New to RA.. feel very depressed and alone

i'm newly diagnosed with RA, am 44yo, single with a 14yo daughter. Oh an my dog, who is probably saving my life atm..

i haven't yet started treatment, i see rheumatologist in 3 weeks. the pain is progressing and spreading now, initially one knee (where i also have osteoarthritis), but now both knees, both wrists, and shoulders, and also swelling in my chest which apparently is linked.

a year ago i was an avid gym goer, hiker with loads of energy. now each day just feels like a battle. the nights and the morning the pain is the worse. I also work full time and my job is v stressful, though am having to take days off as i keep getting flares, particularly when its my time of the month.

i guess i just want some reassurance that i won't feel this way for ever. i'm quite an introverted person anyway and not hugely social - though my job is very social, but now i just feel i want to withdraw even more. i'm so scared of facing this alone. i don't have family nearby, and only a couple of close friends - and my daughter is growing up and being independent, though she's helping me quite a bit and putting up with my tears and exhaustion. Which similarly brings its own guilt.

i just had to write all this down i think. am literally typing one handed as my other wrist is so sore..hence the lack of using capitals..

are their others who are managing this alone? or how did/do you adapt? i have to force myself up and out to work each day as solely provide for my daughter, which in itself is tough. but when i am not working i just want to curl up in my bed with my dog and sleep.

i am sorry if this sounds very self absorbed. i know many have this and worse, i just needed to find an outlet somehow..

if you take the time to read, thank you.

Comments

  • airwave
    airwave Member Posts: 579

    You’re feeling a touch vulnerable at the moment but life will change for the better and you will come to accept your circumstances. Life does not end because you have arther on your back, you are so much more than an illness. If you allow yourself to give in to despondent thought than you will lose the struggle, arther is just a minor setback in your, at the moment, young life. Yes you will see the rheummy and he may treat you but you will still be the same person, diagnosis or not.

    I have lived with arther for many years but I still have the same thought patterns, still love, live and enjoy life. Put some logic back in your thoughts. Arther has given me so much, I’ve not had to work for a long time, I’ve looked after my grandchildren, followed my own interests and hobbies and held my family together.

    These thoughts might seem harsh to you but they do work.

    its a grin, honest!

  • MissA
    MissA Member Posts: 54

    I’m so sorry you are suffering at the moment. Having a diagnosis of RA can be an emotional as well as physically painful experience & I recognise how you are feeling. However, the positive thing is you have a diagnosis now so can begin being treated for it. There is so much that can be done these days to halt the progress of RA. I was diagnosed in my early 20s (I’m now 55) & when I finally first had my diagnosis it was actually a relief to me. My medication has been tweaked over the years & for a long time my treatment made me feel like I had nothing wrong with me & looking back I am thankful for that.

    There is more than just hope that you will feel better & get your life back. Once you receive the right treatment it is very realistic to assume the pain you feel right now will lessen, once the inflammation is under control. Although there is no wonder cure & you may have to accept you can’t do all the things you once did with the same amount of gusto you did before, you can still live a full & happy life but may have to learn to listen to your body.

    In the meantime if you drive & work full time, I would urge you to look into applying for a Blue Badge. I never thought of applying for ages & struggled on in pain a lot longer than I should as I have never considered myself ‘disabled’ as such but believe me it was a Godsend when I was driving to work & ferrying my young son here & there. It is one of the many things that are available to help you live your life how you should. Nobody should suffer in pain, don’t be proud look into all the help that’s available to you.

    I hope you find my message a positive one & I hope you find the pain relief you deserve sooner rather than later.

  • Woofy
    Woofy Member Posts: 254

    So sorry you are feel utterly miserable.

    as others have said, when you have seen someone, and had all the various tests, you will soon start on medication.

    i remember crying most mornings because the pain was so intense.

    my dog has also been my saving grace. She is bonded to me, and won’t go out with my husband, so I have to get up to see to her.

    you will get sorted, just hang in there. Good luck.

