Hi all, new here. Have an appointment with a new Rheumo in a few weeks thought this might help me track my symptoms before I go in. My favorite line from family friends and coworkers and even my hubby is "you are ALWAYS 'sick'...its just in your head. You just need to act normal and you'll be fine." What are the cringeworthy sayings you hear?
Hello I am also new to this site. Yes I have been told it's all in my head as well , or you don't look sick. I have lost so called friends as well as family . Have been dealing with fibromyalgia since 1998. Try to focus on what is needed to make you feel better. Take care.
And my favorite was my husband "my back is killing me and I my abdomen hurts" He was diagnosed with chronic back pain and birth defect 30 years ago. And 8 years ago nearly died from pancreantitis.
he hasnt worked since may 2014 his short term disability ended 13 months ago and he hasnt filed for SSDI yet. It took like 7 doctors 15 months and a bunch of test to tell him his chronic abdominal pain was caused by pancreatic damage from the critical case of pancreantitis. Yet he still has not filed. Because of his loss of income I tried to work 55-60 hours a week for three months. Then i woke up one morning and could barely get dressed to see my doctor. I was paid short term disability for 12weeks then denied my long term disability and terminated for medical reasons. No unemployment be cause i couldnt work. Praised god my pension pays for our home and basic utility.
As much as the things people are telling me they hear all the time hurt my heart for you all and for myself from when I hear them, I am glad to know that we are strong enough to end friendships with people that are not understanding or are downright cruel!!
Hi very new so not sure but one gets me all the time is suck it up and work through it. Hard when it comes from your father who I have looked up to and respect. Feel like I keep letting him down when I can't ignore the pain. Sorry not sure if that's what you guys looking for here cheers
My grandpa constantly days "You'll be get over this soon" even when he knows I've had CRPS since I was 11 and it is just getting worse He also like to say "chronic pain is not real, it is in your head, mind over matter" sometimes Its also not what people say, its what people do. Sometimes he will refuse to take me to Dr appointments because he thinks I dont need it. Some people will never understand, and eventually you just have to accept it.
It's probably been said already.. But how about... If u move more yourll feel better Get out of bed and see how u feel Get on a deit program that will make u feel better. Man..I'm.so tired of the bull..
'Are you still sick? ' umm yeah its a chronic condition. That actually means it won't get better. 'But you were ok yesterday! ' My housemate days this at least once a week. Drives me nuts! Sick of explaining ok days and bad days!
Met an old workmate today in the Supermarket the usual questions were aske hi how's you how's the family... I then just said aww I'm not too bad now but not been too good lately her reply to me was oh nothing changes for you then , I just stood with my mouth open thinking why ask me if you don't really wanna know ?? Next time I'm gonna be busy and in a hurry cannot for the life of me be bothered with people who don't want to try and understand what chronic pain is too wrapped up in themselves to care 😩
Fibrogirl I'm.with u. I have a friend who she. I first started going through this. She told me .."hey I don't understand how this disease works I don't know how your pain is different from any other.. But I know you so I want to understand " .I respected her so much for that. She did not put me down nor did she dismiss my pain. She was open to learning because she knew what I was experiencing was not normal. So now she is my biggest supporter.
If they are making suggestions based on the effort to help . it could be fine. However most times people make recommendations based on normal body functions. Such as just fight through nthe pain. Or if u keep going you'll get passed the pain. However if they recommend something like let me.come with u to the store and help u lift heavy products or can I come and help u wash dishes. These types of things take stress off you. And with less stress you may have the energy to go for a short walk or do an extra round of yoga or just simply enjoy an hour of low pain due to nkt having to over do things.
