what is it?

sitemum
sitemum Member Posts: 8
Hello to the forum. This is the first time I have asked a question but really could do with some feedback on my daughters condition. Back in August, she had sudden pains in her shoulders, elbows, knees, wrists etc, with some flu type symptoms, sore throat etc. The flu-ey symptoms went after a few days but her joints continued to hurt - some more than others on different days [migrated almost]. She is 25 and worked in a very active job until then. She hasnt been able to work since then due to the pain she is in. The doc thought at first it was reactive arthritis, didnt test positive for RA [her grandma had it] - had a scan on shoulder and wrist, no damage showed up. Now testing for ASpondylitus via blood test, but daughter only has limited back pain[?]. She gets flare ups, where she is worse for a week or so, with more fatigue etc and then settles down again to the usual level of pain. Joints are not swollen or red - apart from early on where her knee was a little swollen - and are not hot either. Is on naproxen which gives some pain relief but not brilliant. She finds doing most things difficult and if she i.e. comes out shopping for an hour or so, she knows she will suffer more pain the next day. She has morning stiffness, poor sleep due to pain and cant snuggle down comfortably! So, does anyone have any idea of what this could be? I know its a big ask with little info, but hopefully its a start! Thanks in advance. xx

Comments

  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    hi i am a member of forum not help team and we are not medicaly trained. but to me does sound like one of the 200 types of arther but it will take docs a while to work out which one. is you daughter seeing rhummy might be an idea to see one they are better with most of the arthiritis types than docs who tend to treat oa the exhaustion is awfull tell her to come on here there is a young section with lots of 20 somethings on good luck val
    val
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi valval and thanks for your reply. Yes, daughter is seeing a rheum doc in bath. She is waiting for a bone density scan and having bloods for a gene connected to ank spond - but she doesn't have the major signs of that I e severe back pain. Will see if she wants to go on the site for support - think it would help her. Xx.
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hiya, was thinking anky maybe fibromyalgia, but am no doc or specialist :smile:

    All the best.xx
    Clare xxeyeore-1.jpg
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi claire. I have looked at fibro and anky and daughter fits bits of each. As well as bits of adult onset stills disease. And she tested positive for human parvo at some time in her life - hence reactive arth was initial suspect. It does seem to take awhile to b properly diagnosed - meanwhile she is in pain and off work! It would help to know what she is up against so that we can, at least, begin to know how best to help her.
  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    the best way you can help her is to remember it is a fluctuating disease very rarely the same two days running. let her tell you when she needs help to go back to bed and sleep. only she can decide how each day is treating her. val
    val
  • helpline_team
    helpline_team Posts: 2,252
    edited 30. Nov -1, 00:00
    Hi Sitemum,

    Thanks for your post to Helplines. It can be very difficult when dealing with arthritis problems and continued uncertainty over the diagnosis. It's not possible for people to get clues about their diagnosis from posting on the forum, but we'd like to able to support you in ways that you find helpful.

    One good option is to consider ringing us as we can find out more quickly what's happening at the moment and be supportive.

    If your daughter is dealing with pain and practical day to day problems it is often worth her seeing a physiotherapist. If pain is not yet under control she can always ring the rheumatology specialist nurse for medical advice.

    If your daughter would like more information about what is known so far about her situation, we can sometimes help people rehearse questions to put to the rheumatology team.

    I hope we can help further.

    all the best

    Guy
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi again, yes she has an appt for physio in jan - it came through today in the post. she has the blood test for anky spon next week so that should either confirm or rule one thing out at least! She did say today that her back has hurt for months, lower spine, but she had kinda just got used to it and other joint pain over ruled/got more attention! Wait and see......
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Wishing your daughter all the best and good luck in getting the help she needs.

    I dont want tounerve you but you did say you wanted to know what you are up against. Well everyones experience is very different , some great some not so.

    I have had the same diagnosis for 12 years and the new consultant has decided that I dont without seeing me. It is a long story and I wont go into details, just to say that make sure she has someone to go with her to listen to what they are saying. Get a good supportive G.P and question everything.

    Sometimes it is a battle to get the answers so keep on trying. Your daughter is very lucky to have a supportive mum like you.

    Wishing you both well, take care.
    Please let us know the outcome.
    xx
    Clare xxeyeore-1.jpg
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Thanks claire. I have an older daughter with a v v rare neurological condition so am a bit used to dealing with medics, sadly! But this is a different kettle of fish so am doing some research. Hope u don't get too stressed w ur new doc - one does wonder what goes on in their minds at times...........
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Sitemum,

    Welcome from me cus I haven't bumped into you before.

    Its not fair for you or your daughter but one you have a confirmed diagnosis that might help. I hope the Rumo appointment goes well and they get to the bottom of this for you.