  • stickywicket
    stickywicket Member Posts: 27,687

    We adapt slowly so go easy on yourself. I know it sounds crazy to say try to avoid stress but I'll say it. Arthritis thrives on stress. Try to create periods of calm in each day in whatever way does it for you.

    Things will improve but, with an inflammatory form of arthritis, we have to get used to waiting - for appointments, for blood tests, for scans, for meds to work. We can't hurry the process so we have to adapt. But adapting is good. An inflexible body needs a flexible attitude of mind.

    Gentle, range of movement exercises are good when we're flaring. Trying to carry on as before is not.

    You will get there but you are the tortoise, here, not the hare.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JenHB
    JenHB Member Posts: 130

    Big hugs. I'm 38 and used to be very active (in fact I ran my first marathon in April 2021). Later that year had a very swollen knee and it was very difficult to walk. I then got a diagnosis of RA and started on methotrexate. I have now been able to get back to being more active including doing run-walk and actually did my local half marathon at the end of September. This post is to hopefully give you a positive experience.

  • Kate1701
    Kate1701 Member Posts: 14

    Thank you for the messages.. I know it’s just going to take time and things will hopefully improve..

    Unfortunately stress is a big part of my life, but it definitely makes my symptoms and pain worse. There just isn’t a quick fix on that one!

    And JenHB that’s amazing to hear you’ve just complete a half-marathon. I had to give up running due to hip surgery 10 years ago, (my body is wrecked) but to know that you are finding your way back is reassuring..

    And to Woofy my dog is the same.. sticks by my side constantly. Be totally lost without her.

    thank you for all taking the time to respond. It’s very much appreciated.

  • Bal
    Bal Member Posts: 8

    Please don't feel alone.

    Speak to your GP.

    Reading you post I feel like I've written myself. I was same but got support of my GP. Talking to someone helps too. Don't feel alone. I'm in alot pain and due to inflammation some days I struggle to see to help my youngest before his school. Due to severe asthma i have to be careful what medication I have . but I have support from my GP

    Reading all the post helps to know we not alone

  • Jue
    Jue Member Posts: 6

    You are not on your own , we all understand what you are going through unless you have arthritis you don't really understand the impact it has on your life the swelling joints , pain & stiffness , you need the right pain relief , support , exercises & it's worth asking to speak to a OT who will help & supply any aids you need to make your life easier & you will find a new way of doing things , i'm glad you have your dog , when I had my knee replacement I hit rock bottom in hospital on day 2 with physio & sat crying , on day 3 I worked through the pain of the physio to get home to my cat she was & is my reason no matter how rough I feel she needs me & I need her the best therapy for animal lovers.

  • Hi Kate, for one moment there I thought I was reading my own post! In a similar position, waiting to see rheumatology but started in left knee, now in right knee, both hips, both elbows, right shoulder and have been having chest pains too which I now understand may be linked. Mine is post COVID infection and I'm 50 . My orthopaedic surgeon referred me to rheumatology after cortisone injection resolved all pain for 3 weeks (pity it didn't last longer - it was wonderful). I'll keep an eye on your posts but it would be great if we could connect and help each other along this journey. 💜

  • Kate1701
    Kate1701 Member Posts: 14

    Hi, sorry I’ve not been back on here in a while so only just seen your reply to my post..

    I actually had my rheumatology appointment today and the consultant has confirmed my positive RA diagnosis. He’s starting me on prednisone and methotextrate. Feeling very apprehensive as high does steroids to start with and worried about side effects…

    Have you seen your Rheumatologist yet? The wait felt like forever..

