Dear folks, I have noticed that trying to go on with my life while in pain from this RA is very difficult , if not impossible. When the pain starts up in my joints I can't think about anything else. People talk about working through their pain, but I just can't imagine what that does to your life, your attitude towards things, it is impossible to think straight. Has anyone had this experience? How do you cope? What do you do?
Thanks, Lynda
Sorry to hear that you are finding it hard to cope, it is hard to think of anything else but the pain you are in and i sympathise with you.I let myself have a whole lot of self pity and then i get angry with feeling that way and get on with living my life. Take it easy when the pain is bad and spoil yourself without feeling guilty, when the pain is less do the things that you can do and try to not dwell on how you may feel tomorrow as it might not happen. Take one day at a time, live life to the fullest of your capabilities. You never asked for the pain or the RA so it isnt your fault you feel this way. Take care lisa Lynda - this disease also completely absorbs me at times, and there is nothing I can do about it. I too have no answers. Take care Cathy Edited because of frain bog. Hi Lynda.. I am sorry the pain is weighing you down. That is the only way to describe the pain associated with this disease. It is amazing how much our bodies tolerate. I know I have reached my breaking point with the pain and with that came the despair, frustration and isolation that this disease has made me feel. I just want you to know you are not alone at all especially here because we have all been to that place. I hope that you can feel better and get some relief. Big Hugs
Connie Right now I am not dealing well with the pain or the new discoveries. So, I can't even post something decent. Sorry, but I will read, and ponder what everyone else says. Love ya Lynda, shel
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Sorry that you are hurting and in pain. I guess people really just learn to work thru it. It is one of those situations where some people have no choice but to go out there and work. To all of those people...great big gentle hugs from me!!! Some people chose to work thru the pain because they don't want to be beat by it. It's like a mind over matter type of thing. I work thru pain (when I'm not on bedrest) when I do my house chores because well...I can't let it stop me from having my life. Eventually most people come to the realization that the pain is going to be part of them no matter what. We can control it and get it down to a low roar...but it will always be there. So do you sit around and mope about it and let life pass you by or do you get up and just say...ok...this is my reality...now let's get going with reality one day at a time. Being able to work thru pain and coming to grips with the fact that you have chronic pain is not easy and it does not happen overnight. There are times when you have to take the time to have a pity party for yourself. But like all parties...they must come to an end and regular life must go on. I really feel that the tolerance someone has to cope with pain fluctuates as the disease does. For instance...I have been at my wits end with pain for the last few days. Today I woke up...and I am able to deal with it better for some reason. Some of my coping suggestions are....reading...watching some mindless TV....getting online....hot baths...hot showers...snuggling hubby and kids...card games with the family...sometimes just really venting it out loud that I hurt...really anything to distract my brain. I was watching Danny play a video game last night and that was very distracting for me. Just take your time adjusting and coping with pain. You will eventually come to grips with it and kick it in the butt!! How do we communicate this? How do we shout at our loved ones 'I'm in screaming, unbarable, pain'? Yesterday, I felt my foot burning, it got worse and worse, and I couldn't walk, so I popped a pill, sat on the couch and waited, but my husband didn't know I was hurting and kept asking me to do things.......,(he's painting my kitchen cabinets and wanted me to get something for him out of the garage) I wanted to help him but, I finally just sat on the couch and said, "I can't as move my foot, leg and hip are killing me, right now'!!!!!!!!!! He understood completely, but I was blinded with pain and didn't want to say so????? do we hold up a flag that says, 'I'm hurting', This is a 10?? or this is a 3? , but I can't do the dishes? What do we say? Lynda
I don't post much but I do understand where you are at! For me when the pain becomes unbearable I call my Rummy. I let him know that what he is doing is not working. So now I am on Norco 10-325 as needed and Fentyal patches 75 mcg every 48 hours. When that does not work I will tell him again. As far as my husband, we have had many fights about this. I finallly told him that you accept me as I am or leave.............................. I have reached a point now that winning my claim with SSDI I have the right to say enough is enough. I told my husband last night that I do not care if your dinner is on the table when you get home. If it is be happy, if it is not then you know that I am in alot of pain. I have to take care of my self and my daughter, I can't waist anymore time or energy on people that can't or won't understand. So Lynda bless you I do understand. Sandra
