18 and feel like I have the body of an 80 year old!

sach
sach Member Posts: 6
edited 23. Apr 2017, 22:34 in Young people's community
Hiya

I just wanted to have a bit of a vent about what has been happening to me since September 2015. It's pretty long guys! In September I started having pain around my kidneys in my back which just got worse and worse. Went to the doctors and did a urine sample and said there was no infections and doubt it was kidney stones despite the fact that maternal and paternal sides of the family have them, told me it was muscular and sent me on my way. I was taking ibuprofen and paracetamol religiously and the pain would not go away. I went back to the doctors again a week later to discuss my pain and she placed me on 10mg Codeine X2. I took these for a week and a half and at this point I nearly passed out from pain and was bedridden for days.

I went back to the doctors again and explained how bad the pain was etc. and was placed on 250mg Naproxen X2 and once again this did nothing. At this point I had taken almost a month of Sixth Form due to the pain which made me sick and pass out. I was sent home from work and I went to A&E. A&E told me that there was nothing they could do as it was not an emergency (I could barely walk and my pain scale was an 8) and sent me to a walk in doctors at midnight. I saw the doctor and she asked me to bend over and said that she could see the muscles under my back spasming and that my spine also felt curved. She gave me diazepam to try and stop the muscles from spasming so badly and was told to get an x-ray. I saw a different doctor at my local doctors surgery and I was prescribed 50mg Tramadol and put forward for an X-RAY and I was diagnosed with scoliosis.

The tramadol was working and the pain was barely existent but only when I took my tramadol. On Halloween I bent down to get a sock too quickly and it put my back out again and I was bedridden. I managed to get to the doctors and had an emergency appointment with a different doctor again who told me that I probably pulled the muscles in my spine because of the scoliosis, told not to worry about it and put forward for physiotherapy.

Physiotherapy couldn't understand why I had a limp with scoliosis as was only 20 degrees and why I was in so much pain. They found I had bilateral hip pain and believed it was that which was causing the pain and not the back. I struggled to do the exercises as it was too painful and was put forward for hydrotherapy. The physiotherapist also tried acupuncture on my spine. This made things worse and I had another back spasm days after having acupuncture. They then referred me for another scan.

I had an X-Ray on my hips which came back a normal and also had an MRI. The MRI came back with the results that I had minor wear and tear in the disc between L4 and L5. The faucet joints around it also had minor wear and tear leading to the diagnosis of osteoarthritis (what the doc told me) and was told that the pain would only get worse with age and there was no cure so just need to keep taking naproxen and tramadol for the rest of my life.

I then started to get pain in my neck, my shoulders, the bottom of my feet and my hands. I once again had to go back to the doctors. They now believe the pain in my neck and shoulders is due to the tense muscles in my back travelling up my back, despite all the tablets im taking, the pain in my wrists carpal tunnel syndrome and the pain in the bottom of my feet plantar faciitis. I'm just getting worse despite the hydrotherapy, the tablets and the physiotherapy. I just feel so frustrated at the world with whats happening. This started when I was 17 and its now still ongoing at 18. I feel like I can't have a normal life and nobody understands!

Sorry for how long this post is, I just wanted to get it off my chest with people who hopefully understand. Thanks for reading!

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Sach

    That's quite some diagnosis story! So pleased that you felt able to tell it as there are lots here who will sympathise with you.

    You may like to take a look at the section of the web site "Coping With Pain" https://www.arthritiscare.org.uk/managing-arthritis/coping-with-pain which also has a link to a booklet you can download.

    Also, do get in touch with Arthritis Care Helpline on 0808 800 4050 if you need to talk to someone, or post on their section of the forum http://arthritiscareforum.org.uk/viewforum.php?f=21

    All best wishes
    Mod Bryn
  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Sach,

    What a story! I'm so sorry you have had such a run-around to find out what is going on. You don't mention blood tests, they are used to check for inflammation so could be useful.

    There are pain clinics, you could ask if there is one in your area and if so ask for a referral.

