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Dealing with chronic pain... how do you cope?
when you first realized that you had chronic pain and that you would have it all your life, how did you deal with it? How did you learn to accept it and go on? I am having a real hard time accepting it, and learning to go on- learning to do more in life and to not get caught up in just my pain. :( :(
I could really use your thoughts and experiences. Thanks. :wink: -KateLynne |
KateLynne~
Could you tell us what kind of pain you are in? I have had lots of back trouble and 7 surgeries. All have been painful. I now have arthritis and here it is Spring. I think the air conditioning makes me worse. I was ok all winter & I as soon as I turned the air on, misery. I wish I knew something that would stop the pain of it. After you have tried all kinds of pain meds & most have side effects, You just live with it. Yes, it can get bad enough to see a doctor, thats how I had all the surgeries. The long rehab and having to hire help, when its hard to find, makes me not want to go that route again. I have had much trouble with pain meds. Many I have been allergic to and itch bad, then others will bind you up.:eek:
You may have to seek help. The pain doctors I have known will try to make you conforable. I had a stimulation for almost a year, had that taken out also. I am allergic to metal. I am sure there are some on this forum that can give you advice better than I could. ________ Fancylady:) |
Honestly..I try and take it one day at a time.
Sure some days are easier than others as far as taking care of my wandering mind..But i have to keep myself busy. I don't mean scrubbing floors and such either. I mean doing puzzles and playing online games.Reading.Anything except sitting and dwelling on things you can't change. My probelms started when i was 35 and it was and somedays still is rough for me to accept. I am still young!I feel i "should" be out riding a bike with my girl and taking long walks in the park. But my reality is i just can't do it anymore!! I have to take what i have"now" and make the best of it.I dont wanna look back someday and say..I really wasted alot of my life wishing i had something else..instead of making the best of what i had! I know firsthand all this isn't easy..I really do...I look at people in wheel chairs with no legs and arms..I really did see someone like this 2 days ago..and i told my daughter..If you ever think your life is bad..remember her.. We could always have things worse..So we gotta try and find a way to adjust to what we have right here in the here and now..No matter if it's rosey or not.. Otherwise ,we waste alot of precious time with the ones that love us! Then fall into a deep dark depression.. I find if i look too far ahead int othe future i get seriously depressed!! So i try and keep my mind in the here and now only..and just do the best with what i've got.I can't lift heavy things anymore.It used to just crush my pride to ask a man to come help me..Now i know..I will be hurting reaL bad if i don't..Thats just my life now! If you would like to private message me because you need a friend..feel free! I have to go for now.. Also,i wanna say hi to fancylady billie<wave> I haven't talked to you in such a long time!! It's good to see a post from you... I hope you are doing ok and like your new home> Take care everyone... {{{{hugs}}}} |
Kellwantsanswers~
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Kelly, I am like everybody else. I have good days & bad days. I am over on Weight Support on a daily basis. It's good to see your post too. ______ Billie:) |
How do I cope?
Dear KateLynn;
Alcoholics Anonymous did the world a great thing when they coined the phrase, "One day at a time." If I wanted to give myself a super-duper panic attack right now, I would give up that phrase and start dwelling on living the rest of my life, my entire life, my whole life, my whole, entire life in pain. (Ok, I've gotten a pretty good start on a panic attack right now - LOL) But it's true, you must not think about anything but the here and now and do your best to be positive every day. If you find that hard, then there are hundreds of people here who are willing to help you. Just log on and you will get the positive side of life from folks who should be down but are just the opposite. That's what this forum is for - to share ideas, thoughts, concerns and to help each other. Also, try to keep a regular schedule, try not to sleep all day, etc. Keep as busy as you can, some days are better than others as said by my good friend, Billie. It's hard, nobody will tell you it's not but as the years pass, you get better at handling it. And, you might have to set limits for yourself and make sure others know them. For example, I don't travel well and my family all understand it. So, if I am unable to attend something, they will know why. I blamed myself for my pain - like an idiot I don't know why. I have idiopathic PN and I'm not a diabetic so I felt I must have done something else to "get it". Dumb. Wish I had more to tell you but right now, that's all I can come up with. Best of Luck, Nancy-H |
I have relex sympathetic dystrophy nearly full body- severe pain all the time.
