Another sleepless night

How long is a night when the pain gets to you!!

Had my current flare up now for 3 weeks, managing this with painkillers -as I have mentioned before had allergic reactions to medication ie hydroxychloroquine and another one I cant remember the name of at the moment. Its really getting to me now. Great pressure in my hands feet etc, but now I have got bad pain in my shoulders I have never had it in my shoulders before. Next appt with rheumy 25th Feb - apparently thats an urgent appt!!. Ringing up every day for a cancellation. Any advice greatly recieved x

25 Replies

  • That is the same day I go to biologics clinic, finally. If it is unmanageable go to your GP or A&E and see if there is something stronger they can give you to help. I have been like this for nearly 3 years. I am hoping that when I finally get on biologics it may improve. I don;t think I have slept well for all that time so I really sympathise with you. It makes everything more focused when you add in sleep deprivation. I literally drag myself through each day. I hope you can get some help soon.

  • ||First off don't worry about the lack of sleep,the more you worry the worse it gets. I have found this out the hard way. If you go downstairs because you can't sleep do what i do,i put my laptop on and spend some time on it and it soon makes me tired and i then sleep on my chair. I won't say it always happens,but most of the time it does. The secret is NOT TO WORRY about lack of sleep. I agree that you should keep on at the hospital. Doesn't your clinic have walk ins whereby you just walk in and see your nurse first,i know our hospital does. Try it and see what happens. Best of luck and hugs from

  • It's awful, never-ending. You've received sensible advice, see if your GP can prescribe something pro tem to help & keep pushing for a cancellation, unless you have a number for your Rheumy nurse? I'm fortunate my RD is controlled but my OA pain was keeping me awake. Since getting that pain controlled with new meds I'm getting proper restful sleep most nights now. Just need to find tune going to bed before I drop off, or get a less comfy chair.

    I hope your GP is helpful.

  • I suffer from chronic pain in my kneck and shoulders. I saw a physio consultant and she gave me exercises which stopped the creaking but not the pain. Your GP should be able to help until your appointment with your consultant. Steroids are the only medication that helps me. Hope you get some relief soon. X

  • Sorry to hear that your in such bad pain, apart from the steroids other have spoken about I have had injections but my Rhumey this week has prescribed me oral steroids, but I also take Naproxen which is an anti inflammatory which I find can help a little.

    Hope the flare easys up soon and you can sleep better

  • If you use laptop or tablet there's a new app which makes the screen give out yellow light which is supposed to interfere less with your sleeping. Worth a try.

  • Interested in this Cathie. xx

  • Yes I've been looking for it and may take a while. It does exist, I'm looking for the UK version - do you have iPad or mac or something?

  • Yes could use it on my ipad. ;-)

  • I'll try anything, thank you. My daughter has a SADs light - might try this as well, who knows I may find a totally natural 'cure' fro RA - I can dream cant I!?!?

    Thank you so much for taking the time to reply xx :))

  • Hi cathie,

    that's very interesting on many levels


  • Can you explain why its interesting to you Beverley? I use iPad most nights as the small one and new ones are lighter, and easier to read from than a good. But they do say that the blue light from computer screens tends to keep you awake so they've developed this yellower light for night time reading. I have to find it though and keep getting slightly different things.

  • Hi cathie,

    There has been a lot in the press about the light from TV screens, computers, smart phones interfering with sleep. As a bad sleeper myself, interesting to hear about this app. I think it would be useful for me!


  • I'll keep looking then Beverley it might help us all

  • :-)

  • My heart goes out to you. Am also in middle of flare at moment. Shoulders neck muscles and tendons in upper arms, right knee very big, wrists burning and ankles not too bad. The pain is being managed by by tramadol and 20 mg prednisalone. This because am in transition from methotrexate over to sulfazaline. Night times are miserable for me too. ♡♡

  • My heart goes out to you too, it seems that many many of use are suffering with the same pains flare ups around the neck, shoulders etc. I don't know if I am right, but I do always seem to feel worse when the weather is so very cold and damp. I am going through a really bad flare for the last month or so, but today, it is really bad and all I want to do is sleep, through the day, but not at night. Today has been especially bad pain wise. I see my biologics nurse next Friday in regards to starting Tocilizumab infusions. The consultant increased the dose of prednisilone back up to 15mg I was coming off them slowly and got down to 12.5mg. My consultant has stopped the Enbrel as he said it has stopped working which it can when you have to come off it and then re start again, that has happened twice now due to other medical issues. I am hoping that I will be able to start the infusions soon and hopefully, it will work for me. From the feedback I have received it has been very positive, I would cross my fingers if I could, only they are soooo painful and swollen too.

    I hope your GP can help you with stronger pain meds until you can see your Rheumey Nurse. My GP gave me oxycondone 5mg fast acting as I was already taking same medication but the slow release 12 hr dose. Unfortunately it doesn't seem to be helping today.

    Take care, I really hope you get some relief very soon. Roll on warmer weather. xx

  • Thank you - its nice to know I am not alone in this nightmare of pain. Not sure about the cold weather theory. Only because one of my best friends is a teacher in Abu Dabi, and is suffering terribly with a flare up at the moment - go figure!! I have heard people talk about 'biologic medication'. No idea what that is can someone explain to me.

    Thank you so much for your response It lifts my spirit to know I'm not alone in this xx :))

  • hi Franm,

    I have put a link below to our publication on biologics for you to look at. It explains all about them. I hope you find it interesting:



  • Hope your GP can fax or email your consultant to give a bit of extra weight to the urgency of you getting in sooner. Good luck. x

  • Rang my GP this morning to request this, but missed the 8am consultation deadline request the surgery has! I have to ring at 2pm to try again - if I'm not asleep I will ring. My GP is amazing, and I understand they have to have set times for appts etc... But I just need a break here. Have set my alarm for 1.55pm, and my partner is going to phone me to check I'm awake, just to cover all bases. Reading this back it looks like a minor military operation. Will hopefully get to speak to him. So everything crossed - theoretically speaking couldnt cross my fingers if my life depended on it!!- will get it sorted today.

    Thank you so much for your reply and support xx :))

  • Hope your GP could do something to help. xx

  • Hang in there. I just got out of a flare up. It ALWAYS hits me first in my shoulders, neck area. But this last time I hurt all over and had severe muscle spasms all over. Seems like it went on forever... but weather got warmer and attack finally went away.

  • People have mentioned muscle spasms which I've had but dont understand. What is it? When I'm flaring my hands tremble a bit too. Dont like that.

  • I live in the USA. The very best and possibly the quickest way for me to get rid of a flare up is to see the rheumy nurse for a shot of kenalog or other steroid. For me, it works by the following day. I get an order for a shot on an as needed basis keeping in mind that only 3 shots per year will be acceptable. I take care of this at my regular appointment. Do you have a shot called toradol (its a very powerful prescription injection anti-inflammatory) that you can have the nurse give to you? Both of those are good standbys for me. I also use a compound mixed up by a pharmacy (chemist) with good pain and inflammation fighters... you may want to look into that last one. Again, set this stuff up so you have it available to you when you need it at your next appointment. Everyone should leave the rheumy appointment with a plan B or pain breakthrough plan so it's all documented and the nurse can just follow doctors orders. Sometimes soft music works for me too...

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