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First of all...if you are in that much pain...call your doctor. I know you are tapering from the pred and you might have to up the dose again and start to taper back down again a little more slowly. Well, I don't shout at my loved ones lol. That gets me nowhere pretty darned fast lol. Altho I feel like shouting a lot of times...I don't. What works for us is just plain ole honesty. I sit down with Danny and tell him...hunny it's a really bad day for me today and I am sorry but I will only be able to help you out with a few things today. Then we sort out what it is he needs help with and I go from there. I sit down with my kids when they get home from school and tell them the same thing. You have to tell them you hurt. If you do not...then that causes a ton more frustration...anger...resentment...on everyone's part. It doesn't matter how many times a day...month...week...year...that you have to say I hurt. That is the nature of the disease. It changes as much as a model changes her catwalk outfits. It is more of a burden upon a family when there is no communication about pain. Or about anything for that fact of the matter. It is more of a burden on our caregivers if we do not ask them for help. If we don't ask for help then we cause ourselves way more pain and that in turn causes our care givers to work even harder taking care of us. Journaling how you feel about your pain is another great coping skill that I use. It gets out all those feelings and emotions and you feel about 10 lbs. lighter when you are done and all those feelings are purged. The bottom line is that there is nothing shameful about being in pain no matter how little or how much pain you are in. It just takes TIME on everyone's part (including our care givers) to learn how to cope with pain and manage it. Awww Lynda I am so sorry. I am also up front and just tell my family that mom's done for today. They are such a blessing to me. I also take Paxil and do highly recommend an Anti-Depressant as it has helped me so much. I second Gramma's suggestion of letting your Dr know that your pain is not under control. I plan things for (tomorrow) but most of the time tomorrow is no better than today but I then plan them again always keeping a goal for myself. I also saw a pain Psycologist for a time and he helped a lot with ideas. I will be praying for you and take care. Heres hoping that you get feeling better really soon!!! Thinkin and praying for you. Love ya
I'm talking about those of us who suffer and have suffered so much that we and our families are 'up to their ears in coping'! Pain takes over, gets your tongue all twisted up and you are hurting, scared and all of a sudden you say 'this isn't going away'!! Pop the pill and wait. WELL, that waiting is what I mean. I'm so glad you can communicate so well. I is a skill I need to work on. After being barely able to walk for 3 months with this stuff (add in the Heart operation), I found even my loving, caring husband, getting 'the fatigue' that our caregivers get. He wants me to be well, he wants his wife back. It has been a long road and I'm sure others have done this. It is just so hard to ask him to understand that I'm still not out of this!! Lynda
There is no one sound scream it from the rooftops answer to your question Lynda. You have to figure out what works for YOU in order to help you cope with the level of pain you are in. All we can do is give you some coping mechanisms and suggestions on how to cope with the pain. It is up to you to try them and see which ones best fit helping you cope. I do urge you to call your doctor because it seems to me and a couple of other people that posted that something is not right and your pain has really increased and we are concerned about that. Unfortunately...there is nothing that can be done but wait after you pop that pill for it to take effect. That is when you use your coping mechanisms....read..play cards...journal...watch some mindless show on the TV...etc. All of our partners want us back to the way we were but for most of us...it isn't going to happen so we have to help our partners know that and cope with that. We have to give them time to grieve and adjust to this new lifestyle also.
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Hi Lynda, I've been in the situation you've described for the last 3 years. I'm just now starting to come out of it and feel pretty good. It's been a long 3 years. I don't know how but from day one my DH has understood the complex cycle of pain, fatigue, and all consuming disease that's RA. He's been my hero. I'm not sure that the problem lies with your DH but within you. You haven't been able to communicate how you're feeling on a day to day basis with your DH. You have to let him know that you're in pain and can't golf, do housework, or whatever it is that you plan for the day. I can't golf 18 holes and my DH knows that so we golf 9 holes, or he golfs 9 and I do 7 if I run out of energy. 7 or 9 holes is better than nothing at all. I can't clean the house but I can dust, do dishes and he does the rest. I can put the clothes in the washer but I can't take them out because they're heavier when wet. So DH puts them in the dryer. I can't wash the vehicle but I can help dry it off and do a little of the inside cleaning. He does most of it. We've worked it out that I do what I can and he picks up the rest. Many days I can't do anything and that's ok. It's ok with me and my DH. Sometimes guilt raises it's ugly head and I have to fight it off. It's not easy. Don't let guilt take over. You've had this disease for too long to allow guilt into your life. There are times that I ignore the pain and do what needs to be done but in the long run I pay for it. I think we all do this. I'm infamous in this respect and work through the pain and then I'm down for several days or a week. This is just human nature. Talk with your husband. Each morning Stan and I have a short discussion about how I'm feeling. Based on that discussion our day is planned. Sometimes those plans don't include me because I'm in too much pain, but that's ok. It gives me alone time. Lynda, you're one of my favorite ladies and I know that you two can communicate well, but sometimes we just lose our way a little bit. Happens to all of us. Lindy