Unbearable pain in hands at night

[JulesCurrie]

I sometimes get excruciating pain at night. I wake to find my hands cold and numb particularly my fingers. Mainly my right arm Very strange feeling, The pain surges in sort of agonising waves of unbearable burning pain. Certainly not just pins and needles The only way I can relief is by swinging my arm hanging it down low out of bed or by walking around swinging my arms. I get slight relief for a while, lie down and it all starts again. Pain killers don’t really help. Have mentioned to RA specialist they just listen and nod saying everybody is different. I have always thought I have a high pain threshold but I can say it is really unbearable . Does anybody get this feeling?

[Hidden]

No, but I’d read up on Reynard's.

If my hands hurt I sleep in compression gloves which helps. Cover them first in deep heat or piroxicam gel.

[Hidden in reply to Hidden]

Also try Amitriptyline. I take this for Fibromyalgia and it’s stopped all my nerve pain 🎉.

[rabbits65]

As Criplady says Amitriptyline is excellent for nerve pain and treating the anxiety you get with nerve pain. I have peripheral neuropathy in my feet.

[helixhelix]

I get this from my pinched nerve in my shoulders. Exercises and physio have helped. A nerve conduction study showed oneof the nerves that runsto my hand was restricted.

[Amnesiac3637]

Suggest you get a proper diagnosis from a competent doctor. Your RA specialist sounds entirely unhelpful and saying everybody’s different is pretty much stating the bleedin’ obvious without doing their job! Until you know what’s causing your unpleasant and painful symptoms you’ll be anxious and worried and that doesn’t help your underlying disease one bit. Go back to your GP and ask to be referred to someone else who actually cares about their patient. Good luck and hope it gets sorted out very soon.

[Katie-Mag]

Hello Jules, as suggested by amnesiac I’d really recommend a trip to see your GP. Sometimes we really have to push to get the help we need, don’t be fobbed off. Good luck!

[Ravey]

Hello there Jules..I've not been on here for a while.Very very disheartened and depressed with the whole system to be honest. I know how lucky we are here in the U.K to have access to medicine and qualified professionals and I acknowledge and appreciate that, however after 4 years of agony and literally bags of different pain killers steroids pills and potions then being passed around and around to different consultants such as physiotherapists orthopedic consultants mental health professionals I dont really feel as if I have gotten any where at all really ☹.I can at least get out of bed a bit quicker.. could take up to an hour before I started the hydroxychloroquine..but I can't really get out anywhere much ..still so much I am unable to do with out a bloody rigmarole of some description. My mobility is a real problem with ankles and feet that give way or cant bear my own weight. My sleeping pattern is shot to shit..I can't remember the last time I slept through the night ..wracked with pain..restless legs..sweating and feezing. It really is a mess it's like a punishment of some description..relentless..You start the day feeling as though you have spent the night wrestling with mick McManus..stiff sore and staggering. This is apparently an improvement...which I suppose is true.I feel as though I should at least be grateful for that and I am but you feel as though you are constantly moaning or demanding attention because you still feel so unwell..ailments coming out of your ears.You hear things about a "flare " The fire never really goes out though ..so when there is a worsening its hell.I spent January in bed mostly..so stiff and in terrible pain .I felt like I was recovering from a physical accident..never felt so ill without an infection of any sort.You cant describe to anyone what you are really going through it's such a daily battle. I had more scans yesterday..hmmm it's not controlled properly apparently!!! Can see inflammation. Well bugger my old boots..you dont say 🙄..might try and add another medication or start injections. 4 years of moaning begging and "maybe " I might get somewhere.I was given sulfasalazine as well as hydroxychloroquine last year but the stomach ache and nausea on top of the arthralgia and pain was too much I felt suicidal to be honest so I stopped. My problem appears to be my bloods are completely normal..nothing apparent ever shows up..That makes it hard because they don't like giving steroids if it's not showing in your blood test results..They do help if the dose is high but they do so much damage and have their own set of yul side effects so you can't stay on them long term.My R A has never shown in my blood no matter how unwell I have been. Bone scans and xrays , MRI and ultrasounds show activity . My GP is also pretty unhelpful ..they did get me under the rheumatologist pretty fast to be fair but they dont particularly want to get involved since that or so it seems. It really is your own battle Jules and you do become incredibly battle weary and scarred.My rheumatologist is a very pleasant lady..I have seen a lot of professionals but it just feels like you get passed around the system without a great deal of progress .I presume I will eventually get there but I still can't get my head around the time it takes. Goodluck my love.I hope you manage to find some releif. Sending you a hug x

