Swelling,pain and feeling very very low.: Dear everyone... - NRAS

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Swelling,pain and feeling very very low.

Heathersmum69 profile image
22 Replies

Dear everyone,

I hope you are all well at the moment. I have had a very bad day at work. Firstly my hands and my fingers are hugely swollen,my back and neck are on fire and I feel very very down.

I'm not normally one to moan,but today my mood has taken me to a very dark place. I have spent most of this evening crying . I don't know if I am going in to work tomorrow. I feel as if I want to hide myself away. I have noticed that I have become very angry with myself . I have lost my confidence and feel just so useless. For work I am an orthodontic dental nurse.this means that I need my hands, good dexterity ,eye sight and a lot of stamina as I work from 8.30 am to 5.30pm . everything that I just don't have at the moment.

I have an appointment with the nurse specialist next Thursday to talk about new medications. (Biologics)?

Until then I am just muddling through. I have just started some Prednisolone 15mg, but my eye sight seems very bleary. Is this normal? This makes it almost impossible to see the brackets and instruments to do my job. Even with new magnified glasses!

What would you do regarding work if you were in my shoes at the moment? Also my blood pressure is high as this was checked last Friday at the Drs . All thoughts appreciated.

Anyway , I'm off to bed now. Sorry for the long moan ,I feel as if I needed to talk to someone who truly understands.

Good night everyone,and God bless.

Jane xx

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Heathersmum69
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22 Replies
babssara profile image
babssara

Hi Jane, sorry you're having a bad time at the moment. I too am just coming through one. You already know you will pick up again. Give yourself a little break and do what I did today - had a duvet day. Feel so much better for it. Good nights sleep is what you need. Gentle hugs. Babs x

Heathersmum69 profile image
Heathersmum69 in reply to babssara

Thanks Bats,

I already knew that answer. Although I don't like to give up and take to my bed, sometimes that is the only way to get through this. I know it will pass , but at the time of tremendous pain, all you want to do is curl up and die.

By the way it is 3.30 am here in Blighty, time for a cup of tea and some more pain killers.

Take care of you too Bats.

Gentle hugs ?

Jane x

babssara profile image
babssara in reply to Heathersmum69

my kind of girl. Can't live without tea:-)

Heathersmum69 profile image
Heathersmum69 in reply to babssara

Morning Babs,

I have taken your advice and stayed home today. I intend to look after me and stay in bed and drink plenty more cups of tea.

Hope you are well.

Jane x

Heathersmum69 profile image
Heathersmum69 in reply to babssara

Sorry Babs, I thanked Bats instead of you for your reply.

That would be my poor eyes 😗

Take care,

Jane x

Wow, your description is incredible. I definitely think a day off or two or three are warranted. Find something that makes you feel good, maybe the local pool with a sauna and hot tub and give the prednisone time to kick in. I would ask a professional about your vision- I haven't heard prednisone affecting vision but some of the DMARDs can.

Take care of number 1! Cheers Doreen

nomoreheels profile image
nomoreheels

Hiya Jane. My thoughts are you need to rest. If you don't you're battling against it & that's not the best idea, you risk ending up even worse. Hopefully the pred will start to do it's work soon & help your inflammation but you need to help it along a bit.

What concerns me a tad is your bleary eyes. Yes it can be a side effect of pred but I'm a bit bothered, particularly as you've said your BP was high. Do you take meds for it, a beta blocker or the like? Were they bleary when you had your BP checked? If so how did your GP react when you said they were bleary? Sorry for the questions. x

Heathersmum69 profile image
Heathersmum69

Hi Nomoreheels,

Thanks for the reply. No , my eyes weren't bleary when I saw her last Friday,this just came on yesterday. I haven't got any meds. for it but I am on Adizam for Atrial fib. I am going to stay home and rest today and see how it goes.

Kind regards

Jane x

nomoreheels profile image
nomoreheels in reply to Heathersmum69

I think you're wise to opt to stay at home today Jane & I hope by now you're feeling a little more rested at least.

If your eyes are no better over the weekend it might be prudent to make an appointment with your GP, just to be sure there's nothing untoward either with your meds or your BP. x

Jora profile image
Jora

Poor you. Going to work with that level of pain sounds unnecessarily heroic! I'm an artist and can't paint at the moment, but the thought of impressionistic orthodontics is a bit alarming! I'd get your vision checked out ASAP. i believe it could be either the illness itself or the medication.

Prednisilone plays havoc with my moods. It makes me bipolar, I would say. And at 15 mg, I could be either rather euphoric, or like you sound, very low and weepy. The hardest bit ( I find) is when reducing. I have to taper very very slowly, or I get dangerously depressed. Depression is a recognised symptom of RA, but it's also very reasonable to feel very low because you have the wretched thing.

Do be kind to yourself.