Lynda, I can't say that I know how you are feeling, because I have not been in that much pain. I am so sorry that you feel so bad. But one thing I can relate to is that I hate having to say that I am hurting to my husband. I feel like I am complaining! What if you took Liz's advice and made a journal, everyday write down how you are feeling. Make it accessible to your loved ones, so that they can read it and you don't necessarily have to verbalize it to them. I don't know, this may be an "out there" idea. Lynda, first of all waiting until you are in severe pain to take pain meds is not a good idea. You need to stay ahead of the pain. You wait too long then the meds won't work As Gramma said a lot of dealing with this is mind over matter. You either decide to let the pain control you or not. It takes knowing your body and planning around it. It means taking active control of how you choose to live your life with this disease. I wish there was some magic solution to living with chronic pain but there isn't. Its digging deep sometimes and choosing not to give in. Its sometimes not talking about it cause talking won't change the situation. its finding something else to focus on so you won't dwell or wallow in the pain I know I'm not wording this very well... I wish I could write what I'm trying to say better..sorry Lynda, I can't say that I know how you are feeling, because I have not been in that much pain. I am so sorry that you feel so bad. But one thing I can relate to is that I hate having to say that I am hurting to my husband. I feel like I am complaining! What if you took Liz's advice and made a journal, everyday write down how you are feeling. Make it accessible to your loved ones, so that they can read it and you don't necessarily have to verbalize it to them. I don't know, this may be an "out there" idea. [/QUOTE] I'm kinda where you are Christina. Lynda: My RA so far is mild compared to others. But I've had some pretty bad flares. And I now have some limits that I never had before the dx. I too have trouble pulling wet clothes out of the washer and stuff like that, and moving my huge glass of tea that sits on my desk that I drink every day all day, from my left side to my right side, because my left is not strong enough any more to pick it up. There are days that I'm so tired and my feet joints are so swollen that it feels like i'm walking on rubber balls. Those are the days I get very very frustrated and tempted to ask "why me!". I have to agree about the mind-over-matter. I strongly feel that our attitude about it can directly effect how we feel. I tell myself every day, "I won't let it have me!" I spent the first couple of months after the dx feeling sorry for myself, and sometimes I still do allow myself a little pitty party. but like skittles said, all parties have to come to an end, and life goes on. I have finally accepted that I will never feel as good as I used to, I will never be as strong or as mobile as I used to be. I also accepted that I am important enough and matter enough to tell my loved ones, "hey, I'm hurting today, give me some space". and they usually do. Communication is so important. I really like the idea of daily journaling and have often thought of doing it myself. Try it, and be sure it's accessable to your caregivers and loved ones. I think it will better help them understand what you're going through and what you're feeling. But also as others have said, call your doctor and discuss your pain levels with him/her. If what you're taking is not cutting the mustard, try something else. Find what works for you and stick to it. I hope you feel better soon!! A tough topic...for me it makes a huge difference if the disease is in a pattern of relatively short flares or I'm stuck in a "neverending" flare. So far I've only experienced one "neverending" flair which occured early in my experience with RA. It is so much more difficult to deal with the pain when you feel that it might never end...that you might have to deal with it the rest of your life. I know what that feels like though more recently my RA has settled into a pattern where the flares are fairly short, usually less than a week or two. It's so much easier to deal with when you feel confident it will end soon. I don't think anyone who hasn't experienced for themselves the fear and anxiety that goes with chronic pain can't possibly understand and so are inclined to think that you can just "tough it out". Here's a few suggestions you might try. 1) find unique distractions that work for you: Watching TV doesn't work for me; I need something that forces me to focus. My favorite diversions are music (playing mandolin and writing music on the computer) and writing poems and stories. 2) get out of the house: I walk to the park and just spend some time allowing myselt to fully feel the pain but also focusing on other things I feel like the sun on my face, a cool breeze, the flickering light in the shadow of a tree, the texture of the ground, and what I hear, birds singing, children playing, the wind in the trees, etc. It helps me to keep the pain in the proper context; it matters a lot, but it's not the only thing I feel. 3) exercise (if the pain is below a certain threshold); not talking about arobic exercise, just stretching and movement; it helps dull the pain if it isn't too extreme 4) sharing with a friend: I have a few close friends and can share completely openly and honestly with...not my wife. I do share with my wife but if I unloaded on her every time it woud eventually lead to a situation where she was just as disabled as I am. It really helps to find someone else and give our spouses a break now and then...internet friends help but I don't think it's enough; often you need a human touch. 5) encourage your spouse to do things on their own that they enjoy: I think guilt increases our pain and it's easy to feel guilty if our spouse is sitting around because they don't feel they can leave us to do what they want. I encourage my wife to do things she enjoys without me. She is a long distance runner (...no chance I'm doing that!) I go along, give her a hug at the starting line, enjoy a cappuccino and read the newspaper, then cheer her on at the finish line. She feels good and I feel less guilty. I have my own things too, like playing in the orchestra. 6) find time to rest and deal with the fatigue: Fatigue increases and enhances the pain we feel. I find a quiet place to rest, meditate...whatever works for you. I've also found that NSAIDS, while they don't touch the joint pain, due relieve some of the fatigue and achiness. I hope these suggestions help and I hope you feel better soon. Alan