Thanks for the sweet words. I'll post more when I have time. You have helped me already everyone. :) |
I was with a pain specialist for a long while. Then I switched over to a psychiatrist and it has made a WORLD of difference.
I actually got better pain relief meds from the psych then they ps. Great having someone to talk to. |
Welcome! I am also mostly at the Weight Support board often but linger here too.
How to deal with pain day in and out? Gosh, you know if I think about it, I am not sure how I do it every day. I just take it day by day and do what I can depending on how I feel and what are my symptoms for that day. Like today, I was up to cleaning the apartment. Tomorrow however I may pay for doing just that. Tonight might also cause me trouble. Okay serious now, I make sure I take my meds everyday eventhough my levels are low. I speak up for myself when I have to. It could be to doctors, friends, family, the neighborhood dog, whoever. If I am in pain and I can't do something I say I can't do it. If they don't like it, they can go and pound sand.;) Sometimes you need to take a step back from everyone and evaluate yourself to make sure you are not overdoing for people. YOU come first...remember that!!! The best and last thing I can recommend to you is coming here. Here we don't discriminate, we understand. You don't need to explain your pains just that you are in pain and need someone to vent to. You can complain about some person that is bugging you here. And most of all you have support and understanding. I am glad you found us! Please come back whenever you want!:hug: |
Hi KateLynne!
It's good to meet you! I'm not sure that I have learned to live with my pain yet, even after five years. I adjust my activities because I need to. And I tolerate it because I have to. Most people with experience will tell you that they learn to take things one day at a time, but somehow I've never learned that lesson yet.
I've always been a dreamer, and I simply cannot stop thinking and dreaming about my future, no matter how hard I try. So even though I live with the pain day-to-day, I'm always wondering what it will mean to me in the future. The only thing I've found which consistently makes me feel better is when I can believe that I've really done something to help someone else. I know this may sound Hallmark-ish, but it's true. I set goals for myself, over the short term and over the long. I decide what I will do today, but also think hard about what I want to be doing a year from now. Dreaming of a better future is the only thing that keeps me pushing myself on a lot of days. I hope you find your stride, and figure out what it is that works best for you. There is no doubt in my mind that everyone needs to handle pain in their own personal way. Good luck to you, Katelynne, and all my best wishes! Idealist |
I think right now I am competely unable to deal with anything.
I had a c-spine corpectomy October'05, was doing find. Blacked out 3-8,07 driving my car. Seems that I injured my c-spine again. Have never recoverd from the confusion, chest pain(myofacial pain syndrome or trigger point?), neuropathy is worse, cervical vertigo, different pain in my neck than before, jerking arms legs etc. Had a bad jerking attack and hit my poor little Chihuahua on her back while holding a cell phone. tonight. I have no control over the jerks nor any warning when they are coming. Had this for 13 years until the NS fixed it and now I feel like I am in a nightmare and can't wake up. I am so thankful that I did not injure the people I hit in the SUV and only totaled mine. Very thankful I was not injured more...yet am in the dark as to where to go from here? Already had EGG, holt monitor(which I flunked just a little bit) MRI brain...now what? Fired my doctor Friday so got to get a new one. Meanwhile I am in limbo, my 70 year old husband is exhausted from having to deal with me. I wish I could run away from myself and feel sorry for anyone around me. Yet what is wrong with me, is not a drop in the bucket to what many face daily, and I need to quit whinning. Trouble is I can hardly remember anything short term, now why can't I just forget I am in pain, dizzy and sick at my stomach. Thanks, I feel better after whinning. Anne |
"Dealing with chronic pain... how do you cope?"
