Re: Tips for Dealing With People in Pain

[Guest guest]

Fran, thank you so much for posting these tips again. I had not seen

them before. I have saved and printed them for my family. I think

these tips will help to open their eyes!

Thanks again,

Sharon

[Guest guest]

I'm new to the group - My name is Shirley, I'm 41 and I was

diagnosed with PA about 6 years ago. I was diagnosed with psoriasis

about 20 years ago. I'm having a particularly hard time right now

with pain. I'm on enbrel + methotrexate 6 pills weekly and have

been for 3 months. My dr. and I are discussing remicade since I

don't seem to be having significant improvement. I'm staying on the

enbrel for another few weeks and if I don't see an improvement we'll

begin the justification process for remicade.

Fran, your tips for dealing with people in pain made me cry. I

finally had everything I've been feeling put into words. I haven't

been able to articulate it well and now I've got this to give to

those who may not understand why I can be so " flaky " sometimes.

I'm currently battling a bout of muscle weakness coupled with pain &

cramping. Add in my diabetes and the PA and I can barely walk

without some sort of support (cane, walker, etc.)

There are days I just want to give up and go buy an electric wheel

chair - I'm exhausted and I'm tired of hurting. Fortunately I have

a wonderful job and boss who is very very considerate of what I'm

going through. I have the ability to work at home on those days

where I can't get myself showered & dressed and in the car. I work

with computers (data analysis, web site design and implementation

and other stuff)

I welcome any thoughts on remicade and any words of wisdom & support

would be greatly appreciated!

Shirley

[Guest guest]

Hi Shirley

So sorry you're having a rough time of it. I'm on MTX ( 4 month ) and

Enbrel ( 3rd week )too.

I asked my doc to write me for injectable MTX. I already take a large

handful of pills each day and didn't want to deal with another bunch.

I'm up to the equivalent of 8 pills ( 20 mg ) MTX once a week, and

have little problem with side effects. I started getting results from

the MTX at 17.5 mg ( 7 pills ).

On the enbrel - I've read that some folks get better right away and

some folks take up to 6 months... Folks that had no result from Enbrel

can have a good response to one of the other TNF blockers, so don't

give up hope! What's nice about Remicade is you don't have to take it

every week....

Another recommendation many have made is ask your doc / rheumy for a

referral to a pain specialist. It can turn an intolerable discomfort

into a situation one can live with.

Hoping you get some relief soon -

[Guest guest]

Just wondering . . . Did anyone find this useful or helpful?

When Lori sent it to me, I thought it was great. I made a few

changes, then sent it on.

Since no one commented, I am wondering if I missed the boat here.

Do you think it needs changes? Any problems with it? Does it fail to

reflect your own experience with pain?

I would be grateful for your candid feedback.

Best,

>

> Many thanks to Loriann for drawing my attention to the resource

below . It is a succinct but valuable list of suggestions for the

people who have to put up with us! You may want to send it to

relatives or friends, as I plan to do. You should also feel free to

edit or add to it as you see fit.

>

> Lori found this on a syringomyelia website but with no

attribution to a specific author. I have done a search myself and

have found it on other websites, sometimes in a slightly different

form. At least one of these sites credits someone by name, but

without indicating whether this person authored it or simply found

it and posted it. All of other sites credit no one or say " author

unknown. " Given how widely this little gem has already been

distributed online, I have decided to stick my neck out and add it

to our Feisty resources. Of course I would be more comfortable if I

could credit it to its rightful author after obtaining proper

consent So please be sure to let me know if you are certain of the

original source. It is a gem.

>

> Thanks,

> -- and here is the item:

>

> Tips for dealing with people in pain

> Ideas for friends & family

>

> 1. People with chronic pain seem unreliable (we can't count on

ourselves). When feeling better we promise things (and mean it);

when in serious pain, we may not even show up. Pain people need the

flexible " rubber time " found in South Pacific countries and many

aboriginal cultures.

>

> 2. An action or situation may result in pain several hours

later, or even the next day. Delayed pain is confusing to people who

have never experienced it.

>

> 3. Pain can inhibit listening and other communication skills.

It's like having someone shouting at you or hearing a fire alarm

going off in the room. The effect of pain on the mind can seem like

Attention Deficit Disorder. So you may have to repeat a request or

write things down for a person with chronic pain. Don't take it

personally or think that tthe person is stupid or brain damaged.

> .

> 4. The senses can overload someone who is in pain. For example,

noises that usually are quite tolerable may seem jarring,

upsetting, or extremely loud and hard to bear.

> .

> 5. We may seem lacking in patience -- for instance, unwilling

to stand in a long line or to wait for a long, drawn-out story or

explanation to " get to the point. " .

>

> 6. Please don't ask us, " How are you? " -- unless you are

genuinely prepared to listen to a candid reply. This question just

directs our attention inward, to the pain we are experiencing.

>

> 7. Pain can sometimes trigger " psychological " disabilities

(usually temporary). When we are in pain, a small task like

hanging out laundry, taking a shower, or walking to the

neighborhood store may seem like a huge wall, too high to climb. An

hour later, the same job may be be quite magageable. Sometimes we

may be very down, with a short temper or sudden crying spells. When

you hurt much of the time, occasional depression is a sane and

normal response.

>

> 8. Pain can come on fairly quickly and unexpectedly. Pain

sometimes abates after a short rest. Those of us with chronic pain

may appear to " arrive " and " fade away " unpredictably.

>

> 9. Knowing where we can find a refuge -- such as a couch, a bed,

or a comfortable chair -- is just as important as knowing the

location of a bathroom. A visit or outing with you is much more

enjoyable when we know there is an accessible refuge nearby. In

fact, people in pain may not want to go to a place where they will

not be able to sit or lie down if necessary.

> .

> 10. At our worst moments, small acts of kindness can seem like

huge acts of mercy. Your offer of a pillow or a cup of tea can mean

everything to someone who is feeling temporarily helpless in the

face of encroaching pain.

>

> 11. Not all pain is easy to locate or describe. Sometimes there

is a body-wide feeling of discomfort, with diffuse discomfort in,

say, the entire back or both legs, but not in one particular spot

the person can point to. Our vocabulary for describing the many

varieties of pain the human organism can experience is actually very

limited.

>

> 12. We may not appear to be in pain. While people in acute pain

often wince, cry out, grab and massage the affected part, etc,

people whose pain is chronic learn to suppress all expressions of

distress, including a " pained " facial expression. If we did not do

this, we would be drawing attention to ourselves, upsetting others,

and disrupting activites and events. So please do not assume that

you can tell from looking at us whether we really are in pain. You

may not see our pain -- just as you can not always recognize

the " invisible disability " of everyone who displays a valid handicap-

parking placard. or needs to use that specially designated stall in

a public washroom..

>

> 13. We may not have a good " reason " for hurting. Medical science

is still limited in its understanding of pain. Many people have pain

that is not yet classified by doctors as belonging to an officially

recognized disease or disorder. That does not reduce our pain; it

simply reduces our ability to label or name it in a way that others

understand or accept. When someone tells you she is in pain, you can

make things easier simply by believing her.

>

[Guest guest]

Dear , I found the "Tips for Dealing with People in Pain" not only right on the money (at least it was in my case!!) but extremely helpful for any person or family dealing with pain. Pain is probably the most difficult "disease" for anyone to have to deal with and any info that might help even one person...one family...is vitally important for us to share...which his exactly what I did!! I 'fowarded' it to everyone in my family and also to a friend of my son's who's just learning how to handle all of this; he's only 21 and only recently learned that his Mom has M.S. Thankfully, my son is not the least bit afraid to share his experiences living with a Mom who's not only disabled but lives a pretty full life despite dealing with chronic pain. The boys (guess at age 21 I should call them young

men!) have been good friends for nearly 9 years but only recently found that they had this in common. Since then I've sent a lot of info to them on this subject and the "Tips..." was perfect. All the best, Beth

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