MeaganBlondie I am right there with you. Ive had CRPS since I was 13 and I am only 20. I constantly hear your too young for this. Or you have better things to worry about. I was constantly told by teachers oh its not that bad or just get over it. I think the worst was by my mother in law. She says I shouldnt let it control my life. She has no idea the pain and suffering I go through daily. She doesnt understand what I've lost to this terrible disease. Granted she said this because she doesnt think that I should give up on my dreamd and wants to see me succeed. Her heart really was in the right place but for lack of a better term she/is was ignorant of what really happened and what continues to happen. Some things I cant just up and change, and I thinks what hurts the most is being told to push yourself until you can no longer breathe and then they finally realize its not because you want to give up, its because you simply just cant, no matter how old you are..... 😞
I hate the negativity. My son's friend has been spendig weekends for over 6 years. And we met his parents briefly. Our car broke down in october and she told me to let her know if we needed something. So after 3 weeks, i swallowed my pride and she gave me a ride to the grocery store. She has been my best support ever since. We went to local art class and we chat on facebook. And she understands when i have to cancel lunch because i coul not sleep or my mefs make me have vertigo or the pain is too much for me to go out. She helps me find my abilities instead of focusing on what i can not due.
I really don't hear anything I would say as "negative" , I am fairly private with my discomforts and pain. I am super outgoing, but I don't share my stuff. I accepted along time ago that most normal human beings are really so wrapped up with what's happening in their world. That's okay, and quite normal for them. There are just a very few people with whom I will share, I know they support Terri, no matter what. I can not be the center of attention in my own world 24 hours a day.what really helps for me is trying to help someone else. Living with chronic pain is difficult already, I don't want to add to it. People that say that stuff, I don't think in my heart they are meaning to come across so mean or judgemental. I feel like they just don't have a point of reference , to have the ability to be empathetic. Living with this pain all the time, makes a person kind of self-centered. If all we do all day long is focus on how we are feeling, it is easy to become offended when other people appear or are less than verbally understanding. I hope this post makes sense, but if it offends you,please note that this is strictly my opinion. I am not saying that what people say does not hurt.
Terri, I'm glad that you are so up and front with your comments and there's a lot to be said. Being private about it is surely a good way to approach it. However, when in a wheelchair or powerchair, the questions and comments are coming anyway. I had an interesting situation. I was able to get out of those chairs for a few months and everyone in my congregation took it as a sign that I was completely okay. So, I told some that's not what it meant. But now that "I" could get out, they felt they could be my friend. When I felt that negative physical changes were coming, I told two and they honestly broke down into tears. I was so humbled by their sincere pain. They were devastated. One other thought I should have returned within a week or two of my shoulder surgery and was extremely judgmental.
An interesting point is that the judgmental one did not offer to spend the night with me when I get home from this knee replacement.
What I've learned is that not everyone is alike. There are always the judgmental ones. There a are those who really care but feel so much I pain for you that you decide to be more private to protect them. Then there's the little snit who asked me why I was back in my power chair. I simply told her I didn't feel like walking on that day.
Like I said , this is my opinion only. I have no judgments for any other human being in how they cope or how they feel. I personally have been one of those persons that have been onsaulted with a borage of health complains when I simply said to a woman//man " hey, How are you doing? I had no words to offer other than repeatedly telling them I am sorry they are hurting.. I repeatedly give suggestions but mainly that's not what they want to hear. Because that would mean they might have to do somethings differently or change meds. Or whatever. I am private about my pain, that's about me, I don't think there is ALOT to talk about. This is about Terri, I spoke freely about me and my experience, knowing someone was gonna get upset. I think about me all the time, I can easily swallow someone else's time and energy if I don't take care of myself. I have to stay as focused on solution and being available to others. I have worked very hard on my life's journey to be tolerant and patient with any human I come into contact with. We are all different. We handle pain, discomfort and stress differently. So I don't do what some others do!?... That's okay. I am not so delicate. My pain is validated, I have persons in my life that do support me and I have a lot of people in my life that don't give a shit about anything other than what's happening or how they feel. To my Catchmy pain fellow warriors and conquerers, I completely understand how hard it is with chronic pain. I completely support any way that you cope with your pain. I am sorry that people have hurt you or your feelings. I am sorry that you feel alone out there. I often feel that way myself. I am sooooooooo grateful for this pain app. / forums/ the people who I am getting to know. This particular place/app has ended a lot of my seclusion and isolation. I chose my username very carefully, Terrirulesnotmypain, is very significant to me.