    Do you have family or close friends nearby? It can be helpful if you tell them what you want to achieve from the appointment - they can make sure you don't forget anything and can give support, a second pair of ears is always useful :P

    Do look around and join in - wherever you feel comfortable, empathy, support and distraction are always here!

    Take care
    Mod Yvonne
  • sach
    sach Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you so much for the kind words and support!

    I have had 2 blood tests and they all came back as normal, thought I popped that in there!

    Just hoping I will one day get back to normal, sometimes feel as if I'm not being taken seriously if you get me?
  • stickywicket
    stickywicket Member Posts: 26,253
    edited 30. Nov -1, 00:00
    Of course you feel frustrated, sach. Also scared and anxious I imagine. And of course it's OK to come on here to let off steam, though I didn't see much steam, only worry. You've had a very rough ride.

    So, it seems you've been diagnosed with OA which has arisen as a result of your scoliosis. According to NHS Choices, anyone with scoliosis, let alone a young person, should be referred to a scoliosis specialist. http://tinyurl.com/zteywne Has that happened in your case? If not, I think you should ask to see one.

    Also, according to the Scoliosis Association UK, back pain, worn discs and strained muscles can all be part and parcel of scoliosis. This doesn't sound good but, with the right treatment, the situation can be improved a great deal. http://tinyurl.com/zteywne

    By the way, I'm not a young person (by any stretch of the imagination) but I was 15 when first diagnosed with RA and, although there have been many times in my life when I felt different, out of things, unable to join in and such like, I consider I've had a very good, interesting, happy life. I hope you will too.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • sach
    sach Member Posts: 6
    edited 30. Nov -1, 00:00
    The doctors couldn't put me forward to see a scoliosis specialist because i was 2 months from being 18 and once it was processed and I saw a specialist it would be too late to treat so was just left.

    Doctors never told me that osteoarthiritis was linked with scoliosis! I was just told it would just get worse the older I got because the disc and faucet joints are degenerating. Thank you for that new bit of information!
  • stickywicket
    stickywicket Member Posts: 26,253
    edited 30. Nov -1, 00:00
    Sach, the NHS Choices link that I gave you says anyone diagnosed with scoliosis should see a specialist, not just those under 18.

    With a proper exercise regime the degeneration in your discs and facet joints can be slowed down and it should be less painful.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • WyleECoyote
    WyleECoyote Member Posts: 38
    edited 30. Nov -1, 00:00
    Hi,

    I wanted to say hi there because I was diagnosed with OA in L4-L5 and facet degeneration without scoliosis but with lordosis of 80 degrees which is supposed to be no more than about 65 degrees (I think. Don't quote me.)

    My symptoms of OA (feet) started when I was your age with the back starting to cause serious pain in my mid to late 20s (I'm 45 now.)

    It's not a lot of fun is it? Thank heavens for Tramadol. It wasn't available to me as a young person. I take it now and the only drawback is it keeps me awake so I have to throw down an over the counter sleep aid to counterbalance it otherwise I lie awake all night.

    I've lived a full and busy life, completing my university education to postgrad level, working pretty hard in the private sector and moving to live in several different countries. Not to mention managing to stay married to a great guy for over 20 years who is really generous and frequently reminds me that I expect too much of myself considering I'm in pain MOST OF THE TIME and don't get much sleep. It's starting to slow me up now though. Or maybe I'm finally LETTING it slow me up.

    It can be utterly overwhelming at times. Particularly when you cannot sleep and cannot walk more than half a km without the knowledge that the pain from that amount of exercise WILL be agonising later that night. But there are also many wonderful experiences and things you will achieve that make persisting and trying to find the best treatmen available worth the considerable effort.

    The most frustrating thing about OA in your early life is that no-one believes you have it. Or understands what it's like if they do believe you. Only now am I starting to feel like a normal person because finally my peers are starting to experience OA too. It's a very strange feeling suddenly feeling a bit normal after all the years of being something people couldn't understand.

    I'm not sure if these thoughts will make you feel better but I've never talked to someone who got it early like me before and I think I'feel tried to put every thought on the subject in one post! Forgive me please. I wish you all the very best and I really DO understand what you are going through. There is a way forward and you will find it.