Here i am early in the morning sipping tea and throwing pain-killers down my throat. I suppose now the anaesethic has worn off this is going to happen. I think by daylight if i don't get to sleep i am going to be cranky. Please excuse the spelling as i can't remember for the life of me how to spell that long word(thank fibro for that)
At least sitting in the sun my tan will improve( i know it is bad for me,but i do sit under a parasol). Hugs to anyone who like me is awake at silly o'clock in pain.xxxx
The photo is of the roses on my back fence.xxx
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sylvi
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Hi Sylvi, just like you, I am up and about too, another night I can’t sleep. Same every night! I’m mot sure how to explain why I rarely sleep but the culprit just like you, is severe pain.
My main issue is spine pain and after 14 major spine operations ((
(I need a 15th but no one in the
Medical profession is willing to do anymore surgery). I now have so much wrong with my back. I originally suffered a road traffic accident when I was a Police Officer at the age of 21. I was run over by robbers. I sadly lost my career and my health☹️. I now have a Medtronic intrathecal pump in my stomach, pumping constant morphine into my spine. Sadly, that doesn’t seem to be helping very much at present with my back pain as the site of the pain is now much lower down. Anyway I am now 56 and the most sleep I get a night is approx 2/3hours, so I get irritable and tired during the day. Now, my other problem is pain and swelling in lots of places over my body. Hands, fingers, knees, feet, neck. I saw a Rheumatologist about 7 years ago at Norwich hosp when this problem first started in my hands. I was told I did not have RA or OA. In those early days I often used to think the problem had gone away, only to find it would return some weeks/months later. Each time it returned I found it was affecting other parts and the pain slowly got worse. Last year in October I finally had enough and went back to my Dr who referred me to my local hosp...well my symptoms of painful, swollen and stiff joints are now so much worse and I can hardly use my hands or fingers. In the mornings my husband has to hold my coffee mug because I cannot grip the handle. I have recently purchased a large drinking cup where you slide your hand through it so you can hold it. I also have difficulty walking on my feet due to the nasty pains in my feet and toes .
Well here we are in July 2018 and I am still waiting for an appointment to see someone and the wait has been since October. I know the NHS is under pressure but that is a 10 month wait and it is not really acceptable especially when I am suffering so much pain. I still do not have an appointment and have telephoned several times- just to be told they have a long waiting list.
Now being new on this site, I have been reading lots of posts from other members who sadly suffer awful pains from RA or OA. Perhaps you could throw some light on whether my symptoms might be some kind of Arthritis! Last year my GP did give me an injection and it really helped but the benefit of the jab soon wore off just like my GP predicted.
As for me Sylvi, I spend my nights wandering the house, as my dear hubby sleeps. About 3 weeks ago I stood for a while leaning on the kitchen unit reading an old newspaper. I didn’t realise but I fell asleep. Whilst asleep, I fell backwards, right into another unit, bounced off of that and landed flat bang on the floor. I had so many injuries, bruises, cuts, I couldn’t get up and finally managed to wake my hubby who came to my rescue and put me back on the bed. Now I know I have cracked the bone graft from one of my spinal fusions and it is moving about and clonking, just the same a when some of my bone grafts failed from several of the past operations. That fall has made things much worse with my back and I don’t know who is going to bother to investigate or treat me as the Orthop Consultants read 14 operations and they are off they just turn and run away!
Early hours last June, I fell asleep sitting at the dining table. Again I was reading and again dropped off to sleep. This time my head dropped bang onto the oak table....blimey- I soon awoke, but a huge lump/bruise appeared just above my right eye. 2 weeks later my hubby found me at 7am asleep on the sofa, when I woke up my face had drooped on one side , I was slurring and it looked like I had a stroke. The GP sent me straight to hospital and so I spent June until October in hospital as I had caused haemorrhaging behind my right eye which seems to have caused a stroke. It was a nightmare. What a year. I was very poorly for several months, but other than a wonky eye I have now recovered well and am okay.
Well Sylvi, that’s a bit about me, there’s a lot more I could tell you but I think this has been enough.....the point of my message is to let you and other sufferers know ‘we are not alone as we sit wide awake on the night shift’. It sure is a long night. I just long for the daylight, the dawn chorus, then sunrise.... and just like you Sylvi I am loving this hot weather and look forward to sitting in the sun and topping up my suntan. Funny thing it gives me the look that I am a picture of health!
How I wish.... but then like many of us....I always remember there is someone else a lot worse off.... it doesn’t help much though when you are suffering so much wicked and cruel pain. Nearly breakfast time......I will be wandering again tomorrow night and the next and the next night....it’s been like this some years now, but it has got much worse and less and less sleep. I think I have become nocturnal!! 😊
Good morning all!
Goodnight Sylvi!
