22, in constant, non stop pain but apparently I'm too young

tillyroo
tillyroo Member Posts: 7
edited 25. Aug 2013, 15:32 in Young people's community
Hiya, I'm new here

I'll try to keep it short and sweet! I'm nearly 23 years old, I have been type 1 diabetic for over 10 years and was extremely poorly controlled for 8 of them which resulted in a lot of damage throughout my body. In short, I've got the body of an old lady, I display diabetic complications you'd expect to see in someone in their 60's and up...

For the last year however, I've had moderate shoulder pain, mostly in my left. It would maybe flare up once or twice a week, and the bones would feel 'crunchy' and the general area very sore and tender. I went to the doctors, she examined me and said she thought it was just knots in my muscles and that sports massage would help, I went a couple of times once a week and it would soothe it a little but half an hour the pain was back. It slowly got worse; I found that if I was to say, suddenly throw my arms in the air, or reach up for something quickly, I'd have a ripping sensation surge from my shoulder through to my forearm. This pain would persist for about a minute during which I was literally speechless. This happened maybe once every other day. I went back to the doctors, was referred to physio and told I had shoulder instability. At first he thought I had hypermobility but said he thought it was more likely to be shoulder instability, insisting I had injured it. I have never injured my shoulder, not once.

I tried to persist with the physio but couldn't, I had exams at uni and the pain that came after physio was too much to deal with. I left it for a bit whilst I was busy, but maybe two weeks ago, everything changed. Whilst my shoulder has, for the past year, crunched/caught/popped, it got ten times worse. Varying from day to day, my shoulder will sound like there is gravel inside, will pop, catch, if somebody puts their hand to it they will feel it grind/crunch, and I can literally feel the bones rub together. The pain is debilitating. I've been taking tramadol, and I am incapable of doing anything when I have to take it. I don't sleep properly, I wake up every other hour in pain. It's also worse at night; a dull ache pain and sometimes a grinding, gnawing pain, sometimes sharp.

So I booked a doctors appointment and went yesterday. I thought, right this has to stop now, they have to figure out what this is, it's been a year! The doctor I saw was a new, junior doctor. I told him what's been happening, he wrote it all down. Then before he had even examined me, he told me I was much too young for osteoarthritis, and it was very unlikely that that what was happening. He asked me if I'd tried paracetamol! I said, yes, but 100mg tramadol hardly touches the pain, so you can imagine how helpful paracetamol is. He asked me to raise my arms above my head (which I can't do) and then tried to force them, which caused the ripping pain. He asked me to put my arms behind my back (which I can't do myself) and then he forced that too; more ripping pain. He asked me to sit back down but I asked him to feel the joints, and he agreed that there was definitely a grinding, popping sound.

I sat down and he asked me what I wanted to do.. I was baffled. I said maybe an Xray? And he said yes it might help. He went to get the advice of a senior doctor and she said to send me for an X-ray but that it probably wasn't OA. I felt like he must have thought I wanted it to be OA, which I don't of course, but I do believe that diagnosis gives you power. Once I know what I'm dealing with I can act on it. I felt so belittled, I wanted to cry... the last two weeks have been a blur of nothing except pain and depression, yesterday was the first time I'd left the house in 2 weeks. I can't cope with this unbearable pain and he's just sat there asking me if I've tried paracetamol and that I'm too young for arthritis.

Have any of you had difficulty getting a diagnosis, because of your age? How were you diagnosed, with OA? What should I do next? I go back to uni in 5 weeks and as it is I am completely dependent on tramadol, I'm choosing between being 'with it' and being in pain. Thanks for reading, and sorry for warbling on!

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Tillyroo, it's nice to meet you but I am so sorry that you have had to find us.

    I for one don't think that you're too young for OA, especially as you already have an 'older' body thanks to the diabetes touble. It is unusual for OA to happen iin younger people but it is not unknown and I think you need to stand your ground on this one. Ultimately, if it is OA, then it is the GPs you deal with who will be giving you what treatment is available; this usually runs along the lines of pain relief and maybe an anti-inflammatory medication. A steroid injection could be another option but, as I am not a doc, I can't say for sure that it would be suggested.

    Please let us know how you get on - if you would any further help or support then ring the Helpline here (it's a freephone number listed on every page) and post again on the Living with Arthritis board, there are some on there with affected shoulders and they will know much better than me about how it feels. I have arthritis from top-to-toe but so far my shoulders are OK. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillyroo
    tillyroo Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you so much for your reply! I'm going to repost this on the other board like you say. I know it's hard to say if it is/isn't arthritis over the internet, but I feel like i'm going crazy... in tonnes of pain but just getting fobbed off!
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello from me too, Tillyroo.

    I would endorse all that DD has written. You are certainly not too young but it is unusual so I guess not many GPs come up against it. I was only 15 on diagnosis and the diagnosis seemed very straightforward but mine is RA. The x-ray might give you some clues as to what's going on. I hope so.

    Now please bear in mind that I am not a doc and have no medical training at all but I do wonder if things might not be so gloomy as they appear. Frozen shoulder can happen to anyone for no obvious reason and it does happen more often to those with diabetes. It can be very painful while it lasts (My daughter-in-law had it) but does go away and is not connected with arthritis.

    This is what the NHS website says about it http://www.nhs.uk/Conditions/Frozen-shoulder/Pages/Causes.aspx. Please don't go googling all over the net as it's a scary and often very inaccurate place medically speaking but one or two sites, such as the NHS one can be trusted.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright