Scared to sleep

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I have only recently been diagnosed with AS. For a few months before diagnosis I couldn't sleep for more than 3-4 hrs without waking up in pain.

I have since started Humira every 10days for 2 months then every 14 days continually. Now thank god I am not having pain at night or back pain in the morning.

But I as still stuck in this habit of staying up all night afraid the pain will come back.

I am taking sleeping tablets but my body is still fighting sleep even with these. My body making me wake up every hour. Any advice out there?

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  • Posted

    Hi Amanda...you "hit the nail on the head".....yes I had that too. Afraid to sleep, you describe it well. Actually mine started after a break in...when the man came into my room and we were face to face....every little sound wakes me now....and I can't sleep " just in case"...In this case it may be PTSD...but maybe we can get that too when extreme pain wakes us...afraid to sleep just in case eh. I wonder if there is a connection. It's the same feeling, The body is an extension of the mind

    and vice versa. I am slowly getting over the trauma since I got a Rottweiler dog and feel safer. I think we may need to feel safer from pain..Take your sleeping tablets a little earlier with dinner perhaps..or ask your doctor what he/she suggests. Keep me posted here and we can help each other through this...Hugs to you..G

     

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    • Posted

      Dear Gloria.

      Sorry to hear your terrible experience. I'm so glad you got a gorgeous puppy to protect and comfort you. Yes I agree that these terrible experiences can cause PTSD. I was a real mess a few weeks ago. I work full time and have 3 kids. I honestly don't know how I was managing! I am very lucky as I also have a very supportive husband who helps out a lot. He is very understanding of my disease and pains and does all he can. I am a lot better now. I feel like a whole different person. I never realised how much pain I actually had until it went away!

      I hope you find comfort and feel secure now. Do you have your dog in your room with you? I would ??

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    • Posted

      So glad you are feeling better. I'm a 70 year old great grandmother and have an adopted teenage daughter who has been with me since birth....We live alone...so there are challenges. My Rotty dog Rhani does not sleep with me...coz she is still a bit naughty at night...would rather pee inside than out...But she is only a few steps away from us on the veranda....she would kill if somebody got in here now. We often test her with people she doesn't know...and wow is she ferocious...phew. We have to put her on the leash...if she meets new people. Anyway...keep on managing your illness...we are all in the same boat...so glad you have some help...give your husband a pat on the back from me....Hugs..G

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  • Posted

    I'm so overwhelmed knowing other people out there are going through what I'm going through and no one deserves such. Last year I was dealing with such worse pains that wouldn't let me sleep or if I'm asleep would wake me up with sharp stabbing pains and would make me cry and when I took painkiller it wouldn't work even a bit. Ended up I was diagnosed with HLAB27 and AS. But yet the doc gave me muscle relaxants and painkiller and left me there dying. I visited other doc and he gave me sulfazaline and I took for 3 months and I got back for check up after 6 months and my crp has gone to 30 from 16 in 6 months and now I have severe pains back in my life. It gets worse when I cough and painkillers are slowly stopping to work on me. The doctor I visited was mad coz I was always given wrong treatments and now he has suggested me final treatment which is enbrel and humira. Which I'm scared to take coz of its side effects. I'm 21 as yet and it's a very huge step to take for me coz of the life threatening effects. It makes me depressed and so stressed. And also as you I kinda get trouble in sleeping but I'm not taking any tablets to support sleep all I do is think about something good and positive and try to sleep and it actually works for me and I end up sleeping. I hope this tip helps you. Please let me know if there's anything I can help you with. I wanna support everyone I can coz I know how it feels to be in pain with such disease. Much love x

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    • Posted

      The anti TFN drugs have really saved my life. I feel like a human again! For me the risks of the medication did not outway the benefits so no regrets. Give the medicine a chance and see how you go. Good luck. You are way too young to be suffering like this. I am 39 and I wish I'd had the treatment 10 yrs ago.

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    • Posted

      Hey love.

      Thanks a lot for replying.

      I have my follow up tomorrow and I think my treatment will start tomorrow I'm gonna be doing it. I don't care about side effects right now as this pain is driving me crazy. And can I know how long have you been taking the medication?

