Bit overwhelmed

Hello everyone. I started on hydroxychloroquine a week ago, no change yet, in fact pain in hands and arms much worse recently and making sleep difficult. Knees very stiff especially on stairs. I know it takes time. I don't have a definite RA diagnosis, am having an ultrasound today to look at synovitis in more detail and back to rheumy in 6 weeks. Feel a bit lost in no man's land as without specific label, don't know how to access services that might help at hospital.

Am only on 200mg a day although script said 200-400, not sure who decides if I start taking 400 and when? Do I just decide for myself if no improvement?

In meantime, feeling pretty low as the fact this is not going away is hitting me. I've had it since Oct with no relief so far. Husband getting the sharp end as I feel pretty angry and miserable. Then I feel guilty about being difficult to live with. Wider family don't seem to understand or offer help. I am so tired it is difficult to feel upbeat.

I'm not on any pain relief - I had naproxen early on but it did nothing. Should I be asking for something?

I have 3 kids who are all reacting differently (as I can't do things I used to) - 1 daughter staying close by and being very caring (showing her worry by being very good), other quite sad and quiet then has bursts of being angry, and 1 son getting angry and complaining that he is having to 'do everything' on top of school work - like open everything for me - when in fact I haven't asked him to do anything. He complains about me not doing things for myself (according to him) and gets angry. Originally he got very upset and didn't want to go to school, which turned out to be because he was worried about me being alone and having a fall or something. I haven't really told them a name for what is wrong - as we don't have a 'label' - only that I am now on some medicine to try and make things better.

I also got some new work last week - yay - which was hard-won as I had to delay the interview till I felt a bit better, and I worked really hard to get recruited. I start late April for 2 days a week and am not sure how to deal with asking for adjustments as I can't write for long, carry things, open heavy doors etc. I am not going to be an employee as such, more a freelance/ contractor so not sure how to approach it. They did make adjustments for my interview.

Overall just feeling a bit alone and overwhelmed.

Thanks for reading.

10 Replies

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  • These early stages are really the worst, so I feel for you as I remember it being truly awful. First off, April is still nearly 2 months away so you could be in a completely different and better place by then. So don't even think about that yet. Concentrate on the more immediate future.

    Other thoughts are to ask your GP for something to help you, they're are many different NSAIDs and some people respond better to one than another. Or steroid jab if you haven't had too many so far, or something like amitryline to help you sleep. Suffering in silence is a bit too Victorian for me - I think that's what your GP is there for.

    And have you at least been given the number of a rheumatology nurse so you can ask about the hydroxy? I recall I spent 10 days on 200mg to check i didn't react badly to it and then went up to 400mg, But everyone is different so always best to check with your own team.

    Re family, it's hard. With OH and older children you could suggest they read some of the stuff on the web that explains it, as that might be easier for them than talking about it to your face. Younger children might need more reassurance that their mum will be ok as they could well just be scared.

    rheumatoidarthritisguy.com/...

    traluvie-adaywithme.blogspo...

    Anyway, hope the ultrasound shows something conclusive one way or another, and you have a radiographer prepared to take the time to be thorough.

  • Oh you brave girl. I think you have just shown what s wonderful mum you are by your kids reaction, they are terrified of what might be wrong with you, i cant imagine what they have been googling for diagnosis. The methotrexate they havr put you on is a starter dose yo see how you go and as a precaution of you having RA because the sooner they start the better. If you tolerate it ok and it serms to be working then maybe they will increase the dose but you would have been far more lightly to have had an adverse reaction if you went on that dose immediately. Some peple have a quickish effect with MTX but most it takes a few weeks to work. There is no reason for you to put up with pain and i think you should ask. I admire you for striving to take on this new job but it is an ambitious thing to take on new emloyment right now. You have been very honest with us but i think you need to be very honest with yourself and start listening to what your body is saying. I fully understand the desire not to accept what is happening at the moment, denial is very common in any illness, especially in someone as caring as you and with responsibilities. All the fear you may have could be unfounded but i assure you that all of us whatever our circumstances have all had the same "what if' fears and however difficult things may become we have all found ways to change or to cope.

    Im sure the others here will offer you some good advice and support to help you through this.

    Blessings.

  • Im sorry i put MTX when i meant hydroxychloroquin, i blame the morphine for my being a donut. Helix helix is a very knowledgeable member of forum and knows meds and numbers way better than me.

    Blessings

  • I remember being all over the place when I first got my suspected diagnosis and was put on the HXQ. My blood tests were all negative for RA and ultrasound showned no synovitis but I was struggling with hands and wrists. Rheumy has now diagnosed me seronegative RA. The first few weeks are tough but there is a good chance things will improve when the HXQ kicks in.

