Just saying Hello and giving an update : Hi guys, how... - NRAS

NRAS
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Just saying Hello and giving an update

Hi guys,

how are you all? I hope not too bad. I have been extremely tired and my fingers and toes have got much worse lately, so I'm actually struggling typing right now.. I would like to try to minimize my typing but it's actually really difficult because of computer and phone use daily! :o How do you all cope with this?!

I have told work about my diagnosis and they have called in a DSE person who is also a Physio. This should happen next week. I don't know what to expect but I suppose I can let her know what my struggle is currently.

Today I'm working from home and I'm really relieved as I don't know if I could have gone to work :( I went to give a presentation with a colleague in Hertfordshire last night and it was quite late plus the walk from the station to the venue and vice versa was way too much for my body. I don't know how I got back in 1 piece. I feel inflammation pain everywhere since. It was my first presentation and I enjoyed it but I think I will have to let them know that if it involves too much walking they either need to arrange a cab or I can't make it... I can't be feeling this way for a presentation. It's just stupid.

I also went to see an NHS Rheumatologist on Monday. He was okay..nothing special. A bit stupid just like all docs..! But he did examined all my joints which is what the other specialist hasn't done. He, however pressed so much on my tender ankles and fingers that I had a lot of pain afterwards. He also sent me for hands and feet X rays. Not sure why no wrists and ankles as well? But anyway, he's also increased my Methotrexate dose (and Folic Acid). Which will be increased every 2 weeks until I get to 6 pills.. We'll see if that helps. He also referred me to a specialist nurse. I told him that my pain is mostly where my very subtle nodules are on the index and middle fingers (on the side of the MCP joints) and he replied saying 'No that is not a "common" site for nodules'.... As I said 'stupid' docs. Oh well at least he helped out with the meds and he sent me for X -Rays. What do people do for painful fingers and typing...?

I have a First Aid training all day tomorrow and Friday and I really don't know what I was thinking when I agreed to extend this certificate and responsibility.. these training are so intense and require a lot of simulations. I hope I'll be ok :O

I hope you're all well! :) xxx

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The period after diagnosis is tough. But hopefully once your treatment takes effect things will get a lot better. Just try to get as much rest as you can until then.

What dose of MTX are you on now? As under 10mg (4 tablets) is very low and doesn’t do much for most people. So maybe you will see a huge improvement in a couple of months. It usually takes around three months on an effective dose for it to work properly.

And what you might be feeling on your MCP joints is the inflammation. The x-rays should show up what’s there. (And no need to do ankles and wrists as hands and feet will expose activity and be a useful baseline).

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Thanks you Helix for your words of comfort and encouragement! Well I am still on 7.5 mg a week, but now he has increased the dose so this week I'll be on 4 pills instead of 3. And will increase up to 6 pills and stay on that dose.

Yes i'm trying to rest but work is very busy lately so I guess I'm finding it hard. My Manager told me to just get a cab next time and the company will pay so that's good.. xxx

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Hi,

Make sure you tell the first aid instructor that you’ve got RA, I recently did my first aid renewal and he let me do the CPR with the dummy on a chair, saved me kneeling and putting pressure on knees and wrists.

The Rheumy seems to be doing a reasonable job given the lack of time they have to see everyone but you might have to look at reducing your hours (or days) at work, I found it hard to do full time, although I haven’t yet stabilised my medication.

Best of luck!

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Thanks! Yes I was thinking of letting them know but then.. I'm fearing that I'll put my work into trouble as they should make sure that the First Aider chosen is 'fit' to do the job when required... and I'm no longer fit! but then who knows what I'll be required to do.

I guess I could say that is a very new diagnosis which is true.. and that I will let work know very soon.

I'm working from home one day a week but yes it's not enough when you are fatigued and in pain x

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Hello Regina!

Good to see your post and that your treatment is progressing 👍

My forefingers and middle fingers have gone knobbly at the DIP joints (only since starting RA meds!) but the rheumy's are disinterested saying "that's probably OA" but why would wear and tear suddenly show up like that? Anyway, hope your MTX kicks in properly soon x

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Thanks JFlay! :)

yes I'm glad that the treatment is increasing so that I can see if is working or not with me. I hope the side-effects won't increase because of this... Let's hope not!

It's odd but I feel like my inflammation and pain are progressing each week.

Well if they don't believe it's RA they can verify this on Ultrasound..?! :@ xxx

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Ultrasound didn't show anything abnormal on those particular joints but did on others that look normal 🙄 it's all very confusing!

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That does sound very confusing. I guess the early stages of RA can be confusing and might not show inflammation everywhere or consistently xx

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Hi Regina79 - I can relate as I work too and have to battle to the other side of London. There were days I would get off the train and get the next one right back, I just could not do the travel due to excruciating pain - the tears would roll down my cheeks and I would try to hide. Things have got better since thankfully. Don't give up hope.

I still have tender feet and hands, I feel it in the mornings. Gentle hand exercises help me.

My work has been a Godsend as now can get in later, avoiding the busy rush hour and work from home.

Be sure to balance getting up and walking every hour as well as not over doing things.

