Hello I am new to all this

splashley
splashley Member Posts: 10
edited 1. May 2015, 17:31 in Say Hello Archive
Hello everyone. I have been reading a lot of the information and advice from these forums. It is so lovely that everyone is friendly and so helpful.

I have seronegative inflammatory Rheumatoid arthritis in both my knees and hands and multilevel degenerative disc disease with two herniations and a cyst on my lower spine. I am on morphine, paracetamol, methotrexate, hydrocloriquine and napraxen to help try to control the pain. I have been off work for 6 months as my body will not do what I want it to do. I am 40 and used to run 5K twice a week and cycle and walk everywhere. Now some days I struggle to stand and put one foot in front of the other and I struggle to keep up with my 6 and 8 year old
I am due to return to work in June I love my job but it is at a preschool with lots of bending, lifting, standing, moving and pressure to do things quickly and correctly. Sometimes I think I can't go back as sometimes I can't even lift my leg past my knee.

I am worried about my knee on my left leg my leg keeps giving way, it feels heavy and I struggle to lift it. Stairs are awful I have to pull myself up and lean on the rail to get down. My knees on the inside seem like they are screaming in pain all the time. Do you think a stick would be beneficial for me to use when walking? Does anybody have similar things?. I am not used to any of this.

I have seen rheumatoid consultant twice and specialist nurse once. I am on waiting list to see her again. I am undergoing physio for my back, doing pilates and hydrotherapy. I was told occupational health should come to my house end of May and physio for my knees and hands should start in July.

I have trouble saying how I really feel and often hide how I truly am to everyone. I feel in denial, and trapped. This is why I thought I try a forum as sharing this way is easier. If I don't I will sink deeper into myself and lose it all together.

Thanks everyone for being there to listen I hope you don't mind me sharing all this.

Splashley

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Welcome splashley from the Mod team.

    This is a great place to come to if you have any kind of arthritis, the forum members know where you are coming from, they understand fully which can be hard for friends and family sometimes :D

    Any problems getting around - let us know

    Take care
    Mod Yx
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello Splashley and a warm welcome to you, though I`m sorry you`ve had to find us.

    I`m not surprised you have been off work and feeling anxious about going back. I was a secondary school teacher, but medically retired a long time ago, so don`t have work to think about. You have a demanding job - are you going back full-time? Is it possible to have a phased return?

    It`s good that OH are coming to see you at home - you need to tell them exactly how things are, as they may be able to offer some practical advice. A walking stick might help, even with confidence, but you need to make sure it`s the right height for you - mine were sorted out by the physio dept.

    I think a lot of us on here spent the early weeks/months after diagnosis in a state of denial - it took me an awful long time to come to terms with having RA, as I`d always done a lot of sport, and was still very active. There is always light at the end of the tunnel, once medications start to work - it could be if yours are not improving things they may need to be reviewed : there are a lot of drugs out there.


    If you find it difficult to talk about things is it worth asking your GP about some counselling? I was a bit sceptical about the value of this, but I got great benefit from the counsellor I saw, as I could off-load things onto her that I perhaps didn`t want my family to worry about. Basically, I could get everything off my chest. I was lucky in that I have a very supportive GP too.

    Please keep posting, so we can give you our support, and do take care.

    Tezz x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am so sorry you have had to find us. I too have a sero-negative form of auto-immune arthritis, in my case psoriatic, and have been using crutches since 2002: I began with them after an open synovectomy on my left knee (this was done to remove five years' worth of solidified fluid) and, alas, have never been able to manage without. The benefit of elbow crutches lies in the support they offer which is to enable better balance and stability. I walk like a quadruped, left leg and right crutch forwards, then vice versa. I was taught by the phsyios in hospital and I remember the lessons well! For longer distances I now use a rollator which has a seat so I can rest when required. Both ankles, both knees and both hips are affected, as are my hands, wrists, elbows and shoulders. Physio has a role to play but it is important to keep doing the exercises - the stronger the muscles surrounding a joint the better they can support that joint.

