20 years old with AS like symptoms....

Posted , 7 users are following.

I've been to at least 5 different doctors, I've had tons of blood tests done, creatine kinase came back triple the normal range and that was it. My spinal MRI says I have a mild bulging disc... but facet arthropathy on every level as well as stenosis near the bottom of spinal column... I'm so confused... 20 with this stuff... I go to work and come back home and just sit... all day because if I don't the people pain gets so bad in my back and I have sciatica all down my leg localized in my hip... I take ibuprofen daily and it helps somewhat... I haven't had a pain free day in 2 years... my question is... I don't know what to do .... my family is afraid for when I get off there insurance... I can't go to college because I work and I am fatigued as all hell after... and I have an apartment to take care of... I also don't make enough money for that.... I don't see any career that would work for me and my arthritis... I don't know I'm so stuck in life... this disease seriously halts your entire life and says TAKE CARE OF ME.... Idk know guys im so confused and in pain AT 20!!

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14 Replies

  • Posted

    Get an official diagnosis and try to get them to prescribe humira it will change your life
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  • Posted

    Hello. I feel for you! I'm 36 and started with my occasional pains when I was 28 or so. Young too! I wasn't in as much pain as what you're saying though. I didn't get my full daignosis until over a year ago. It can take years to diagnose since it's a slow progressing disease.

    Are you under the care of a Rheumatologist? Are all 5 docs saying you have AS? If none of these docs are a Rheumatologist, you should ask to be referred to one. Have you had any imaging testing done to show damage to your SI joints or spine? Damage (and pain) in your SI joints is called sacroilitis and is very common and one of the key factors in diagnosing AS (along with other symptoms of course).

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    • Posted

      I do have a rheumatologist, and no I haven't gotten a diagnoses yet, my doctor is pointing towards auto immunity, and my MRI and symptoms strongly suggest it so. My spine is arthritic at every point, I don't know about the sacroiliac joints yet though, he is trying to put me on diclofenac but it makes me super sleepy. I'm just fed up with being in 

      pain every day ya know? Lookin for people with advice.

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  • Posted

    well Tyler, now you have a friend who agrees, it is crappy!

    At 11, I developed the damnable disease Juvenile Rheumatoid Arthritis. To graduate high school, I needed to fulfill 4 years of gym class ..and I did by playing pinoccle!

    I pushed working because I need money to live on and to support my illness. Back in the olden days, pre-existing conditions were not insureable so I paid full boat prices for all medical.

    My parents withheld the doctor's thought that I would not live past 20...

    And last week concluded 65 years!

    Because I choose to not allow some damnable, pain-in-the-arse disease to beat me!

    Sitting can be made so much kinder by using a ROHO cushion, an air cushion. .worth every penny!!

    Tyler, take a very deep breath...you are not alone! Next, see your primary care physician. Take a copy of what you wrote above.

    Because I can not hear your accent in your writing, I don't know where you are.

    If USA, go see a pallative care specialist for pain care. And consider going on Social Security disability because 2.5 years later you will be insured by Medicare. Next, figure out what you want to study and GO TO SCHOOL! You can always go back to work later after you are better prepared with pain care and an education.

    And do not forget. MEDICINE EXPONENTIALLY GROWS EACH DAY!!!

    Why things improved so marvelously that I turned 65 just last week! Sure am glad I did not quit.

    Kind regards,

    judith

    ps...stay in touch

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    • Posted

      what has kept you going all these years? You gave me a sense of hope and happiness with your story, do you take medicine everyday... I'm afraid it will screw my body up, my dads GF has  AS and says taking ibuprofen daily is what she's been dOINGfor 20 years and she's fine, plus she's on the biological and methotrexate.

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  • Posted

    Hello, I hope you get some answers soon.  Earlier stages may need an MRI of the SI joints to help diagnose.  That is my experience.  Wish you the best of luck.

     

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  • Posted

    Dude, it takes time. Rheumatologist, Pain management and physical therapy. Have you been to a Rheumatologist. If not try to, it always takes time to get one. Pain Management-talk to GP or pain management. Physical Therapy to learn things that you don't know now. You would be surprised what a good PT can do for you, I was. Who gave you the diagnosis, because getting an AS diagnosis isn't that easy. Depending on who gave it to you. Usually you don't get the diagnosis without meds. It is called Diagnosis through exclusion. If you haven't tried different meds, you haven't excluded anything-yet. You need different meds-GUARANTEED. Work on the fatigue first, pain sucks but the fatigue is worse mentally. Trust me on this one. Increase protein, reduce bad carbs. Use a multi-vitamin if you don't already. And if it's any consolation, it started for me at 16-I'm 43 now. Also, communicate-plain and simple. If you don't try to look beyond the horizon, you'll never know what is waiting for you on the other side. Keep in touch.

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    • Posted

      physical therapy caused my sciatica to worsen, I have a rheumy, and it's not diagnosed I said symptoms. I for sure have arthritis either way in my spine and my wrists are bad as well, what would you suggest for fatigue because it's hard to work with fatigue, I went vegan b4 and it did absolutely nothing, I tried paleo it made me worse, I do not bleive diets help, but I will try anything.

