I'm in so much pain

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I feel like I'm dying. I'm sick of these diseases.

I'm not sure I understand where you are coming from. Are you sick? Or you just feel emotionally hurt?

I have three autoimmune diseases.

Physical pain.

This might seem like a radical approach, but how often do you keep your mind on the pain and how much time do you spend focusing on things that make you happy?

That's always the first thing people say. If I get to to the point where I actually verbalize ( or write down ) my pain, it means I am in excruciatingly severe pain. I manage day to day quite well with optimism and determination.

to the OP: one of the universal laws, is that which we dwell upon is amplified, and this works a thousand times more strongly in the negative direction. i can't claim any knowledge of your autoimmune illnesses or the types of pain they generate, but i've found that if i force myself to go outside and briskly walk in the sunshine even if i feel like crap, that at the end of the walk i invariably feel better. for more localized aches and pains, there are pressure points on the earlobes, the webbing between thumb and forefinger as well as at the base of the nose, that if firmly palpated with thumb and/or fingertip, will reduce the pain. the typical human mind can only hold one discrete thought in working memory at any given time, and if you are hurting, it is possible to distract oneself from said hurting by forcing the mind to switch thoughts to something else, ANYTHING else. i have arthritis and other ills and that is how i get through the day.

Last edited by auntblabby on 23 Mar 2013, 12:03 am, edited 1 time in total.

I too suffer lots of physical pain. My joints pop out of place by simply bending.. opening cupboards and such. My muscles are also micro clenching always from nerve damage... so I have the nick name "she hulk" because I have so much muscle. But it is severely painful... but my point here is that using your special interest... movies... games.. to engage the mind elsewhere helps tons... Not perfectly but enough to get by.

Pain is very depressing and domineering.. find something to take your focus... it really helps.

Why does everyone assume that, just because I made a post here, all I think about is my pain? I tried to point out that I normally don't think about it and am quite optimistic, but that post somehow got ignored. I've lived with these diseases for 19 years and have done quite well, thank you. I'm working full time right now and am the most cheerful and bright person in my office of 150 employees.

Why can't I express myself every now and then without being told, "Don't focus on the paaaaaain!"

This is one reason why I put on a stoic face and rarely tell anyone about my illnesses. It's hurtful and insulting. It minimizes all the good I do every single day.

I know you were trying to help, and thank you for that.

For you to post your last post after the original post was -

That is exactly why you have gotten the responses you have. Don't bite the hand trying to feed you. I am bowing out and ignore any future posts by you. Don't post if you can't handle the responses.

Feel free to ignore me, that's your right.

I also have a right to express my frustration and to explain that I've already done what the above posts have suggested (since no one sees me on a day to day basis). Who said I couldn't "handle the responses"? I even said thank you for the advice. I think it's better than just accepting whatever was written and just giving up on the post because I felt even more isolated. I feel that if more people with chronic illnesses were honest about how they feel, people would think more deeply about it and maybe be able to sympathize. Some of us have pain that is beyond switching focus and I'm trying to express that. I wouldn't have said "I feel like I'm dying" if it were less severe. I'm trying to be honest and convey what I'm feeling so that I can somehow bring other people into my world and feel what I'm feeling for a second, so they can understand. It's much better than just mumbling, "Okay..thanks...." Then what would be the point? I'd rather have an exchange, rather than, "You came here for advice and we gave it to you - how DARE you not like our advice!!"

Just because you give an opinion or advice doesn't mean that the receiver has to accept it or like it. If you have that expectation, then you weren't really doing it selflessly. If I give advice someone doesn't like, I think, "Well I tried and I guess I don't understand the situation well enough" or something similar. I don't get upset about it. Most people think of advice as a ask-and-receive dialogue, rather than a dynamic exchange and I don't.

Yes, I said I feel like I am dying. That's how BADLY I hurt right now. You might not understand if you haven't gone through something like this. It's bad enough where I felt like making a public statement about it on a forum.

But thank you again for sharing your situation with me and giving advice. As I said before, I do appreciate that.

I'm sorry that what I said offended you.

Okay, firstly thanks for the responses. I didn't mean to hurt anyone's feelings and I'm sorry if I did so.

Now, I will make a better attempt at what I want to say:

Right now I am having severe pain all over my body, inside and out. It's beyond what I normally experience and can handle using meditation, positive thinking, moving around, hydrotherapy, stretching, diversion, etc, - all of the normal coping mechanisms have been exhausted. Do any of you know what this is like? I'm just venting and expressing how I feel and I don't expect any magical answers. I just want to know that I'm not alone. What do you do when your pain is this bad?

I'm listening to music and trying to take it easy. There's not much else I can do right now.

I hope that was better.

Hi Kouzoku. I'm really sorry that you're experiencing so much pain at the moment.

I don't have personal experience of managing chronic severe pain, but I have a close friend who's been battling the pain of rheumatoid arthritis for forty years, and he's often talked about his strategies. His condition is quite severe- he's confined to a wheelchair and has damaged joints throughout his body, and he also has some other serious physical and mental health issues.

Firstly, he gets ongoing support from his regular doctor and also from a specialist rheumatologist, both of whom try to help him manage his condition. You don't mention whether you are seeing a doctor, but it doesn't seem reasonable that you should have to put up with severe pain without receiving any effective treatment. My friend takes a variety of pain medications, including daily morphine, although he keeps to the lowest dose necessary to make the pain bearable. He also takes anti-inflammatory drugs and other medications to help manage symptoms of his disease. As well, he takes antidepressant medication, as chronic pain also often leads to chronic depression, and depressed people find pain more difficult to manage.

The medications don't control all of the pain, so he also uses rest (he has a very comfortable padded recliner chair), hot water bottles, hot showers, exercises and self-massage to help him cope. He is also a master of distraction and immerses himself in World of Warcraft, fantasy novels, action movies and heavy metal music, often for many hours at a time, or he talks with relatives or friends on the phone. When the pain is REALLY bad, he takes extra medication and just goes to bed to try to sleep it off- there's not much else he can do at those times, because he becomes almost completely immobilised.

I'm not sure whether any of this is helpful, but at least it might reassure you that you're not alone in living with pain. My friend has been in daily pain since he was 12 years old and says that he can't really imagine his life without it- that he's been shaped by it. He's a very brave person and I admire his kindness and the patience he shows in dealing with the many difficulties in his life.

I really wish you all the best in getting relief from your pain.

Wow, I also got sick at 12, just like him. I have Mixed Connective Tissue Disease, which is a combination of Lupus, Rheumatoid Arthritis and Sjogren's. So I understand what he's going through and what you go through as a friend. Thanks for being his friend through it all; many of us lose friends who deem us to difficult and not worth the effort. You're a nice person.

Luckily, my condition is not so severe that I am confined to a wheelchair, but the time for me to quit working is at my doorstep. Just being awake is difficult, but I've forced myself to work because I don't have a support net to help me. But I'm not going to have a choice much longer.

I had a rheumatologist in the past, but lost insurance. My PCP has been doing all she can to help me, but unfortunately my condition is getting worse. I just got insurance again and am waiting to get in with a rheumy. Back when I did have insurance, I went through an eight-week program of physical therapy combined with CBT to help me combat pain mentally.

The thing that helps me most is hydrotherapy. Hot baths are better than any pain reliever I've ever taken. Next for me is music.

Can I ask how your friend manages to play WoW a lot? I used to play video games every day, and that's something I really miss, but I just can't do it anymore because of my hands. I just surf the web a bit, and that alone is too painful for me and I'm trying to find other things to do with my time because of it. Even holding books to read them hurts. Sitting at my desk hurts. Everything hurts. That's the reason distraction doesn't always work for me. The only comfortable thing I can do now is lie still in bed while listening to music. But then I get bored. I start to ruminate. That leads to depression. I need ways I can be active (at least mentally). That's one reason I've been too stubborn to quit working; I need to keep my brain active. I get "cabin fever" easily, too. Winter is so hard on me; I wish I could move to a more mild climate. Today it's snowing 8 inches and then more is coming in the next 2 days. So I will be house bound. I will probably watch some movies, but I have to stress that even doing that is so painful.

I know springtime will come soon and that will help. At least I'll be able to get out of the house without flaring up because of the cold.

Thank you for sharing your friend's struggle with me. It means a lot.

some days are darker than others aren't they. Being brave can be exhausting and some days it feels like you just don't have the energy or motivation to handle the pain of your existence and somedays you wonder if it's worth the struggling. I guess I should say that this is how I feel sometimes. I don't usually feel like this, but sometimes, like tonight for some reason, I just do. So much of the time I just get on with it and don't tell when I am finding it hard. I admire you for your bravery and I understand that sometimes you just need to tell the truth and share your suffering.
Likely this is a specially difficult phase and another day will feel less challenging.
I just want for you to know that I care really. I can't change how it is for you, but I hope that this feeling changes a little for the better soon. Until then try to tread water and keep your chin up.xxxxx

Holy s**t. I'm sorry you have to go through that.

I have a severe mood disorder and IBS, but I don't have anything that painful. I won't even pretend I know what you're going through. Just know that I hope you feel better or at least okayish soon.

I know that he uses a special gaming mouse with lots of buttons on it, but I don't know whether that makes a lot of difference. He only plays WoW when his hands aren't too bad and when he's really bored, as he regards it as too much of a "time sink". The pain and swelling in some joints flares up for a while, then settles down, although he has so much permanent damage to his knees, hips and shoulders that they are always very painful. At the moment he has very limited use of his hands- when I spoke with him on Friday, he'd struggled to get a frozen dinner out of the box. The RA also makes him very tired, so that when the disease is particularly active, and especially when he has a fever, he needs to sleep a lot.

He is also determined to keep working. He's entitled to a full disability pension, but he still works as a university tutor for one day per week and he also does exam marking and some course-writing. He drags himself in to work even when he's quite unwell- I've only known him to miss one work day in the past five years, and that was only because he literally couldn't get out of bed.

He doesn't get cabin fever- he had a very difficult childhood and now VERY much values the security of his own home, so he's quite content to spend most of his time there. In any case, his mobility is quite poor, so any outings take a lot of planning.

To help with reading, as his hands are often too painful to hold a book, I got him a book seat. He was very skeptical at first, but he says it works surprisingly well:



I don't think that people who haven't experienced a life of chronic pain have any real idea what is involved. I have certainly learned a lot from my friend, but I don't kid myself that I can really understand, as I've always been quite lucky with my health. Managing his physical and mental health- medications, doctor's visits, pain, other symptoms and side-effects, lack of mobility- is almost a full-time job for him, and he has a lot of very bleak days. From the sound of it, you experience many of the same difficulties, and with less medical support, so you certainly have my heartfelt sympathy.