Pain

I'm struggling with pains. Mostly head and stomach pains which are getting worse by each day. They bring with them a feeling of utter lousiness and it’s just ugh I don’t know how much more I can take. I’m all for living life and waiting for things to get better but I believe this is part of my asd and actually may never get better and that is an alarming thought for me. I can’t live life in pain and discomfort not forever. I’ve been having distressing and negative thoughts for a while and have also considered not living for much longer like planning things out. I love my family and I love life but I don’t see the point in being here if I’m unable to enjoy life and currently, the pain and discomfort is making life unpleasant for me and my loved ones. My mood is all over the place. I’m not able to keep it in check and have outburst because of the pain.

I work in a hospital and have seen people die before and I feel envious of those people. The dying process can be unpleasant but the actual dying bit is like switching off a light. At times I dream of that happening for me because there would be no more pain, just peace and bliss. It’s wrong to think this I know but really the pain and feelings I go through every day are getting unbearable and no one seems to be able to or want to help. I've had the pains for the last ten years and now they are so much worse they are making me feel really bad most days.

I don’t see myself being here much longer but I thought I would try this place as you guys are all likely to have experienced this or similar I hope.

  • Hi 7584 (can't you choose a nickname - so much friendlier :-) ) .. I gave a reply to a similar question on the thread with this title: "Rewinding all conversations and feeling guilty"  in "Autistic Adults" - so its the book called "I'm OK .. you're OK" .. reading it was fundamental to my progress to being comfy with ASD/AS and now I can more-or-less function happily (and potentially invisibly) in the NT world .. 

  • Very best of luck to you!  Do let us know what happens.

  • Hi, thanks for the list of tips, this is really helpful and I’ve noted them all down. At appointments I usually go very quiet and find that I’ve lost my voice until after the appointment. Writing down about my pains might be the best thing for me to do here and see if that will help. Things are starting moving here again now so I should be able to get a gp appointment sooner rather than later.

    Pain has been extremely bad since yesterday. Yesterday it was unbearable at times, so bad that I couldn’t actually move and spent most of the day in bed just waiting for it to subside. I was in tears at one time and was near a point where I thought of calling 999, but luckily it never came to that. Today it’s bad but not as bad as yesterday. Right now it’s just an ache of pain which keeps shifting all over my body. My head is quite painful as well but I didn’t sleep well so I think its lack of sleep causing the headache. Worst of all, I have to get some food in today but I’m not feeling too great, I’ve been feeling very faint for the last few days and I don’t want to pass out in front of a shop full of people, so I have that to worry about. I’m going to leave it a bit and hope that the pain and feelings of unwell ease before I head out.

  • Thank you so much, that's lovely to hear!  I decided to make notes of all the ideas I could think of on a bit of paper and make a proper job of it.  I'm lucky to have very resourceful parents, and I like to think I've inherited it - so it's only right someone should get the benefit of all we've learnt over the years about that, instead of, as you say, everyone having to find it out for themselves and take however long!

    Is there anything else you've noticed helps?  I don't know if AutisticPerson's still here but collecting our hard-won experience might be useful to other people here.  Not everything'll apply to everyone of course, but all the more reason for more than one person to join in as there might be something that doesn't work for me but does work for many others.

  • Oh this is so very good .. so many *really* good suggestions .. wish I'd had some of this knowledge back when I was trying not to panic everytime I saw a GP .. golly I'd break out in a cold sweat and not remember anything that was said during the appointment .. I wish I'd recorded each meeting so I could play it back afterwards .. I can cope ok now but it's taken literally decades to get here ..

  • 1) If at all possible, write.  I think this is the key.  Have you tried that?  I always do that myself.  Explain to your GP in the letter that you're not good at talking on the phone due to your autism which is why you're doing it in this unusual way.  If she remembers what happened last time then she'll probably be pleased you did do it this way! 

    Even if she wants to speak to you at first hand afterwards, if you can manage to write her a letter first, getting as many of the facts over as possible, then you can be sure of giving her those facts at least.  Hopefully if it's clear from the letter that something is seriously wrong, your GP will be worried enough that she'll be prepared to take a bit of trouble listening to you, instead of brushing you off thinking you're wasting her time. 

    I have problems with talking to people in person or on the phone too, although possibly for different reasons, and my parents and I have always found that writing to any medical practitioners ahead of appointments, from GPs to specialists to blood-test nurses, is absolutely essential.  First, to tell them as many of the basic facts as we can think of to cut down what we need to get through at the time, and second, to explain about my problems talking to them and warn them to take it slowly.

