New here looking for friendly support during diagnosis phase

Avrielle
Avrielle Member Posts: 182
edited 7. Aug 2012, 03:11 in Young people's community
Hello. I'm 24 and I went to see my GP yesterday about my sore knees. One knee is worse than the other and has been worsening at a rapid rate over the past 3-4 months. Now I find it difficult to manage the pain and I'm realising that this isn't just a general ache and pain that everyone gets from time to time. I'm finding it very difficult to get in and out of a chair, or on and off the toilet - which is rather embarrassing - and other simple day to day things that (as I'm sure you will agree) others take for granted in their daily lives.

I already suffer from Complex Regional Pain Syndrome (nerve damage) in my foot as result of an accident causing ligament damage I had two years ago, but is only localised in my foot. But I have been signed off from work since I had that accident as I find, and still find, it difficult to walk and stand on my painful foot. I already walk with crutches and so this does take some pressure off my knees, but walking with crutches regularly really hurts my shoulders now, so I avoid it when I can.

I went to my GP yesterday about my knees as they are clearly getting worse. I have already had blood tests and rheumatoid arthritis has been ruled out, but he told me yesterday that he was pretty sure that I have some form of arthritis. Despite my shoulders being in pain, however, he said that he did not think that it would be fibromyalgia. So I am being reffered to a rheumatologist as I speak, but will be around 3 weeks before I see him.

I cannot lie. I am scared. It's a horrid thought that it could be something incurable, or something that will only steadily get worse over time.

I care for my partner who has Rheumatoid Arthritis, Fibromyalgia and a few other health conditions. He has been a sufferer for over 4 years now but he is in intense pain all day every day and he still is struggling to come to terms with it. Seeing how it affects him really worries me as I fear I could become like that too and have no one to care for either of us. I cannot talk to my partner about my fears and concerns because he is still in the phase of "Nobody understands the pain I'm in all the time" and when I was upset and tried to talk to him yesterday about it, it was clear that he didn't want to hear it.

I have already been in touch with the social services to try and get some extra equiptment and am awaiting a reassesment of my needs, but could take some time as I received a letter to say I'm on a waiting list.

I'm just looking for a sympathetic ear and some support to help me through this shock and rough time.

xx
Life is just a ride. Up and down, round and around, thrills and chills, very brightly coloured and very loud. But don't ever be afraid, because it is just a ride.

Comments

  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    That’s an awful lot to deal with at 24 Avrielle. If it’s any consolation I think both you and your GP are doing all the right things – the rheumatology referral, contacting Social Services and even joining our forum because we do, collectively, know a lot about arthritis and we are good at ‘sympathetic ears’.

    The situation with your partner must be very difficult. It sounds as if his RA is not very well controlled. Perhaps he should see the rheumatologist again too. Or at least get a change of pain meds from the G.P. Unfortunately, you may well be in the situation of understanding his pain all too well and, in a partnership, each supports the other. He may be frightened of this turn of events but it has to be faced by both of you. Of course we will support you on here but you need him on board too. I suggest you take him with you to the rheumatologist and on any future GP visits so that he knows the score.

    On a practical front, a rollator might be better for your shoulders than crutches and a raised loo seat is a must for many of us. (Does your partner not already have one?) In your place, I wouldn’t be waiting for social services on this: I’d be buying one asap. An extra seat cushion can help with chairs. I have a thick, dining chair cushion which I carry into the garden when sitting out there.

    I suggest you post this again on the Living With Arthritis forum as more people come on there.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Avrielle
    Avrielle Member Posts: 182
    edited 30. Nov -1, 00:00
    Thankyou stickywicket.
    I have tried and tried to help my partner as best as I can over the years, but you can lead a horse to water, yet you cannot make him drink.

    He sees a specialist around once a year, which is far too infrequent as far as I'm concerned, but the specialist is not very helpful to him at all and claimed that the damage done would "get better", which I was very annoyed about. I have tried to get him to return to his GP, to try and be reffered to another specialist, to have his medication managed, even just trying to get him to go and speak to the parmacist, but he refuses to have any of it. He has blood tests every 6 months, but the surgury seems to forget and not put his appointments in automatically each time. But he has a big phobia of needles and will not make any attempt to put himself forward for it, so I have to phone the doctors myself and arrange for them to contact him with an appointment without him knowing that it is me who contacted them.

    It's a pretty tricky situation and it has reached a point now where I have pretty much given up and just letting him get on with it. He doesn't seem to want to help himself, and it was understandable in the beginning because it was a real shock for him and difficult to adjust and he had a dark shadow of depression lingering 2 steps behind him. But after 4 years and me doing my best to help him and persuade him to get treatment and help he needs, he still refuses. So it really has reached a point where I just leave him to it and wait until he finally realises that there is help available, and that his meds should be increased, etc etc. Dunno if it will ever happen, but it does seem to be his choice and he can open the door to his cage at anytime.

