Pain seems like something that we were never prepared for as a child. As an adult and a nurse I know that there is always a reason for pain, but I never expected to have to live with it for the rest of my life.
I am 29 and have now been on disability for 4 months. I have my next doctor appointment on the 20th and I know he will ask if I am ready to go back to work. I don’t know if I will ever be ready to work again, or even live again. Here’s why: I am scared of being in pain. I fear pain so much that I choose not to go for a walk, I do not drive for too long, and take extra pain medication if I am going out. I do not know how to get past it. Everyone is saying to just “push through the pain.” How the heck does someone do that? I like to believe it is just said by people that do not understand fibro pain OR its said by those with the mental perseverance to handle the pain. They tell me to meditate - how can anyone meditate when they are in pain? They tell me I take too much pain medication - would they rather I stay curled up in bed or on the couch?
In summary, I do not have the mental fortitude to deal with the pain. The hopelessness of a lifetime of pain doesn’t appeal to me either. For the record, I am a tomboy, pain was never a big deal to me, but now, I cannot keep that tough guy attitude on all the time. I succumb to the pain and do not see an end in sight. With this in mind, how do I go back to work? It is a 45 minute drive each way, followed by a 12 hour night shift on a busy hospital floor - no thank you. Even modified duty and a desk job sounds painful. And what type of modifiers do I want - No sitting, standing or walking for more than 30 minutes?
How does everyone find the strength and perseverance to keep going everyday?
Hi Meow, I am so sorry you are having a difficult time. I know for me, I have a crazy fear of bees and I still flinch like a child in anticipation of a bee sting (that usually doesn't occur). Fear can be a powerful thing. For me, I try really hard to focus on all the blessings I have and keep my mind off of the fear. I do work a full time job that is quite demanding and it is difficult at times. But I find most of the time, by keeping my mind busy with the task at hand I forget about the fear of pain. I also do a lot of deep breathing exercises to stay centered, even when driving. The other thing I have done is research classes on mind / body connection. My healthcare plan offers a lot of resources and classes that focus on this, strategies to cope with pain / stress / fear / anger, etc. I know when I face a challenge, I try to break it into manageable pieces. If I decide I want to be more active, I will set a small goal (i.e. walk to the corner and back) and then slowly increase that. I usually find that once I am moving in a new direction it isn't as scary as I thought it would be. Anyway, just some of the things I do. Hugs!!!!!!!
It might help to talk to a therapist about finding the "mental fortitude" to deal with it.
What kind of pain medicine are you taking? What kind of pain do you have? Different types of pain need to be treated differently. I see a chiropractor regularly and have recently been getting trigger point injections for my shoulder which I injured a few years ago,
All my life I've felt like I was more sensitive to pain than other people. The way I cope is by not thinking about it. Keeping busy, but keeping in mind not to overdo it. Meditation NEVER worked for me either. I tell my doctors that I don't want to "get in touch with what my body is telling me" because it never has anything good to say!
Give us more details about your pain and your meds, and we'll be able to help you more.
I am so sorry to hear how difficult things are for you right now. Hugs x 10000000.
I so understand what you are talking about. I too have had the fear of pain through the fear of triggering a flare. I think most of us at sometime during this disease have felt that. One day I realized I wasn’t engaging in life so much as I was afraid that if I did certain activities such as throwing a dinner party or going for a long walk, or even dancing, I would trigger a flare. This fear was incredibly limiting to me. I had a big talk with self and decided for me that the joy of the activity, and time spent with friends and family outweighed the pain and the fear of the pain most times. Now, I still am somewhat cautious in not pushing myself too much, but I do engage in life more and deal with the pain when it comes. It is important to have strategies in place to deal with the pain, and each person is different in what will work for them. For me distractions with a combo of pain meds seems to do the trick most of the time. I am still working with my physician to manage the break through pain.
I use a lot of distractions to deal with pain. I have read studies that showed people who were engaged in video games and other mind engaging activities reported less pain than people who were not involved in an activity. I play games, do puzzles, watch a lot of comedies and read and listen to music, trying to engage several parts of my brain at the same time, to distract me from the pain. I also mediate, and yes it is not for everyone, but it works for me. I find that I meditate to just focus on one thing and only one thing, and that does calm my body and mind, and for me it is a good stress relief and I don’t feel the pain so acutely.
I think that you are the only one who can determine the right balance of activities you wish to do with keeping yourself safe and healthy and most importantly managing your pain. I think this process involves a lot of trial and error. There has been some great suggestions about getting outside assistance in addressing your concerns, and I encourage you to explore that option.
I send you huge hugs and hope you find that balance soon. Keep us posted in how you are doing. We are here for you!
I too work in the medical field, as a respiratory therapist. Twelve hour shifts really take it out of ya. My hospital offers 8 hour shifts, which helps a little. Maybe starting out on light duty is the way to go, or on shorter shifts. Perhaps they have an opening on a floor where the patients don’t require a high level of care. I am still learning to deal with pain management myself, so I don’t have much to offer for advice. Just know you aren’t alone. It’s ok to take things one day, one hour, or one minute at a time.
