Jackom5 Member Posts: 2
edited 28. Mar 2023, 11:20 in Living with arthritis

Hi all,

New to forum and feel totally lost. I am 34 suffering from Fibromyalgia and AS. I am in extreme amount of pain every day. I do not sleep as I wake with pain. I am awaiting talking therapy to help manage my pains so my doctors have advised this organisation. So here I am, not knowing where to begin or what to say. I just need help! No pain relief seems to help, or prescribed meds, and if they do its for a short time. I've seen a private consultant, physio, osteopath, massage therapy, acupuncture. I just would like to sleep for than 2-3 hours a night without wakening up. If I had rest I would probably be more equipped mentally and physically to deal with this. I do get up and go to work everyday and I am also studying for a degree. Most if not everyday I just want to give up!!!!

Sorry for the pity party


  • Ellen
    Ellen Moderator Posts: 1,485

    Hi @Jackom5 A very warm welcome to the Online community I am very pleased that your Drs have recommended coming here.

    No need to apologise ever for venting this is what a lot of members need to do.

    I see from your post that you have Ankylosing Spondylitis and Fibromyalgia too an it sounds as though you are really struggling with pain particularly it's impact on your sleep.

    You are quite right - getting enough sleep does help you cope with the daytime.

    I hope our members will have some suggestions for you, but in the meantime I am going to add a link for you to read which might be of interest to you.

    I also wondered whether you might like to read the post by @Kizzy87 who also has Ankylosing Spondylitis and posted today/yesterday. You might be able to support one another?

    Best wishes


    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • frogmorton
    frogmorton Member Posts: 29,023

    Nothing worse than not being able to sleep. It actually affects my resting heart rate I can see the difference the occasional good night's sleep makes.

    I hope your talking therapy comes through soon. Odd though it sounds it actually does help a lot of us here.

    In the meantime do keep posting chatting to others helps my mental health and makes me feel more valued.

    You have good Drs to suggest you come here too I must say😊

    Take care

    Toni x

  • Baloo
    Baloo Member Posts: 359

    I've woken up twice since teatime, maybe due to age, but this time I fancy I will brew up a large mug of tea before I go back to bed. It happens all night. I still work, but realise I can't lie in during the week, and if I do I feel a bit too stiff afterwards anyway. At weekends I let my hair down and sleep as much as I need. I'v taken to long weekends off work once a month, maybe sat sun mon tue where I can begin to feel more myself.

    My latest thing I notice that getting into bed and getting out of bed is actually quite a physical strain. It seems to pay to make the process as painless as possible. I stretch a bit, including shoulder physio, and make sure I don't get any arm pain getting up. I think its going to bring my latest flare up down but we shall have to see.

  • Sheelee
    Sheelee Member Posts: 152

    Hi Jackcom5,

    I don't suffer with the same forms of arthritis as yourself, but common to all of us is, of course, pain. Grate isn't it? (No spelling mistakes!!)

    However, I did work as a course tutor at a university, and one thing that doesn't help is stress. It can affect your ability to cope with an, already, massive personal level of difficulty. Nor does stress help with study. It's a well known fact that when under stress, our brains find it far more difficult to absorb facts.

    The last thing you need at the moment is a negative end to your course. Have you spoken to your course tutor about options to manage your course alongside your health issues. Believe you me, there would be nothing unusual for a student to take time out of a course for exactly this type of reason. We had approximately 40 students each year on the course I worked on. On average we had about 20% of students who had to take time out and have an extension to their courses, largely to do with health issues (their own or a loved one) or bereavement. Life unfortunately doesn't stop its negative side because we're on a course, does it?

    Whatever, welcome to the group. There are some very kind, knowledgeable people on this site. I'm recovering from a hip replacement, and really don't know where I would have been without this site.

    Thinking of you 😔 💙

    Sheelee xx