Help needed

Courtney1234
Courtney1234 Member Posts: 60
edited 3. Oct 2017, 02:39 in Living with Arthritis archive
Hi was just wondering if someone can suggest some advice,

So basically back in June I was put in hydroxychloriquine for symptoms which nobody can seem to identify. Cut long story short I ended up stopping these tablets in August due to a wide range of side affects, headaches, high LFT, rashes etc.

This morning I had an appointment with my rheumatologist. She's stated she is not going to give me anymore medication as she doesn't give medication for unidentifiable symptoms, (yet she was happy to give me hydroxychloriquine). She's told me there's nothing more she can do for me. She's sending me for an scan on back, my back isn't the problem it's my knee that it. I'm also under an orthopaedic surgeon and he's recommend a course of physio and if no better in December then will organise a knee arthroscopy. Rheumatologist has decided to leave it in the hands of him now besides issues in my blood, high anti-bodies and raised liver, also occasionally high CRP when having a bad flare. She didn't even look at my knee today and doesn't seem one bit intrested on how I fee.

I'm feeling quite upset and disappointed as my rheumatologist has just left me go yet again. 2 years I've been back and forth with this problem and nobody has answers. I'm only 20 years old and live with a constant swollen knee, pain, extreme fatigue. Is there anyway I can request further help and support? I've had no guidance from nobody and feel like she's not believing a word I say.

Sorry for the long post I'm just desperate to get answers. It's been a long, tough 2 years Thankyou

Comments

  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    It must seem as if no-one is doing anything. The need for 'medical answers' lies deep in all of us. But medicine is not an exact science and sometimes it's just difficult to work out what's going on.

    Actually, your rheumatologist has done quite a lot. She's ordered a scan (Quite often, knee problems can result from the spine) and tried hydroxy and, really, if the evidence for an autoimmune arthritis is not very high, surely it's better not to 'medicate' you with powerful drugs which could do more harm than good?

    I hope you'll have more luck with the orthopaedic surgeon and the physio. I remember you saying earlier that physio had made you unwell and I hope that won't happen again. As for the blood results - I can only refer you to Arthritis Care's excellent page on diagnosis https://www.arthritiscare.org.uk/do-i-h ... /diagnosis
    . You can see from this that it's a minefield with few clear cut answers because margins of error are so high. Plus (and I could be wrong) I don't think arthritis normally affects the liver, but the meds we take for it all can so it makes sense not to give you something that could make you worse unless there's a definite case for it.

    I suggest you go back to your GP and have a chat about where you go from here if the scan shows nothing and the orthopaedic man can't help.

    It's so sad that it's all such a mystery but, I think, better a mystery than a wrong diagnosis and treatment. Please keep in touch.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • barbara12
    barbara12 Member Posts: 21,102
    edited 30. Nov -1, 00:00
    Oh Courtney1234 I do feel for you and being so young, but the one things this forum has learned me is to shout and be heard..you make sure you make a list of everything it does help with appointments..and at your next one make sure they listen..not easy but you can do it..good luck
    Love
    Barbara
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Thanks for your messages. I feel so fed up and angry that I don't have answers. Like I said this has been on going for over 2 years and I feel like I've just been passed around as nobody has an answer. I feel like I'm not taken seriously sometimes. All I want is some answers to finally start feeling normal and have normal joints. Is that too much to ask for?
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Your anger and 'fed upness' is very understandable. We're used to docs making us better and when they can't it seems very unfair. I do hope the scan and/or the orthopaedic consultant can throw some light on things.

    I wonder if you're managing to exercise the knee at all? People worry about the pain of exercise but worry less about the damage that lack of exercise can do. Do you have to walk much / stand on it much for work? Achieving a balance is really difficult. I can still recall the pain of limping to school when I was first diagnosed. I think it's all harder when you're young. Friends don't always understand and you miss out on so much.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Courtney

    You may find it useful to actually talk to someone in confidence about your situation.

    The Arthritis Care Helplines can be contacted on 0808 800 4050 Monday to Friday.

    More details here: https://www.arthritiscare.org.uk/our-services-and-support/helpline

    Bryn
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Your anger and 'fed upness' is very understandable. We're used to docs making us better and when they can't it seems very unfair. I do hope the scan and/or the orthopaedic consultant can throw some light on things.

    I wonder if you're managing to exercise the knee at all? People worry about the pain of exercise but worry less about the damage that lack of exercise can do. Do you have to walk much / stand on it much for work? Achieving a balance is really difficult. I can still recall the pain of limping to school when I was first diagnosed. I think it's all harder when you're young. Friends don't always understand and you miss out on so much.

