Young person with arthritis

Courtney1234
Courtney1234 Member Posts: 60
edited 28. Jul 2017, 03:36 in Living with Arthritis archive
Hi I'm new to this but just looking for advice. I'm 19yrs old and For the past 2 years I've suffered with flare ups in my right knee. It becomes very swollen and now I always have a constant clicking /grinding sensation when I bend or move it, sometimes which can be very painful. I've had MRI scans but nothing has seemed to show up on them. I've recently been started in hydroxychloriquine and have been taken that for 3 weeks. My rheumatologist is going along the lines that I suffer with chronic reactive arthritis as everytime I have a flare up, I become ill, the past couple of times it's been with tonsillitis, however this hasn't been definitively confirmed. I'm having a few side affects like headaches and nausea and not noticing improvement as of yet but I know it can take up to 3mnths. I was supposed to have sulphazalaine but my rheumatology team noticed I have a constant and raised ana which is positive. What does this actually mean? Nobody has explained it to me. I also went to see a orthopaedic surgeon last month and they have decided to do one more course of physio (I've already have one and it made me flare up very bad which caused me then to be ill so I have no idea why they're giving it again) and if no better in 6mnths then they want to do knee arthscopy. I'm feeling like I've just been forgotten about and passed around as nobody has a clear diagnosis for my condition. I haven't had any support from anyone and I have no idea what is going to happen.
Sorry for the long post. Has anyone experienced similar?
Thanks
Courtney

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us - and at such a young age too. It's good that you are seeing a rheumatologist because they are the ones who know a lot about a little (compared to GPs who know a little about a lot).

    There are many kinds of inflammatory arthritic conditions so it can take some time to determine exactly which is affecting you. I was born with eczema (an auto-immune condition) and then developed asthma (ditto) so for me this was just more of the same. I began with a swelling left knee but the swelling never reduced, it just kept getting bigger and bigger. Does your reduce? Is it hot to the touch when it is inflamed? What triggers the swelling? My culprits were walking, dancing, standing still for too long. Now my knees rarely swell but that is due to the medication I take to control my psoriatic arthritis; I took sulph for years but eventually stopped it as I realised it wasn't doing much.

    Doctors can fail to explain things so it is up to us, the patients, to ask questions and for clearer explanations. Like any professional it is easy to assume that the person in front of you has prior knowledge and is familiar with the lingo simply because you know what you're talking about :wink: Reactive arthritis is an odd one but it is usually triggered by illness, not vice-versa. I noted that you said somewhere that physio had made you ill - do you mean that it triggered the swelling? I found hydrotherapy a nightmare because, on leaving the pool, it made things worse rather than better; when doing my exercises I am much better now at knowing when to stop so I don't upset things.

    It is very difficult to adapt one's behaviour to the demands of these conditions, we need to learn to pace ourselves and maybe do things differently to avoid triggering further trouble. I am far older than you, have two kinds of arthritis and twenty years of experience but I do recall the bewilderment and confusion of my early years when my GP was dismissing me and my concerns (due to her ignorance and arrogance). I sorted myself out but it's true to say that GPs today are better informed and a little more knowledgeable about auto-immune conditions but we need the meds only a rheumatologist can prescribe. DD
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you but I am sorry you have had to find us - and at such a young age too. It's good that you are seeing a rheumatologist because they are the ones who know a lot about a little (compared to GPs who know a little about a lot).

    There are many kinds of inflammatory arthritic conditions so it can take some time to determine exactly which is affecting you. I was born with eczema (an auto-immune condition) and then developed asthma (ditto) so for me this was just more of the same. I began with a swelling left knee but the swelling never reduced, it just kept getting bigger and bigger. Does your reduce? Is it hot to the touch when it is inflamed? What triggers the swelling? My culprits were walking, dancing, standing still for too long. Now my knees rarely swell but that is due to the medication I take to control my psoriatic arthritis; I took sulph for years but eventually stopped it as I realised it wasn't doing much.

    Doctors can fail to explain things so it is up to us, the patients, to ask questions and for clearer explanations. Like any professional it is easy to assume that the person in front of you has prior knowledge and is familiar with the lingo simply because you know what you're talking about :wink: Reactive arthritis is an odd one but it is usually triggered by illness, not vice-versa. I noted that you said somewhere that physio had made you ill - do you mean that it triggered the swelling? I found hydrotherapy a nightmare because, on leaving the pool, it made things worse rather than better; when doing my exercises I am much better now at knowing when to stop so I don't upset things.

    It is very difficult to adapt one's behaviour to the demands of these conditions, we need to learn to pace ourselves and maybe do things differently to avoid triggering further trouble. I am far older than you, have two kinds of arthritis and twenty years of experience but I do recall the bewilderment and confusion of my early years when my GP was dismissing me and my concerns (due to her ignorance and arrogance). I sorted myself out but it's true to say that GPs today are better informed and a little more knowledgeable about auto-immune conditions but we need the meds only a rheumatologist can prescribe. DD



    Hello. Thank you for your reply. I'm so sorry to hear of your condition. My knee is constantly swollen and never goes down no matter how many times I ice or rest it!! It's such a pain. To be honest, some days I don't have to do anything for it to flare, if it wants to then it will.

    Yes, with regards to the physio it does bring on quite bad attacks which then do make me ill. I contacted them today to see where I am on the waiting list and they told me that I won't be contacted to at least the beginning of October. That will be 4 months waiting. And I have to see the orthopaedic surgeon in December to see how I'm getting on. I wonder if there is any point in me even having it but I will try everything (again) just to prove to them.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Physio is designed to help strengthen the muscles around the joint so they better support it. It is very easy to try avoid stressing the joint by moving differently and this spreads the trouble by throwing other joints out of kilter. Physio etc. isn't a fix but it can help - the trouble is it can be very easy to slip into bad habits when doing the exercises on your own - I know because I have. :wink:

    Have your blood tests showed raised levels of ESR or CRP? Mine used to be astronomical, now thanks to the meds they are too small to be measured. I have no idea what ANA measures are or mean (I am uncurious and not a doc) but my thinking is that the first step should be to get you onto at least one DMARD to reduce the activity of your immune system (as you are seeing a rheumatologist it is obviously this which is mis-behaving). I was born with eczema and went on to develop asthma so my immune system has always worked against me. Do you have any similar troubles or any relatives that do?

    As for the delays they are inevitable with the NHS; hurry up and wait is the name of the game. In my early days I would see someone in rheumatology every three months but now it's annual or, if I'm lucky, bi-annual: unlike many departments their patient numbers only increase. DD
  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Courtney
    I am so sorry to hear you have been having such a difficult time with your knee and getting the support that you need, it must be very difficult for you. We do have a helpline team if you would like to talk to someone you can reach them on 0808 800 4050. We also run courses for young people which you might be interested in attending, they are free you can find more information here https://www.arthritiscare.org.uk/our-services-and-support/events/filter:Young people and families
    and you can contact Sally on 0207 380 6512 or email [email protected]
    Best Wishes
    Sharon
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello Courtney

    Welcome to our little corner on the web. I'm sorry you have a need to find us though and especially at your age. I was diagnosed with Rheumatoid Arthritis not long after my 21st birthday. I was initially diagnosed with inflammatory arthritis and it took some time to establish what pattern it was leading to, and this isn't unusual. Unless you have a classic case, it can take some time. I wasn't very happy with my rheumatology clonic and about 1.5 years post diagnosis, I requested a second opinion. You are entitled to do so on the NHS. This was the best thing I did and I'm now under an excellent rheumatology clinic, getting good treatment. I would encourage anyone to do the same, even if you do stay where you are.

    Keeping moving and physio is really important. If it's making things worse, even temporarily, then it may be that it's too much and they need to tone it down. It can take some time to build up to get where you need to be.

    If you want to talk, my PM box is open. I'm now 29, so a fair bit older than you but I remember what it was like being younger with Arthritis.

    Take care.
  • Natalie1712
    Natalie1712 Member Posts: 63
    edited 30. Nov -1, 00:00
    Hi Courtney

    Sorry to hear you are going through this. It can be very tough to deal with, especially being so young! I was 17 when my symptoms first started and I'm now 27. It was only last year I was officially diagnosed with rheumatoid arthritis. I was in and out over the years getting told I had different things.

    My advice would be to keep at them and try to get put on some kedicitation and high will help to stabilise your condition.

    Good luck and let us know how your getting on. Remember your not alone!

    Natalie x
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Hi Courtney

    Sorry to hear you are going through this. It can be very tough to deal with, especially being so young! I was 17 when my symptoms first started and I'm now 27. It was only last year I was officially diagnosed with rheumatoid arthritis. I was in and out over the years getting told I had different things.

    My advice would be to keep at them and try to get put on some kedicitation and high will help to stabilise your condition.

    Good luck and let us know how your getting on. Remember your not alone!

    Natalie x

    Hi Natalie.
    Thank you for your reply and sorry to hear about your condition. The good news is that I am already on medication, however it's taken me over 2 years to get to this point. I have also been referred to an orthopaedic surgeon and if things have subsided by December then they will do a knee arthroscopy. I'm not one for operations but if it's going to potentially detect something than I really want to go ahead!! X
  • Natalie1712
    Natalie1712 Member Posts: 63
    edited 30. Nov -1, 00:00
    Hi Courtney

    Sorry just noticed the automatic spelling must have changed my last message to you.

    None of us like operations but if it helps I would say it's definitely worth it. I had one on my elbow a few years ago and it really eases up a lot of the pain I was getting.

    Hope you get some good results soon x

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