Jo x

moomie profile image
moomie

Hope you are feeling better today. I totally can connect with everything you are feeling. I hate to have time off too. In my experiences when I have preds if I think yes feeling better carry on it does not last. If forced to have time off rest with the preds it doeswork better.

I also think you should go to the G.p to check your eyes.

Cups of tea biscuits and try watching true movies. Sloppy films if I can I watch those often doze off but it is good.

Pain killers rest and films sounds good to me !

Take care

Heathersmum69 profile image
Heathersmum69

Sounds good to me. I had already planned a me day today. Tucked up in bed with my book and a good film.

Thank you for replying.

Take care Jane x

hedgehog45 profile image
hedgehog45

Oh Jane, you poor thing. I can completely identify with you and what you are going through. It does sound like you need time off work to recover and rest in order to get to abetter place physically & emotionally. I feel exactly the same... I work as a TA with special needs children and only started back to school last week but am really struggling at work. Came home last night with virtually no feeling or movement in my hands (struggling to type in fact), feeling very low and tearful and wondering whether I can realistically carry on. Despite desperately wanting to get to work today, I've stayed home as I cannot drive myself in let alone manage in class. Feel like such a wreck at the age of 46 and worried that my physical limitations and low mood are impacting on home life with hubby and children - really don't know what to do for the best.

Sorry for my moan - its' just good to be able to off load to people who know exactly how you feel!

I hope you're enjoying a restful day at home in front of the TV which is what I'm doing !

Jayne

Heathersmum69 profile image
Heathersmum69

Hi Jayne,

I am totally on your wave length . I am home today too as I just can't cope at the moment. I am 45 years old and feel 95. I feel ever so low and not in control which is just not me. I too have two teenage children and a wonderful husband.

I am not one to give in easily ,and it seems to me that you are the same. But I have thought long and hard about this , and I have decided to think of me for a change. It's not in my nature to think of myself before others,but right now needs must.

Take care of you today,and enjoy the peace. 😀

Gentle hugs

Jane x

moomie profile image
moomie

Heathersmum sorry you are feeling like this. But also pleased posted this,I feel just the same and now do not feel so alone.

Take care and enjoy your rest.

Heathersmum69 profile image
Heathersmum69

Have you ever heard the saying ,what doesn't kill you makes you stronger?

I believe in those words and refer to them over and over again.

Keep smiling.

Jane xx😃😃

cathie profile image
cathie

Are the people at your work understanding? It sounds as though they need to know what you're going through - I bet you have to stand a lot at work too? This is such a difficult illness to live with, I can never be really sure how I'll be. But I think that being able to stop and rest - even if its just for a wee while - will help.

Heathersmum69 profile image
Heathersmum69 in reply to cathie

Hi Cathie,

No they are not. Is the simple answer to your question. My line manager is on holiday and the Senior nurse who is no more than a child is useless. I sat her down the other day and tried to explain to her about my RA. She was on her phone at the time and didn't look up,she carried on typing. Then I explained about the fatigue and pain. She looked at me with a vague expression. I said that I had a booklet from NRAS about coping with work,and still no reaction.

So today I text her and said I wasn't coming in because of my flare,said that it was because my back and hands were sore and I couldn't do my job. I also left a message at work.Guess what ,not even an acknowledgement all day. How bad is that ?

I'm not due in now until next Tuesday but I am going to the Dr on Tuesday and she wanted to sign me off last week so we will see.

Jane x

cathie profile image
cathie in reply to Heathersmum69

I think if you're in a position to stop work that would be a good idea. or go very part time. I wasnt able to do that when I was first diagnosed and wish I had, but struggled on for almost ten years.

That senior nurse sounds incompetent, and it doesnt sound as though they're worth struggling with while you're ill.

I hope you start feeling a bit better for a rest

Cathie

Jora profile image
Jora in reply to Heathersmum69

It sounds to me as if your boss or line manager needs to be educated. I would arm yourself with all the appropriate facts, links to websites etc. It must be dreadful to have to deal with that worry on top of the illness itself. maybe the NRAS helpline could advise you about your rights.

Try and rest till Tuesday. Jo x

babssara profile image
babssara

Hi to everyone, I think there must be a full moon, why are we all feeling so low and in pain. Since diagnosis (only july) I've said i'll never let it get me down. How little did I know!!! Doesn't it do the heart good to be able to have a rant, moan, cry, pity party with kindred spirits. I've declared today as annual duvet day:-) Babs x

Heathersmum69 profile image
Heathersmum69

Here here. I have been home today in my p.js just sitting,sleeping on this site, reading. I have had a lot of time today to contemplate my career. I have had a chat with my husband and maybe I might need to temporarily give up work for a while . Just until I can get my medication sorted.

I'm not one to do nothing so that will be hard, and I'm not very patient ,only for something's . Anyway with support from my wonderful hubbie and my children ,I will be alright . Tomorrow has got to be better than today.

Jane x

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