    If you like, I could check the letter for you, or even write it for you if you send me scribbled notes.  I've had a lot of practice over the years at writing doctor letters about complicated things, and I'm told I'm pretty good at getting things across both clearly and politely.

    2) Tell them in advance what your difficulty is with talking to people.  The one rule my mum always tries to impress on all professionals when she writes to them ahead of the appointment is "She can't sort herself out while people are talking, so if she starts to get into a state, or if she asks you to, stop talking completely for a minute until she sorts herself out.  Don't try to jolly her along, that or anything else you say at that point will make things worse, just stop talking.  This is important, if you remember nothing else remember that".  This has saved our bacon more times than I care to count. 

    Might that be a thing for you, too?  If what you have is the autistic person's usual problem of just-too-many-words-at-once-can't-think, that would apply.  The other thing you could say to them is "don't go too fast".

    When I say I have "problems" with talking to people in person or on the phone, I mean there've been phases when if things went too badly wrong I would fall to the ground screaming uncontrollably.  So if with these precautions I can manage to successfully see a GP and get medical attention, so can you.  

    3) Bring lots of notes.  Did you have plenty of notes with you last time you tried to speak to the GP?  If you have to speak to anyone in person or on the phone at any point, make sure you have plenty of notes.  Ones you can pretty much read out from, not ones that require coherent thought!  In fact, what I do is write a sort of script, listing the points I need to get across, numbered.  Then I can check the list as I go and do my best not to ring off until I've told the doctor all of them.  My mum does this for complicated phone calls and says it makes the world of difference and she's not even on the spectrum.

    4) PALS.  Don't know if you've tried PALS (Patient Advice and Liaison Service).  They're supposed to provide help if patients are having trouble negotiating the medical system in any way, and they're pretty good, they've been useful to us a couple of times.  They might have something to offer.  https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

    5) Is there anyone who can go with you?  In this case I suppose they'd have to be in the room with you and use the speakerphone function, or do a conference call.  You know, someone who doesn't lose their head as easily when talking to people and can step in and explain or stall them if you can't keep up.  I expect you've thought of that though.

    6) Is it a group practice?  In that case, you could ask to see a different GP?  Probably it isn't or you'd have thought of that, but I thought I'd ask.

    Hope any of this is some use to you.  Please do see somebody about it, if you can find a way to get your point across to them at all.  It might be hard work but if it's worth topping yourself over, it's worth enduring a hairy GP appointment over.

  • Hmmm, I see.  That is a complication. I can think of a few possible answers, though.  I'm going to think about it some more and get back to you tomorrow.  Over the years I've picked up quite a lot about alternative ways round the medical system!

    That's if you don't mind, of course.  Hope you don't mind me reeling off instructions like this as if it was any of my business when I'm a total stranger who only even joined the forum last week?  But presumably you posting that message in the first place means you want help?

    DON'T PANIC.  Glad you've been feeling a bit better this evening, you sound like you really needed a break.

  • The pain has been bad today, but eased up this evening so now I’m just relaxing to some music. The bad thoughts are still with me but I’m trying to be as positive. I’ve been thinking about things which might help me with the pain, relaxing to gentle music helps but I’m wondering if I should start eating breakfast as well? I used to eat breakfast but I stopped in the end, eating often results in me feeling bloated and sick, and this feeling lasts to the next day as well so I stopped that. The pain is really getting to me now. It’s always there, like an itch that won’t go away or get any better. I’m also tired, so tired that I feel like I could fall asleep at any moment, I’m feeling so bad. It’s horrible. It maybe could be a migraine or something related. My sister, she suffers from migraines a lot, and she’s also Autistic though we’re not that close anymore. I really want to call my gp or the 111 number but I’m scared of what will happen or what I’ll say. I’m not good talking to people about things like my health, especially if they turn nasty towards me which has happened before. Just don’t know what to do anymore, feel lousy and in pain all day long and waking up in the middle of the night in pain can be annoying as well as afterward I don’t feel well. I’m tired and want to sleep forever, it’s getting harder to get through each day now. Life is agony and I feel like my body is starting to give up on me, physically and mentally. Mentally my life is shutting down or that’s what it feels like. As I said before I don’t think I’ll be around for much longer, this is hard to live with and I feel like there’s no one who can help me. The trouble is, as I found out with my gp last time, they didn’t understand Autism so weren’t very helpful and turned quite nasty at one point which put me off.

  • Hi, You should see a doctor, being in so much pain all the time and feeling suicidal isn't a good place to be for anybody so get in touch with your doctor or phone 111 for advice. I hope you feel better soon.

  • I've just had a thought.  Could it be a type of migraine? 