Very good narcotics!! |
Anne
Are you feeling any better today, with the jerking and things. I am hoping things are better. Not sure but are you maybe also having seizures. Or do they know. I am dealing with a form of chronic pain, its in my elbows, and my neck. has to do with a fall or two I've had, that resulted in post concussion syndrome, and now I have chronic pain, I have gotten rid of the other problems but still have the problem of the neck pain that I can't seem to get to go away completely, and I will always have problems with my elbows that I've had dislocations in, thanks to falls. Donna |
Hey KateLynn, When I realized I had a chronic painful condition with no known cure (trigeminal neuropathic pain) I considered my husband my caregiver. We talk about what he sees, how he thinks I'm doing, whether he thinks I can complete tasks. I tell him if I'm having a really bad day so he can buffer things for me. So - find somebody who can stand to see your pain (some of my family members are in denial) and ask them to help you. Another life lesson I had to learn: be gracious in receiving. I was really good at giving but I felt that I would be "pitiful" if I had to ask for help. One other thing: Journal your daily life. When you're up to it, review it and see if maybe something triggers your pain. It'll also help you understand that you CAN make it through a day of hell.
Hope this helps. Janet from Tennessee |
Narcotics, caffeine and nicotine - then praying - then cussing-
Works for me! |
Cronic Pain- The Mind Game
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I've got RSD-CRPS since 1988. My story is after you travel your way thru the pain doc's, the meds, the depression, your left with yourself. It's such a mind game, how will I feel in the morning, can I go to a party this weekend, how many people have I let down.. YOU haven't, this is why I'm on this forum. You have to recreate yourself, stop beating your body up from things you can't control. Take one day, one hour, one minute at ah time. I have found out thru this group and people I've met here, I've wasted so much of my life it makes me sick The years lost, years on meds, things when I look at the photo albums I'm not there. Don't let this happen to you, fight for everyday you have. Has far as people in your life they love you for whats inside, not the pain... :grouphug:s, many hugs................. </IMG></IMG></IMG></IMG> |
Lady Frogy
Keep on Trucking, if you want to whine I have big shoulders and plenty of time... So write on, let it flow. And go give your hubby a big kiss:hug:
thinkin of ya.......... |
"Dealing with chronic pain... how do you cope?"
One day at a time... With meds, massage and plenty of rest... :) ~Jaime~ |
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I am the same way, I have not been in pictures for years. I take them or I am not there. I totally am with what sadly is saying.....we are great here....if I do say so myself.:D If you need shoulders.....we got plenty! |
Thank you for the support! You are too sweet! :grouphug:
I am having a rough time lately, I feel like my reflex sympathetic dystrophy is getting worse and worse. :mad: I have been majorly misunderstood by a friend who thinks that I should not take any medication for pain... and I am so upset over the situation. I am on narcotics, antidepressants and anticonvulsants, all to help with the pain. I know that Lyrica is working for me, and it makes me hope that with an increased dose I might get more pain relief. It has been pure hell for me lately, and I am in such severe pain. I try and not show it to anyone around me, but it is so hard to live with all this pain. Does anyone have ideas on explaining to a friend why you take meds when you have chronic pain? Thank you so much everybody for the hugs and kind kind words! Idealist~ hey that sounds like a great idea about setting goals. I will have to set teeny goals because of my pain and limitations. Thank you so much, everyone. I really was helped. And thank you SO much, sadlyme and Janet and Idealist. You all were a great help and I can't thank you enough. I can use your prayers and support right now, and can you please give me an idea on how to explain to my friend?? Thanks!!!!!!!!! :grouphug: |
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A schedule sounds like a good idea, except I think on my real bad pain days I would have to change it a little bit. Thank you! :hug: |
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Kate
OMGoodnes, first, you don't have to explain to anyone why you are on pain meds or anything else! Your sick, they're not. If they can't see the pain; maybe they should take a better look at your life. This is all to common with anyone who lives a life filled with pain. Always trying to please everyone, but YOU... I know where your at, I live your life, coping skills and mind games is all I have left. Take the weight off, let someone please you for once!
