In tears: It is 00:30. Can't sleep. Can't move my right... - NRAS

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In tears

JacquiThomas999 profile image
42 Replies

It is 00:30. Can't sleep. Can't move my right shoulder. Pain goes all the way down the arm. Sitting in a recliner in the sitting room, listening to Classic FM. I have phoned in sick for the morning which puts me on the watching you list. Can't get to Dr in morning, can't dress myself. Can't drive, have taken Tramadol. Feeling really fed up now with this horridious disease. Crying, but that makes my shoulder worse.

Need sleep, and hugs. Hubby is out for the count (someone has to earn pennies).

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JacquiThomas999 profile image
JacquiThomas999
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42 Replies
trish1957 profile image
trish1957

Sorry you are suffering so badly at the moment. No one understands what we go through daily the pain can be so bad at times. Hope you feel better soon.

Take care

Trish

Jmrose profile image
Jmrose

I know that feeling of being brought to tears because the pain is so great. Prayers up and out for you.

allanah profile image
allanah

Hi sweetheart . As an expert in not sleeping I feel for you . Shoulder pain is awful . Things that have helped me painkillers, heated pads, sitting up with extra pillows, seeing GP for steroid injections , new ergoflex mattress( amazing) , travel pillow.

Don't worry about work but if you have a personell department call them and tell them of your problems and they usually help , especially when you use the word disability or long term health condition then your absence goes down as disabilityday not sick day .

Hope u get settled and phone GP tomorrow. Hugs x

This post makes me sad. You don't need the added pressure of being on the "I'm watching you work list". So upsetting...I was in the same place at the begining of 2016.

You have a disability, you need help from an advocate. Do you belong to a union? If you do, let your shop steward be your advocate. If you don't belong to a union, call your local government official ( in Canada they are called your MLA, I'm sure the UK have an equivalent government official) These government officials are your advocate. It is their job to help you.

You need to focus on getting better and not have the fear of losing your job over your head.

Jess_doyle profile image
Jess_doyle

I get horrible pain in my shoulders at night tell the doctors over and over but they don't seem to care, but finding a position normally on your back can help so ur not leaning on the shoulder and sometimes even counting and focusing on your breath can help it does for me when I can't sleep, over thinking is the worst, I take paracetamol 15/500mg two of them sometimes before bed helps with the pain, also even get one of them teddys u can heat in the microwave, put it on the shoulder it's nice and soft.

I know sometimes nothing helps its horrible... sorry about this

JacquiThomas999 profile image
JacquiThomas999

I started the day with blood test and a Dr appointment for asthma. On 40mg of steroids, which should be helping but isn't. Hot teddy didn't work. Having difficulty with undressing to use the toilet. Painkillers haven't kicked in. Can't move right arm at all.

Feeling sorry for myself.

missymo profile image
missymo in reply toJacquiThomas999

Have you ever been to a chriopracter?? They are marvelous with sciatica or trapped nerves etc!! Kust a thought!! But i must earn you its very painful to start with!!

Jeanslmn profile image
Jeanslmn in reply toJacquiThomas999

Try a really cold gel pad I keep in fridge ready works most time s for me and two 30 ml codeine with your paracetamol

allanah profile image
allanah

Once you get your RA treatment it should help . Otherwise get help from RA helpline orGP X

JacquiThomas999 profile image
JacquiThomas999 in reply toallanah

I am on it. Had to stop MTX as my neutrophils were too low. Waiting for the tests results, hopefully tomorrow to be able to restart.

nomoreheels profile image
nomoreheels

Sorry to hear that Jacqui. Between the two of us we make a pair, my left shoulder is back hurting again, steroid jab lasted a week so I'm awake trying to ease it with electric heat pad. Hope you have enough relief to get some sleep. x

JacquiThomas999 profile image
JacquiThomas999 in reply tonomoreheels

Given up trying 111. I can't get to GP, can't dress, even having trouble with knickers! Can't drive wacky tablets.

I hope that heat pad works for you.

nomoreheels profile image
nomoreheels in reply toJacquiThomas999

It did thanks, that & another etoricoxib & an extra 10 mg amitriptyline (naughty I know)! I fell asleep in the recliner & woke again at 5am so took myself off to bed for another 3 hours. Did you have any luck with 111?