[StormySeas in reply to Ravey]

Ravey, I sympathise with your post as I’ve felt like this too. With symptoms like yours it doesn’t look as though your RA is controlled. Show your GP and rheumatologist the reply you wrote above - it really sounds as if you need some more treatment.

Sometimes you need to pursue things until someone takes notice of how bad you feel. Hope you get some specific advice from people on here whose blood results don’t show inflammation. It doesn’t feel right to me that things are still so bad 4 years on X

[Ravey in reply to StormySeas]

If only lol..show my gp ? Our doctor surgery has all but done away with face to face appointments..we have to send photos and do e consults mainly. And yes I'm constantly on the phone ..every one I have actually seen has questioned how under control this actually is. Maybe now I have started all over again with scans and physio and have an orthopaedic surgeon's opinion I might get some where. I've got plenty of diagnoses but I don't seem to have moved forward. Very frustrating...soul destroying.I just can't wait to move forward with it.It just totally consumes your existence.I knew it wouldn't be great but I don't think I was prepared for this.Im not sitting wallowing I try desperately to keep going .I've always been fiercely independent and really fit..it really has been a smack up the ear hole 😂.

[StormySeas in reply to Ravey]

I hope you get it sorted. My rheumatology dept has a nurse-run helpline which is useful for bypassing GP and getting help when needed. Your hellish January is just how I used to feel. It sounds like you're on top of things and doing everything you can but just wondering if you have a diary of symptoms and pain scores? Could you manage to actually get to the rheumatology dept whilst you're at your very worst? It's hard convincing doctors how bad you feel when they can't see you. In the end I found it helpful to use their scoring system - ie pain out of 100 etc to help describe how awful I felt. In the end I think it was only when I told them life wan't worth living that they changed my meds and things started to improve.

[JulesCurrie in reply to StormySeas]

our nurse led helpline is useless never answer when you need them ..

[JulesCurrie in reply to Ravey]

sorry to hear your troubles . I have been on MTX for 20 years coped relatively well really but do feel I am fibbed off .. I think I don’t complain enough. In all those years have only ever had two scans one was when I was first diagnosed … I read about everybody having different scans and check and I haven’t really had anything .. must complain more . Medication has changed to Sulfasalazine and back on hydroxychloroquine , taken off MTX so wait to see what happens. Thank you for chatting x

[StormySeas]

Jules, my sympathies - I used to have hand pain like this in the early days before treatment. It was usually after I’d done something strenuous with my hands and arms. It was agony.

I don’t know if it was trapped nerves due to inflammation but my drug regime stopped symptoms like this. I’m on MTX and RTX.

[football64]

oils be carpal tunnel syndrome. Or rainards.

Need a competent specialist. Not everything has to be RA.

[Haz58 in reply to football64]

So true! Since I was diagnosed they put EVERYTHING down to RA. I broke my back and was told it was muscular or inflammation and to contact my Rheumatologist. I did, she got an x-ray fine and yes I'd got a compression fracture at T9. A & E twice and just given morphine to ,'control' the pain which it didn't. When I thanked my Rheumatologist for listening to me she said it seems nowadays Rheumatologists are expected to do GP work too now. A month it took to find out if was actually broken. I was given exercises by a physio which I should not have been doing at all!