    I have been affected by arthritis for eighteen years and the sad thing about these conditions is that they are both degenerative and progressive. I began with one affected joint, now it's many more and OA has arrived too. I take a triple therapy for the PsA and pain relief for both but have never found any of the arthritis meds any good at reducing pain levels, probably because I began them far too late and at too low a level. The pain dullers are of some use but I prefer to keep them to a minimum because I find the feedback useful.

    Your troubles are different to mine - I flogged on with my work for maybe two years too many but I had the luxury of being self-employed and could tailor things to suit. OH may be able to sort out something for you but I cannot see how you could be able to return to work, given what you do, due to the morphine, that is a heavy-duty pain duller and can make people quite woozy. Can you see yourself being able to reduce that? There's no doubt that you need the meds (and this day and age you probably need to work too) but can the two can be reconciled? Arthritis is a demanding and very selfish disease - it takes nearly everything and offers very little in return. There are two articles on the net which may be of interest to you, they are The Spoon Theory and There's a Gorilla in my House.

    Please post again on the Living with Arthritis board on here, many more look in on that one and you may gain more replies. I wish you well. DD
  • stickywicket
    stickywicket Member Posts: 27,209
    edited 30. Nov -1, 00:00
    Hello there, splashley, and of course we don't mind you sharing all the pain, anxiety and frustration. It's what we're here for.

    You seem to have a lot on your plate with both the RA and the degenerative disc disease and, if you're used to a very active lifestyle, this will hit you hard. You write 'my body will not do what I want it to do'. Oh we all understand that :roll: I think the trick is to find a balance between what we want to do and what our bodies are capable of. And to keep monitoring this as things change and we must keep adapting.

    A stick – or two sticks – might well help but the Occupational Therapist and physio would be the best people to advise on this. As for stairs – I assume you do them one at a time. The golden rule is good leg (if you have one) first going up and bad leg first going down. Before my knee replacements I used to find it easier to come down backwards. (I think it uses different muscles.)

    Pain is a difficult thing but we have to learn to live with it. It won't be banished by meds. Most people don't want to be a constant wet blanket by complaining of it so the forum is a useful place for releasing all the stress and tension. Our families do need to be kept in the loop though as otherwise they can feel excluded and useless. It's a fine line we tread.

    Dealing with arthritis and young children is a tough mix. I did it with my own (muddling through on a learn-as-you-go basis) and now have two young grandsons. Their energy is scary at times but they do understand that Grandma has to be handled with care. I've just stayed with the 5 yr old for a month and he was very kind and encouraging about my pathetic efforts at Wii 10 Pin Bowling :lol: Dealing with small children daily as part of your job, however, would be much harder.

    Have you seen FionaBee's thread 'Functional Restoration Programme' on the Living With Arthritis forum? You might find the link interesting.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hello again Splashley - I posted on the Helpline board but I'm pleased to see you've already made contact with the 'old hands'.
  • splashley
    splashley Member Posts: 10
    edited 30. Nov -1, 00:00
    Wow! Thanks it is amazing to have such wonderful feedback, support and advice. It made me quite emotional and showed me that I am not alone and can share things. Thank you all for your advice I will read the links suggested and talk about returning to work with my GP on the 15th of May. I agree that if I am on these drugs I can not really be fit enough to do my job safely, professionally and without being a risk to others as I keep doing things I can't remember which could be risky when looking after children. It will be very hard for me to say but I feel I am not ready yet and if I go back too early I will be worse of and may have to take even longer off.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are more than welcome and I hope we have helped you to feel less lonely. When I joined the forum I was the only person I knew within my peer group who had an inflammatory arthritis; that is still the case but I now have a wider group of creaky friends who understand how tough these things are and can be.

    I am not a doc but I fear it is the morphine which is blunting your memories. The problem with our pain is that it returns no matter how we try to flatten it - do you know that fairground game where you try to mallet creatures that pop up here and there? You swipe one but two more appear and, in our cases, we never win the goldfish. :wink:

    This must be difficult for you - I count myself (oddly) fortunate in that I have never truly known good health so this is more of the same-old-same-old but for those who hit this barrier from a healthy background it must be very, very nasty. We've been there, we live with it and, hopefully, we can steer you through these troubled waters. DD

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