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Hello from the land of nothern lighs and midnight sun

edited 05/26/2015 - 6:56 AM in New Member Introductions
hello, nice to meet you all! im nervous and new as you can see and im hoping to find some support here for my pain problem. and yes, i mentally call it either the pain problem, the problem or the pain thing. kinda trying to ignore it and neutralize it by not being specific. well, you kinda could say that denials over and im hoping to meet others who share same experiences!

okay, so im 15 years old teengirl from northern europe, finland. im using the different language groups for excuse of all my typos and other grammar mistakes. my name is jenna and i have hypermobility syndrome steadily developing into ostheoarthitis if it already hasnt. i have had hm syndrome all my life and i have always known it, everyone on my mothers side has it too plus some random people on my fathers side. so it was 100 % sure that id have it too.

i dont actually have proper medical history of the thing. thats a reason why im so unsure about joining and posting this. only time i have gone to hospital because of my problem was when i was 8 or so and because my teacher forced me to. i went to physiotherapist and they said that i clearly had hypermobility syndrome and that i wasnt lying and gave me exercises. i havent gone since then because it was one of the most painfull events of my life. the things they made me do were simple but made me hurt so bad i actually started crying. for some reason they made me continue even though i was sobbing while doing the tests. my mother was absolutely horrified when she had to hold me and calm me down afterwards because that was the first and only time she has seen me cry because of pain. so there is no way im going again.

this is going to be ridiciously long but it doesnt matter because im posting this for me anyway. i have always been good at hiding my pain. i cry easily actually, but i have cried because of pain only once in my life. only person who can tell when im in pain if i dont mean to show it is my mom and even then its only 1/10 times. meds dont really work for me, and its one of the symptons so no suprise there. since i have no proper medical history all i can do is explain the pain and other effects. its going to be ridiciously long so please be prepared.

my joints pop out of place more than normally, they dont really disslocate completly, they just kinda climb on the edge and if i snap them right it will just fall back in the pouch were its supposed to be. the most iconic symptom and most clearly seen from outside is the extra movement range of my joints. simply said im more flexible than others. it also causes problems, like i cant actually snap my fingers because they bend too much and become unable to produce the sound. i think its actually kinda hilarious.

obviously there is pain. there is the constant level that doesnt change in all of my joints. in level to 1 to 10 it would be a 3. if its cold it hurts more than usually making it go to somewhere between 4-6 same as rain. if its cold and moist at the same time its between 6-8, mold causes pain somewhere between 7-8. pain from physical exercises can be from anywhere between the normal level of 3 to the maxium of 10. because my joints are so weak my muscles have to do more work so i regularly suffer from muscle pain and cramps.

also the type of the pain changes with the cause. like cold makes your joints feel cold inside and ache and moisture causes this dull kind of thudding in beat with your heart. physical is anywhere between from stabbed with hot metal, to hammering to someone ripping your joints apart. mold is kinda mixture of all of them. cold stabbing in beat with your heartbeat. im not going into more detail since im not actually writing a novel even if it may appear so.

other major problem is them giving out. if im tired from physical activity usually my ankles or knees just give out. i cant feel them and just fall down or stumble on my own legs. this causes both dangerous and embrassing situations. if my ankle gives out at school it looks like i tripped on nothing and people will laugh at me. once when i was coming down the stairs from my room after sleeping, my knee gave out and i fell the steps down. luckily i landed on my ass, but i was only about 5 cm away from cracking my head in shard corner of a table that was opposite to the stairs. the table was moved away after the incident of course.

they also get stuck if i stay in one position for too long and im not able to move them. because of this i have hard time of standing up afer sitting for too long because my knee wont straighten, sometimes i actually fall. this happens too when i do some sort of repeated motion over and over again. like tapping with my foor or finger or when i knit for too long. they get more probable of getting locked when its raining and moist.

and i completly forgot to mention wich joints are affected by this! the answer is every. my worst ones are knees and hips. the best one is my jaw i quess, it doesnt even make the craking and popping sound everytime i move it. also it has spreaded to my spine wich causes me back problems, like i cant sleep for too long or it will start to hurt or so on. like my joints it also makes popping sounds, but its nothing too serious at this point.

im not seriously expecting anyone to read this. i just wanted to get it all out. i seriously dont have the right to whine about something like this though, some people have it much worser than me and dont complain at all. compared to my family i have the worst case, but they dont complain either. mine is just a bit worse but my personality is weaker so i quess i need some sympathy and need to wallow in self pity in once in a while in order to hide it all the other days..

anyway, thanks for reading this thing and maybe we see each other in this forum.