[Haz58]

I agree with crip. Amitriptyline seems to help my nerve pain now after taking it for 3 weeks. Also wearing compression gloves in bed. I had Prednisolone for 2 weeks 30 mg 2 months ago and hand and arm pain stopped. But skas 5 days later it came back. I'm back on Prednisolone now fir a week and yep the pain has gone. So it's inflammation in my case probably trapping nerves. Waiting to see if it all returns next week after stopping the pred 😪 I'm not on RA drugs yet though as had problems with every meds so far. Due to start new ones in a couple of weeks. Hope you get sorted. Xxx

[Whezziewhoozie]

hi, totally know how you feel I have RA, and have had both pins and needles and shooting pains. I am well controlled ish. Still get the odd flare … but having been through a couple of biologics over 5 years, this last one seems to be the best. However I do get these symptoms and it wakes me up and I can’t sleep sometimes. It’s not all the time and I go go for nights without it happening. It can range from bad pins and needles to shooting pains. At points I have thought that it’s just in my head ….

I did however have nerve conduction studies to rule out carpel tunnel syndrome and an MRI. Both were normal and referred from my RA doctor. I am lucky to have private health through my husbands work so was able to have them done quickly. So now it’s just about managing it. Have some pain killers next to your bed, I find if I don’t I wait too long to take any. Also annoyingly and I want to kill anyone who says this to me … drink water !! I also have compression gloves.

While it does interrupt my sleep and sometimes I can’t get back to sleep. The rest of the RA and fatigue is well controlled. I am not sure I am ready to go down the nerve pain killer route but that might be an option for you as it sounds not very nice.

Thought it would just be helpful to know that someone else gets it…

[JulesCurrie in reply to Whezziewhoozie]

thank you

[AR50cyclist]

Hi there. I was getting something very similar to this a few months ago, numb and painful hands and occasionally shooting pains. It was keeping me awake at night. Mine turned out to be carpal tunnel syndrome. I now sleep in wrist splints and don’t get the numbness or pain anymore. Yours may not be the same but it’s helped me a lot.

[Haired]

Hi, you poor thing It sounds very much like Carpel Tunnel. Can’t believe your consultant did not help. I have been treated for this twice first time before I was diagnosed with lupus & Sjogrens. Nerve pain usually started in early hours of the morning numb fingers and excruciating pain. Had it on both hands first time ended up in casualty. They gave me course of steroids and finger type glove which reached nearly as far as elbow a type of splints (with metal ) to wear in bed. Steroids sorted me out. Whenever I feel pain starting I go back to wearing splints.

This is what worked for me but you need to go back to GP or Consultant to help you as they have your medical history.I hope it gets sorted soon.

Take care.

[JulesCurrie in reply to Haired]

thank you good to hear your story

[BoneyC]

I have damaged elbow joints which I have not had replaced yet, but have been seeing an upper limb surgeon since 1998(!!) He says if it's the little finger and ring finger going numb, it's probably caused by the ulnar nerve becoming trapped which runs near the ulna bone.

More recently I have experienced a sharp pain in the centre of my left palm which a locum GP thought was ulna nerve entrapment. However it was a phone call so not the best appointment. He also asked whether the thumb and index finger were going numb, which they were not, as that would involve the median nerve.

Painkillers and exercise sheet was prescribed. I've been using a yellow Dynaband on a door handle which helps to stretch my arm but also triggers nerve like sensations.

Can only suggest you speak to a doctor (best of luck) and ask.

[oldtimer2]

It sounds much more like a nerve root pain than Rheumatoid Disease! A physio might be able to help with diagnosis and treatment - and possibly an MRI of your neck area? You need a diagnosis, not just 'everyone's different'!

[AgedCrone]

Ask for nerve conduction tests…it could be Carpal Tunnel Syndrome.

I had surgery for that last month……& I am already feeling the benefit ,& getting feeling back in my fingers.

Very little pain……l.but I became very attached to my washing up gloves!

