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New to RA

Hi all,
I have been recently diagnosed with RA in April, a month after my 50th birthday. I am really really struggling with coping with the pain at the moment. Imfact i am struggling with everything going on as it all seems to have gone wrong with terrible timing. I am getting hardly any sleep and spend most of my time during the day trying to catch up from the previous night. On top of this I have Sleep Apnea and am using a CPAP machine to try and manage my sleeping.

I am currently taking:-

Naproxen (2 x 500mg)
Prednisolone (2 x 5mg)
Omeprazole
Methotrexate (6 x15 mg once a week)
Sulfasalazine (6 x 500 mg)
Folic acid (once a week)
Amitriptyline (to help me sleep, which isn't really helping)
Tramadol (recently added by my doctor to help me manage the severe pain)
Paracetamol
The medication has helped part of my previous pains. My neck appears better, my wrist has improved in the amount of movement I now have. The soreness on the bottom of my feet as almost completely disappeared. For someone who previously didn't take medication, this is so hard to deal with.

The flare up are happening what seems like all the time, and seems to be moving around my body. I don't ever seem to get any time off from the aches and pains.

Due to the amount of medication I am taking, I'm shielding at home. I worked through the Lockdown as was considered a key worker, but consultant insisted I should shield, I told my employer who Furlonged me.

I sat in bed a couple of days ago and thought that getting Corona virus would probably benefit me as I really am struggling to see any light at the end of the tunnel. I haven't been able to see a doctor face to face, I haven't even had a first appointment with my RA consultant, but to be fair my Physio (who I haven't seen face to face but have had a video conference call a few times. She does seem brilliant but limited on what she can do.

I am single living on my own, have four daughters who have been supportive but I try not to discuss my issues with them to save them worrying.

I am at the point of not really knowing what to do moving forward to try and get this manageable cause at the moment it's very much not at all.

I am not sure what I am asking, or what advise anyone can give. Maybe just venting this off might help me to feel better? Who knows.

Is there any advise anyone could give me please?

Regards Phill

Comments

  • EllenEllen Posts: 158 mod

    Hi @Babber

    You are clearly having a really tough time. Sometimes venting does help as does hearing replies from people who understand. Yo will certainly get that here.

    Being diagnosed and treated at a distance during this pandemic has clearly done you no favours at all, but things are opening up now and I really think yo should be pushing to see a rheumatologist 'in real life' as soon as possible. I am at least pleased you have such a caring Physiotherapist.

    What I can say from personal experience is that my first flare took a ludicrous amount of time to settle and like you I couldn't sleep and spent a lot of time resting in the daytime as a result. Also the medications you are on Methotrexate (MTX) and Sulfasalazine do take months to actually make a difference.

    For me personally, once the medications kicked in and the first flare settled down things have been under much better control. Like you I had previously only take a paracetamol for headaches and not much else. It is a shock to be on so much.

    If you would like to speak to a voice please do ring our helpline


    Please do keep talking it helps.

    Best wishes

    Ellen

  • stickywicketstickywicket Posts: 25,870

    There is no good time to get RA but some are worse than others and the middle of a global pandemic has to qualify, surely, as the worst.


    I'm sorry things are so tough for you but they will get better. You were only diagnosed in April and DMARDS such as methotrexate and sulfasalazine can take three months to kick in. I fully endorse Mod Ellen's suggestion of trying to get a face to face appointment with your consultant. Right now might be the best time as lockdown is being eased up in England. (Don't be fooled by that, though. Those of us on immunosuppressants are still very much at risk so take all precautions. Meanwhile, just to be clear, you're shielding because of the immunosuppressants not because of 'the amount' of meds you're on.) Failing that, ask for a Skype / WhatsApp / Zoom (take your pick) appointment.


    In the interim, aim to deal with what you can. Arthritis is painful, end of. You are on a lot of meds. Personally, I think it's pointless and unhelpful to aim for no pain. Find your level which you can deal with then aim to reduce the pain relief WITH YOUR G.P's HELP.. But leave the meth, sulf and steroids (pred) as they are until your rheumatologist gives you the go-ahead.


    There's no doubt pain makes a mess of sleep patterns and yours will be complicated by the sleep apnoea. But playing catch-up during the day will help to ensure the following night is just as bad. Try not to by whatever means you can. Distraction is how most of us deal best with arthritis. And ensure you have some painkillers left to take, say half an hour, before you go to bed. Establish a good night time routine so that your body knows what's expected of it. Ditch the smartphone / tablet etc an hour or two before going to bed as blue light is bad for sleep patterns. Have a warm drink (not coffee). Have a bath if you can and it relaxes you.


    As for your daughters – it's tough with our families. We don't want to worry them but, equally, they only worry more if they think we're keeping stuff from them. Learning how much to tell them and when is an ongoing thing but one of the worst mistakes we can make is to shut them out. Tell the truth but in doses you feel they can absorb.


    I know I must sound very bossy and super-confident in how I deal with things. Well, I don't mean the former and, as for the latter, messing up is a regular thing. It's a case of do as I say not as I do. But I've had RA for over 50 years so I do have some experience in dealing with the beast. Things will improve. Hang on to that.

    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • frogmortonfrogmorton Posts: 25,124 ✭✭
    edited 23. Jun 2020, 15:56

    Hi Phill

    Welcome to the forum from me too. I am sorry you're having such a dreadful time at such a dreadful time too. I have to agree with both replies you've already had; you need to see someone now the restrictions are easing.

    I have been in similar positions to you (without the need for a CPAP) struggling at night to sleep and exhausted all day. Some of the fatigue is to do with the RA though to be fair when it's flaring. The good news is that in general with the help of a good rheumatologist a medication combination can be found for you which should make things a lot better. The hard bit is that it takes time and trial and error.

    My anti-inflammatory is a slow release one which helps keep pain at bay over night somewhat. I don't know whether any of your current meds are available in that format?

    When this first happened to me I thought my life was over, stopped planning things and was so scared. Luckily things are way better now pretty well under control and I have a very full life.

    The best thing I ever did was to come in here and talk to people who understand. They don't judge and understand without being upset as family sometimes can be.

    Take care Phill and do keep in touch let us know how you are doing.

    Toni x

    Love

    Toni xxx
  • Hi Phill,

    I won’t welcome you to the forum as I’m sure, like me, that you’d rather not have the dammed R/A.

    A couple of tips that I’ve found helpful, I can’t manage any type of low seating, so as we luckily have a large kitchen diner I use a high backed stool with a seat cushion, we have a TV there so I more or less live in it. Also I’ve more or less mastered sleeping on my back as any other position brings on terrible calf cramps, I’m not single but decided that my wife shouldn’t suffer along with me, so it’s a double with a firm mattress in a spare room.

  • dreamdaisydreamdaisy Posts: 31,556 ✭✭✭
    edited 24. Jun 2020, 07:39

    Hello, it's been a little while since we heard from you, how are you getting on? Like you I take meth but via injection and I have had pred too. It can take time to bring disease activity under control and that time for us can be distressing, frustrating and seem never-ending. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
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