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    • Posted

      Yeah this web site is crazy. Third time I have tried to answer tyler. So I'm gonna try to keep it short hopefully this will work. My rheumy put me on methotrexate and vitamins you need to take with the methotrexate. They seem to be working but I wanna see what happens over the course of winter to be totally sure. I have a kid with dairy allergies. So we do not eat canned, processed foods. Our lunch meat is different as an example. They use whey as a filler in some, it's a dairy product, so we just eat better quality foods all around. Cut out processed crap-white bread(enriched flour is crap). Protein, veggies, fruit, good carbs, don't go overboard with things, just look at the quality of what you are eating. Not that tough. Also as a man I noticed switching from a multi-vitamin to a Men's heath vitamin HAD to make a difference. Positive about that one, absolutely, no doubt. You sound alot like my symptoms, my wrists and spine are huge problems. Your rheumy doesn't have you on anything specific?? Get back to me on that one.

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  • Posted

    Hey Tyler.  For fatigue there is not much, Try your best to get a good night sleep.  I myself find this difficult as i go to bed in pain and difficult to find a position and on my stomach is out.  But everyday is different.  I cahnged to a hard mattress with some Tempur cusions to place under my head and curve of back.  But i dont often acheive good sleep myself.  I wake early too with different pain again.  Occasionaly i take a strong perscribed painkiller to get a better nights sleep.  Through out the day i lay on my side when i can, i dont go too far, and try not to do too much.  I am not able to work and am very impressed when people can work as well I fear this may not help keeping the disease at bay.  Definately tailoring the exercise to how you feel eg lighter when  most fatigued.  But hopefully never NO exercise.  Stay in touch.

    ps My diet is completely changed no dairy, no sugar, no gluten.

     

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  • Posted

    Hey bud, I'm 21 and have as, confirmed it about 4 months ago after mri scans and blood tests ext, my first signs of it was when I was younger about 2 years ago I used to suffer with real bad eye infections felt like I had pins in my eyes and nothing would take the pain away, few months down the line I was put threw pain like I never had before in my big toe, my whole foot swelled up and they was my first signs of as, now I suffer with morning stiffness, pain everyday like someone is pulling my spine together, can't walk long diatances, after any form of excerise, I would be on my bed for hours after in pain like I was in a metal straight jackets, just couldn't move, everyday things are so much harder, taking so many pain killers it's unreal, start my anti tnf injections in 4days so hope fully that should help me out alot

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    • Posted

      Tyler

      My mom would say "your arm hurt last week, then your foot, then the elbow, today the knee ..get out of here...nothing is wrong with you"

      My grandfather was in an awful humor (grammy's code word for drunk) and I called out frim the bedroom for help...he woke up...ugh...I could not move my leg now I understand it was the first sciatic episode ..my grandfather said "Virginia, take her to the doctor tomorrow...there better damnsite be something wrong"

      And the very next day the kindest doctor I have ever met carefully looked me over, even untied my shoes for me, moved some of my joints...then took me back to my grammy and said "Virginia, do you not know this child had rheumatoid."

      All I heard was, "she is not a hypochondriac "

      Later my mother took me back to the doc we had seen for years. .he took me out of gyn class and told me to take aspirin when I hurt. In those days aspirin cane 325 mg only...no coatings. no mega mg. So I carried a 100 count bottle of aspirin...I would open the bottle and pour out a handful, popping then into my mouth and swallow...several times a day.

      Now Tyler, this is already a long story...the important take away is do not give up. I was given medications to try in quantities no doc woukd give out today...everything from malaria injections to gold salts to 6 additional smallpox vaccinations...because of the advent of biologics mid nineties, you will never go through these experiments. These biologics modify the disease...in my younger days they just tried to treat the symptoms.

      On March 4, 1984 I went to work..I always went to work...and that day I lefy my office near O'Hare airport and drove clean over to the University of Chicago for an appointment (I went every four weeks) I was put into a hospital bed, literally tied in that bed because I wanted ro return to work! By then several additional docs and nurses were in my room. My rheumy said: I have no idea how you woke up two days ago, no idea how you woke up yesterday, and I am nor even going to try to figure out how you got up today But I guarantee that if you do not stsy in that bed you wilk not wake uo tomorrow. You don't even stay home when you are sick. You do not call your doctor!

      I had 6 blood transfusions that night just to save my life. At 32 all the years of taking aspirin like M&Ms a long with a lot of other stuff had blown my stomach out. And another had suppressed my bone marrow so my body was making no new blood. My liver biopsy was disturbing. For two weeks they kept me in that bed. Four days after I got home I received a letter from the Social Security advising me they had awarded me disability...I never filed for it...the docs had filed.

      So here I am reaching out ro a young man and his family. I truly know how you are feeling. I have now lived...LIVED...for more than half of my life in my own place.

      When I took that Social Security letter to my doc and told him I needed to work he responded

      NO, IF YOU WANT SOMETHING TO DO, GO TO SCHOOL

      Warm hugs

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    • Posted

      Just responding to the first part. wrists one week, right hip the next, elbows later on, ankles and toes after a few. Feels like your playing "spin the bad spot". Talk about drivin ya nuts.

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