Thanks for the advice. I do try to set goals to go for walks or to do more everyday, but no matter the goal, the pain starts after half a block and just increases from there. I have tried music to get my mind off it and meditation. I do wish my healthcare plan had more resources for people, and I have a call out to ny insurance plan to find out if they have more for me.
I have a therapist and I will ask her to help me with that at our next session. We have worked on my anxiety, but I never really thought of it as a problem. As far as meds go, I take Tramadol 50mg, sometimes 2 tabs just to be able to get out of the house, and am also on Naproxeen 500mg twice a day. I am also on Lyrica and Cymbalta. My pain is different everywhere. My ribs and back is a sharp nagging pain, my hip and buttock shoot pain down my legs, my ankles and knees are very stiff and loosen up with movement but still ache and burn with activity. I have been seeing a chiropractor and he does TENS-like therapy, a massage water bed, and ultrasound and vibration therapy in addition to the adjustment. I have not seen an improvment with that. I will have to look into trigger point injections, but honestly do not know which ones are the worst, there seem to be too many. Thank you for the advice Liz.
Thank you Laurie for the sympathy, I definitely need to figure out what I can do in the hospital, maybe working in medical records, if they need manpower. I am glad you understand. As my therapist says, not never, just not now.
I completely agree with you, distractions are key to getting theough the day. I have my iPhone, and games and this support group within easy reach. I also watch TV, paint on occasion and even bought a coloring book. Anything to keep my hands and mind busy. I will try your version of meditating, maybe focusing on the most painful part of me and relaxing it will help. Thank you for the suggestion. Thank you for the hugs!
Honestly, sometimes I don't know how I get through the day and sometimes I can't. I work M-F 7:30am to 5pm with every other Tuesday off as it is a compressed schedule. I am taking medication that helps with my energy, but even some days that doesn't work. I think if you are not ready to go back to work, I hope your doctor will support you and meet you where you are at physically, emotionally and mentally. As far as mental perseverance, some days that doesn't even exist because of the pain and exhaustion. I often have to leave early some days or don't go to work because I know I'm not able to tolerate the hectic, busy day ahead. All I can say is, if you do decide you are ready to go back to work, have a plan for your day regarding breaks, pleasant activites to get your mind off of work on those breaks and build a network of support. I have a few coworkers that know about my diagnosis and when I'm feeling really overwhelmed or I just can't do it, I can talk with them and they help me with a few things on my plate. I am so thankful for them. One thing a coworker always says to me is, "Why are you expecting so much of yourself, give yourself a little slack!" On my lunch, I grab my Phone and listen to music for 30 minutes while I'm eating my lunch. It drowns out the hustle and bustle of the day and I don't focus on anything but the music. It reduces stress to have your mind occupied with something that makes you happy and puts you in a positive mood. I have a schedule for my breaks and I know what time I take them. I'm sending good thoughts your way and wishing you the best! : ) You are strong and you know your needs best. You are your best advocate! Talk with you soon.
You are so right Nykki. I should really listen to myself and know my own limits. I have many people that care a lot about me and put in their 2 cents regarding what I should do. But I really need to get my confidence back regarding my own care. I have thought about a different job position, perhaps as manager, but I am not sure if I want the stress of dealing with that. I might see if there is any educator position open. Thank you for your kind words and support. hugs
Hi Sara. I have a rheumatologist that does my disability and would probably renew my disability without any questions. Like I replied to Nykki, I have some backseat drivers that tell me to do modified duty and to push through the pain. That sounds ridiculous to me, but has made me question myself anyway. Being a nurse, even if I made time for breaks and meditation, that is just so hard to attain in a hospital when lives depend on me. I appreciate your input and I definitely agree that I need to be a better advocate for myself and to start ignoring those that are not helpful. Hard to ignore my parents thoughs. Thank you. hugs
Hi Lovett, I am in the beginning category I think. Just diagnosed in June of this year. I do not know what a flare is yet, but if it is worse than this, then I will be bedbound during one. Hugs back.
Hi avenk. I am hanging in there. Still have fear and anxiety in regards to being in pain, but I definitely feel much better with all the support this forum has provided me. I will definitely look into applying to some nursing schools, maybe more than one. I will have to bear with the process of getting back to my current job until I can get one. Thank you so much for your concern and support. I have to hang in here til I can get a better more achievable situation. Hugs.
I have had fibro for 30 years now and I am still scared as hell of the flares. I figured out the very early signs of the flares last year ( yeah, a little slow) and decided to tackle it with the first sign of it. We just started the season with the damp cold temperatures and I am woken in the middle of the night or early morning with knee pain. I throw my heating pad on and add more blankets. I made the mistake of going to a mall with a friend and staying a little too long. So 2 days later I huddled in fear ( I had already experienced pain while walking around the house) and kept the heating pad on all day. I stayed on the couch watching marathons, reading to my son or enjoying him read to me, and balancing my check book. The fear of pain can still paralyze me. Yes, I am a wimp!