Thinkin of you,,,, |
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Suicidal
The intense pain in the soles of both of my feet (neuropathy) has caused me to think about ending my life when the pain causes me to not be able to think clearly, but reading about the awful pain and other difficulties that some of you endure makes me realise that it is possible to deal with much greater suffering than I endure. I wish the best for all of you, and I sincerely hope that you find relief!
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Hi Kate. First, I hope you are feeling better today and that things have worked out between you and your friend. Second, I want to let you know that I have just gone through something similiar, but with my DH. I also have MS, along with my spinal problems, but the MS pain is the worst :eek: He has always been so very supportive, and does understand that I am in pain. The worse I get, the MORE he understands. BUT, when he found out I started Oxycotin, all he could think if was "addictive and dangerous!!". He gave me his thoughts on it, and I had to do my explaining to help him understand. Now, being that he is my husband, I DO think I owe it to him, even if it is just to set him straight on the reality of narcotics. You DO become dependant one them, no doubt. But there is a big difference than being "addicted". We are using them for the right reason, and it's not to get high! And they are only dangerous if you are not monitored correctly, or if you are not taking them as rx'ed, crushing them, etc... Now, after I asked him what his point was that I would be dependant on them, well.... he did not have an answer :rolleyes: That was it! lol I agree you owe your friend nothing, well, except to remind her not to judge you unless she has been in your shoes. If you have explained your pain to her and that you are under a DOCTOR's CARE, and she still insists on judging you, I think it's a mute point. I hope you can keep your friendship either way though :) Best of luck to you! |
Coping...
I still have a difficult time coping with the pain from day to day. I had problems with my second Thoracic Outlet surgey and I developed RSD soon after. Now I am trying to learn how to cope with a whole new pain.
I find that if I try to keep moving which can be very hard to do on some day I don't get as stiff and than I don't have as bad of a deep muscle pain or joint pain as I would if I sat or stayed in bed for hour or days. I have many other medical conditions so there are some days that I can't do anything more than stay in my house and use heat packs and pain pills. Oh, and my Tens unit.. That and my meds... I can't leave those out..:rolleyes: I also started to see a psychiatrist and she has been such a blessing to me. I am able to talk about my pain and my fears to someone who doesn't judge me such as some of my friends or family. She also told me to try to go outside and sit in the sun for at least one hour a day. I can break that up into sessions of 15 to 20 min. I find that this helps with my depression and therefore it helps me to be able to try and cope with my pain. I also find that I have many friends here on neurotalk that have great ears and listen to me whine... :p I hope that you are able to find better days ahead... Many Gentle Hugs Dawn |
I have a odd way of coping....I work as a Hopice nurse. I can no longer work in the field (to physical). But I work 40 plus hours a week in the office as a clinical director, and trust me, my patients are much worse then I am (I have total body RSDS). When someone comes on our service, they have a terminal diagnosis with less then 6 months to live. So regardless of how I feel, I know that if I'm doing my job I can help someone find a painfree death in the comforts of their home.
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Oh by the way KateLynne, have you told your friend to go and pound sand yet?:D |
Hi Dolphin~
May God Bless you for the service you provide. My husband was dying of cancer last year and Hopice helped out so much. I knew my husband would want to die at home & Hopice made it possible. I was so impressed with them that when I die I am leaving almost all my money to them. I can't say enough good about them and have already raise a good bit of money that I donated to them when he died. You people are wonderful and most don't even know about it. I have even said I would do volunteer for them. I had to have 2 surgeries and just haven't got to the place that I have spare time yet. I moved and it takes forever to find everything. I would be glad to help sometime after this summer tho.
____ BC:) |
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twenty years...
After more than 20 years of severe pain, I have taken enough meds to choke a horse. While the never-ending pain drags depression around behind it, taking enough medication to knock you out makes you wonder why you were ever born!!! I just went through that. It wasn't until I got angry since I have no life (except in my dreams) that I began tossing some of the pills away...with the doc's help...keeping the most necessary ones to survive the pain. Guess I'll get back to the depression from pain when I get over being angry. It's just a merry-go-round.
sally |
Just saw this thread bumped up and wanted to post and thank everyone for the help and support. Over the past few months I have done well and had a positive attitude and was cheerful. But with the cold I am feeling worse and I now am depressed and the depression is just worsening.