[talulah14]

hi Jules. I’ve been experiencing exactly the same thing for the last few weeks. Mostly affects my thumbs and right forefinger. It really is draining having to get up numerous times during the night. I find walking around seems to ease it but as soon as I lie down it’s back again. It also happens during the day if I’m sitting reading or using my IPad. I’ve tried taking co-codomol but it has no effect. I’m on a permanent low dose of prednisolone so not sure if an increase may help. I’m seeing my rheumatologist on Friday so I’ll see what she has to say and if she has any advice

[JulesCurrie in reply to talulah14]

interesting … mine doesn’t usually happen in the day it’s usually at night when I’m still. The pain is in my whole hand. Did have some test for carpel tunnel there was some early signs of it developing but didn’t seem to be the cause. I sometimes think it may stem from something trapped around my elbow but unable to pinpoint it. Will be interested in what your rheumatologist says .. I wonder if it might be thickening of tissue trapping nerves when I have some swelling around the joints.. let me know how you get on .

[JulesCurrie in reply to talulah14]

how did you get on after seeing your rheumatologist?

[nomoreheels]

That you get some relief from swinging your arm would suggest an impinged nerve, it being eased/released by gravity basically. Rather than pain relief maybe something like amitriptyline would be of some help, as already suggested. I take both that (as a muscle relaxant) & pregabalin (for nerve pain) related to my neck.

Rather than my Rheumy my GP took control & prescribed both meds titrating up over months. You will need to have some form of investigation to determine what is going on before treatment &/or physio may help. Maybe that could be your next step? You certainly can't continue a you are, such pain is weary making.

[Miasnana]

I had the same problem with my wrists and this was one of the symptoms that lead to my diagnosis with RA the pain was caused by carpel tunnel swelling, the pain was unbearable and like you’ve described nothing seemed to touch it I ended in AandE and been given oramoph

[JulesCurrie in reply to Miasnana]

yes I ended up in A &E too had steroid injection and tramadol. Husband drive me because I couldn’t drive .. he had to keep stopping the car so I could get out and swing my arms ….

[zen4]

I would say it definitely sounds like a nerve problem.It needs investigation. it could be coming from the spine or from the wrist or elbow or shoulder. Like everyone says it takes a lot of assertiveness to get things done. I use isotoner gloves when I have nerve pain and they really help for night and day.They help with circulation too. An OT assessment might helps as OTs are holistic. I got the isotoner gloves from an OT. Also physios are helpful and knowledgeable too.

Take care with amitriptyline and pregablin as they are so easy to get addicted to and they are incredibly hard to reduce or stop as they can cause sleep problems when you reduce them and can effect mental health too. GPs do prescribe them if needed. I have also used a TENS machine for nerve pain and it can be very helpful and you will know straight away after a few sessions if it will help or not. I got rid of sciatica by using one.

Steroid injections are good for quick relief but it does not last so It should be given while other things are being investigated. It is not a long term solution as steroids cause bones to thin.

Sometimes it can feel all too much but things generally improve eventually!

[AgedCrone]

That is not unusual…could be a trapped nerve but could be nothing..speak to you GP and if he doesn’t give any useful advice, ask if you could have a nerve conduction test….it’s a painless test & can rule out a whole raft of reasons for your arm discomfort.

My NCT confirmed the very minor result - carpal tunnel syndrome…probably from nerve damage in my neck from a car accident years ago.

Recently I had very minor outpatient surgery to decompress the guilty nerve & 3 months later things are greatly improved. It was a bit inconvenient, but I was back driving in a week.

But don’t try any DIY drugs or remedies…take professional advice, .your rheumy is not unusual, they aren’t usually interested.

PS Just saw I replied to this a month ago…do see your GP…from reading all the experiences of other members….CPT does seem high on the list of probables! If it is that & you get treatment - the minor surgical treatments available do give rapid relief…but you do have to stand your ground to get a referral….especially right now.