    Let me know how you’re getting on x

  • Hi Kate

    I hope having a diagnosis is helpful for you rather than being stuck in limbo. Take some time off if you can whilst you adjust to the meds. You need to be kind to yourself. I’ve got my initial consultation this month so hoping for some progress . In the meantime I’m now on beta blockers which might be related but might not be too so I’m having some time off whilst I adjust to these. Have also found out my grandma had RA so seeming more likely to be that now. I need to stay calm to help myself through this. Sending big hugs and hoping the medication starts helping you soon. Stay strong - knowledge is power 💓

  • Kate1701
    Kate1701 Member Posts: 14

    Hi Bobbi, yes it does feel helpful, and a bit overwhelming too.. but I’ve felt so unwell the past 6 months that it’s reassuring it’s not just all in my head.. we have RA in the family too.

    I have this week off, but I work for a small business and we only get stat sick pay so I have had to keep working through. My job is incredibly stressful… in time I need to change it for sure.

    well it’s good you have your appointment now too, even if a few weeks away. And yes definitely be kind to yourself, rest as much as you can, which I know isn’t always easy. Big hugs back to you too x

  • Escoufle
    Escoufle Member Posts: 7

    Hello Kate, so sorry you feel so down. When my RA first developed it was triggered by PMR, and it crippled me. Luckily we had some steroids available, so my medic husband gave me some to calm the effects while we were away on holiday. On return home, i was told it could be 12 weeks to get an appointment with RA consultant on nHs so I went to see someone privately in another city. She started me on steroids and methotrexate and monitored me until i could see a local nh RA consultant. I now have shared care managed jointly by RA team and my GP, blood tests initially every month but now every three months. I did have to be careful with eating as steroids do increase appetite but i did lose the extra weight once I finished with steroids, and they were a magic bullet in helping to control symptoms until MTX kicked in. I started on 20mg/week, then reduced to 15 after a year with no flare ups, and again down to 10mg/week a year later. Now in 4th year and mainly problem free . I have occasionally resorted to seeing the private consultant if I needed to discuss a change of dosage and also earlier this year when I had a PMR flare up and again, it was 8-10 weeks to get an appointment with NHS RA team. So my advice is, get yourself a private consultation as a one-off and get started on treatment so the RA doesn’t cause any more distress. Then the private consultant can write to your GP and to the NHS RA team, and they will take it from there, but in the meantime you are getting started on treatment. I take daily folic acid to help with energy levels, except on the day when I take methotrexate, which I take in the evening, together with cyclizine to help with nausea (I don’t get any)l started with metoclopramide for nausea but that made me depressed. Only thing I would say regarding activity is not to overdo things, find out your limits. I do pilates 3 times a week, swim for cardio and a long walk once a week, but if I exceed my comfort zone in walking i do get pains in feet. I hope you can get yourself sorted and medications on track, but don’t suffer in silence as delay in getting proper attention can exacerbate symptoms and effects of RA. I have seen this at close hand in the wife of a friend. GOOD LUCK.

  • Kate1701
    Kate1701 Member Posts: 14

    Thank you Escoufle..

    I have now see my consultant, last week and started on methotrexate.. second dose was yesterday. Hadn’t actually been feeling so bad last few weeks until today, and wham has hit my like a sledgehammer. Not sure if it’s the MTX side effects, which are making me very nauseous.. but my joint pain has been pretty bad today, well I’ve just actually felt pain everywhere so I’m not sure if it’s a flare or the MTX dose

    it’s reassuring to hear how far you’ve come though and I really hope the same for me. I just feel stuck in a limbo of feeling either pain, nausea or intense fatigue constantly. So other than work, which atm is a struggle, all I do is sleep.

    but I am hopeful for some improvement. Today has just knocked me back but I know treatment takes a while to take effect and just got to wait it out.

    thank you again.

  • Lane
    Lane Member Posts: 113

    Hello @Kate1701 welcome to our community and I see that you have made many connections.

    I understand that you have RA and osteoarthritis and have attached some information to have a look at:

    Keep posting and all the best.

  • Baloo
    Baloo Member Posts: 381

    @Kate1701 sounds like you have stacks of energy. Throttle back to stay within your fatigue limits. You won't feel better but you will feel more fresh and able to cope. I believe thats how trainers treat their athletes. Flare ups you don't want them for long. I hope the medication holds the horses back for you.