welcome to spine-health

it would be very helpful if you could provide us with more details. so many times we read about members who have different tests and they all come back negative. the more clues and information you provide, the better chances in finding out what is wrong,

here are some questions that you should answer:
  • - when did this first start?- was it the result of an accident or trauma?- what doctors have you seen? (orthopedic, neurosurgeon, spine specialist, etc)- what conservative treatments have you had? which ones?- what diagnostic tests have you had? and their results (mri, ctscan, xray, emg, etc)- what medications are you currently using? (details, dosage, frequency, etc)- has surgery been discussed as an option? (if so, what kind)- is there any nerve pain/damage associated?- what is your doctor’s action plan for treating you?

providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

please take a look at our forum rules: forum rules

please remember that no one at spine-health is a formally trained medical professional.
everything that is posted here is based on personal experiences and perhaps additional research.
as such, no member is permitted to provide
  • - analysis or interpretation of any diagnostic test (ie mri, ctscan, xray, etc)- medical advice of any kind- recommendations in terms of medications, treatments, exercises, etc

what could be good for someone could spell disaster for another.
you should also consult your doctor to better understand your condition and the do’s and don’t’s.

it is very important that new members (or even seasoned members) provide others with details about their condition(s). it is virtually impossible to help another member when all the details we have are
i’ve had this for years, it hurts, i cant move my shoulder – what could this be, what treatment should i get?

diagnosing spinal problems can be very difficult. in many ways its like a game of clue. especially, when the diagnostic tests come back negative – no trouble found! then its up to the patient and the doctor to start digging deeper. the doctor is like a detective. they need clues to help them move along. so, you as the patient need to provide the doctor with all sorts of clues. that is like it is here. without having information about a condition, its impossible for anyone here to try to help.

specific comments :
even though your thread was long, we need more specific details as outlined above

personal opinion, not medical advice :

--- ron dilauro, spine-health system moderator : 05/26/15 12:56est


  • Välkommen! I lived in Sweden for five years and went to Finland a couple times. Your English is great!

    Sorry to hear about your issues. It's not fun being young and in pain. Hopefully you will find some solace here by talking with people who understand what it's like to live a life in pain.

    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • SavageSavage United StatesPosts: 7,385
    It is very difficult to navigate through painful issues...esp when you have had bad experiences in childhood.

    Because you are 15 and still very young, you may be able to catch things early and take charge of your condition in ways that may benefit you now and also, into your long term....future adult life.

    Although, I do not share your hyper mobility condition......I do have a few thoughts on how to you may be able to care for yourself. You are the one that needs to learn best ways to cope and take care of your body so you have fullest life possible.

    You said your teacher forced you into treatment at the age of eight. Although you may not agree right now, the teacher was paying attention and wanted what is best for you.

    It is possible that your experiences with PT at that time may not have been what you needed.
    Usually treatment for HM is not aggressive.
    Also, at the age of eight, your ability to communicate your feelings .....as re to response to treatment... was limited, by virtue of your age.

    You said you do not want to go back to PT because of those childhood memories. But that was your perspective as a child.
    Now, with maturity, you able to take more active part in your treatments and your feedback as you respond to treatment.

    I am not giving you medical advice, but only shared experience and thoughts that I hope to benefit u out.

    From what I understand, relatives who have your condition, one of the main goals to physical therapy is to teach you how to control how your body rests on your joints.
    For ex....when at rest, just standing, it would come natural to the body to rest at extended part of the joint. That would strain the area..leading to pain, falls, poor posture....

    Part of PT would be to teach you how to recognize the appropriate area of your joint to bear the weight. You may need to...like...scoot it up a bit. Hope that makes a little sense. No doubt, therapist could explain better with appropriate words. :)

    At the age of eight, when you were told to stay aligned...your condition would require you to be taught where that alignment is for you

    As you practice, it would become second nature to you and you will be able to do it without thinking about it. That anyway is one of the goals.

    You said you have had no proper training. I do not know it that includes..no proper education re your condition , also.
    To see a doctor now at your age,..... with your maturity and ability to ask doctor to repeat himself if there is anything you do not understand....seeing the doctor I think would be very beneficial to you.

    It very good you found this site! This site has wealth of info!
    You can use......search.....on this site, upper right on page. Type in your concerns and you may be led to older posts, articles, videos ...all in every person language and easy to understand.
    This site helpful, also, due to coping with chronic pain, and.... it is not unheard of for HM to effect spine to have too much movement.

    I used search and found info on HM. One post was esp interesting to me as it related to one particular relative of mine.
    It may be helpful to you. The post on this site was called...back to square one....and post by ....deb down under..... I found most helpful to me with my family.

    Please give your doctor, rheumatologist ??...... a chance to help you through your condition and pain.
    If doc thinks PT to help you, please give it another try for you caring for the you here and now and the you, the woman you are in the future.
    I apologize if my post too long!
    Esp since my stroke, I have difficult time finding word for meaning in my head, so I use too many words. :)

    Please keep us posted with how things are going for you...or any questions and concerns.
    We are here too support each other through our life experiences.
    You are not alone! Hang in there!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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