I don't know what to do, need advice please

rirnamorado
rirnamorado Member Posts: 5
edited 28. Aug 2018, 04:59 in Say Hello Archive
Hello,
My name is Rita.
I'm new here and yesterday tnhe doctor said: "you have arthritis".
I felt completly lost and in shock. The doctor advised me Physio, I rang for an appointment but there is a waiting list of 4 weeks...
The doctor wasn't very helpful, in fact she was very rude.

On the 9th August 2018 I've sat on my bed to get myself dress to go out with my boys and as soon as I try to lift my leg up, to get dress, the pains were horrible and it felt like something was locked in my knee. I couldn't move myself to anywhere. 3 days with Naproxen and co-codamo (after 2 days stopped co-codamol, felt too sick and nauseas all the time. Changed to paracetamol) l and it was the worst days of my life (crawling to the toilet and crawling back to bed). After 3 days, an injection but still taking naproxen and paracetamol. 1 week after injection still have pains, can't step up on the stairs, can't bend my knee as normal, and I still have a sore lump on my knee.

I haven't been able to go to work since... I miss my job so much, I'm a carer.
I'm not sure what to do while I'm awaiting for the physio appointment. I feel a bit useless, I'm having difficulties with my personal care, shopping, driving...

I want to be able to do my life as much independent as possible, I know nothing will be the same but I will do my best. Just need a guide.

Thank you for reading my thoughts. There is more inside but I will leave it for another day...

Rita x

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello Rita and welcome to the forums from the moderation team.

    I am so sorry to read how much you are struggling with your diagnosis of arthritis is it in one knee? Did your Dr say which type at all was the diagnosis based on an Xray? I see you have tried an injection and co-codamol as well as Naproxen and paracetamol. Stronger pain relief like co-codamol can make some people feel a bit nauseous, but often people get used to them over time.

    I see you have a bit of a wait to start physiotherapy and are looking for advice until then. A lot of people try heat – wheatbags which you pop in the microwave or icepacks (wrapped in teatowel). I will leave the members to give you their tips, but in the meantime I attach a couple of links which might help:

    The first is about managing pain including information about pain relief:
    https://www.arthritiscare.org.uk/living-with-arthritis/managing-pain

    This one is about Treatments etc. and talks about staying independent. I have added this link because you say you want to remain as independent as possible:

    https://www.arthritiscare.org.uk/treatments-aids-and-equipment

    We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can.

    I am very glad you have found us and look forward to seeing you posting in future.

    Best wishes

    Ellen.
  • rirnamorado
    rirnamorado Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you very much for your help and kind words.

    She's not my doctor and she was very rude and cruel yesterday. I was so upset. My doctor is on holidays but I manage to book an appointment when he comes back.

    I had a much less painful situation last year with my right knee, had 2 injections and eventually the pain stopped. But now I'm using more my right knee, the pain and discomfort it's coming back.

    No blood tests, I had a x-ray in the hospital 2 months ago when I had the 1st episode on my left knee but I thought it was to check if it was broken or deslocated. This last episode 3 weeks ago was worse than the 1st because I couldn't move or walk.

    Thank you once again,

    Rita x
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hi Rita
    Just wanted to say welcome and sorry to hear about your problems. I'm not surprised you are feeling shocked and at a loss. That's good you have an appointment with your own doctor, even if you will have a bit of a wait; with any luck you will be able to get more answers and help.The wait for physio may seem long but there will be many on here who will be thinking 'that soon'(me included!) as the wait is months rather than weeks in far too many places.
    Keep posting - being able to share your concerns and pain is better than keeping it all bottled up and, speaking from experience, there is something very comforting about receiving messages of sympathy and support from the forum members who know only too well how difficult life with arthritis(of whatever kind) can be at times.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it sounds as though you have osteoarthritis, the most common form of the condition. Mine was diagnosed back in 2011 and affects both ankles, both knees and both hips. I also have an auto-immune kind which led to the osteo, life has its challenges. :lol:

    I am lucky in that I am in my twenty-second year of it all so have much experience under my belt but unlucky in that I cannot remember the early days when not much was affected. It was the auto-immune that came first, that started back in 1997 when I was 37 and was always on the cards as I was born with autoimmune trouble; it came as a surprise though. When the OA was diagnosed I plunged into depression because I thought that you could only have one kind of arthritis, that I'd been there and done that. Twerp.

    I find the OA is worse in the cold and damp, that acidic foods aggravate it and I can make it worse by overdoing things. I can exercise some control over the last two but not the first. I don't need to take an anti-inflammatory but when inflammation occurs at least it is localised and I can deal with it usually by applying Voltarol and resting. For pain relief I take 30/500 cocodamol but that doesn't get rid of the pain, just dulls it to a level where I can get on.