    I just want to say I was older than your daughter when I got the oa diagnosis (i was about 15) and am now 53 and still fighting back. There really is life after diagnosis and I just want you to know that.

    They have a forum for parents with kids who have arthritis and they are incredibly supportive as well. If you yourself need support (and there must be times when you really do find it very hard) post on Living With cus they are the most supportive folks out there.

    I don;t wonder into the parents one, a lot of us don't, cus I don;t have a child with it and so don't have that connection but I do feel for you.

    I also wanted you to know there really is life after diagnosis and your daughter will be ok though will have some restrictions by the bones, bless her. Its kinda important to know there is life after the diagnosis.... there really is. Nice to meet you and hope your can get things sorted for her soon. Cris x
  • helpline_team
    helpline_team Posts: 2,252
    edited 30. Nov -1, 00:00
    Thanks everyone for all your supportive replies to Sitemum. When those tests come back and you know what you have to deal with - please come back to us on the helplines because we have info about all the conditions and also treatments.
    We are all here to help your daughter through and to support you both.
    Hope all is well ?
    Penn
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi and thanks again for your support and positive messages for myself and daughter. So far the bloods for ank spon have come back negative but apparently there may be something on the bone density scan. Should be able to speak to the doc this week for a bit of clarification on that. In meantime she had a good xmas and is quite positive about the new year. I brought her a kindle as main prezzie as she loves reading but finds books are heavy and awkward to hold - kindle is much more manageable. So thanks again and happy and healthy new year to you all.
  • helpline_team
    helpline_team Posts: 2,252
    edited 30. Nov -1, 00:00
    Dear Sitemum.
    Glad to hear test came back negative for the ank spon at least that crosses something off the list. Let's hope the dexa scan (bone density scan) does reveal something closer to a diagnosis.
    Wishing you all a Happy New Year with some answers very soon.

    Best Wishes
    Simona
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Sitemum,

    Its, like Simona says, one more thing to cross off the list,. Sometimes it seems they eliminate as much as they can and whats left is what you have if that makes sense but maybe the dexa scan will help.

    Whats good is she is being positive us I honestly think thats the best way through it and you feel better in your self if you can do that. I know sometimes it can be hard (in fact sometimes I couldn't be positive to save my life :oops: ) but good on her for being so.

    Hope you both have a Happy New Year and that 2012 will be kind. I also so hope they will find out hat is gong on and be able to help her. Cris x
  • kittymedaughter
    kittymedaughter Member Posts: 81
    edited 30. Nov -1, 00:00
    Hi it does sound like your daughter may have Fibromyaliga, have you looked up the symptoms and compared it to your daughter. I was diagonised by a rheumy, so hopefully they will have answers for you. good luck
  • sitemum
    sitemum Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi everyone. Dont know if anyone will be able to add anything but daughter did ring doctor for results of dexa scan and it only showed up some issue with her right shoulder - to do with connective tissue/knobs or nodules?????. But daughter being daughter didnt write it down or ask questions! She is in middle 20's so I have to take a step backwards and let her do things in her own time [very frustrating]. So next step is physio - maybe there will be more info coming from that.............
    Will update more later.
    Yhanks for your ongoing support - you are all brilliant!
  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Sitemum,

    Thats something they have found that they might be able to help with though.... its a start.

    Bless her she is like me..... I see these people and the wait for the letters to tell me what was said :lol: In my case I shut my ears and play some music cus I often don't ant to hear :lol:

    You should get a letter, but if you don't she can ask the GP for a copy of the letter with the results on them.

    This lot are very supportive and I imagine its as hard to watch as it is to have actually it might be harder. You hang in there and hopefully things will start moving for your daughter.

    Oh I have huge trouble with the shoulders and they can help quite a bit so things really should start to move in a better way for her. Leaving you some ((( ))) and a bucket of hopes. Cris xx
  • tidmusshaz
    tidmusshaz Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi
    Your daughters symptoms sound very simlar to my own. I had severe pain in my joints but no real swelling or redness (apart from slight to my fingers at times) My symptoms first appeared in june in my hands lasted about 4 weeks and went away, then then re appeared in november and affected my ,wrists,elbows,shoulders, knees & ankles and lasted about 7 weeks. they were all stiff and sore but the worste would change from one to the other, the worse affected would be painful when touched but again not swollen. Im left at the moment tho feeling increadably weak and lethargic.The problem being each time my GP referes me the symptoms are gone when Im seen, My rheumatologist has said i may have Palindromic arthritis which moves from joint to joint or possibly Lupus and I have started some treatment.
    Im waiting to return in just over a week to see what they say this time. I hope your daughter gets some relief soon, I know just how painful & frustrating this is I have been off work for 8 weeks now and I have 3 children one of whom is autistic to care for. My hubby has been a help but he works 12 hr shifts and cant be home all the time. x