent I am always willing to listen and chat, on here or email, hell even text or phone if it helps. I have found that swimming is a great way to help eleviat my pain and also to develop more muscle to help keep me up and active longer.
Thank you for your advice. You have no idea how much I appreciate it. I haven’t swam much in the last couple years mostly because I had to ride my bike or walk all the way across town and I was always in too much pain or eventually became in pain and I never truly have the energy for it anymore
Yeah. I totally agree with that. And that’s why I get so upset about my arthritis sometimes. I used to be one of the most active people. I played volleyball, basketball, tennis, archery, and track. But now I can hardly get out of bed in the morning.
Thank you to everyone who has given me advice and showed you care. It’s so nice of you and I honestly never thought I would even get a single comment. You all are amazing people.
I wish you all the best with whatever you decide to do. I'm under the care of a functional Dr who is conventionally and alternatively trained. I would recommend that anyone who is interested is managed by someone properly qualified. Especially, before stopping or reducing any medications like steroids or immunosuppressive drugs etc. Be safe. Good luck x
Sorry before I go. I know that there are positive effects in short term use of steriods but here is one article talking about the adverse effects of steroids on bone. Take care everyone.
From 1998 - and it's a critique of an aspect of a Cochrane Review published in 1998 that was based on papers published up until September 1997: ncbi.nlm.nih.gov/pmc/articl...
Prescribing practices in both primary and secondary care have altered dramatically in the UK since then and the burden of the RCTs that made up the studies in the (then) current Cochrane Review on the topic.
Hi can't write too much, as at work, but will try later. I got RA /juvenile RA at 14. Am now 46.. Had a canny few operations, but still mobile.. Obviously not always that well.. But I'm leading a full and active life! My main advice is that you need good meds and support.. Nras etc have meetings or can put you in touch with other teenagers with RA.. Regarding meds.. There is so much out there now, in 80s there wasn't, hence why I've had so many ops.. You need a good GP and a good rheumatologist. You don't need to be in pain and you don't need to get joint damage. Call nras and am sure they'll advise who is good to see in your area
Sorry to hear your story ! Sadly your parents need education on RA and the problems / pains it brings one thing for sure I got 6 kids and would support everyone of them x I have RA unfortunately they now have to support me ! Get some RA info and hand it to your Mum and Dad also see a professional quick and get on the correct medication x unfortunately you can't pick your family but you can educate them and get then hopefully they will support you wish you all the best be strong seek help with or without mum and dad do it for yourself ok before you get worse you need medication to stabilise the illness x
I’ve tried educating them so many times and tried to tell them how much pain I’m in. But they still think I’m only in pain when I walk for a long time.
It's terrible that you are dealing with such ignorance. However, you could politely ask your specialist to speak to your mum and explain your situation.
When I was gravely ill my haematologist actually asked to speak to my mum. He wanted to support her and inform her of my situation. This was extremely useful for me and my mum. If your dr declines then look for another Dr that is willing to offer this kind of support. I had to look around for the good doctors that I have today. They even educated me on the system.
Show them my post ! I'm 48 and six kids like I said when my 14 year old daughter started telling me her knees were sore all the time and she ached I took her straight to the doctors for a blood test looking for high ra count because I know what it is like I have ra and dam sure I wanted to help her as soon as she said she was in pain I did something about it ! That's what parents do for there kids to help them anyway they can ! Like I said show them this post I will gladly speak to your mum and dad if that helps you just let me know x
Sweetie in my opinion, your parents need to listen to there daughter. They're not the one hurting you are. I know how you feel about that subject. I have OA and that hurts just as bad as RA does. How are your parents going to feel once you get to the point that you can barely move. I'm not as young as you but you have your whole life ahead of you. If they won't listen to you then you start doing what you think is best for you. Our body's let us know when something is wrong and needs to be looked at by the right doctor. Good luck and I wish you the best.
Hi Ccrowlu, I'd sent you this PM (Private Message) a while back, & not sure you'd received it. I've placed it here for your consideration should it interest you at some point:
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👩 Erika: Erika Conquers Rheumatoid Arthritis With A Plant-Based Diet:
I was also diagnosed with ra as a child, I was 6 years old when my teachers noticed my knee was always swallon. I'm 22 now and let me tell you it does get better, you get stronger and you have more will power to not life this take over your life.
It's usually good to have a support group especially if your struggling with your mum. Maybe some friends or a socal worker/youth group... I will always be happy to talk to you if you need it and can't seem to find the confidence in anyone else.
I know you just want to be a normal 16 year old, and it really sucks it's gotten you a such a young age. But you need to keep your head up and your spirits high! Your so young and you have some much living to do!
I will pray for you even if no one else does! And hopefully 1 day soon you will go into remission! And I promise you it's like feeling you've never had this terrible disease!
Ccrowlu, It must be tough developing this at such a young age but do not despair. My consultant uses me as an example to demonstrate that there is life after diagnosis! Although I was several times older than you on diagnosis I have continued life as a competitive cyclist . I am a para-cyclist now following unrelated severe injuries but my sport continues. RA is a nuisance but not catastrophic. Good luck. Wheelchair?? That will never be a consideration while I can ride!!
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