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Hi peddler and welcome to the board. You will find tons of support here with lots of caring and knowledgeable people. Plus the guys will be way happy to have another guy on the board!!! You might want to start a new topic to introduce yourself when you are comfortable doing that. No, you are not alone and much of what you are feeling and have gone thru is probably pretty normal. And always remember that there is no such thing as a stupid question. See ya around!! oh Lynda i feel the very same as you! I know exactly how yopu feel! I am already so sick of hearing myself say i dont feel good so i can imagine how people close to me feel about it. I had a great couple of weeks with little or no pain I really thought i was cured,and all was going to be well. Than i decided to decrease the prednisone. By only one mg and i am struggling again! But i got a tast of my old self those two weeks,and i have to HOPE that i will feel that way again. You were and still are a very active person. I only wish i had enough energy to do what you do in a day
kel Dear folks, I have noticed that trying to go on with my life while in pain from this RA is very difficult , if not impossible. When the pain starts up in my joints I can't think about anything else. People talk about working through their pain, but I just can't imagine what that does to your life, your attitude towards things, it is impossible to think straight. Has anyone had this experience? How do you cope? What do you do? Thanks, Lynda
I've been going through a lot of pain too. Mine is always worse in Spring and Fall. My family knows when I'm in pain and they are pretty good at helping me out when the pain is unbearable and I can't get off the couch. I do the same as someone else who posted that said "Mom's done for today." It is exhausting to keep saying "I can't" or "I'm in too much pain". It is very hard on me when my kids ask me to tuck them into bed and I can't because I can't go up the stairs. I see their faces frown and they give me a hug. Some days I can push through the pain better than others. Today is a day that I'm not pushing through it so well. I plan on resting on the couch and I have a dinner planned that will be very easy for my 14yr old to make when she gets home from school. I agree with everyone else who has said to call your doctor and let them know too. That was very hard for me to do as I don't like complaining but I did and now I can take some pain meds to get me through the worse of it. Good luck and I'll be praying for you!
Im a 48 year old male and started with very agressive RA about 12 years
ago and have tried a number of different treatments to no avail.
In particular I sympathise with all you in rotton pain. I cannot
describe properly how much pain I have suffered with this lousy
illness. It stopped me working 12 years ago and I thoroughly resent it
and the HUGE amount of pain associated with it. Its run rampant
throughout my body with so much continuous pain comparable to having
broken bones! (Ive had one or two!) Sorry my first post here is such a
moan, Like I say I could have written many of the other comments I have
read here. Its the first time my wife and I have read things
which fit our circumstances and feelings exactly.
Hope I may be able to contribute something positive in future.
Im grateful to all who have honestly written about how they feel, it really helps to know Im not alone.
Most people (not those close to us) dont understand how hard this can be.
I wish I could use Pred more but I had tummy ulcers way before I had RA
and find they REALLY agravate my stomach, even if I just take one dose
of 10mg!
Mtx didnt work for me, salazaphirine didnt, Athrotec (ancient) is most
usbable with LOTS of Kapake and the latest new wonder natural
cures, fish oil, mollases, green liped mussel etc. Its exasperating
isnt it??
Seeing my Rummy this week but feel apprehensive about what to try
next.... Got a great Doctor who is a great help, but need sosmething
magical .
Before I came across you guys Ive never heard people describe, brain
fog like I get, Fatigue (dont you hate it when people say "I get
tired too"? They have no idea!) and desperation of huge pain.
As a guy I prided myself on my strength and reliability, humiliating
when you cant pick the kettle up, or get out of the bath on your own!
To those of you who are also desperate dealing day to day with this,
your comments here are a great help, so dont stop or give up.
Thanks too for the kind message I recieved from here.
Ive just previewed my post and realised my spelling mistakes, but decided not to edit them..... brain fog
Hi sweet Lynda,
I am so sorry to hear you are not doing so good. You have received lots of great answers here but I shall throw my two cents worth in anyway, being a pain survivor. I consider myself a survivor because I have not run and jumped off a cliff,
I've had bad days, but I hope my pain never gets to be what you describe Lynda M. God bless you and I hope you have a breakthrough soon!
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