  • You don't say if you have seen a Consultant Rheumatologist. If you haven't do ask for an urgent referral.

    If you are under a Rheumy - telephone the rheumatology nurses...they will explain exactly how you should increase your hydroxy........but one week is really not long enough to judge if it is going to help you. They will also advise an alternatives to Naproxen...or even adjust the dose you are taking.

    One thing we all have to come to terms with is that "getting it right" with the meds is a slow old progress with RA. I took me a good 3/4 months to get settled on the right dose etc.

    I know it won't be easy, but do try to have some rest when your children are at school.......& explain everything to your husband...I expect you have played it down to him & he is probably really apprehensive about what the future holds.

    Good luck with the new job...by April you will probably be in a much better place.

    AC

  • Hi and thanks for all replies. Yes I have seen a consultant (who was the one how put me on the hydroxy) but I paid to do that privately to avoid 3 month NHS wait (after 3 months already waiting for GP to refer me). That consultant has transferred me to his NHS department but it means until I go to a follow up appointment at NHS clinic (not due for another 6 weeks) I don't have a rheum nurse or know how the support system works there as have not yet got into their system.

    I had ultrasound of hands yesterday (in NHS) - meant to have feet as well but doctor ran out of time!!! so I have to go back for feet next week. This did not shed any light as she said although she can see my fingers are swollen, she can't see cause for my swelling and stiffness in the images as synovitis (identified a year ago on another ultrasound) is not apparent. Joints look ok which is good news.

    I also have all clear blood results including for inflammation markers.

    I feel confused as regardless of scan and bloods having 'good' results, I have very painful symptoms and loss of function in hands, constantly stiff knees, and intermittent problems with my toes, elbows and shoulders. Also raging carpal tunnel in both hands which rheumy said he thought is being caused by 'whatever this condition is'.

    I'm worried that as all these tests aren't identifying anything, I will get dismissed as making a fuss about nothing and just have to live with the fact I can no longer make fists, get up off a floor without my knees locking, climb stairs easily etc. Sick of it hurting and being stiff, not being able to dress easily, pain holding steering wheel, move a pillow in the night without huge arm and hand pain.

  • Your situation sounds like a replica of mine was.

    First, every morning do some tests on your general mobility to see if the hydroxychloroquine is working. People say that drugs don't kick in for weeks or months but they do but they are unnoticed. Thus, on your shoulders, do stretching exercises like you do to loosen up at the gym. You may well find that you can do a tiny bit more each day.

    It may well be that if they did not find synovitis this time, whereas they did before, that the hydroxy has started to work and will continue to improve. You need to give it a couple of months. I would advise you to check that the brand is not Quinoric. Several people on here, including me, have had serious stomach problems with it. To avoid those problems, you need to take a product like Omeprazole which reduces stomach acid and protects the stomach. I have just had to have a gastroscopy and colonoscopy because I did not have Omeprazole. The stomach problem is as bad as the RA, if not worse.

    I, too, work two days a week as a freelance contractor. Somehow, you do adapt. I could even write with my left hand, though I am righthanded, until the left hand went as well. I would advise you not to mention it at work but play it by ear. You will manage somehow and have good days and bad days. I still can't write properly but I use a computer for everything.

    My great problem is also my hands. I had problems with my feet, knees, elbows and massively with my shoulders but they have all resolved. The reason the hands are not resolving is that there is joint damage - same story as you, because of the delay, and I too had to go private which delayed matters instead of speeding them up.

    I had electro acupuncture on my hands which was brilliant and got them moving. I also used Chinese herbal tablets, both before and alongside the hydroxy. When I ran out of the Chinese tablets, my hands flared very badly, and the shoulders reached a plateau, but the hands improved dramatically and the shoulders continued to improve when I got some more Chinese tablets (taken alongside the Hydroxy).

  • You are not alone in this. All these tests are being done to find out what is going on. I suspect that this is probably the most painful and frustrating part of the whole horrible business and I feel for you. You are not imagining your symptoms, the medics simply haven't diagnosed it yet. Huge hugs and sympathy.

    Jan

  • Thank you x

  • Hi. Please don't worry that there isn't any improvement yet. Hydroxy can take up to twelve weeks or so to kick in (mine took exactly that and I remember I was beginning to give up hope). In the meantime it's not unusual to feel as c**p as ever. It might be worth talking to your rheumy/GP to see if they can give you something in the interim. I was lucky and was given a course of steroids to calm things down while the hydroxy was getting ready to work. The dose is dependant on weight/size. I was on 400mg to start with but that was reduced to 200mg for a couple of days and 400mg for five days each week when I lost weight. I hope you soon start feeling better xx

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