    Yes I have a very active job. I'm a teaching assistant in my local primary school so I am always very active. I also have a dog who's my life and I walk him everyday. Sometimes he gives me the motivation to keep going because on days where I don't feel like moving he encourages me to take him out.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I can understand the frustration, my trouble began in 1997 but I didn't begin treatment until 2002 (with no diagnosis) and lost time being bounced between orthopaedics and rheumatology. My symptoms didn't fit anything, they just vaguely resembled some kind of auto-immune inflammatory condition. Eventually rheumatology reluctantly decided I was their pigeon; the medical penny dropped when my skin helpfully broke out with pustular psoriasis on my palms and soles in October 2006 and the label PsA was attached to my notes. That traditionally begins in the smaller joints of the body, such as the fingers and toes, but mine opted for the left knee. :roll: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Yes I have a very active job. I'm a teaching assistant in my local primary school so I am always very active. I also have a dog who's my life and I walk him everyday. Sometimes he gives me the motivation to keep going because on days where I don't feel like moving he encourages me to take him out.

    I does sound as if you're leading an active life but I've found, with knees in particular, that when they hurt most is precisely when the exercises help. I think in daily life we maybe overuse some muscles and underuse others. So, with luck, the physio prescribed might really help. I do hope so.

    (I wonder, do you swim? Exercising in water is really good as the water supports the joint while we're exercising so it doesn't hurt as much.)
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Courtney,
    I'm so sorry you are having so much pain and you are so young.
    People {friends} your age wont always understand so that mus make it harder for you.
    As for being bounced about from one place to the other I do understand.
    It started when I had my first hip replacement, they were going to do a second one shortly after that one. They then decided it was my back that was the problem. I went back and forward from the orthopaedic surgeon [who did my first hip replacement] to a spinal surgeon because they thought it was my back. This went on for a long time. Eventually they did the 2nd one

    The most recent thing is I had and MRI {orthopaedic surgeon referred me} then I got a call saying he had referred me to a spinal consultant, he couldn't do anything more. I was referred a couple of months ago and when I phoned to get an idea when I might get an appointment I was told MARCH!!!!!!!!! MRI was in Aug.....so appointment if I'm lucky ill be March :shock:
    Someone else has said that you need to shout. That's true.
    I don't shout but I get in touch with consultants secretarys and talk to them. It does work if you talk to them and become friendly with them.
    GOOD LUCK I hope you get some help from some medic

    Love
    Hileena
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    hileena111 wrote:
    Hi Courtney,
    I'm so sorry you are having so much pain and you are so young.
    People {friends} your age wont always understand so that mus make it harder for you.
    As for being bounced about from one place to the other I do understand.
    It started when I had my first hip replacement, they were going to do a second one shortly after that one. They then decided it was my back that was the problem. I went back and forward from the orthopaedic surgeon [who did my first hip replacement] to a spinal surgeon because they thought it was my back. This went on for a long time. Eventually they did the 2nd one

    The most recent thing is I had and MRI {orthopaedic surgeon referred me} then I got a call saying he had referred me to a spinal consultant, he couldn't do anything more. I was referred a couple of months ago and when I phoned to get an idea when I might get an appointment I was told MARCH!!!!!!!!! MRI was in Aug.....so appointment if I'm lucky ill be March :shock:
    Someone else has said that you need to shout. That's true.
    I don't shout but I get in touch with consultants secretarys and talk to them. It does work if you talk to them and become friendly with them.
    GOOD LUCK I hope you get some help from some medic

    Love
    Hileena

    Hello Helieena.
    Sounds like your in a similar situation to me. It's awful being passed around from one person to the next isn't it? Having to go through the whole process 100 x is just exhausting. I definitely agree you need to shout to be heard. I've just had a call from my rheumatology nurse and she said I've not been referred for a MRI of my spine and pelvis. I'm soooo nervous as I really do not like that MRI machine!!! :cry: I was bad enough having my knee MRI and I didn't even go all the way in for that!! Wish me luck!!
  • Courtney1234
    Courtney1234 Member Posts: 60
    edited 30. Nov -1, 00:00
    Yes I have a very active job. I'm a teaching assistant in my local primary school so I am always very active. I also have a dog who's my life and I walk him everyday. Sometimes he gives me the motivation to keep going because on days where I don't feel like moving he encourages me to take him out.

    I does sound as if you're leading an active life but I've found, with knees in particular, that when they hurt most is precisely when the exercises help. I think in daily life we maybe overuse some muscles and underuse others. So, with luck, the physio prescribed might really help. I do hope so.

    (I wonder, do you swim? Exercising in water is really good as the water supports the joint while we're exercising so it doesn't hurt as much.)

    Im willing to try anything again. Last time I had physio it made the situation 100x worse and I was in soooo much pain. I'm hoping this time might be better. I have my first appointment next week. My rheumatology nurse phoned to today to say my consultant did order a MRI of my spine and pelvis. I'm sooo nervous of that machine :cry: i was bad enough having my knee MRI and I didn't even go all the way in the machine!!!
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    I think most people dislike MRI machines. Sometimes they let you bring your own music. Some people find closing their eyes helps. Try to focus on the good that might come of it.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • jennand
    jennand Member Posts: 121
    edited 30. Nov -1, 00:00
    I think most people dislike MRI machines. Sometimes they let you bring your own music. Some people find closing their eyes helps. Try to focus on the good that might come of it.

    I take an eye mask when I have MRIs. I don’t like the feeling of being confined so close my eyes. But, I get a compulsion to keep peeping. The mask stops that and keeps me calm.