( for many many reason) Donamel, I did not know you are wheelchair bound, I don't know how that feels.I know from your texts that you carry ALOT of pain, physical and mental pain. I am sorry those people hurt you. When I get hurt like that ,I pray a lot! I love praying the St. Francis prayer...it helps me so much with disappointment and resentments. It helps me cope and helps me to remember its okay and carry on. I hope you still might consider me a friend...and I do care . Much love and Blessings, Terri
What I said was, (to the best of my memory lol) Terri I'm so glad you posted that!! When I was well, I was the one that everyone turned to when they needed to vent or complain. Some ppl called me only for that reason. They would literally suck the life right out of me. Because of that, I'm very careful about who I vent to. I don't want to be that person. I CAN be, and I'm very aware of that. So when ppl say those hurtful things that annoy the crap out of me, I either laugh it off or make an inappropriate joke that makes them uncomfortable enough to leave lol.... I use humor as my weapon AND my defense. I chalk their words up to them not knowing or understanding, and I try to move on. And even with that, I lost friends when I got sick. Not because I complained all the time, but because my world couldn't be centered around them 24/7. So THEY were the emotional vampires. But I don't want to be around ppl who are so stick inside themselves all the time that they can't see that I'm right there also. ❤ thank you Terri for saying that and understanding that side with me!!!!
"You're too young...." I'm 48 now, been in chronic pain since 21. "You should use..../do...." f*** you, you have no idea how many things I've tried, I think I know my own pain by now "I have back ache too" not chronic constant pain for 25+ years "I know how you feel" I feel like punching you
I say , I'm surviving. .. But please not .. people meet and acquaintances as fat as a courtesy question just like it saying hi do they really care about your family well did they send you a Christmas card birthday card invite you to dinner if not then when someone ask you that question I really don't want to know the answer they definitely don't want to hear all about your world because they have theirs I to tell you about. Simple fine ends it all.. you should have asked the rude lady, what do you mean? Do you truly care or want to hear it .. say it nice though .. in case they do... I also would say maybe.. if you ask to insult me please avoid me next time ya see me . Boom....
Terri, I know exactly what you mean. I usually don't talk about my health because I am afraid of bringing someone down. I don't think I should feel this way. I think people who need to talk should do so. That is what this forum is for. I come here because I love to offer a kind word to people when I can and let them know that they are cared for and that we can empathized with. I think that is my purpose. If no one talked, I guess I wouldn't reallY be needed. But I, like you keep most things to myself because one, I really don't want to add my negative problems to someone else's life. I say that because most people who are normal are weighed down with other things. And I feel that they have little time or interest in thinking of others. Plus, I think when we tell them our health problems, they just don't know what to say especially if we have told them more them once. They feel helpless. A nice person wants to help take it away and when they can't, they may try to avoid us because they don't know how to help and they don't know what to say the next time we bring it up. But I am also a firm believer in communicating to the ones we love what we are going through and how it is affecting us so they can imagine it and they can possibly have empathy. When I need to talk, here is where I will do it. I also like holding back on telling people about my health so that they can come to me and know that I will listen to them. That is just my thing. I try to help all my friends and new acquaintances, I usually get a good read on people and people talk to me. So I am afraid if I talk about my health, I will scare them off. I just like to focus on other people. It is my thing. It makes me happy. But in our condition, a lot of things are happening to our friends here. I understand their need to talk and share. That is what the group is here for. I like being here for all of you. So talk away. I hope I haven't offended anyone. I wasn't trying to. But I have a way of sticking my foot in my mouth without trying.
Lol, profiler, I completely understand what you are saying. ( about putting a foot in your mouth)I don't want to load my friends with all my little aches and pains , I am just not like that. I don't want to overwhelm them because really I can be quite needy if I let myself. Plus being a nurse I was the caregiver...etc .we all need those special people n our lives that we share with...I have a good little team of friends that I can do that with. Love and blessings, Terri