Jeanslmn profile image
Jeanslmn in reply tonomoreheels

Try alternate cold gel pad works for me

sylvi profile image
sylvi

Oh my darling bless you i wish i could say something that would ease your suffering,all i can do is send you oodles of hugs with loads of love for m me darling.xxxxx

Ellieellie profile image
Ellieellie

Understand fully I am like that. The shoulde pain is awful and I can't sleep either. I am leaving work because I just can't cope with it and this disability. I can't get dressed easily or drive as well. Unless you suffer from this the majority of people don't understand the pain we go though. You are not alone. Hugs x

BoneyC profile image
BoneyC

IMO shoulder pain is worse than hip pain. I worked 22 years as a secretary and the slightest movement when typing jarred my shoulders - excrutiating! However, after lots of pushing through, although I have very limited range of movement in my shoulders and still experience aches and pains, they are nowhere near as bad now as they were back in 1988. I was referred to an upper limb surgeon in 1998 and although they've offered shoulder replacements and elbow replacements, I haven't had it done yet. They don't discharge me, as they know its on the cards. Whereas when my hips became unbearably painful, I couldn't sit, couldn't sleep, couldn't get in/out of the car, I had no option but to have both those replaced.

I hope your shoulder pain subsides as mine did and you can carry on in work.

MaryTH profile image
MaryTH

Oh bless you, gentle hugs coming your way xx

AgedCrone profile image
AgedCrone

I remember those horriffic times.....sitting on the stairs crying at 3am & telling yourself it will go soon!

Will Your GP make a home visit if you call in & explain how much pain you are in & maybe give you some sort of pain killing injection?

Then when you can think straight you could contact your Rheumy for an emergency appointment with a referral & confirmation of your condition from the GP?

I know although you are in agony you will be telling yourself it will get better "soon"....but Jacqui it might not & I found seeing a doctor when you are really obviously in agony concentrates their mind to get something done!

Unfortunately with RA you have to push,push, push to get prescribed whatever turns out to be THE MEDS that will work for you.

I wish you all the best....but when you feel up to it & with your husband's help get on your doctor's case & insist on getting some treatment. Life is too short to be in pain like you are.

AC

meecoo profile image
meecoo

I remember going through the same thing years ago. Are you newly diagnosed? So painful and I couldn't lie down. Pain to shoulder and arm.

I hope you manage to get on so.e effective medication soon. 10 years on and I'm on the biological treatment. It's the best thing I've tried. Good luck. Hope you get some relief soon. X

Jeanslmn profile image
Jeanslmn in reply tomeecoo

What us the biological treatment ?

meecoo profile image
meecoo in reply toJeanslmn

It's offered after a series of other drugs have failed. It's very expensive weekly injections called Enbrel. It's helped me the most of everything I've tried. X

anne999 profile image
anne999

If your Dr is unable to do a home visit,can you get a friend or taxi to take you for an appointment.?

JacquiThomas999 profile image
JacquiThomas999

I spoke to the out of hours GP. Who has told me to take paracetamol and codeine and if the doesn't work take more Tramadol. As I have Tramadol in my system have added to codeine and paracetamol.

When hubby got up, he put me back to bed. I am up again now. I will make an emergency appointment with the needle tomorrow, when hubby is home and he can help me dress and take me. Unfortunately I moved to this village 3 years ago and haven't made a close friend and I don't feel up to anything today. But my mother is keeping an eye on me via phone.

helenlw7 profile image
helenlw7

You have my sympathies. I was un then, drinking hot chocolate, waiting for diazepam to work! I have arthritis in many joints, but at the moment my lower back, right shoulder and left hip are playing up - makes lying in bed in any position very difficult!

Hi Jaqui,

so sorry to hear how bad you are. I have put a link below to our article on sleep. There are some good links at the bottom to sites that may help:

nras.org.uk/guide-to-gettin...

I hope it is useful and please feel free to call the helpline to see if there is anything that we can do to help.

best wishes

Beverley (NRAS Helpline)

AllyWelshDragon profile image
AllyWelshDragon

Oh bless you. I've been there too with unbearable shoulder pain. My rheumatologist offered to start me on a low dose of amitryptiline as this can ease symptoms. I didn't accept it but maybe an option for you?

All the very best wishes from me.

Ally x

JacquiThomas999 profile image
JacquiThomas999 in reply toAllyWelshDragon

I can't drive on amitryptiline, was given it for ibs and I stopped taking it.

AllyWelshDragon profile image
AllyWelshDragon in reply toJacquiThomas999

This is why I didn't take it either. I also can't take tramadol or anything with codeine!!

Hope you manage to get seen and treated soon and find treatment that works for you. Best wishes x

Hi Jacqui - Not much I can offer but to let you know that we are all here to support you, and like the others I hope you feel better soon...

Jora profile image
Jora

Poor you. But you are not alone. It's nearly 6.30 and I've only slept for an hour. I hurt everywhere. The slightest movement makes it worse, but I do try and wriggle around a bit or I stiffen up.

It's nearly morning and I hope you have a better day. Try and focus on the positive things in your life. It may sound cheesy, but I find that counting my blessings really does help.

Best wishes. Jora

DelicateInput profile image
DelicateInput

Don't know if this will help but here goes.