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    • Posted

      I have only had 2 doses of Humira so far. I will take it every 10 days for 2 months then every 2 weeks there after. I have had all my painful joints injected with cortisone which has relieved the pain. Now I just have to wait and see what happens. The only thing I know has definitely changed is the agonising lower back pain I woke up with every day is now gone. Just like that! I can just get out of bed like a normal person. Now for the other joint problems I will have to wait and see if it comes back or not. I never got help for the back pain because it always went away after I got moving around. It was the other problems that caused me to seek help cause the pain from them were crippling me. My elbow were so sore I couldn't even move my fingers without severe pain. Then the SIJ ! OMG. And the hip bursitis😳

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  • Posted

    Hi Amanda. Some nights are better than others for me. I wake up exactly the same tho every day. In pain and very stiff until I get myself moving. Maybe you could try Amiltriptalene which works as a muscle relaxant it does help me well most of the time anyway. My rheumatologist won't prescribe me anti tnf as he says I don't have inflammation in my hips. What about all the other joints tho that I can hardly move and the pain that I have suffered for the last 30 years. Think I need a change of doctor. Back to you it might take a bit of will power for you to change the way you think about sleep. Your brain is programmed just now to make you frightened to sleep because you are going to be in pain. If you can overcome this somehow by reading or listening to music just before bed it might change your thought patterns. Hope you feel better soon.

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    • Posted

      Hi Gillian.

      I am sorry hear you are also suffering so much. Do you get any pain in your sacroiliac joints? Have you had any X-rays or bone scans? It took years for my SIJ pain to show up on an X-ray as sacroiliitis. I also suffered from severe tennis elbow and planter fasciitis. I've had this for around 20yrs but the flairs were only a few times a year that would last several weeks. But I have had morning back pain and stiffness for 20 years. The last 2 yrs have been the worst. Waking up to bilateral tennis elbow without knowing how I did it! It wasn't until I had severe SIJ and right leg bursitis pain that I could hardly walk that I was finally referred to a rheumatologist. Other doctors just always fobbed me off as having fibromyalgia and drug seeking behaviour. I went to a pain clinic and had cortisone injections in both elbows, hip and SIJ. Finally the pain has eased. But I know that cortisone will only mask the pain for a few months. But now that I'm taking Humira I am praying that it will prevent these things to flair up again.

      I can't believe your doctor is letting you suffer like this. Did u have any cortisone injections for pain? If it wasn't for me starting this medication and also getting good pain relief I would probably be in a wheelchair now. I was also given Percocet and tramadol to help with the pain while the cortisone kicks in.

      As for sleep, I am heaps better now. I relax before bed. Get my heat bag. I bought a memory foam mattress, I take my pain killers and when I'm relaxed I pop my sleeping pill! So far so good. My fear of bed and sleep is slowly disappearing. Thank you for your post and good luck to you ??

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    • Posted

      Hi girls...here I am at 1.27 a.m. in pain coz I went out in the car today...and did a little shopping too with the help of my daughter..But now I'm paying for it with so much pain from my shoulders down my arms from wheeling myself in the wheelchair...and my legs are painful too as are the hips from sitting in the car. So I dragged myself to the kitchen, made a cuppa and took a Tramadol and half a 5 m.g. diazepam with a large dose of hope that I can sleep when they take effect. I have found that if I get up and do something..like typing this to you...my mind will ease and the pain will lessen. Fingers crossed this will work and I can get to sleep...try it..it might work for you too. And I agree about the Amitriptyline...it has been good for me apart from when I try to do too much. It's so hard to accept our limitations...but we have to in order to live some sort of happy life. Hugs to you...G

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    • Posted

      Hi Amanda. Sounds as If we're in the same boat. I've had bone scans and xrays two MRI scans which have all said yes you have AS but no help with the pains. I've stopped going to my GP having to explain each time about my problems. I've suffered like you with plantar faciitis severe sciatica but worst of all now are my neck shoulders and my fingers which look like sausages. Struggling to even hang some washing out or write a note. Last week I visited a chiropractor for an assessment to see if he can help. So many people are struggling with this unrelenting condition and yet it seems that we're no further forward. The one thing that does help me is warmth. I spent 2 weeks in Australia last year and I felt like a new woman. I was more active in the nice weather even the long journey was manageable. We're planning another trip to Perth this Christmas. I just worry about getting old and how I'm going to cope and don't want to spend my old age looking at the ground as an old neighbour of mine did. I really hope humira works for you.

