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Young Sufferers

Jun 18, 2015 3:45 PM

Hello yes it is I, your friendly neighborhood spoon child.
From my casual scrolling on here, I've found that I am quite a bit younger than most of you. I recently turned 21, and I've see some of you complaining about having pain for 30+ years. It feels a little lonely to think that I'm still a child in an adult community, so to speak.
So that brings me to my point: am I truly the baby of the bunch, or am I just looking in all of the wrong places?

Jun 18, 2015 3:52 PM

I guess while I'm here, I might as well introduce myself: I'm shelbie. I'm 21 years old. I have Ehlers-Danlos Syndrome- Type IV (Vascular), and many other comorbid disorders: Rheumatoid Arthritis, gastroparesis, endometriosis, IBS, chronic migraines, POTS, and mitral valve prolapse. Surely, there are more, but I fear to type for much longer at risk of subluxing my thumbs.
I have been complaining of chronic pain for the past eleven years, and I quit my job as a preschool teacher earlier this year to pursue my dream of being a professional patient and Netflix browser.

That's it, really. So, hello.

Jun 18, 2015 3:58 PM

Flimsywrist, you are a young adult in our community. There are several much younger than you, and many your age. If say we're all pretty much even in numbers, but then I've never been good at math. I enjoyed your wit and sense of humor, it's refreshing! πŸ™πŸŒΌ

Jun 18, 2015 4:06 PM

Nice to meet you!
I've found that in the midst of all of my pain flares, wit and a good sense of humor is all i've got.

Jun 18, 2015 5:37 PM

Welcome I also tend to offer sarcastic wit. The group seems to be 14 and up. I have been dealing with pain since 1981 when I had major back surgery. Until 2007 I had way more good days than bad. Not the story anymore. I tell my friends that I did not get this broken by sitting around. I think I spent too many years jumping off uneven bars and balance beams. Not to mention just being the best tom boy in the neighborhood. Lol

Jun 18, 2015 5:37 PM

Im 28 and still pushing myself to work because i need the money because conventional insurance covered treatments don't work and the things that help are expensive. I've only been diagnosed with fibromyalgia for now but there is a family history of lupus, parkinsons, ms and cancer (which gets ignored until it's too late because you pain is just ).

Jun 18, 2015 5:41 PM

I completely understand feeling young, I'm 14.
I've been surprised by how many teens and young adults have chronic pain/illness.
The people I know all are good at hiding it and acting normal.
I have CRPS(comps regional pain syndrome)/RSD as my biggest issue.
I also have asthma, allergies, chronic sinus infections, peripheral neuropathy, muscle atrophy, possibly POTS, MTHFR gene mutation, and absence seizures.

Jun 19, 2015 7:52 AM

Hey FerrettBandit! You really are young! Qhen did you atart experiencing pain, amd hi ow long did it take for you to get your diagnosis (CRPS)?

Jun 19, 2015 8:56 PM

I had a small amount of pain all my life, but in 7th grade my dominant wrist gave out, I switched hands and after awhile I had to switch primary docs to get a referall and someone to admit it's not just carpal tunnel. I'm still waiting for an "official" diagnosis but every speciation agrees is CRPS, and pain management is treating my pain as CRPS. I got CRPS diagnosed by a neurologist 8 or 9 months ago.

Jun 19, 2015 10:26 PM

Welcome flimsywrist to our family community.

Jun 20, 2015 12:03 PM

Welcome to our Family Community Flimsywrist. We are all here to listen, help, compare and basically help one another through all of this mess of pain we have in our lives. I pray that you find a good fit here.

Jun 20, 2015 7:37 PM

Hello Flimsywrists, I was 14 when this started and I am 16 now. My issues spawn from a car accident. I have many issues from the accident and my pain conditions has had both physical and mental effects.

