I am struggling to sleep

I am struggling to sleep

I have had my diagnosis changed to PsA until they come up with another thought on what I have and have been placed on cosentyx a couple of months ago. My issue is that all along I have had issues with my back and neck and my GP put it down to bulging discs at times and at other times just said take more pain relief it is the inflammation from disease. The registrar I saw last time just said yeah when I told him how bad my back was becoming and offered nothing. The issue is that for the past few months I have been waking up in agony during the night and have to get up and walk around to relieve the pain. So not getting much sleep. My neck has now joined in and my arms are not only going dead at night now but during the day as well. My left leg has nerve pain running down to the knee and my knee is agony and keeps giving way. I am going back to the GP tomorrow and called rheumatology today in desperation as I am running on empty. I took 15mg of pred last week as I had to fly to another city for a meeting and knew I wouldn't be able to do it without a big boost. It was the first time I have felt good for ages. I have seen a neuro who dismissed me because I wouldn't take anti depressants or lyrica or any of those mind altering drugs as they impact on me so badly and I can't work. So I have no idea what to do next and no one seems to be able to give me any direction apart from up the pain killers. I feel like every night I am waging a war, wandering around the house when I should be sleeping and am so happy when night is over. aghhhhhhh Has anyone else experienced anything like this and what or who were you sent to see?

36 Replies

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  • Hi SOM maybe you need to be referred to a physio if it's your back causing this. I have suffered with lower back pain since March 2016 and was dx with osteoarthritis in my spine. I have lost 2 1/2 inches in height and my spine has compressed. It seems apart from painkillers, exercise is all that's offered to me. Exercises do help, but be before you embark on them you need to see a physio to find the ones that will benefit you. I find the problem in my back really hard to deal with, I can't walk any distance without pain in my buttocks as well. Good luck. X

  • Thank you. I have had back issues most of my adult life but this is very different because resting is no help at all, only getting up and wandering around makes it feel better. Exercise would probably be good but at 3am I think my husband would think I am madder than he already does. hahahah

  • Most people's back pain is unique to them. I can't sit for long periods and I do need to change my position at night frequently. A bad night means a bad day, sleep is so important especially if you have to work. If I do my exercises in the day,it's helps with my night. I would still suggest a physio to see what your problem is and how best to go forward. Some may be down to stress. I have bad posture due to foot fusions. Someone on here suggested a book, Treat You Own Back by Robin McKenzie it's quite an old book and I got a second hand one on Amazon, it's helped me., but then I know what my problem is. Take care. X

  • yes I think I need to know exactly what the issue is. Dr is saying hips due to pain down left leg and groin and also neck. Having xray of hips and CT of neck tomorrow but I got the impression not much can be down. Physio may be able to do some traction on my neck which may help. I guess once I get a picture of what is going on I can go from there. Thanks for your suggestions, I just wish I didn't have to get up in the mornings, life would be so much easier

  • I do really feel for you,, I am retired and I find it hard, so having to work will be very hard. Good luck with your tests and some insight in to what is the cause and maybe a treatment that will help you. All best wishes X

  • I know I have neck issues but it seems they have decided to escalate so hopefully something else will show on the CT scan. I still think it is my back not my hips that are at issue. Oh well I guess I will wait until Sunday when I go back to Dr to find out. Yeah working full time at 58, when I am this tired, is a killer.

  • Please let us know how you get on. Xx

  • Yes I will. It is just so frustrating. I had the xray of my hips and CT of my neck yesterday and go back to Dr on Sunday. I have also told the rheumatology nurse, not that they can do much but at least it will be noted on my file so that I can bring it up and maybe get listened to at my next appt.

  • Just wondering how the results of your tests went. G X

  • Hey I was going to update later. I have trapped nerves in my neck and they suspect the same in my lower back too. I went back to GP and said OK I am ready to try the endep to see if it can take some of the nerve pain away. Oh my heavens, I have been falling asleep at work on and off since starting it. I hope that wears off soon or I will ditch it.

    Rheumatology are supposed to be booking me in for MRis of my neck and back, but I haven't heard back yet so I continue on with dead arms and hands and horrid pain now in both sides of my groin and down my legs, which is making sitting and walking a challenge.

    How are things with you?