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    • Posted

      Hi Gloria I understand how you feel. I convince myself that I can still carry shopping do a bit of housework. But forget that I'm likely to feel the after effects for days afterwards. I've just struggled to hang some washing out and my wrists and fingers are in agony. I agree with you it's very difficult to accept your limitations especially if you've always been independent. I don't like asking for help. I am still working part time only just mind as I arrive back home in agony. All we can do is keep going and stay positive.

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    • Posted

      Gillian please find another doctor. If your scans and MRI all say AS then you are entitled to an anti TFN medication. My rheumatologist couldn't believe why I didn't come to him sooner!! Well if the other doctor actually listened instead of fobbing me off as a drug seeker then I would have treatment sooner!! Pls I hope u get the right care soon I'm worried for u now. What country do you live in?

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    • Posted

      Hiya...yes it affects us for several days after "doing too much"...but...how do we find out what "too much" is unless we try...it never ends. I'm up again at 3 a.m....took another tramadol...The worst feeling of all is my daughter is afraid to cuddle me....we both need hugs...and I'm so sore...I,m scared she will touch a sore bit....phew.

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    • Posted

      Is it difficult to get the medication in Bali? Does it need to be approved first like in the USA? I'm very lucky that here in Saudi Arabia my medical coverage covers 100% of everything but only at the hospital I already work in. It's part of the expat package to work here. And if my rheumatologist prescribes it I get it. Mind you I was very close to being in a wheel chair at 39 yrs of age that or ending my life. Other dr I was seeing in the general GP clinic had me thinking I was insane!!

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    • Posted

      We cant get what others can in the "West" but I am OKish with the meds I am on...but I have to pay so much every month as no insurance or benefits or pensions.....so it is financially difficult. Just to see my Neurologist is 200.000rp ( $20 ) per visit...so I rarely see her but communicate by phone or email. We don't have a rhuematologist within 4 hours of where I live...so that's out too. To get another MRI costs $1000...!!!

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    • Posted

      Dear Gloria

      You are in a difficult situation. This disease is so expensive to treat. I'm so sorry for you. You said you had had an MRI in the past and bone scans. Did they see sacroiliitis? Are any of your spines fused? Did you ever get methotrexate? Just trying to work out why they never offered you anti TFN. Is it because it can't be offered at all there or the dr just decided not to give it to u?

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    • Posted

      Hi Amanda I'm in the UK. I feel now after six years of seeing this doctor that either he doesn't really believe me or he specialises more in the rheumatoid patient and there's a big difference. I'm not going back to him. I'll get referred to another hospital that has a large musculo skeletal department. Be another few months down the line but I feel like I've been treat unfairly by him. He must've used up his budget. Does the warmer climate help you at all. It seems to help me when I'm on holiday or is it psychological. So pleased you can get the meds you need through the hospital. Fingers crossed it works.

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    • Posted

      Such a hard slog isn't it Gloria. And very expensive for you. Obviously here in the UK it comes down to budgets and I think that's the main reason that my particular hospital won't let me try anti tnf. Time to see another doctor I think. Overdid it at work last night and now I'm paying the price today. Hoping your day is an ok one.

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    • Posted

      THe warm weather in Saudi does help me. But this winter has been terrible for it. Don't know if it's because I am at my worst or if the cold made it feel worse. Definitely the cold really makes my bones ache. And my feet if they are cold they are so painful. Especially the toes. And they won't warm up unless I apply direct heat to them.

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    • Posted

      Hey girls. I pray for you all to get better. You all are in my thoughts. Best wishes to you all. Thanks a lot for your all support and thoughts and advices. I'm leaving India today. I haven't started my treatment as yet. I will start it there. For now I got some vaccines and tb prevention medicines just to be on safe side. Thanks a lot. I'll keep you updated on this. Best wishes. I really hope the best for us all.

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