I am have discovered journaling things helpful I.e good days and the not so good. I also avoid stress - if I miss the train I get the next one 😌

Wishing you well.

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Thanks Hessie. I will try and not giving up HOPE! :)

The thing is that my hands are bad all day long, not only in the morning... :o so i dont get it. My grip etc is getting worse by the day. Scary. It's so frustrating. Lifting a plate feels so heavy?! So odd.

Oh that's good. Did you ask work to let you get to work later and work from home more? How did they take it? Were they ok about it?

I'm seeing a DSE/Physio person next week at work and I will let her know about my struggle so we'll see what she suggests. xx

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I feel for you. It’s horrid in the early days after diagnosis and getting the drug regime right is brutal. I went through quite a long stage where I couldn’t hold a pen, lift a cup and saucer, changed all aerosols to roll on or similar. Walking was impossible. It was miserable. Can you talk to your employer and take some time out while you adjust? I know I was lucky as I run a business and put a manager in so I didn’t have to work if I couldn’t.

Now for the positive bit! I did always wonder if that was how it was going to be. But it isn’t. I don’t have any issues with my hands now, walking isn’t painful, just exhausting and I do have a blue badge though rarely use it. I’m back to working full time and more and I have an active social life. Hang on in there. It will get better!

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Oh that's great to hear!!! thanks so much for the positive message and encouragement. And also for sharing your story and understanding :)

It does help all this support.

What drug helped you getting your 'life back' out of curiosity?? I wish this will happen to me.

What I don't quite understand is why some people seem to still have big problems even if on meds after many years.. while some like yourself seem to be better on the other hand?! I'm very confused. xxx

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I just really hope I'm as lucky as yourself. x

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It took a while. Mtx/sulfa weren’t touching it. Already tried hydroxy. Pointless. Only thing that kept me kind of in the land of the living was prednisone. Last November, after two years, I finally came off the Pred as I started biologics in October. That was the game changer for me.

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And a game changer for many others it seems! 👌 I’m glad to hear. Which one are you on? Any side effects? Xx

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Benepali and not a single side effect

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That’s wonderful! Xx

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Hi - sorry for my late response. I hope this message finds you feeling better. Do you take anything to help your pain? The pain in my hands was so bad I had to go back on Prednisone for 8 weeks. It helped me get through.

I asked work and made sure it was added to my personnel file - my manager also was very understanding, he could see I was hurting and said to stagger my travel. It was nice to see he valued me. I feel blessed.

Do ask, if they could do something it goes a long way to help your recovery.

All the best, keep us posted. 😌

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regina79 I have to do first aid training in 2 weeks and I have worked out I can't get to the floor as knees so bloody painful and my legs cramp and hands so sore and swollen. So if I do heart chest compressions I am probably either going to be too light or land up in the ambulance as well.

So levitation (I dont have to kneel then) is needed by patient and ideally no heart compression needed and I can do or be deemed safe to do first aid!

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Yes, I had to go on my knees three times today.... plus I can't stay in the same position for long as joints get stiff, fatigued and painful! :( good luck with it.. Let's not push ourselves too much. I will try not to push myself tomorrow. xx

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Hi Regina79. Not a good time for you just now. Hope life starts to get better for you soon. Medication starts to kick in and everything not such a struggle 🙂

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You can definitely say that Sumdy. Thank YOU. I hope so too! xxx

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Hi Regina, my hands are in poor shape and I can only type one finger fashion. Not that it's made any difference to my typing capabilities as I've never got the knack of typing and have always been a single finger typist even when my hands and fingers were in great shape. :-)

I hope the increase in methotrexate will improve things for you soon.

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Sorry to hear wishbone. It's horrible really, cos it's not only the typing obviously. It's the lifting (even a plate... and a mug), the grip, the squeezing, the EVERYTHING with your fingers! :o

I've always been a super fast typer and type with both hands. But on the phone I type with 1 hand very quickly. Maybe I should start typing with the right hand only while my left finger is so bad. I will start this and try my best, even if it will slow me down! xx

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I'm considering getting a talk-to-text system such as Dragon Naturally Speaking so I don't have to use my fingers as much.

Dealing with RA is incredibly frustrating, but having others who understand helps greatly.

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Oh great! Is this program for computers only? Is there anything for our phones..? Xx

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Siri?

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Both iPhones and iPads have a little microphone, third in from the left at the bottom of the key pad, which allows you to dictate. I use it all the time for emails and messages and am using it for this answer !

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Yes but you still need to hold them down until you’re finished right? X

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You don’t hold anything down you just lightly touch the microphone regina79 to start 😊

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No you just press it to switch it on. A line appears comes up with a tiny keyboard at the bottom and as you talk the line zigzags up and down showing the pattern of your speech and the words appear. When you want to stop you press the tiny keyboard. Apparently it is an advanced form of Dragon naturally. It learns your personal speech patterns very quickly and becomes more accurate the more you use it.

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Oh that’s great, thank you 🙏❤️

I think it’s different on WhatsApp as you have to hold it down there for the whole duration of the speech x

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What’s app is the same Regina, you don’t hold it down, that’s just for voice recording 😊

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Haven’t tried WhatsApp mainly use that for sending photos !

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