16 years old, with OA, CFS, Fibromyalgia, nerve pain and

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iggly_pop
iggly_pop Member Posts: 27
chronic daily headaches.
I feel incredibly alone and have had problems with musculoskeletal issues since i was seven, i was only diagnosed in June 2009 by a doctor who i class as a miracle, after ten years of a lack of treatment and diagnosis.
After ten years of being on painkillers constantly, i decided to come off them in december 2008 when tramadol and 30mg codeine stopped working. I am studying A levels at college, but find it incredibly difficult to fit in, and although i dont really discuss my condition,unless asked, i know that the adaptations i've required really do make me stand out, and this makes things rather awkward. My parents struggle to support me when i speak to them they dont understand, which i can comprehend as i barely understand it let alone for someone else.
In all honesty i'm just looking for a bit of guidance on any new found coping mechanisms just to give me a boost and keep me going.
Any information you could give me i'd be incredibly grateful, sorry about the lengthy first post, and thanks again

Rebecca

Comments

  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Rebecca,

    The helpline people are really good and they will get back to you soon but I just wanted to say hi and welcome to the forums. Your doing really well I think so just hang in there and hopefully you will get a lot of info here. I get a lot of nerve pain and there are tablets that can block it that work very well, I have pregablin but some others have gabapeptin. If you post over on the LW or the Young peoples forum you will also get a lot of support from them cus they are a good lot here. Take care Cris
  • iggly_pop
    iggly_pop Member Posts: 27
    edited 30. Nov -1, 00:00
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    Hi thank you for the welcome :)
    I tried pregabalin for three months from september to the end of december a while a go and it made my life a misery, anxiety attacks, blackouts, pins and needles not nice, my specialist is running out of ideas i think, as he is the only one who sees me, he's struggling to get anyone else to, as i'm in between adult and paediatric medicine, so i cant go to a CFS consultant or to an Expert patients programme. Bit lost really. My doc mentioned something about using specific anti-depressants to try and target the nerve pain, but i'm unsure whether this is a good idea, as i'm studying 5 a levels and dont want anything to interfere with my aptitude at my subjects. With your nerve pain do you have any numbness or pins and needles?
    Thank you again
    Rebecca
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Rebecca,

    Oh flower its just not fair for you. I know the pregablin does have some hefty side effects and I hated the anxiety and actually the hallucinations but for me it was better to have that than the pain. The gabapeptin is the generation before and its often used for nerve pain and maybe its kinder to people? I don't know cus I went straight to the pregablin and worked my way through the side effects........ I still get some even after 2 years or so.

    I have a lot of nerve pain and some is numb and some are pins and needles and also if I look down I get electric shock type pain down my arms if I am sitting and down arms and legs if I am standing.... That’s what the pregablin stops. I know thy were talking about the anti depression with me for nerve pain and sleeping cus I have trouble doing that and a lot of people take something that starts with an A and say they are good.

    hey well done for even being able to do A level let alone 5 :D I really do hope it will get easier for you pain wise and the help lines are so good they might be able to help you a lot more than I can.

    When do you see the Rumo again Rebecca? I just wonder if they can help you better than the gp? I see the pain clinic very regularly but as you say your between adult and paediatric treatments so they may not do that yet? If they do it might be worth asking. You hang in there and its nice to meet you though I so wish you didn't have all this. Cris x
  • iggly_pop
    iggly_pop Member Posts: 27
    edited 30. Nov -1, 00:00
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    I have only ever seen one rheumatologist, she was terrible and this was about three years ago and put it all to psycho sematic pain, now i only see one specialist who deals with adult pain clinic things, but cant actually refer me on to anyone else until im 18, its all been very thrown in the air due to my age, as they couldnt understand how it could possibly be anything but JIA or RA in someone my age. So diagnosis was exhaustingly slow and now i only see the one. Honestly i dont think i'd be able to find another rheumatologist until i move for university due to her being the lead for the clinics in the hospitals which i would go to. So its literally going to see the pain clinic doctor, him saying your doing well and read the CBT book, see you in three months and he cant really do much bless him. Just gotta get through these two years and jsut need some coping mechanisms to help me with it. Been denied entry to any meetings via hospital with people similar to me due to my "impressionable" age hence why i think this website will be a lifeline. just feel very misunderstood and extradited. How long have you had your joint problems for? How long did diagnoses take for yourself?
    Thank you again
    Rebecca
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Rebecca,

    Oh I had the x ray on my knees at 15 or 16 and they wouldn't have it that someone that age can have oa! Well as you sadly know they can. I had the knees cleaned out and they removed the cartilage and that really helped but not till I was 18- 19. I been lucky with the knees ever since but the feet and then my spine and neck now they went into some kind of warp :lol: Had my feet rebuilt the 1st time in my late teens and early 20's, had major spinal surgery at 27. Its not easy is it?