  • Oh dear SOM what a nightmare. Some of the back pain sounds like my son's he doesn't however have any inflammatory conditions fortunately. He has been going to a chiropractor to untrap the nerves. Not sue for you though as a harsh treatment. I do hope they sort some treatment out for you soon. All the best. Gentle hugs x

  • Me too it has been a few weeks of this now which is why I agreed to take the endep for now. I am starting to wonder if I have ankyloising spondylitis, or however it is spelled, since the beginning. The more I read about it the more I can see similar symptoms especially now with this going on. I asked about physio but GP said wait for mri to see exactly what is going on especially in my neck as it could do more damage. Going to the hairdressers on Saturday and I am feeling rather scared of how my neck will deal with it eeeekk. Wish I could face the other way at the basin so I am not leaning back.

    Hope your son gets some relief, I have had numerous back issues since this started, it is getting very old

  • It could be, I'm not that gened up on the condition, so hopefully you will get the chance to discuss this soon. No one knows more that you what a waiting game this is. My son is doing better thx, it's an ongoing problem for him, his job is very physical. I get relief from bending my spine backwards, my son finds this soo painfull. Hope it's not too painful for you to have your hair done. I was given Brutan patches, so far haven't used them, had a bad reaction to Zolendrenate infusions and recently had an infection in my big toe and the antibiotic's have completely upset my stomach. Lol. All the very best to you. X

  • Oh no good if his job contributes to the back issue, he is not going to get a break. Going to be tough as he gets older. I had never heard of those drugs I had to look them up. Butrans sounds very heavy duty. I am on tramadol but I think I need to wean off it while I take the endep as the interaction can be fatal. I need to talk to a Dr but can;t get a response from reheumy so may go back to gp.

    Hope your infection clears up quickly and you can get off the antibiotics. I have very few I can take that don;t have a very bad reaction so I can commiserate with you there.

  • My heart goes out to you SOM. Losing sleep because of pain is a killer and I really hope you can find relief very soon. Huge hugs

    Jan

  • Thanks Jan.I am falling asleep at work again so it's not a good look. hahahah

  • I'll bet you look better than most! Just keep the snoring down, eh?

    J

  • No snoring I have a cpap now, but yes I am terrified I will snore at work. hahahaha

  • Can you all your GP for a prescription of Amitriptyline? It works as a type of pain relief but also has a sedative effect. It was a god send for me last year when I couldn't sleep because of the pain.

    I like to sleep in the "recovery position" and so sleep cuddling a pillow which is long enough to support my upper body and also to rest my top leg on. I feel that gives my spine good support and stops me from twisting my spine whilst I'm sleeping. Make sure your pillows are a good height for your sleeping position too. You can buy them specifically for side sleepers/back sleepers/front sleepers. I really hope you get some relief soon. There's nothing worse than sleep deprivation! x

  • Thank you. I don't do well on mind altering drugs that also put on weight, but in desperation I may have to try it. Screw the weight gain, I will take to wearing mu mus. I am supposed to sleep on my back due to my neck and I also have a cpap, but that adds to the problem for my back. If I could sleep standing up I would as that is the position that doesn't make me ache. I have a really good pillow for my neck as it is a problem too, between them I am struggling at the moment.

  • How's about a recliner chair? Would that help support your neck, back etc and give you some chance of sleep or have you already tried that? It's a b*ggeration isn't it?

    J

  • That sounds awful. Poor you. Hope you manage to get some sleep soon. x

  • Me too. I don't sleep a lot anyway at night, but this has curtailed the few hours I get by even more.

  • Have you tried putting a pillow under your knees? I find that is the only way I can lie on my back.

  • Yes I have tried that it is a good trick for relieving the pressure on your lower back. I have to lie on my back because I have a cpap, it tends to leak air if I roll on my side and then my arms go to sleep too! hahahah

  • Hi ,

    Have you ever considered CBD oil.? I am taking it prior to bed ......and I have not slept this well , for a long time !!!

    It is worth reading /researching it , and deciding for yourself if you would use it .

    Take care , and I really hope you find some relief soon

    Xx

  • Hi Strayleaves. do you take the CBD oil internally by mouth or apply it to the body ? thanks Mo.

  • Hi Alone 717 ,

    yes I take it by mouth . I have heard of it being used externally , however I haven't tried that ...

    Thanks

    Karen

  • Wish I could. I have thought about taking up cannabis, at least it doesn't have all the side effects that synthetic drugs have. Not sure it is available where I am yet though.

  • Hi Someonesmother ,

    I see you are from Aus. I live near Newcastle , NSW. I take cold extract in oil , at night, as my anti inflammatory. I also take several drops at night, of activated tincture ( as anti inflammatory but also for its benefits of containing small amount of THC.).