Jun 25, 2015 8:45 PM

I have to let you all know something my doctor told me. I'm 26 and have, for 9 years, seen 3 neurologists, a chiropractor, psychologists/chiatrists, ENT drs, headache specialists, and more. I've taken antidepressants, triptans, NSAIDS, anti-seizure meds, therapeutic techniques, beta blockers, blood pressure meds, injections, and more. I was given low dose pain medication by a neurologist, but he refused to go further, regardless of the amount of migraines or neck pain or if they helped abort it, which they didn't. I moved on to a pain management doc who made me go through nearly every med I'd already tried for years before. He agreed to prescribe the 5 mcg Butrans patch. I was stoked. After moving up to a 10 after many long months, I found relief...for 4 days of the week. I have lost jobs from my migraine frequency and intensity and nearly lost my current job as an office assistant for minimum wage. I explained calmly and objectively why I was not getting full relief, and likely would benefit from a breakthrough med. after knowing me for some time, he decided to be honest with me, and I was glad a at least had enough respect to do that. His words affirmed everything I'd feared. He said in his accent, "Young people are likely to be addicted." I said, "addicted! Really..." "Maybe I put that the wrong way...See young people are likely to divert. Do you know what that means?" "Old people are LESS likely to be addicted." I was stunned. I stared at him in the eyes and replied, " I'm fine with your decision for me, but your reasoning makes me so...so sad." I almost started tearing up, saying, "I feel so.....so bad for young people with chronic pain." After he cut me off, handing me my old script, I was very polite with staff, hoping he didn't eventually tell them a demonically screwed up version of the story. I cried in my car. At least I could give up hope. Everything he said was so wrong in so many ways. Politics is ruining my life, and human suffering is totally fine for everyone under a certain age. I can't seem to get past the breakthrough pain, so I'm not sure he will let me go back to anything helpful or if he'll drop me as a patient, but...I, I'm helpless in my own body. I cannot be involved in my pain management. If I get fired again, "oh well". I can't deal with this terrible system and its uninformed people, doctors, DEA. Kill me now, because we will be descriminated against for decades. If you're young, you just cant possibly be in pain. F*%#?$@!!!!

Jun 25, 2015 9:03 PM

Hi! I'm a 19 year old who suffers from Rheumatoid Arthritis, Fibromyalgia, Drug-induced lupus & hashimotos thryoiditis. I've been suffering with arthritis & the fibro since I was 6 but didn't get diagnosed until I was 12.

It's good to see a community of other young people who deal with chronic illness/pain.

Jun 26, 2015 12:58 AM

MiriP, I was told recently by my Urologist that there are many doctors (including pediatric) that believe that children shouldn't get any pain relief medications for any reason -get this- because "children forget the pain." I was stunned. Too many doctors are too arrogant. It's a real problem.

Flimsywrists, welcome. I was born with my medical condition, and have never known a day without pain. I'm 34 now, but obviously I remember what my childhood and teenage years were like.

Jun 26, 2015 5:42 AM

I'm 17, chronic pain but can't complain because "It's all in my head".

Jun 26, 2015 8:27 AM

Wow. Forget? Really? There are studies providing clear evidence that people, especially children, develop PTSD from untreated prolonged physical pain! It's sickening. Negligence and mistreatment of pain is abuse. I don't even know how to do anything about it. How sad it is!

Jul 28, 2015 1:43 PM

Oh Angry, don't give up or give in. It is NOT all in your head.
Hi all, Christine here from Australia. 31 in August. Crohn's Disease sufferer since age 14, diagnosed at 28... The average doctor is a blithering idiot. I was told it was all in my head too. BS!
Insist on second opinions, third, fourth, fifth and sixth if need be and argue until someone does something!
Anyone here that needs a shoulder to cry on (virtually) or someone to rant to is welcome to contact me on FB (search Christine and Ravynn, I should pop up)
Now, considering it's 4am here... I might try get some sleep... Hugs all and remember you are not alone. πŸ’‹πŸ’‹

Jul 28, 2015 4:04 PM

Nice to meet you. I wish it was under better circumstances. I was diagnosed type1 diabetes and fibromyalgia when I was 19. I am now 46. I don't consider you a baby at all. A young adult with a fresh take on things. No one understood my pain at your age and it was frustrating. A board like this would have been awesome. Y'know, if the Internet exsisted back then😎

Jul 28, 2015 4:45 PM

I'm trying to get my sis on here cuz she has been feeling really alone. She's 12.

Jul 28, 2015 5:56 PM

I'm glad you posted this, because I've been having the same feelings! I'm also 21 and have only been suffering from RA for just a few years. It's frustrating to have problems written off simply because of my age. My insurance wouldn't let me see a rheumatologist or any kind of specialist until last year because of my age πŸ˜’ I think plenty of us I'm the younger age group aren't as active or don't speak up as much because we also feel like don't fit in, but you're not alone at all ☺

Jul 28, 2015 7:48 PM

Just so you younger one's know, your words of advice and suggestions are as important to me as any of us older one's. In the gold rush days we would have been called "old timers" (eddieray called me that... Lol), and y'all would have been the "greenhorns.". Too many in the world still treat children, youth, and young adults as greenhorns (still learning). Start speaking up if and when you feel cheated of being taken seriously. You must be heard to be taken seriously. Do so firmly and politely. Go in arms with knowledge and a list of questions or concerns. Good luck & God bless as each of you go forward battling your chronic pain! πŸ™πŸŒΌ

Jul 31, 2015 6:16 PM

At age 30 I was having so much trouble trying to explain what I was going through. Now I may not understand to be in my 20s or even younger to go through such experience. If I'm suffering so bad as it is, you guys have it worse. Sigh. I do hope life gets better with new researches and diagnostic tools and to hell with those arrogant white coats.