If the pain goes all the way down the arm, I doubt it is coming from only the shoulder. The muscles and tendons in the upper arms are attached to the shoulder but the pain generating from the shoulder should not go past the elbow. Maybe you have a problem with the hands and wrists as the pain generates up to the elbows. It sounds like you have tendonitis.

There are other painkillers on the market rather than the run of the mill stuff. I recently tried Devil's claw for the hands and wrists (as my shoulder is wonderful at the moment though it was like yours and I could not even put on underwear). I would say it is about 70% effective, so quite good. It is very cheap and you can get it over the internet so you do not need to go out to the shop. Have a look at the Arthritis Research UK website for more info. Also, a friend of mine gave me a Voltaral tablet to try. Have not tried it yet but she has severe back pain (slipped discs) and it works. These are only suggested as a temporary measure to help you out for the time being. Somehow, various doctors always swear there's nothing available to relieve pain if the usual stuff does not work but there definitely is.

I am resorting to these for my hands as I can't get my usual Chinese herbal tablets.

PS: As someone has suggested, see a chiropractor or osteopath (very similar). They will be able to determine the source of pain as I doubt a shoulder problem would cause it to right down to the wrists - they are far better than doctors at this.

JacquiThomas999 profile image
JacquiThomas999 in reply toDelicateInput

My shoulder point is drawn towards the front. I think it may the additional problem I had last year of an impinged shoulder. I had physio. I can't take NSAIDs but the steroids for my asthmatic problem seem to be helping. I can't see a Dr who injects tomorrow, but I will see how I am over night.

DelicateInput profile image
DelicateInput in reply toJacquiThomas999

I had shoulder impingement, diagnosed by an osteopath. There was severe inflammation on the suprasinatus tendon on ultrasound. It felt like the pain was going all the way down the arm but it wasn't. I had hand and wrist problems and it was going down the arm to the elbow and up the arm to the elbow. I found the usual NSAIDs like Naproxen worse than useless because they also caused side effects. I was very stooped forward with the shoulder jammed and, funnily enough, the left shoulder was also affected but I did not realise it until it started to get better.

I had a combination of conventional drugs and Chinese medicine and it has worked a treat on the shoulder but I am expecting it to come back. The relief is overwhelming - couldn't get a bra on, hadn't driven for two years and only recently able to reach up to hangers in the wardrobe and open a window. I had a cortisone injection but it only lasted 10 weeks and had some side effects eg caused thrush.

JacquiThomas999 profile image
JacquiThomas999 in reply toDelicateInput

It is strange that shoulders affect our ability to dress ourselves. Hubby has to dress me when it goes. I struggle with knickers when using the toilet. I am only able to use one hand.

Kariss profile image
Kariss in reply toJacquiThomas999

Jacqueline, this might sound silly but if your husband wears boxer style pants and they would fit you, try borrowing them. They are much easier to pull up (looser in the leg and waist). I borrowed my son's when I had shingles in my leg and groin- knicker elastic was too tight for comfort. They were much easier to manage and nobody could see what I was wearing underneath anyway :)

JacquiThomas999 profile image
JacquiThomas999 in reply toKariss

Made me smile. Hubby wears a sort of tight boxer, I don't think it would work. But thanks for suggestion.

Jeanslmn profile image
Jeanslmn

i just wish there was something I could say to you to help you through but it B seems to be part and parcel of this illness we have all been there you will get through it. Just hang in there I take two codeine two parecetamol every four hours when mines really bad like now they don't seem to give me side effects like some of the stronger ones do it does dull the pain enough to get some sleep for at least three or more hours most times , I try remind myself there s others much worse than me and they get through it so We will too so hope it calms down very soon for you ,big hugs xx

Jeanslmn profile image
Jeanslmn

Forgot to say I use a cold gel pad on painful area I keep in fridge all time ready I find it really helps

ShellyC23 profile image
ShellyC23

I know how you feel, shoulder pain is AWFUL and always seems to get worse at night. Heated shoulder pads are soothing but it got to the stage where my GP prescribed Oramorph at night so that I could get some sleep. I'm just out of hospital after having my second shoulder replacement and feeling sorry for myself. I have one arm in a sling for most of the day and as I'm right handed I'm struggling to manage using just my left hand. Still maybe tomorrow will be better - ask if you can try Oramorph - I was horrified when my GP mentioned it but when it was a choice between that and continuous sleepless nights, in the end I gave in. I only ever took a spoonful at night and it seemed to do the trick. Good luck and I hope you feel better soon.

JacquiThomas999 profile image
JacquiThomas999 in reply toShellyC23

Good luck with the recovery. Hugs.

So sorry for you. The times I helped hubby try and get comfortable through the long long nights!! Then slowly oh so slowly hubby got a bit of respite from the pain. The meds were low dose initially and each change of meds bought more pain relief. I don't know how long you've been in pain but in hubby's case it does get better and I wish that for you too xx

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