Is this normal?!

Options
apm93
apm93 Member Posts: 4
edited 5. Aug 2015, 05:31 in Living with Arthritis archive
Evening!

I've never done any forum things before, so please excuse my post, I have no idea what I'm doing!

I'm 21 years old, and I've had ongoing joint problems for the last 2 years or so. I've seen several doctors, even switched surgeries, several physios and been into a+e a couple of times when my feet couldn't support my body weight. I finally got referred to rhuematology, where I got diagnosed with 'inflammatory arthritis', but not told which kind.

I was kind of expecting the diagnosis, given what friends and family had said over the last couple of years... But I do have one concern ., a symptom that nobody has ever mentioned, and no doctors seem to be concerned by it...

My knees and shoulders seem to pop .. I'm not sure how to explain it other than its as though they slip out of place. My knee is constant, and you can physically see the joint slipping out of place every single time I move.. It's more uncomfortable than painful though..,

My shoulder however, is a different story .. It only seems to happen throughout the night, and I can only describe it as it feels as though it really dislocated,, I wake up in agony, but can usually get it back in place reasonably quick..
Last night though, was horrendous.. I have honestly never been in so much excrutiating pain.. And it wasn't going back in! Next door must have thought I was being murdered!! I ended up taking today off work due to the aftermath, being so achey from it...

Is this normal?! Does anyone else feel this?! I'm worried it's something else on top of arthritis...

I work full time in an office and part time as a performing arts teacher.. My partner has to care for me though, from getting me dressed to making my drinks... Almost every joint had now been affected in one way or another ... I'm worried that I'm not going to be able to keep my jobs, as I'm only Young and don't want to give in due to ill health!

Please someone tell me it's normal?!

And sorry for the long post!

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Options
    Welcome to Arthritis Care Forums amp93 from the moderation team.

    It sounds as though you have had a really rough time, but you have certainly come to the right place now.

    As mods we are here to help with any problems you may have while using the message boards.

    There are lots of lovely people here who have a wide range of experience of arthritis and the problems of living with the condition. I am confident that you will get plenty of support now.

    I look forward to seeing you posting on the boards.

    Best wishes

    Moderator AC
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Hello, it's nice to meet you but I am sorry you have had to find us. You say that you have been diagnosed with a form of inflammatory arthritis - welcome to the club! There are around 300 kinds of inflammatory arthritic conditions so pin-pointing which one is not an instant process: I too had that general label for a number of years until my skin helpfully obliged with a bout of psoriasis on my palms and soles. My label was changed to psoriatic arthritis but the meds remained the same.

    You don't mention any medication being recommended - has any been suggested? It's good that you are in the system with a rheumatologist, GPs are not that well informed about our conditions. As for the joint 'popping' well, I've not had that but it could be down to a number of causes including loose ligaments: when you say your knee pops out do you mean the knee cap? That is not part of the joint, it's there to protect the joint and can easily move out of place, it can even be dislodged to the back of the knee. I'm surprised that the physios you have seen haven't been able to help you with this, to my way of thinking that is odd.

    You are indeed young for this but not the youngest I have come across on here. We have a number of members in their 20s and I hope they spot your post and reply. I wish you well and don't be afraid to ask questions, we will do our best to answer them but we are only practising patients, not practising doctors. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • apm93
    apm93 Member Posts: 4
    edited 30. Nov -1, 00:00
    Options
    Thankyou for your reply!
    I haven't been told which meds they plan to put me on.. He just said it depends on my results the dosage, but will probably be in tablet form (I have a major phobia of needles!), and I won't be able to have children on them .., I've spoke to a friend who also suffers and she reckons it will be methotrexate?
    I've been to physio for my knee earlier on this year.. He originally thought it was my muscle on my outer thigh pulling the knee cap I think?!! As I was (before all this) a gym nerd, and being a performing arts teacher, my speciality was in dance. He thought it was my outer muscle being so much stronger than the inner thigh , but as time went on and I had flare ups elsewhere, he signed me off and recommended I see someone in rhuematology as he thought it would all be linked,

    I got a call from hospital today, I'm back in on the 25th to discuss treatments and diagnosis, and I queried the 'popping', and was told it is fairly normal!
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    I'm sorry you've had to join us at such a young age but, unfortunately, inflammatory forms of arthritis are indiscriminate. I was diagnosed at 15 with RA but that's a long time ago.

    I can't remember ever experiencing joint popping though I believe it's quite common for both those of us with arthritis and those without. It's good that you've made your docs aware of it. I suspect the reason for their apparent lack of interest might be because, if connected with the arthritis, the medication should help. (Are you taking DMARDS?)

    I've certainly woken up with bad shoulder pain but that was just the arthritis itself and nothing to do with joints moving. Are you hypermobile? That might account for it. http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Introduction.aspx

    I'm a bit concerned that you say your partner has to dress you and make you drinks. It sounds as if your arthritis is not under control. Assuming that you've been on DMARDS for over 2-3 months it should be better than that. Maybe you should ring your rheumatology helpline for advice. Meanwhile there are lots of things you can do to help yourself - a lighter kettle, a different mug, smaller milk bottle and also devices to help with dressing (most of which I use :roll: )
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
    Options
    Hi, just wanted to welcome you to the Forum. I've got OA (osteo arthritis) and not RA so I can't really help. Please keep posting and reading the Forum. Perhaps you should try and see your GP and discuss your worries? It may also generate some effective pain control for you, I do hope so.

    You can get support re help with dressing and personal care through your local Adult Social Services. Have a look on your Local Authority's website or search "county/adult social services" and give them a ring.