    I am old and haggard now but I do remember the isolation in school and college and well I also know you will get through it..... yeh I know old fogies always say it don't they :wink:

    Cope mechanisms sort of tailor them selves to the person if that makes sense? Mine came about sort of your age and well its got a lot to do with music (and you might be one of the few people here who like the music I like as well) and its possible the CBT book could help but is there any chance you could see someone for real to hep you developed and use the relaxation stuff? For me music really way the key and well I know the helpline people will be far better at making suggestions than me but counselling in later life has really helped me and I am sure it would have at your age cus I was angry :roll:

    There is a young peoples forum here and the AC site has a young one as well on it, I think its for under 15's and maybe that could help you too? You hang in there and I so hope it will all come good for you soon. Cris x
  • minky67
    minky67 Member Posts: 2,328
    edited 30. Nov -1, 00:00
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    Hi Rebecca,Nice to met you but sorry youve had to find us.
    I also have Fibromyalgia & OA, im 42 & have had problems since i was 17 & had a serious motorcycle accident & had back injuries & Laserated the tendons in my right foot & had to have it skingrafted. I also had Tenosynovitis in my right hand.
    I had to just get on with the pain for yrs & saw the gps many times, getting refered to different people over the years for different problems.
    After i had to stop working due to my neck totalling seizing up,pain in my knees & right hand i was eventually refered to rhymy. There i got dx with OA in Aug 08. Then i got refered to pain clinic were i was then told i had Fibro & IBS.
    The pain clinic have advised me to use Tens machine,read book on CBT & im now waiting for a course of acupuncture to see if that helps.Im also waiting for an appointment for an OT for some more help around the house & different splints. I use crutches to walk outside. I always stretch first thing in the morning & try to do stretching exercises, hot baths & heat help with my joint pain.
    I try to keep as mobile as possible & try to keep as busy as possible to distract from the pain.
    I take Gabapentins & the side affects for me are very slight & i get on well with them.I also take Tramodol,Oramorph(for break through pain) & Amptripyline at night to help with sleep & relaxing the muscles.I dont sleep well as most of my joints are affected with the OA including my neck & spine.I am always tired as thats part of the fibro,my muscles ache all the time & the meds dont help with the IBS. Im pretty sure that ive suffered with Fibro most of my life & needed the dx to realise what fits into place with it all over the yrs.
    If i can answer any of your questions i will try to. Im not full understanding it all yet but im trying anything thats thrown at me to try & help.
    You can PM me if it helps. Take care & i hope you find some answers & get some help soon.The helplines have leaflets on Arthr & Fibro & im sure you'll get some answers from them tomorrow.Sorry i cant be of more help.
    debs
  • helpline_team
    helpline_team Posts: 3,576
    edited 30. Nov -1, 00:00
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    Hi Rebecca

    I see the night owls have been keeping you company, and I'm very glad they were there to give you support as night time can be the worst sometimes. It sounds like you are having a dreadful time and caught in the age trap. How frustrating and totaly unfair. It is difficult to know exactly what specific guidance to give you on self management without knowing more details. For this reason I would encourage you to give us a call on our freephone number which is also free from most mobile providers, or Private message us.

    We have lots of information which you may find helps but in the mean time I was wondering if it would be possible to get some pain hypnotherapy from the pain clinic as medication gives you side effects and as you rightly said you really don't need anything to affect your studies right now, as life seems hard enough.

    It may help, in case you haven’t already, to have a look at our self management booklets: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets feel free to download any or PM us with your full name and postal address for an information pack. But as I said before it would help to know a little bit more about what is going on.

    In case you haven’t already heard of them CFS/ME Uk has support groups over the country: http://www.meassociation.org.uk/index.php?option=com_content&view=category&id=106&Itemid=204

    ARC information booklet on Fibromyalgia: http://www.arc.org.uk/arthinfo/patpubs/6013/6013.asp

    Resources for Young people at Arthritis Care: http://www.arthritiscare.org.uk/LivingwithArthritis/Youngpeople
    I hope some of this information helps, We look forward to hearing from you.
    Best wishes

    Simona
  • iggly_pop
    iggly_pop Member Posts: 27
    edited 30. Nov -1, 00:00
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    Thank you all so much for all the help, after ten years its so nice to be able to have so much information from people who have been through similar things, rather than a doctor turning round and saying sorry we cant do anything, or just try to keep coping. I'm gonna give the helpline a call at some point soon to try and give you a bit more information and i would really appreciate all information and leaflets you could send me, could you let me know who to send the address to
    Thank you all again
    Rebecca
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
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    Hi Rebecca,

    if you email them at the helplines on this link to give them your address or if you ring them ( and thy are really nice and also know a huge amount of stuff) you can tell them then.

    Helplines Team <helplines@arthritiscare.org.uk>

    Hope you had a decent day and when you get all the leaflets get your Mum and Dad to read them as well cus it might help them to understand what your going through. Its hard though to see someone you love going through pain etc so it might just be that thats clouding the issue. Good luck flower and just remember your not alone cus us lot old or not do understand. Take care Cris x