May 16, 2017 9:05 PM

Hi! I am new here and as it seems young too. I am 21. Nice to meet you

May 16, 2017 9:20 PM

Welcome Flimsywrists to the group!!!

I turn 50 here in 16 days. So yea I'm getting old. But my pain started at 14. Back then it was blown off as growing pains. Till one day the doc took me and my parents seriously and found JRA in most of my major body joints. So some of us that started early in life can relate to early teen pain even if we're old...

I don't mean to offend anyone. Just a pun ( I make funny remarked in pain as a lot of us do...) I got saved and reborn 35 years old so I am only 15 years now !!!!

Yea very bad day for me today as I had a seizure and fell and hit my head (not good on blood thinners. Hit to hard and will cause blood clot in brain and die) and all my left side. I'm all sore left side. And feel sick from head injury.

Anyway back to you.... I am so sorry for you and all of you who are so young going through this all. My parents told me to hide my pain and tell know one so it would not hurt me getting a job after schooling. So not one friend knew about my pain.

Please talk to us. We are hear for you. Don't look at age as a factor or that they wouldn't understand. Big ((((gentle hugs))))

May 16, 2017 9:24 PM

Thank you so much. I am 21 and feeling lonely and lost..no one in my family believed me when I said I am sick and after they believed me it didn't even matter.. we are so alone..

May 16, 2017 9:49 PM

I understand Kiriaki.

I was in a major car wreck June 22, 2009. For 7 months I begged and pleaded with doctors, friends, family and my wife that something was very wrong with me that I could not understand. I was messing up at work and getting written up on disinplary actions on jobs I bid on and won that cost the copany sometimes $20,000 dollars.

EVERYONE including my wife said to buckle down and do my job in supporting my family and stop complaining.

After 7 months I got the doctor after my neck surgery to do a brain MRI. I had sustained Brian injuries in 2 areas of my brain. Finialy I had proof that something was wrong with me and people begain to believe. Those 7 months were the loneliest. I wished I was dead in that wreck kind Of lonely.

You hang in there. Your with us now. You are no longer a lone.

(((((gentle hugs))))

May 16, 2017 11:23 PM

Heya , new here too. Don't know when the pain started. I think it has always been there , but I got diagnosed with PTSD like 5 years ago (I'm 27 now) . And started EMDR about 3 weeks ago. The pain has gotten a lot worse this last year and I'm on different medicine to try to manage the pain somewhat. They are assuming that the pain is caused by my mental state (they didn't examine me). I came here for support, because no one really understands my pain and how it affects my functioning (except for my partner, but also not completely). They think the pain is not that bad, because 1. I don't cry out in pain all the time 2. I'm way to young to be in so much pain 3. You can't see it, I look "normal".
Pretty much only have my partner and her brother , everybody else gave up on me.

May 17, 2017 12:14 AM

I'm 23, so no, you're not the only whippersnapper. :) I'm pretty new to the club, and am feeling a bit lost, because most of my issues spring from being transgender. I'm taking testosterone and I'm getting constant abdominal pain, like having a really bad period all the time. Going off it isn't an option (it would literally have to be a life or death matter before I'd go that route) but it's sodding difficult getting specialists to accept that. I'm hoping I can get a referral for an oophorectemy/hystorectemy because i'm pretty sure it'll fix a lot of the pain.
At least on good days over-the-counter stuff does the trick for me...

May 17, 2017 11:55 AM

I'm 24 and have had chronic pain from Ehlers-Danlos type 1 since I was 17 and other issues 😰. I think there are more young people here than you think which...I guess is good? We can at least understand each other better.

May 17, 2017 9:49 PM

I have RA fibromyalgia and other issues with my health.. currently on lose dose chemotherapy :( so unfair...im only 21.. I work and I suffer I don't work and still in pain and fatigue my hair is falling... I'm so angry sometimes!!!!

May 17, 2017 10:25 PM

I'm only 17. Had fibro since I was 10. It sucks.

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