    Also investigate aids and gadgets that may help. You'll be surprised what's available.

    You say you work. Please speak to your Line Manager(s) and let them know what your challenges are. Ask if you they can help with some reasonable adjustments. I've got a spinal support chair, a foot rest, wrist rests, a trolley to use to move things - all supplied for me by my employer.

    Use a search function and look for "The Spoon Theory" and "There's a Gorilla in the House". It may make it easier for people around you to understand why you sometimes say you can't join in with social events.

    Take care,
    GraceB
    Turn a negative into a positive!
  • Brutha
    Brutha Member Posts: 51
    edited 30. Nov -1, 00:00
    Options
    A lot of what you are experiencing rings some bells with me. I will just give you the lot where my shoulders are concerned, make of it what you will.


    My shoulders were the first indicators of something wrong and the main reason I went to see a rheumatologist, although I had many less restricting symptoms. Simply put: My shoulders hurt. I was used to messed up shoulders for years but this was new. Like I was being stabbed through my back. When I was sent for an ultrasound to see what was inflamed I couldn't put my hands behind my back. I was waking up in agony and assuming I had slept with my arms above my head. Which I was never built to do.

    My noises: About 6 months before i was seeing a rheumatologist and being investigated a regular clicking started. Then other clicks and grinds added over time. New noises come, old noises stay. Once a joint starts clicking or grinding it seems that noise stays, every time that joint moves, the noise occurs. It's incredibly reliable, Now it sounds like a percussion section when either shoulder moves in either an outward motion or an arc- if The joints are in a period where they are settled enough to achieve those motions. Nothing in the scale of what you describe though. The popping happens occasionally. One hip, both knees and bothshoulders on occasion.

    The background:, when I was 14, 25 years ago now, I suffered what the doctor called "subluxation" of my right shoulder. It would just pop out for no reason, at school, at home, wherever. And it would hurt. Not as much as the RA causes it too now, but enough. I ended up with surgical intervention and new ligaments in that shoulder and it was pinned for 3 months or so. This didn't cure the problem and I decided to hell with the doctors as the failed cure was far worse pain wise then the original symptoms. Over time I adapted to using that shoulder much less. Now I am kind of ambidextrous. I played cricket and bowled left handed, threw darts and played pool right handed. I will always carry weight on my left side.

    Over some time the muscles in my shoulder adapted and until the last 9 months/year I managed.

    Probably not completely normal, like yours are also probably not completely normal, but you aren't totally alone. The first time I got a steroid injection I got more movement and capability out of both my shoulders then I can remember for my entire life. I never thought that was even possible, I hope there is something there for you that gets this. It was possible for me, although it lasts about three weeks and is kind of depressing when it goes, but it's an ongoing process to find a balance that works. It will come. my rheumatologist assures me we will get to the stage where most days it feels like I have had a recent steroid injection.

    Btw: I was also told it was inflammatory arthritis. Then a few visits later doc saw erosions on the hand x-Ray and changed it to RA. Medicinal approach was unchanged on that visit. Part of me wonders if doc new already and was easing me into the world of all this.

    Sorry for the volume of info, I hope you find something useful.

    Best wishes,
    Mark
  • apm93
    apm93 Member Posts: 4
    edited 30. Nov -1, 00:00
    Options
    Thankyou so much for the responses!
    Your reply was amazing mark, thankyou .. Definitely don't regret looking into joining forums now as I don't feel as alone in it anymore!

    As for work, the office job is a nightmare.. there are a small handful of people who seem to actually care.. But my boss for example, hasn't once asked me how I am through any of this. As soon as I got a diagnosis though he did say that he will provide whatever the company can to help me out - voice recognition stuff and what not... I get the impression it's just to make sure the job gets done! As I say, he's not once asked if I'm okay or anything...
    My teacjing job is more challenging physically, but my boss happens to be my best friend! So in terms of support and flexibility, it is amazing... I have warned her though that I don't think I will be able to committ as much now after the last few months, and she has found me an assistant who can cover when I am unable to attend.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    The standard initial DMARDs (disease modifying anti rheumatic drugs) are sulphasalazine and methotrexate. I was begun on the former then the latter was added. I have been on the sulph for thirteen years, I had to stop the tablet meth because I developed the wrong kind of rash. If you are given either of these then yes, should you in later life wish to conceive then you have to come off the meth; from what I have read on here I understand that some have been allowed to continue with sulph.

    RA is a kind of inflammatory arthritis, as is mine and a good few others. The umbrella term is initially awarded until a clearer picture can be gained but the meds will remain the same no matter the 'official' diagnosis. These conditions are triggered by an over-active auto-immune system and the meds are designed to suppress it, thus reducing disease activity. Some are fortunate in that just the one medicine is enough to sufficiently relieve the symptoms and I hope you will be included in that number. In my experience on here the quicker the diagnosis the better the outcomes. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    I apologise for my first post :oops: I had somehow managed to miss your second one which rendered my remarks and questions about meds completely redundant :oops: I do hope things will become easier once you are started on the meds. As for your boss - one of the problems with arthritis is that it's invisible so we don't get the sympathy or attention that a big bruise or a broken limb would elicit. Your boss has offered to provide the necessary things for you and that's the main thing. Your friends are the ones who actually care about you and are to be treasured.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Options
    I just wanted to welcome you to the forum, sorry I can't help you with your question but you have had a lot of good replies. This is a great forum and I'm sure you already feel like one of the AC family! :cheers: