positive ways to cope with pain
does anyone know any positive ways to cope with enduring pain.
I have ankylosing spodylitus which is arthritis of the back and joints. It is getting worse everyday and hurts so much. I am being kept awake half the night and can only sit for a few minutes before it hurts too much to cope with. Its releved with moving/exersice so is ok when I am walking or doing chores, but as soon as I sit still Im in pain.
I have had to stop painting which is really hurting me psychologically as I love painting and it meant so much to me, I just find it hard to see a point in life with out painting.
I can only go on the computer for a few minutes before it hurts too bad so I have had trouble keeping up with online friends. And I am really worried about my next course starting and how I will be able to concentrate on the books and read.
I change position which helps a lot and I am going to try and get some better chairs. I am moving to a flat as well so it will be easier to care for.
I find this very frightening and I hate being in pain. I am scared about where it will end as a lot of people end up in wheel chairs. It is also associated with getting lumps in the heart, lungs and kidneys so I worry about that too.
The medication of anti inflamatories I dont want to take as they have side effects especially long term and I am funny about chemicals and medicine so I dont want to take them. The other medications such as remicade is genetically modified mouse blood so Im definately not taking that!
I just dont know what to do and I dont know how to handel this in a postive way. Pain can just be so overwhelming and really gets me down.
KaliMa
Veteran
Joined: 8 Feb 2007
Age: 63
Gender: Female
Posts: 960
Location: Boston, Massachusetts, USA
I'm so sorry to hear you're having so much pain. I wish I knew a way to help, but I don't. I'm just responding so you don't get x number of views and no responses at all - I'm afraid I have nothing to offer you but sympathy.
I hope the rest of WP can come through for you.
I hope the rest of WP can come through for you.
thank you, that was very kind
Do you have a laptop?
I hurt my back recently, and realized how beneficial a laptop could be for my posture.
I know what you mean warmth helps me too but it is freezing here and I have no heating, another good reason for me to move home.
Have you found any ways of thinking that get you through?
Do you have a laptop?
I hurt my back recently, and realized how beneficial a laptop could be for my posture.
no I dont, mine is an old 95 rubbish thing and its on a dining tabel so is far too high aswell.
a lap top would be good as I could lie down and shift position more easily. Its affording one thats the prob, perhaps I can get a good deal on ebay after xmas when people are selling their old ones.
I know what you mean warmth helps me too but it is freezing here and I have no heating, another good reason for me to move home.
Have you found any ways of thinking that get you through?
ways of thinking, hmm.. i am not sure..one way is to occupy your mind with other things if possible, i dont really know what else to say. does not NHS fund flights to warmer climate for people who suffer from such illnesses? as here in Norway one can get economical support for short trips to warmer climate a few times a year..
if you figure out how to block pain with your thoughts please let me know...
also do you have accesses to a sauna? as that would help allot..
CMaximus
Deinonychus
Joined: 3 Nov 2007
Age: 42
Gender: Male
Posts: 387
Location: Calgary, AB, Canada, Earth
Stretching, I guess. It seems people with your condition need to constantly limber up. If your lower back is a bit off, what I like to do is keep my shoulders on the floor with hands out, bend 90 at the waist with bent knees and just slowly twist my knees over and touch the floor, back and forth. It usually illicits some popping and feels great afterwards. Although, some normally beneficial chiropractic therapies are apparently dangerous for people with ankylosing spoydilitus, so ask a therapist before you try, maybe. And I guess research the condition on your own, too.
Unfortunately, for the present the best thing you can probably do is just focus on getting used to the idea until it becomes a background aspect of your life, since therapies are all that's available at the moment. Now that I think about it, there's a girl in my martial arts class who might have this. She says her spine is fused, (it's most of her neck) and her wrists are always hurting, it seems like. She spends all day at a desk typing and always needs chiropractic sessions; otherwise she seems to be getting along fine in school, work, etc. She just takes it for granted, I think.
It'll probably be available again at a low price just after Xmas. But, if you just want to keep in touch with friends and surf the net, you could always go IPhone.
thanks thats good advice, I will look into iphones:D
I know what you mean warmth helps me too but it is freezing here and I have no heating, another good reason for me to move home.
Have you found any ways of thinking that get you through?
ways of thinking, hmm.. i am not sure..one way is to occupy your mind with other things if possible, i dont really know what else to say. does not NHS fund flights to warmer climate for people who suffer from such illnesses? as here in Norway one can get economical support for short trips to warmer climate a few times a year..
if you figure out how to block pain with your thoughts please let me know...
also do you have accesses to a sauna? as that would help allot..
wow are you serious about getting holidays to warmer places, that must be great! The nhs does not do anything like that, it does not even allow remicade as its too expensive.
A sauna sounds a great idea -its cheap at the local leisure centre, I will try it out
Unfortunately, for the present the best thing you can probably do is just focus on getting used to the idea until it becomes a background aspect of your life, since therapies are all that's available at the moment. Now that I think about it, there's a girl in my martial arts class who might have this. She says her spine is fused, (it's most of her neck) and her wrists are always hurting, it seems like. She spends all day at a desk typing and always needs chiropractic sessions; otherwise she seems to be getting along fine in school, work, etc. She just takes it for granted, I think.
I already do yoga and Im making myself do it more often and its helpful, but the benifits only last a little while. Its sad as I wanted to train to be a yoga teacher but thats out of the question now as my flexibility is getting less over time rather than increasing.
Unfortunately in the books and websites on AS only suggest the medicine. Im doing the no starch diet that is recomened and when I eat starch it is much worse but Im still in pain when Im sticking to the diet well.
I think your right that it will get easier with time, I think a lot of the difficulty is coming to terms with it. Im not sure how I will take it for granted though. Perhaps hypnotherapy would help.
Thanks for your advice, you know so much -it was very helpful!
I know what you mean warmth helps me too but it is freezing here and I have no heating, another good reason for me to move home.
Have you found any ways of thinking that get you through?
ways of thinking, hmm.. i am not sure..one way is to occupy your mind with other things if possible, i dont really know what else to say. does not NHS fund flights to warmer climate for people who suffer from such illnesses? as here in Norway one can get economical support for short trips to warmer climate a few times a year..
if you figure out how to block pain with your thoughts please let me know...
also do you have accesses to a sauna? as that would help allot..
wow are you serious about getting holidays to warmer places, that must be great! The nhs does not do anything like that, it does not even allow remicade as its too expensive.
A sauna sounds a great idea -its cheap at the local leisure centre, I will try it out
oh i am sorry to hear that about the NHS.
well if all fails you can always emigrate to warmer climate or marry a Norwegian and get sponsored flights to warmer climate:P
ps: let me know how the Sauna works out will you?
I don't have ankylosing spodylitus, but I have a lot of similar problems with my Lyme disease. Chronic pain in my joints and back with no real treatment that helps. Sitting still, laying down, standing in one position are all horrible. But I also have problems with my muscles and skin that respond poorly to movement and heat so I am in a weird position with all this.
For the joint problems I make sure to have lots of pillows and things so I can shift as much as possible in my chair when I am at my desk and on my computer.
I found that MBT shoes (http://www.swissmasaius.com/Default.aspx?lang=en-US) have helped a lot for walking. Whenever I would go shopping and have to stand still for periods of time my lower back and tail bone would kill me. I was walking with a cane at that point and these really helped. They take the pressure off your lower back and knees and they let me rock when standing which is comforting for me physically and mentally.
It is really scary, especially when you see yourself getting worse or loosing the ability to do the things you like. Even if it's more limited than I'm used to, just getting to do those things is helpful.
Maybe for the times you can't get out to a sauna you could try some sort of heating thing/device that covers a larger area. An electric blanket is all I can think of at the moment, but there must be better options out there.
For the joint problems I make sure to have lots of pillows and things so I can shift as much as possible in my chair when I am at my desk and on my computer.
I found that MBT shoes (http://www.swissmasaius.com/Default.aspx?lang=en-US) have helped a lot for walking. Whenever I would go shopping and have to stand still for periods of time my lower back and tail bone would kill me. I was walking with a cane at that point and these really helped. They take the pressure off your lower back and knees and they let me rock when standing which is comforting for me physically and mentally.
It is really scary, especially when you see yourself getting worse or loosing the ability to do the things you like. Even if it's more limited than I'm used to, just getting to do those things is helpful.
Maybe for the times you can't get out to a sauna you could try some sort of heating thing/device that covers a larger area. An electric blanket is all I can think of at the moment, but there must be better options out there.
Thanks Zureidy
its nice to hear from someone who understands.
Ive read that the masai shoes are supposed to be good, I will have to make my self stop being so cheap and buy some
at the moment I am working on dealing with criticism as new age health people have told me that criticism causes athritis so I thought it was worth a go.
I hope things improve for you ((hugs))