I feel so alone and deserted. I live in my room for the most part. I have no life, I do next to nothing and I am always crying. I feel like I just lay in bed and rot. All I know is pain, I can barely walk or do anything. What is there to live for?! I mean, I am not suicidal at all, it is just the pain wearing on me. I feel lifeless. By the way, yes- I did tell the friend what I am going through. She apologized profusely and we are even better friends at this time. :) I have been crying just trying to write this, it is just so difficult to live anymore. I have been trying to go on with life and was doing fairly well with it, but it is now a different story. Thanks for listening. :hug: |
Meditation
There is a book that teaches meditative and stress management for chronic health issues called "Full Catastrophe Living" by Jon Kabat-Zin. The author uses a Buddhist type philosophy in a program that was tested in a medical facility. The Buddhists claim that it is not pain that causes suffering, but attachment to pain that causes suffering. I was reading it when I got my second whiplash, and it helped me tremendously.
I also find that creating meaning, and getting something positive out of negative situations is important. The last time I had an episode with my back, I sold my Chiropractor on a stress management class for his patients. After my first whiplash I had a seizure in my car, I found out that mobility impaired transit needed quality control, and put myself in charge of it. May you find peace within yourself, Janet Kaye |
want my device taken out
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Can you tell me who can help. |
Hi Sufie5139
Well, a Neurosurgeon put my stimulator in and my Orthosurgeon took it out, when he did my 7th back surgery. I would have went to him in the first place, if my husband had of been well, but he had brain and lung cancer. Thats why I went to a surgeon that lived closer to my home. I never wanted the Spinal stim anyway, because it contained metel wires. I was in misery from day 1 and lived with it for almost 1 year.
The only advice I can give, is you will just have to find a surgeon that is willing to take it out in the first place. The one that took mine out, was already my regular surgeon. It wasn't so simple tho. He ordered a Discogram that just put me in misery showing him I already needed another surgery. I was determined to get up the same day of surgery and do my best the fight this pain. It has worked pretty good for me this way. I do have to keep a positive attiude. I'm not saying this would work for everybody, but it has worked good for me. I hope the best of luck for you! Fancylady:) |
I have been in monster pain for 2 years---Seen tons of docs--specialist surgeons etc-----This one thought I could have this surgery on my back to relieve some of the pain I get in my lower back and legs---Appointment today and total disappointment------He says my spine is healthier than his-----He could make it worse that's about it-------------They started with Autoimmune with me---MS------maybe Lupus---Etc----Now the first explanation that comes outta the surgeons mouth looking at my records was MS--------I am so worried that they are just going to let me suffer------I can not even walk the pain is so great--
I just can't see living like this forever-----To some docs----The Pain meds are the worst---Because of addiction----My take is---Hey I was a Cop--In great shape played sports---Ran for miles--Lifted weights etc-----Get me outta pain--or lessen it and the we should worry about addiction------People who don't feel the pain-----And fell what works and doesn't don't care------------Sorry for the long pity poem------To the person in pain for 32 years may God Bless you---I could not do that------ Bless all who posted here.. |
Hi PJAMES~
I just want to say, I understand what you are saying. Have you ever went to a pain doctor? A good one might help you. There Is a medical name for them and I can't spell it. Help me out here gals! May God Bless You, and know others believe what you are saying.
Fancy:) |
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HUGSSSSSSSSSSSS to you great BIGGG HUGSSSSSSSS
I live with pain often, I work full time at fast paced on my feet job, I suffer with memory recall issues, balance issues, and stiffness, pain, and more pain. I am undxed!! I guess positive attitude when you can, let the tears out when you feel them, and making sure you are taking good care of YOU! Treating yourself, if stuck in bed, get some great books to read!! think of the things you still CAN do...less about what you cant. either way I understand the hard parts..and wanted mainly to give you HUGSSSSSSSSS,sarah |
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