Far to early to be up: I have been up since 1.45am. My... - NRAS

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Far to early to be up

sylvi profile image
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I have been up since 1.45am. My joints ache, both knees and both hands. Since then i have dozed in my chair. This is the 6th week without mtx and i am going downhill steadily. By the time i go and see my rheumy i wonder what my fingers will look like. Already they are starting to resemble sausages,the chipolata ones at the moment. I can see a change in them daily. Sleep is something that seems to be alluding me at the moment. I find this sleeping thing goes in waves. Sometimes i sleep well and then it goes haywire.

Its only 2 weeks until my son comes home,this last 6 months have gone quicker than i thought it would,i mean we are in march and where has the last 2 months gone. It must be my age as the months and years are getting quicker than ever.

I have 2 lovely cold sores one on my lip which is the biggest and one on my nose. Just wonder what that will turn into,hopefully not another chest infection.

well i think i will try and get some more sleep.

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sylvi
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Hello Sylvie, did you get back to sleep at all. I have been up from about 5. But then again i was in bed from 9pm last night. Its a beautiful morning - i live right in the middle of nowhere and i am looking out on to a lake with the sun coming up, i actually should appreciate it more.

Didn't get the job that i went for yesterday. I did an atrocious interview, stopping mid sentence, not understanding questions, could not get a rapport at all going with the panel. I could do the job that was advertised but i certainly didn't show that i could. I do wonder if it is the drugs that is making me so dopey or the ra. I just couldn't focus - could have been nerves i suppose. Maybe i should give my present job one last go and hang in there til the ideal post comes along.

I cannot beleive that six months have passed either, it seems no time at all that you were waving your son goodbye. When do you see your consultant Sylvi, i hope it is soon, are you on anything at all - steroids?

I am on antibiotics as well and have been completely off the arava about two weeks - talking to the consultant yesterday she wants me back on it again as soon as i am finished the anitbiotics. Very annoying, she doesn't beleive that the arava have caused the side effect of itching and doesn't believe it is that serious. I will wait til i get a good chat with her.

sylvi profile image
sylvi

Mads if you were meant to get that job you would. There are better things meant out there for you. I'm not a religous person but i do believe in life after death and spiritalism. Thats the reason why i say that if you were meant to get that job. You have the satisfaction that you can do that job and if the person who got it doesn't do well at it you might get a second chance.

The weather seems to be nice here at bulkington villas as well. I did go back to sleep and i have just woken up. I went to the loo and got papers out of the letterbox.

I am still on steroids 2 a day until further notice due to the lack of mtx. My fingers ache so much. My knee is worrying me no end, i can hardly walk on it this morning and it is so swollen as well. I don't know whether to speak to rheumy/gp/ or hospital wouldn't know who to ask. I might email my consultants pa and seen if she can tell me anything.

Antibiotics are there to help us get over illnesses,but at what cost to our health. I think i might be giving more on monday when i go back.Hope you nsoon feel better.

Love sylvi.xx

in reply tosylvi

HI Sylvi, thats not good, if you could get that infection sorted life would be a lot easier for you.

Re job, no candidate got it, nobody met their criteria. I have asked for a follow up meeting to identify the mistakes that they felt i made so i am being proactive and i am being very sensible. I might try and do as Tilda has suggested and cut down on the pain relief a bit. WHen i get back on to a dmard i will think of cutting out the tramadol and cut down on the co-codamol and naproxen - i will leave the antidepressands til the very end.

Hi Sylvi. I was awake from 4am - went back to sleep at 6.30am and was woken rudely by the radio alarm at 7.20am. Was really achy last night for the third night in a row - a little more each night. Main sore areas are my ankles and toes, my right wrist and my shoulders. It seems to wear off over the day but in the night I find it hard to get comfy and shift from side to side constantly. Fingers are always an issue and this morning they are even more swollen and stiff than usual but it will fade away mostly as I get going and have already given them a hot water bath. Unfortunately hubby is coming off a nightshift so I have to get the boys off to school, walk the dog and prepare for son's arrival home at about 3pm so no chance of a rest. Then tonight hubby will have to sleep in our bed, dread of dread as he snores appallingly after a nightshift and I can't sleep through it no matter how tired I get. Spare room now taken by youngest son.

Do you think this ache is the RA or just stiffness from overdoing it? I've not had RA for long enough to know. I should be okay as have risen a dose on MTX and it's nothing compared to what you have to bear I know but it's wearing me down - especially shoulders and wrist - which has changed location but is getting a bit worse everyday. TT

sylvi profile image
sylvi

Tilda,it could be a combination of all the them. I have the same trouble is it fibro/ra/overdoing or my knee. I understand where you coming from. Speak to your rheumy and see what they say. Tilda pain is pain whoever has it,it is the same whether its you or me,so don't think my pain is anymore harder than yours. There are some people out there who is a lot worse than me,but they would say they are ok.

You try and rest today and enjoy your weekend.

Love sylvi.xx

Thanks. I know what you mean re pain Sylvi but this isn't really pain in my terms or I suspect in yours. Pain was when I couldn't do stuff and I can now - I'm just uncomfortable and sore that's all but it's still waking me in the night and have to think about which side to lie on or if I lie on back I get blocked up blah blah! Hubby thinks it's the exercise and spring clean yesterday but he doesn't like to think of the RA really (not surprisingly - not do I?!). It started before the spring clean and I do same exercises everyday so don't think it's that. Just seems to be building up a bit more each day. Might be the Tai Chi because it was all lifting arms this week but that wouldn't explain my ankles twinging. Can't phone rheumy - see my latest blog re why. Must go and start the day - can't seem to function on only 4 hours sleep though! Will get blood test at the surgery on Monday morning and then see my GP late afternoon so will ask him if it's still there.

Hope you have a better day. TTx

sylvi profile image
sylvi

I know what you nmean about sleep,if i can have a good night i can cope with the pain. Have you been reccomended to take ant-depressents,i know they are feared and they make you dopey and all that,but it might help. See if you can see a friendly doctor and talk to them.

You try and have a good day. love sylvi.xx

Cheers Sylvi - an hour's sleep this afternoon has brightened my mood a lot although the soreness and swollen fingers are the worst they've been in a while but as you say, can handle anything if I've had enough sleep. Speaking of which son and his girl are upstairs snoring heads off after a long journey (7 hours drive and an hour and half on a boat) and in anticipation of a good night out with old friends. Don't fancy anti-depressants will stick to my amitriptyline - I did tell my GP I was getting bouts of lowness and she said that was to be expected with the RA - especially following a flare so guess it's just something else I'll have to get used to. TTx

sylvi profile image
sylvi

How many of the amytrp are you taking,i'm on 2 a night,but if i'm really tired i do take 3. I don't get these young people who want to sleep all the time. My daughter went back to bed this afternoon as she had a headache,how does she think i feel with so much lack of sleep.

Don't stress yourself too much about being low,just accept it and tell people you are down and just ride it out. I now tell my lot if i am down and then if they get me upset,they can't say i didn't warn them.

I had a kip as well and i feel better for it. Walked round the close with my hubby after tea. I am trying to walk a little bit in readiness for this op. I am imagining what will happen if my knee doesn't go how i want it too. I am sure it will be ok,it is just when i'm tired i start to think like that.

Now tilda my friend you go and enjoy having your son and his girlfriend home and if you have a drink have one for me for going ten years without one.

Love sylvi.xx

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