    What you say about the pains being accompanied by "a feeling of utter lousiness" reminds me very much of my own migraine attacks.  They seem to make me feel, in some unidentifiable way, much more awful than the amount of pain would warrant.  And my GP said that it can involve stomach aches as well as headaches - in children stomach aches are sometimes the only symptom, and the NHS website confirms that it does occur in adults too.  Having them every day is uncommon (mercifully), but again it does happen

    I think you should ask your doctor about that, in case it doesn't occur to her.  If it is in fact migraines, they're a bit tricky to treat but they often can be treated successfully, or at least reduced a lot.  

    Here's a link to the official NHS patient information page about migraines: https://www.nhs.uk/conditions/migraine/  And if you click on "Symptoms" and scroll down a little way to "Additional symptoms" you'll see the bit about abdominal pain.  It would be wise to print that off and have it with you when you speak to your GP, or send her the link, in case she doesn't know abdominal pain is a possible symptom and doesn't want to consider it.  It'd prove that it's genuine, and anyway I always forget what I'm talking about when trying to explain things to a doctor in a hurry, so having notes is invaluable.

    There's also a couple of UK charities who'll give advice if you contact them: https://www.nationalmigrainecentre.org.uk/ and https://www.migrainetrust.org/ .

    I hope this helps.

  • I am sorry, that sounds horrible.  I hope you get to speak to the doctor quickly.  Try and do something nice until then like read a funny book, if there's anything you can even partly concentrate on in that state.

    Your GP has no business to be angry with you, you've done nothing wrong.  If you think that this particular GP is likely to be angry with you about it, then that stinks and I can only say don't take it personally because she's the one in the wrong in that case and you don't deserve it.  But if she's any good, then she won't be.  It's exactly her job to help out people with problems like yours.

    If it's talking to people as opposed to writing that bothers you, then do yourself a favour and write or e-mail, do it the way you're best at.  Don't put yourself through phoning just because you think you should be able to manage a phone call.  I nearly always write to my GP myself rather than phone if I can.  (And, having been through phone calls with me before, she's only too glad I do!)

    By the way, the horrid symptoms you're describing are absolutely not something most people with autism go through, this must be something extra, so it might well be something that can be cured.  Chin up, tomorrow may not be like today!  (Or, well, next week or whenever, you know what I mean.)  Let us know what happens.

  • Thanks for the message, hope you find more positive energy.

  • Thank you for the good energy.

  • Hi Chloe,

    Thanks for the suggestions and numbers. I’m hoping I’ll be strong enough to call or email someone tomorrow. The pain is so bad at the moment and my mind is a whirlwind of anxiety and discomfort. Sleeping isn’t good either, I keep waking up feeling dizzy and hot in the middle of the night and then in the morning it’s pain and darkness all day. The bad thoughts are with me all the time. I’m really struggling with it all and I don’t know what to do about it. I want to phone my gp but I’m scared and don’t want her to be angry with me, and I don’t know what I would say. I’m not good at speaking with people. I find it hard finding what to say. I do want to get better again but I don’t know how to get there or make it happen.

  • Hello Former Member,

    I’m really sorry you are going through such a tough time with your health. it’s good that you’ve let us know how you feel. Many people have similar thoughts and we hope you’re okay. 

    If you find you are unable to cope, it’s very important to tell someone about your feelings or thoughts of suicide. Call your GP and make an urgent appointment. Your GP can make sure you get appropriate help and support.

    If it’s outside your GP hours call  111  to reach the NHS 111 service:   http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx 

    The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on jo@samaritans.org.

    MIND have information pages on coping with suicidal feelings based on the experiences of people who’ve been through it that you may find helpful. 

     
    If you need help with an autism related issue, our helpline can be emailed via webform https://www.autism.org.uk/services/helplines/main/questions.aspx or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.

    ChloeMod.

  • I’m sorry to hear you are in pain

    inhave a chronic condition which means I’m in constant pain all the time so can sympathise. I know what you mean about thoughts of ending things as it sometimes feels like what’s the point if this is what I have to put up with. I know I should say at this point make sure you speak to somebody, life’s good etc but im not an overly positive person - sorry/

    I do though think it is worth speaking to your dr and explaing how you feel. Hopefully they will sort the pain out and without the pain things will seem brighter. If it turns out you won’t ever be free ask about ways to cope. Also remember people non here  do care and if you need to talk there are plenty who will listen 

  • Hi .. sounds like a conversation with your GP about how you're feeling would be a really really good idea .. ideally as soon as you can .. it's not good to be near the edge of what you can tolerate .. sending good energy your way ..