Newly diagnosed Though have know it is RA for a few months.

Amethist
Amethist Member Posts: 5
edited 20. May 2019, 07:14 in Say hello
Hi
I was newly diagnosed yesterday Though have know for a few months now that i have RA

It is only in my hands and 1 ankle but have been struggling with my right hand a lot worse over last 2 weeks.

This on top of caring for my husband who has PTSD {{Not new to this though}} So i am well versed with on line support from forums as i used to moderate on a world wide PTSD 1.

Its almost 4 am and i have been awake for just over an hour now. Lack of sleep is a norm with PTSD but this is not the same Being woken with pain is a struggle i am having to learn So back to learning how to sleep when health issues are an issue.

I will tell more as time goes on.
Don't walk on egg shells Don't take crap.

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Amethist,

    Lovely to meet you, I’m sure you will enjoy your time on the forum. A new diagnosis of rheumatoid arthritis is daunting - here is a link to a booklet on it that should prove helpful and useful

    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    That’s a shame that pain is affecting your sleep. I have found a podcast that is really soporific so when I go to bed I put on an iPad episode and am usually asleep by the time it ends. If I wake up in the night I use an earpiece type headphone just in the ear not on the pillow, and put on the next episode- usually it works! I’m sure there will be other suggestions appearing soon.

    Do keep us informed of your experiences, it’s good to have somewhere to share your thoughts - which can be hard to do with those closest to us at times

    Take care

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I don't have RA, mine is psoriatic and osteoarthritis. I am just starting my 23rd year of the PsA and the ninth of OA: I am very familiar with pain, after so long you get used to it. I began with one affected joint, now it's around forty so there's no escaping it. :lol:

    Why were you sure you had RA? Is there a history of auto-mmune conditions in your family? There was in mine, my parents escaped but ensured I got a double dose. It can also start from nowhere too which must be a shock if this is the case for you. What meds have been suggested? I've tried many and am currently on injected methotrexate and imraldi, a bio-similar. For the OA I take minimum pain relief, exercise and avoid acidic foods. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Amethist
    Amethist Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for the welcome.

    It may seem daunting but as i have suspected it for almost a year getting the diagnosis was just a confirmation as well as being able to be given correct medication

    I am going to be using essential oils along side any meds prescribed. A sleep pone designed for my husband looks like its going to useful for me too.

    That along with pink salt baths Hand creams i can blend I may just manage OK>
    Don't walk on egg shells Don't take crap.
  • stickywicket
    stickywicket Member Posts: 26,242
    edited 30. Nov -1, 00:00
    Hi there. I have RA too and have had for most of my life. Mine also started in my hands then ankles then everywhere but these days people are got onto the proper disease modifying meds quickly so, with luck, you'll fare far better.

    You don't say how much your husband's PTSD impacts on both your lives but I'd guess it'll be hard for you if you're used to being the strong, healthy one. Arthritis makes no allowances for personal circumstances so I hope you'll be able to go easy on yourself when necessary.

    Sleepless nights due to pain are no fun. Pain always seems worse in the early hours and besides we need our sleep in order to cope with the day ahead. Your GP can prescribe pain relief. We tend to call them paindullers on here rather than painkillers and we all try to juggle the dose so that we can have some going to bed. But, for the meds that really tackle the disease we need the rheumatologist.

    The latter really do hold it back so, by all means use essential oils, a sleep pone (???), pink salt baths and hand creams if they'll lighten your mood but do keep on taking the DMARDS too. Methotrexate is usually the starting one. That plus hydroxychloroquine have really helped me. Oh and do be conscientious about the blood tests as they will flag up any potential problems before you're aware of them.

    Good luck with it all and please let us know how you get on.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Amethist
    Amethist Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi stickywicket.

    Been a rough few days in various ways and for various reasons.

    The ""PNOE"" was a typing error it should say ""ONE""

    Crazy as it sounds PTSD is hard But to us its a bit of a doddle now We dont let it stop us most of the time Yea there are complete **** storm episodes But as we have fought it together for over 1 years now We have it down to a fine art most times.

    Just a bit annoyed at the moment Am on Steroids in a reduseing dose for 4 weeks One week in so three to go. Was told i would have an appointment for about 3 to 4 weeks after last one Got letter yesterday For 8 WEEKS So 3 weeks Steroids Then nothing at all for 5 weeks.

    Not a happy bunny about this at all.
    Don't walk on egg shells Don't take crap.
  • stickywicket
    stickywicket Member Posts: 26,242
    edited 30. Nov -1, 00:00
    I'm afraid waiting is all part and parcel of this lark. Nowhere near enough rheumatologists and far too many patients.

    My own solution re the steroids would be to check with my GP (even if it was the consultant who prescribed them) to see if I could reduce more slowly. Most of us find the last lap is very difficult anyway so it might be handy to be able to do that but do check first. Steroids are wily beasts and, these days, are sometimes prescribed in eye watering quantities. We have to be very careful about their reduction.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    How long have you been taking the steroids and at what dose? I think the modern medical thinkng is a short sharp shock then drop rapidly before the body becomes too lazy to make its own. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Amethist
    Amethist Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi dreamdaisy

    I was given a four week course

    20 mgr for 7 days then 15 then 10 then 5 I was struggling with flare up occurring every week lasting for 3 to 4 days at a time. Hands are the worst though 1 ankle is effected.

    Going to GP in morning Basically to tell him he got it wrong when he said there was nothing wrong Not first time he has done that 18 months ago he said i just had an irritating cough and it would settle MM Ended up being diagnosed with COPD 12 months later.
    Don't walk on egg shells Don't take crap.
  • stickywicket
    stickywicket Member Posts: 26,242
    edited 30. Nov -1, 00:00
    That's good that you will be seeing the G P as steroids have to be given the utmost respect. I hope he can help. Please let's know how you get on.

    I presume the rheumatologist is aware of your COPD. Some DMARDS might be best avoided.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    GPs are humans who may know a little about a lot but do not specialise, surely they cannot be expected to a) remember it all and b) make accurate diagnosis if the symptoms presented do not 100% match the textbook examples. My arthritis took nine years to be accurately diagnosed because I wasn't textbook.

    The symptoms will return as the steroid dose is lowered because they only mask, not cure. They also cause damage to all body tissues if overused or misused. Arthritis has one aspect which is often overlooked - we have to grit our teeth and get on with it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben