Last post Sun, May 04 2008 1:34 AM by MaggieRay. 72 replies.
Wow, an empty section...let's fill it up!
I have chronic pain from rheumatoid arthritis, fibromyalgia and degenerative disc disease. I can't remember the last time I had a truly good day, at least not within the last 7 years.
I know lots about how to deal with chronic pain in a physical way...from medications to therapies, exercise to rest, supplements to massage. But what about dealing with it mentally? It takes such a toll to know that day after day after day, I'm still going to be in pain. So what works for you? How do you deal with it?
Some things I have found helpful:
Those are some great ideas. I still haven't formed any really productive coping strategies. Crying at my desk isn't very productive. Sleep is my favorite, but that doesn't really do anything but keep me up all night and postpone things. Having breakdowns feels better, but again doesn't solve.
OK, so I'm not helping here. I'm new here and relatively new to the problems I now have. I'll just say thanks for the good things to think about and shut up!
FKC, I do understand about crying at your desk. I always tried to "postpone" it until I was in the car on my way home (when I could put my sunglasses on ), but sometimes that just wasn't possible. I find that sometimes a good cry helps, and other times it just goes on and on, and I never seem to understand why they're different.
Sleep does postpone it, but sometimes it postpones the pain until I'm better able to deal with it. I know that always trying to escape is not very healthy, but aren't there times when that's all we have? And sleep can help the body heal if it's in proper doses. Unlike my other escape, reading fully-absorbing mind-candy historical novels, which can make my hands hurt from holding the book!
PS - I love your avatar!
Thanks. :) It's so nice to finally talk to people who really understand. That's what brought me here.
On the avatar -- check out simpsonizeme.com -- it's super fun, makes you into a Simpson.
I think that the best advice I could give to you and that has worked for me for almost 10 years is prayer. Praying to our Heavenly Father has helped to get through days where I wanted to end it and stop it all together. There were times that my wife and sons simply wanted to run away because of the pain they saw me suffer with. I wanted to run away as well, but no matter where you go, you will always be there...
There is no such thing as a higher power, but there is a God who's name is The Lord Jesus Christ and he has promised never to forsake us nor leave us. Trust Him and He will get you through it all...
The Bible says this:
Isa 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
i have intersticial cystitis and unmanagable chronic pain as well - i am not an expert and have just accepted that i have to have help; change my life, blah, blah, blah; ugh, so i did reluctantly. now, i think i'm in my "pity-party" stage; i'm sure it will pass once i get medically situated. i have not accepted pain management prior to this time to any degree that would allow me relief - i think i'm very very strong willed.
i will totally agree w/ u about the aspects of pain dealing w/ it mentally - i too am a strong person, but as you said, the suffering others watch of you, i believe if they are not family - is very isolating. last year i was too sick to travel to thanksgiving to see my kids - this year as well - i've had to stop working the pain is so bad and all the prressure and urgency - and my daughter indicated, "but you've had a year to get better" - it's the hardest for my kids to accept, they just pretend it isn't happening.
and i must be very disagreeable to be around - because i am so so so isolated from people. i allso had a very controversial job - [i always came in to take care of hard problems] - soooooo. . . . . nobody really on the work side, i've had my head down for like 25 years; i look up after 14 & 16 hour days all this time and absolutely nbodys there -
i'm not advice giver [that's really not true] i don't wish i spent less time at the office because i think what we're doing is important work; but i do wish for that time i did have, that i was more aware of how to foster relationships. i sure have time to learn that now, but nobodya's here. i was so work focused because i was good at it - ur so lucky to have ur family. i've been having a pretty tough time, kidding aside. having to sell the house, blah, blah, all the financial worries of a sudden loss career. my illness isn't stress related, but i just can't believe this stuff doesn't imact. i honestly am so isolated that i liked this site because it seemed so upbeat and how to live, rather than how to be disabled. cudos to everyone.
Thank U for the great advice on managing some of the psychological aspects of pain. i hope my post is ok - i read the rules, i'm not that good at interpreting them, but it really would be great to interact w/ a group of folks wehere there was abaseline commonality who understood.
hope thsi is a good day for u.
I hope that you will find what you need here and I am sure that you understand that you are greatly welcomed. I don't know if this will be encouraging or not, but sometimes you need pain management despite wanting to avoid the drugs. Chronic pain can and will wear you down if you do nothing about it and the right Doctor who truly understands your situation is essential.
I have lived with chronic pain myself for about ten years or more and have had 14 surgeries and countless nerve damage issues. I use to take 9-11 different narcotics a day because the pain was unmanageable and uncontrolled. You can live an easier life when the edge is taken off your pain, you as I may never again experience a pain free life, but we can live the most complete and fulfilling life possible in our circumstances once the pain is in better control.
If you ever need to talk about it or want any advice about dealing with certain aspects of the pain, well, my wife and I will always be available to you.
Dave, prayer is certainly valuable for many people. With my spirituality, I would say that perhaps meditation might fit better, but I am moved to prayer sometimes, too.
Cheyene, welcome to Disaboom. I am glad you found us. It's quite alright to have a pity party, and don't be surprised if you find you want to have one from time to time, even after you are medically situated....we all like to have a party from time to time.
It is hard to have chronic pain and to be "pleasant to be around", even with medication. For other people to deal with that and understand what we're going through takes time and willingness. I hope your family will come around. Either way, there are lots of people here who understand, so you can always come here and not be alone.
I have to say that I agree with you. I am not under any doctors care and have seven differnt diagnosis. I have had chronic pain for so long but my condition has been getting worse and it is all I can do not to fall total apart, so I pray and talk to heaven father all the time and he give me the strength to handle the pain, I wish it would go away but I must accept that everything happens for a reason!!
Dear Cheyene, I red your post and I see myself, where you are now. I have medical problems, The one that cost me my freedom to livee is chronic pain. I have prayed for seven years. I ove god , but I an angry ... I have had limited abilty to take care of my most prescious childre. that just makes me cry. Well I know you suffer like me and are working it out. I bee praying again to try that aproach. may the lord bless us both with success over are ailments. Thanks for listening talk later MEL
One of the things i've found from my hands hurting from holidng books (ditto that it helps w/ the mentlal & emotional aspects to get my mind away if possible) - i use those big chip clips or very large aligator clips or those really really big paperclips coated w/ plastic so the y don't slip - i hope that helps!
Hi InnerGlow, I can positively idenditify with all three of your diseases and conditions. I not only have all three of the mentioned, I have tendonitis, sciatica, diabetes, high blood pressure, asthma, bronchitis, severe sinus and allergy, diabetic neuropathy, and chronic back pain. I know I left something out, but this should give you an idea of what I deal with on a daily basis. While I had insomnia since I can remember, it has completely gone bonkers now. That's why I'm writing you at 1:43 A.
Because of the physical pain, I was labeled disable last year November. I'm used to working, being active, and enjoying life. Never in my wildest imagination did I ever see me being on the "stand-still" road of not being able to leave the house whenever I please. In the beginning, I had to have someone with me because my body would just collasp. I was in really bad shape. Even though I have a high tolerance for pain, this new-found pain of mine proved me wrong. Well almost. Now that I know what magnitude this chronic pain can travel to, I can hang with it to a point without having to take meds.
At least now, I can move about better and by myself. Pain medications wasn't working for me, and I'd gotten tired of popping pills last year, and I just stopped taking all meds including my diabetes med and every other day my high blood pressure med. I eat right, get exercise, and drink plenty of water, and I also loss some weight.
While I'm feeling much better, I have set-backs of the "nightmare" kind, and I know that you can identify. I can also identify with the talking about the pain to getting some relief. Just about everybody where I live, have what you and I have, and a lot of them have all of what I have so, when I get the chance to leave the house, I get to "whine" a little. It really does help to talk about it with others dealing with the ailments you have. You don't always need a "shrink. I have not gone that road yet, however, if I need one I'll get one.
Well, Glow, I'm winding down now, and hopefully, I will go to sleep. You take great care, and continue to speak about your pain. Writing about it helps also. But the best person to talk to is God. I feel less pain since I've been talking to HIM. I'm not angry with HIM any more, and no it wasn't about my pain. HE knows that I can now handle it. I just didn't know what was killing my body like that, and now that I know, I'm in a better place with the pain kind-of-sort-of.
Good night, good morning, and all of our "Author of Life" love and blessings to you in this HOLY holiday season.
Very sincerely,
RozKJ
Sleep what is that? I to am new her new to diagnosis but not pain ive had it so long i dont remember what it feels like being out of pain and its hard 2b strong. I have reflex sympathetic dystrophy fibromyalgia dig disk dis. cfs bipolar ptsd anxiety/panic/sleep disorder. Normally i "wake up" and say i dont want to hurt or dont want to do 2day but this mornin i woke crying saying i dont want to hurt 2day imean cmon when do i ever. Sense of humor you got to keep that or youll go crazy Hey to all any one asks how you feel tell them with your fingers. I find noone that has not experienced it can understand And im tired of being alone THANK GOODNESS FOR ALL OF YOU @ DISABOOM
I have osteoarthritis complicated by hypermobility and TMJ, plus migraines (and some other non-pain related issues). To make matters worse, I haven't had a full night's sleep in months due to hot flashes.
Chronic and/or severe pain are not just a physical issue, it's also a cognitive and affective (emotional) issue as well. They're also social issues because society tends to view pain as strictly a physical problem, treated with various analgesics and/or physiotherapies. You hurt, you take treatment, the pain goes away, your wound heals, the event stops. That’s the way it’s "supposed" to work, and if it doesn’t, then you’re not doing it right. There are problems with being a self-advocate with your doctors as well. I discuss these in my blog post, as well as how I deal with it:
"It's a Real Pain"
andrea
