Burning the midnight oil

Well folks I've been back at work 4 weeks and I'm struggling again with aching joints again plus terrible fatigue , this is the 3rd time I've tried to go back to work and I'm struggling again, so I'm going to call it a day, and I can't sleep with the burning in my joints so I'll be lucky to get any sleep tonight , this disease really grinds you down

15 Replies

  • Hi Popsmith, you and me both! I've been up since 12.30 again! Over these last 7 days I've had approx 14 hrs sleep and one night no sleep at all! It's so draining isn't it!

    I'm so sorry that you find yourself in this predicament again. You can't say you haven't tried. Time for you to be kind to yourself, I'm sure that you won't regret it.

    Luckily for me I was able to give my job up my 4 years ago at the age of 58 due to 3 flights of stairs and constant fatigue and screaming joints. Though unfortunately i'm one of those who just missed out on receiving their pension even though fully paid up. I started work at the age of 15, so annoying. But for me it was the right thing to do.

    Hope things improve for you soon. Big hugs xxxxx

  • Hi I've tried 3 times going back t bed but no luck I'm still up so will try a nap later on, this disease is so draining , I'm going to give reumy nurse a phone today, I'm on 20mgs of Metz, 4 sulfazalasine a day and 2 hydroxocoloquine a day and I'm getting worse instead of better and I've been on them for a year now, so I think a change is needed, I've also got oa as well which doesn't help, hope you get a nap later as well

  • Hi pop smith I totally empathise with you it's now 5.44am I'm still awake. I had a steroid injection yesterday in my shoulder but the pain has not gone yet. I have restless legs and pain in my wrists. I will finally fall asleep about 7.00 am then sleep until 1.00 pm which totally messes up my sleep cycle. That's RD hope you get some sleep X X X

  • Hi Shazbat, sorry to hear the injection you had in your shoulder hasn't worked yet, I hope it kicks in today and you can get the rest you need. Take care my friend, hope you feel better soon.

    Sue xx

  • Hi Sue hope your well are you still in Canada. The steroid injection seems to be working. I finally slep for a solid 18 hours. Couldn't believe it when I woke up. Hubby said in came in to check me half a dozen times because he was worried. Lol how is the RD are you still managing x

  • I too have Rheum and Osteo arthrits and I'm on the same meds and dosage as you, plus a cocktail of other drugs for other conditions. I've been on them for about 8 yrs now and the did take some time to kick in. I am still trying to get over a nasty cold (4 weeks now) and have been on antibiotics. Yesterday, my GP put me on steroids due to my ESR going to 62. At the moment it's the OA which is giving me the most trouble.

    Maybe a change in meds is what you need. Probably best to give your Rhuemy a call.

    I give myself a 20 Minute rule when waking. If I drop off fine, if not, I will get up and have some hot milk settle downstairs with a good book and a blanket. Sometimes I put some gel or wheat bags on my knees. If they are giving me gyp. Though there have been many occasions when my kindle has dropped either on my face or the floor waking me up again! Sometimes I will put on the radio or a DVD and find that I have drifted off to sleep on the sofa - but at least I slept. I hope you can get some shuteye soon and yes this disease does really grind you down at times.

    Hoping today will be better for you. X

  • i think it is the rd thats giving me trouble because im getting burning sensation in my joints but it could be both its hard to tell but im going to ask about biologics because the meds should be working by now

  • Have they discussed biologics with you? They can make a big difference. But not sleeping is horrible and worse if you have to get up to go to work. I find a radio on softly(I use my iPad so as not to disturb) is relaxing and helps me to rest. Xx

  • i will try that cathie, i try not to wake missus up but shes got carpel tunnel on her hands so shes up half the night as well, what a pair

  • You can praise yourself for trying but its your body and you need to try n not make yourself at worse. I hope you are taking all your sick pay before you leave n the job can't give you anything less to do.that way you will be able to claim some benefit.I had to retire due to ill health n was able to eventually claim ESA n smal amobt if disability allowance. It's the not having contact with people n getting out that hit me hard. These diseases have aged me so much too

  • When i got made redundant six years ago i was adamant i was going to get another job,but my remploy advisor put it to me bluntly that i was not fit for any work and who would take me on the way i am and sadly he was right and i wish he wasn't. I still wish i could go to work to be honest,but even i know i couldn't do a days work now. So my advice to you is get medical retirement and recover and if you can find something that is more tailored to your illness and you find interesting. If you can't do anything find something that you can do for yourself while sitting at home. I am on my laptop a lot of the time and i do adult colouring in books and scaper foil as well.xxxxxx

  • Hi

    I have been through this.

    Firstly do you have a union. If not join one as they can really help you cope with your managers and are on your side. Then see what the options are first. If you leave then you don't get anything g but if they retire you on ill health you may be able to get pension early and other financial help.

    Also talk urgently to your Rheumy nurse. They might give you a steroid ( I even got a steroid drip when very ill) and it sounds like your meds aren't controlling the disease , there are others such as biologicals.

    Then call the GP and get some time off work, yes more of u need it! This gives you time to get the Rheumy and union etc. You are entitled to be off work.

    So you can then make proper decisions when not so pained.

    If you then decide to leave then it's thats good what you don't get financially you make up on time not having t get up too


    Give the Nras helpline a ring too their number is on the website. They are so knowledgeable and supportive.

    Good luck with your decisions but I think get those bits of help too xx A

  • It was my OA not my RD that used to ruin my sleep but that's been solved since my GP took control. Do you think it's the pain or something else that's causing your problems? If it is OA pain do see your GP & explain, hopefully yours will be as good as mine & recommend effective pain relief. It's misery causing the longer you don't have restful sleep, I know believe me! :(

  • I think it's the RA ,I've phoned reumy nurse and waiting for her to phone back, sorry it's the way I've wrote it,I'm not going to leave I'll bid my time and retire ill health if I can they can't say I didn't try as this is the 3rd time I've broke down at work and there isn't any light jobs as I work in local authority on manual side and with all the cut backs coming I'll be glad to get out off it , but I won't leave I'll wait until I'm pushed

  • Good to hear , it's awful in the night when your sore and tired and know you have to get to work . Feel for you.

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