    Social Services were only ever contacted by me because of my foot injury and I recieved a few things from them to help me like a raised stool, grab rails, a second banister, a sock aid etc. My partners name is not on social services records, but I had some equiptment put in for him aswell as me, like a grab rail next to the toilet and a helping hand grabber thingy and a couple other small things.

    He just doesn't want to help himself, and I have done all I can do. Perhaps if he sees my experience to come with arthritis, he will understand that things can be done and it isn't all doom and gloom and pain and immobilisation. At least, I'd like to think so.

    I don't know what a rollator is, but I will look in to it, and a raised loo seat is going to be a must I think... I am on low income, so I have no money to spend on extra things besides food and household essentials. I am aware that budgeting loans, community care grants and social grants are available, so I may put a claim in, but I'm not sure what I will need, what I can and cannot get from the social and how much things will cost. Will be something I will have to look in to I think. But I fear that because I am deteriorating so rapidly (the past week I have been nearly bed-ridden as I have been unable to bend my knees to walk properly and do things without lots of pain) my needs will change and I will need more equiptment after I have claimed and bought some things that may become obsolite soon after I have got them..

    The extra thick cushion idea is great! Something I hadn't thought of. I was thinking about raising up my chair in the living room with something, but a cushion would be a lot easier. Don't know where to find one or indeed any of such equiptment though.

    I will re-post this in the other forum. Thankyou for your reply. Means a lot to me. xx
    Life is just a ride. Up and down, round and around, thrills and chills, very brightly coloured and very loud. But don't ever be afraid, because it is just a ride.
  • BeckyS123
    BeckyS123 Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi Avrielle,

    I know what it is like to have these sort of health problems at a young age, I am 25 and have osteo arthritis and fibromyalgia.

    I'm sorry that you don't have anyone to turn to, that must be really hard. I can understand where your husband is coming from when he doesnt want to hear about your problems - sometimes it is hard to see past your own pain to hear about other people's pain. But really he should be supporting you, and doing his best to help himself.

    I was 23 when i started with my symptoms and, like you i went to the doctors and even to a rheumatologist. The rheumatologist said he didn't know what it was and i was discharged. But my mum had been through all of this herself and advised i push to see a different rheumatologist, after all you know yourself when something's wrong, right? I did this and got a diagnosis.

    I would suggest you keep pushing, your knee symptoms sound like my osteo arthritis symptoms, especially if they are centralised to one area and referring into the surrounding muscle/ligament. Obviously i am not a doctor, but i would really advise you to keep pushing, sometimes it can be hard to get a diagnosis, especially at first.

    I hope you can get through to your husband, you could really do with his support. After all, what would he do if you werent there for him?

    Good luck with your diagnosis, and if things get too tough, there's always a sympathetic ear here! Even if it's just to gripe.

    Becky.
  • Avrielle
    Avrielle Member Posts: 182
    edited 30. Nov -1, 00:00
    Thankyou for your replies.

    I'm not often in this forum as I'm finding the Living with Arthritis forum very helpful. I saw a rheumatologist on Monday just gone and he was less than helpful to me. I will be going back to see my GP and ask his advice and help to seek another rheumatologist for a second opinion. I really do not trust this doctor I saw on monday. I want a diagnosis and some form of treatment that is appropriate to it soon.

    As for my partner, he is being even worse than the Rheumatologist. I still love my partner, but the fact of the matter is that I don't think I care about him anymore. We have had a friend staying with us for the past week and a half and he has been worth his weight in gold, but it is clear that as a person who is on the outside looking in, he can see the mighty flaws and cracks in this relationship, and I'm under a lot of strain from two directions on if I should stay or leave.

    Not exactly what I need with all of this going on with my health just now...
    Life is just a ride. Up and down, round and around, thrills and chills, very brightly coloured and very loud. But don't ever be afraid, because it is just a ride.
  • alyssanadine2
    alyssanadine2 Member Posts: 16
    edited 30. Nov -1, 00:00
    Hey

    I have JIA which I've had for 10 years now but have been lucky enough to not really have any problems until the past year and now it hurts a lot :(

    You need to be selfish in some ways and make sure you are getting better too as stress wont help.

    When I wasn't getting anywhere with my rheumatologist at one point when I phoned to make another appointment I just asked to see someone else as I wasn't happy and they seemed okay with it.

    I know it's not a nice way to do things but the only reason I've finally got medication is because I moan at the rheumatologist until he agrees to do something and then when I was referred to physio I kept phoning them until they would give me an appt. I know it's not nice but sometimes it's the only way.

    I'm 22 and am very lucky to have my mum to support me and the rest of my family but if you want to talk just send me a message

    Alyssa