    I was having trouble sleeping , however I may not have been as bad as you by the sounds of it. I just couldn't get comfy , no matter how I lay .....if it wasn't my shoulders paining, it was my hands and feet . I wasn't in extreme pain ,like I get when I was in a flare, just very uncomfortable.

    I have RD (seropositive) , on Enbrel and methotrexate 20mg, RD not controlled yet. I don't take any NSAIDS , prednisone , or analgesia. 👍 . I have used paracetamol , voltaren, endone etc , in the past , Soi will use them if I have to .

    It may very well be something you could consider researching. There is quite a lot of research as to its benefits , for a variety of medical conditions.

    I hope you get some good sleep soon !!

    Karen x

  • Yes I live in the ACT and I think they are going to trial it for cancer patients, too bad about us! Not sure I could use it though if I got pulled up and was drug tested I would be in a world of trouble. It is a great relaxant though and I wish they would legalise it so that people with chronic disease could use it instead of all the synthetic crap we are given to take.

  • Hi,

    Just for balance... I ordered and took CBD oil following the conversation about it on this site. It's done nothing for me- except leave my bank balance a bit lighter! Funny how all of these amazing 'cures' are always so expensive. ( Sorry- feeling bitter!)

  • Hi LizzieR ,

    I don't blame you being a little bitter , with no result from your CBD oil.

    I don't know how long you were on it for , but ,being plant based , it's not a quick fix antinflammatory.....

    Was your oil activated ( ie with activated THC) . I am taking activated and non activated . Most of the articles I've read don't say it's a "cure" , but rather it works with our own endocanabinoid body system.

    From my perspective .....I'm a 50 'plus' year young , registered nurse/midwife , who has devoted her life to helping others (sorry if that sounds a bit 'corny', or whatever.....but it's true) , I presently work in "pain management" in aged care.

    I looked after my father at our home , who passed away three years ago from metastatic melanoma.I looked after after my mum ( until she went into care ) as she suffered terribly with an infected knee replaced joint , then developed septicaemia .mum passed away 19 months ago.. I really wished I knew then what I know now , about medicinal cannabis......I would of definitely sourced some , to help them.

    Sorry to rattle on ......just that I have often wrote about CBD oil ......only because I see it's value , for many people ......and I do think it is a very underestimated medicinal herb.

    I do hope you are relatively pain free , as much as possible, and comfortable....... It's a very cruel disease !!!

    Take care

    Karen x

  • Hi Karen,

    Thank you for your thoughtful reply. I suppose I did sound a little bitter- sorry! I just feel that there are so many things that we are told will help and each time hopes etc are raised, only to be let down again. It can, for some, turn into a roller coaster of hope and feeling down, desperate etc. I prefer to live my life as I am. I am in a lot of pain- I'm never without it and I can get into a cycle of being desperate, trying things and so on on a kind of hamster wheel. So acceptance is the key for me. I feel I gave in again and bought some CBD. I got the purple and blue capsules from CBD brothers. I take 2 blue in the morning and two purple at night. So far I have felt nothing different, but I will keep going at least until I've finished this lot.

    I'm sure it works for some people- but potentially not for all.

    I'm sorry to hear about all the trouble and pain your parents went through.

    Liz x

  • Hi Liz ,

    Great name by the way ( my middle name is Elizabeth) .....😀

    Hey ...no need to apologise. This pathetic disease is just outright cruel ...... I totally get that you will try anything when you are constantly in pain ..... I'm lucky in that I am not in the severe and debilitating pain like I was when I was first diagnosed . BUT , excuse the language , but I am s..t scared that it will return .......and I don't think I am that brave to think I will be able to handle it ...... mind you , I am seropositive , and I can feel it in most of my joints .....and I can feel that the methotrexate and Enbrel are just keeping things 'at bay' ......... I still do get pain , but it's bearable ....

    And you are right , there is so much info out there , it can be very disheartening when you think you've come across something that is going to help ....and it turns out to be another fake "cure" , remedy etc .

    I have heard of the CBD brothers , but I don't know anything about their products. Are you able to contact them and ask more about their products.?

    Whatever you decide , I really hope you find some sort of relief from your pain .

    Thanks for the words re my parents .....they were good people.....

    Take care

    Karen xx

  • Thanks Karen. Take care,

    Liz x

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