I’m loving your messages and such beautiful photographs. Lovely roses, such a deep red colour. Xx
Sue, so sorry you suffering like this, and living a nocturnal life as well ! It can be a lonely life when we are up and those around us are fast asleep. I live in a bungalow fortunately so able to wander about freely, but would so much prefer to sleep like ‘normal’ people ! You have been waiting far too long for Rheumatology appointment. Is it not possible to go further afield in order to get seen ? What blood tests has GP carried out for you ? I started off with Osteo arthritis, then rheumatoid arthritis hit me like a brick wall when I was in my forties, then lupus was added to the mix about 10 yrs ago. I am 70 this weekend on 7th July. I also have very severe spinal/neck inflammatory condition and have to use powerchair most of the time now as can only manage to walk a few steps. You have my utmost sympathy with your spinal problems, because it is my spine which has affected me the most, indeed it has crippled me. Can your GP not help you Sue in trying to get seen urgently by rheumatologist even if it means going further afield, surely they will know who has shortest waiting times. You’ve waited far too long as it is !! Thinking of you and hoping you manage bit of sleep, Lynda xx
It’s 3.55 am and I’m up as well Sylvi, sipping on some ginger tea, in lot of pain. I’m suffering a huge flare of costochondritis (inflammation in ribs) and it's just impossible to lie down in bed with this awful pain. Your roses look beautiful, ours have been suffering in this hot weather. We go to David Austin roses quite Often as it’s just a few miles away from us, and when we there last time the perfume in the gardens was just fantastic, one of my favourite places to visit. I so envy you being able to enjoy the sun and get aTan ! I suffer from lupus in addition to RA and even using a sunblock I still get covered in rash in the sun, so during this very hot spell I’ve had to stay indoors mostly.
Hope you manage to get some sleep Sylvi and that your pain settles a bit. The dawns breaking here so I’m going to have a potter round the garden before the sun gets going ! Take care, Lynda xx
Beautiful picture Sylvi. Sorry to hear you’re in so much pain. I hope the pain killers worked there magic. I had foot surgery about 14 years ago and I distinctly remember when the anaesthetic wore off having to take pain meds every 4 hours on the dot to keep my pain at a bearable level.
As for my new night owl role, this has gradually got worse over the last few months. Like some of the others who have replied, I too along with my PsA have back problems. I am a chronic back pain sufferer so sleepless nights isn’t a new thing, but I thought with my meds finally sorted I had returned to some normality, when wham the arthritis kicked in. The funny thing is my rheumatologist originally thought I had lupus and then the diagnosis changed 6 months later. However, I still have the majority of the lupus symptoms less the blood markers and this sits over my head as potentially another diagnosis, oh joys! So it was interesting to read that other folks who’ve replied have similar co-morbidities.
I hope it all settles down soon for you and here’s to wishing you a speedy recovery. Keep posting your pics, they are usually very beautiful.
I have been reading all your posts and so many of you are suffering with back pain as i do as well,but with me it has been my foot that is so painful. I am seeing the neuro in August re; my back. I expect to have to have another surgery on it. Blimey girls you really are suffering,i am hoping mine is only the recovery on my surgery,but boy is it sore today and i have another hospital appt, this morning re; my knee. We have to be out by just after 8 for an appt at 9.30am.xxxxx
Hi sylvi , i do hope it will all be worth it when you are back on your feet and in less pain . Look after yourself and enjoy the sun after you come back from the hospital xxx🌸🌸
Hi Sylvi, hope you are feeling a bit better after a night of better sleep. I think I have had 8 hours sleep (if that) in the last 4 days. Every flaming night I’m wandering around! It was lovely to see you mention about you having a husband who is very good to you. I also won the jackpot as Aileen also have a fabulously caring, loving and supportive husband. We married in 2013 it was 2nd time around for both of us and we are very happy. I could not have any children due to my accident, but we have a cute little family of a black & tan dachshund and a small white and tan jack Russell. Dogs are such beautiful loyal creatures and such great company. They always know when I am off colour and having a tough time....
I was wondering if something might still might be wrong in your back. When do you have your follow up appointment, or has it been and gone? Perhaps you should get it checked out as I had several operations that didn’t work.
The weather here has been quite cold and cloudy today. It’s been quite a change and rather miserable. Are you in Norfolk too Sylvi?
Goodnight.
I hope you and everyone on here manage to sleep well. X
I see the consultant on the 4th of next month and yes there is something wrong with my back it has arthritis in it from top to toe as the saying goes. Where abouts in Norfolk do you live as i was born in Ely just across the border and my dh was born in Norfolk,well Kings Lynn to be exact. At the moment i am sleeping fairly well for me,about 5-6hrs.xxxxx
So sorry you are suffering such pain you are always so supportive of others who post on this forum. I don't post very often but read the posts everyday and always enjoy your posts and replies so I am sending you gentle hugs and thank you for the beautiful picture of the rose in your garden xx
They put in a very long lasting pain killer in the operation site it lasts for weeks. Why your in pain is worrying. Ring the hospital to see someone tomorrow please. It may be that the foot has swollen and put too much pressure on the cast. You need to do something really it most definately should not hurt. x
I am not in plaster Medway-lady i have a bandage and the pain i am getting is nerve pain i think as it is like hot needles going through the toes. xxxx
You must ring the hospital as during the operation they normally put in something to kill pain for at lest a couple of weeks. i was in plaster as well I wonder why you hav'nt been. And had a boot as well. This does'nt sound good so please call them today to check the dressig etc. Did they check the woundsbefore you left the ward ? I'm worried this seems so bad.
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