    Pain is part and parcel of the condition, as you are so new to it it will be a massive shock but, to a certain extent, we have to learn to grit our teeth and get on with it. It seems completely unreasonable that in this day and age that is the case but arthritis is a common, complex and mis-understood condition. Of the ten million or so arthritics in the UK the majority have OA, it's ubiquity works against it and GPs can seem dismissive because it is so common. I am very lucky in that I am retired, childless and used to arthritis, it's a very different situation for you and I am so sorry. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Hello Rita and welcome from me, too. No wonder you feel lost and in shock. Arthritis can come on very suddenly and disrupt our lives to a frightening extent, especially when we have children to care for.

    People on here often feel that doctors don't seem to care. I think it's maybe not so much that they don't care but they feel frustrated because they can do very little. Yours has actually done quite a lot – got you a steroid injection, recommended physio and given you pain relief. Unfortunately, there's not much more a doctor can do. The rest is up to us. Nothing will take arthritis away but we can help ourselves by sticking to a healthy diet and weight, exercise and not smoking. If you scroll down this page https://www.arthritiscare.org.uk/living-with-arthritis you'll find lots of helpful information.

    As daffy says, four weeks is not long to wait for physio these days but you might be able to get it quicker if you tell them you could take a cancellation slot. This would mean you need to be able to go any time but lots of people have been able to make use of this to get earlier appointments. Meanwhile, you'll find some exercises on the page I gave you. Gently, slowly and often is the best way to go.

    There are lots of things that can help us with daily living. Many of us rely on our raised toilet seats, sock aids, pick-up sticks etc. You can find all of these online at any disability store and probably even on Amazon. You can also buy a neoprene knee support but these things should not be used too much as they encourage muscle weakness and that just makes everything worse. But they can be very useful short term if, for example, you need to pop out to the shops.

    For stairs, go up and down one at a time, like a toddler – good leg first going up and bad leg first going down.

    If you are taking naproxen regularly you should ask your GP for a stomach-protecting tablet also as all the NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) can damage the stomach. Always take naproxen with a little food. It doesn't have to be a meal. A plain biscuit will do.

    The injection you had – well, they work for some people sometimes, at best for a few weeks, and for others not at all. We can only have them every so often as, otherwise, they could do damage.

    You write “I want to be able to do my life as much independent as possible, I know nothing will be the same but I will do my best. Just need a guide.” I love your attitude, Rita, and I'm sure you'll learn to deal with this nasty disease just as we have all had to. We'll always be here to help as best we can.
  • rirnamorado
    rirnamorado Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you very much for sharing your experiences with me.
    Thank you for your ideas and support.

    I'm a single mum, I have 2 young boys and it's hard. I want to believe it's going to be better.
    I'm a carer and I do miss my job.
    At the moment I feel a bit trapped and concerned, but I guess I have to start and try to do my life, can't give up now. Back to work, back to school run, back to driving and hope for the best.
    I'm sure my appointment with the physio will point me in the right direction. It's all I need - a direction, a plan, what can I do to help myself.
    I don't have much family in this country but I have some very good friends. I'm a bit stubborn and I like doing things on my own, don't like to disturb my friends.

    Do we have to take medication for the rest of our lives? I've always been against of taking pills, specially for long time periods.
    Thank you, I will ask talk to my doctor and ask him about that (stomach protection). I always take my pills after a meal.

    Rita x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You don't have to take the medication but life without it is harder than life with. I have been on daily medication for most of my life so for me it's no big deal. The medication for OA is, to me, very small fry as it is only tablet pain relief but I realise I am coming at this from a skewed perspective having lived with it for so long.

    Any form of arthritis is degenerative and progressive, it will not get better, it won't go away but we can learn to adjust and adapt. Of the two I have I far prefer the OA because it's more honest in what it does and how it does it. Arthritis has affected and changed my life, I began with one joint, now it's around forty but it hasn't taken over my life and never will, I won't allow it. I think when it's only one or two joints which are affected the pain stands out more. DD
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    You may well find that you need to take medication for the rest of your life though, sometimes, osteoarthritis just affects one joint and, if so, eventually, that joint can be replaced and that's the end of it. Unfortunately, for most of us it's not like that.

    It's good to be independent and that will take you a long way down this road but don't be so stubborn that you won't ask for help even when it's essential. No-one likes a 'moaner' but, equally, friends can feel a bit excluded if we don't keep them in the loop and accept their kind offers. Getting the balance right is tricky but very necessary.

    My arthritis came along before my sons did and, frankly, I think it's actually been quite good for them having a Mum with it. I've never ever asked them to 'be my carers' but I have ensured they were independent before they left home. They could cook, launder their own clothes, iron etc. They're now both very good Dads and very thoughtful towards people with disabilities.
  • rirnamorado
    rirnamorado Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you very much for your thoughts.

    Lots of love,
    Rita x

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