Okay so I'm going to apologise in advanced for the whining.
Do my mother believes in most everything. She doesn't believe that my pain is as high as it is (she thinks that it is about a 7 when it is 9). She also doesn't believe me when I say I've had an acute episode (10/10 pain + muscle spasms).
Basically I had a period of time (about a month) where I wasn't having any acute episodes and ever since then, when I have them and she isn't there she won't believe I've had them. It was really tough on her when I was and do have them (up to twice a day) but I've had enough of her saying "no you haven't, you haven't had one in ages" and then when I say "yes I have I had one yesterday and 2 days ago...." she raises her voice and says "I don't want to hear it!"
Mother the non-believer I understand what you are saying about your mother. It is so hard not only our Mothers but other family members and friends to believe that we are not in pain because it is an Un seen condition that they can't see or visualize. It's also what medical personnel thinks also if you frequently come to the ER. You are called a frequent flyer, just there to score drugs. The only way to combat that is to keep a pain journal,or on this app it has a part that shows our pain levels,sorry can't remember what it's called. Lol I'm blaming it on my Fibro fog. That way you can say let me show you something Mom. It's a shame we have to have proof to show before anyone belive ' s us.
Reece, I'm sorry your mom doesn't believe you. Maybe she's afraid to, afraid there's going to be something else and she just doesn't want to deal with it. That doesn't help you and I'm not trying to make excuses for her either. I sometimes sense in my husband, that he hates thinking something else is going wrong. I know its bad when he takes his phone outside to talk. But I leave him alone to deal with it on his own. We're all here for you Reece! And I'm praying your mom will see one of your episodes if that's what it'll take for her to believe. Praying for strength and courage for you too. 🙏🌼
I'm sorry your mom didn't believe you. My dad also has chronic pain, so he's very understanding. My stepmom doesn't have chronic pain, and feels very guilty for not believing me when I said I was hurting. I usually have pain cycles, which are hard to explain to her. She's just never lived with them. I hope she learns to believe you. T
Pain is subjective. Only the person experiencing it knows how it feels. Unfortunately, there are so many people who don't believe our pain, since they have never dealt with it firsthand. Or just because you don't appear sick, they don't believe it. It's bad enough when conservative Dr.'s or people in general don't believe you, but I am sure it must be really hard when your own mother, whom you expect to support you, doesn't believe you. Sounds like she is in denial or just can't deal with it. While easier said than done, try not to waste your time and energy convincing those who don't believe you and try to focus on those who do believe and are knowledgeable about pain. Hopefully, you have a good doctor or pain management specialist who believes your pain and will give you the medicine you need. Also, if you have any other supportive family members or friends who will listen, try to turn to them for support. I am fortunate to have a great pain management specialist. You don't need to convince anyone you are in pain. If they don't believe you, that is their own issue. You know you are in pain, and as long as you find a good Dr. who supports you, that's what really matters. We are always here on this site for you too. We believe you!
Reece, I'm really sorry for your situation. It is very difficult when your family wont believe that you are in pain. I'm sure that she doesn't WANT to see you suffer and perhaps (and I'm not on her side or downplaying your problem) it may be HER coping mechanism to get through her pain of seeing her child suffer. I know I have family that doesnt believe when my pain levels are off the charts beccause they cant imagine how i could be up and about, etc... I had friends that are no longer around because they didn't want to hear it any more. Please know it happens more often than not because unless you are suffering, you can't fully understand and some people just flat out dont want to. I hope that being here and speaking to us helps you know that WE understand and that WE are here to listen and that you are NOT whining. Also, you will never, ever be alone. I will keep you in my prayers, Reece. I'm sorry this is happening to you, I know it hurts
Thank you all. Unfortunately I have a terrible pain management specialist, I despise her both due to her personality/attitude and her medical decisions. I have one good doctor who helps me but she can't help with my pain. I got the earliest appointment (in 2.5 months a.k.a. 10 weeks. 😢 ) I could to see her regarding several things including a refer to a new pain management specialist.
Not to sound short , my mother likes to touch me when I am in pain so now when I walk in and I hurt I let her know nicely. And as she goes to touch me I remind her that if she does I will smack her hands like you do a child. The first time I did that she just gave me stern look I reminded her that I was in pain she said I look fine I then replied nicely and I didn't tap your hand either. Got my point across without argument.
I'm sorry you're going threw that. I find that people who have not experienced extreme or chronic pain simply can't wrap their head around it. I've been telling myself for years that they (people like your mother, my father, my sister...) don't do it on purpose. I also tell myself that my pain makes me a better person. The fact that we can live our lives with our pain is nothing short of remarkable. Those who cannot see that probably couldn't do it themselves.
JJCM People who don't live with what we do don't understand. We have things that you can't see wrong with us which makes it hard to understand. I'm not making any excuses for anyone ,because I too have been looked at and treated like I was lying about the pain so I could get pain medications. I wouldn't wish this on my worst enemy. We reach a point in our lives of pain to reach down and live our lives anyway we can. The best advice I can give someone is to not give in to the pain because if you do and stop doing things in the house and in the yard. Is when you give up and into the pain. Where you get to where you can't do anything anymore. I know this because I did it I gave up and into the pain. It has taken me 12 years to realize this and to start trying to fight back and get to where I am a little stronger than I am now. Don't go crazy like I did to where your in the bed for 3-4days. But what ever level you are at please don't give in too it.
Reece, I know it's hard. The a couple of weeks ago when I came home with yet another diagnosis, My Father cut me to the quick when he said, you keep saying these things are wrong with you, you sound like your hypochondriac Grandfather... I was devistated. It is very hurtful. My Mother tries very hard to understand and I reminded her that when she would suffer from Migraines for days at a time. I told her to imagine her worst migraine, multiply the pain across her body and then think of being that way all day, every day without a break. She does feel bad, but unless you live it, you can't really wrap your head around it. Don't worry about ranting, that is what I am here for (That is what many of us are here for), so we can vent and have true support from others who truly underdstand because they suffer as well. Hang in there, Hon... You're never alone. You are always in my prayers.
Weezie, you have a good point. I was having to let go of things (walking, dancing, music, art, etc.) because I hurt no matter what I do. People were friendly but I just wanted to hurt a little less. Now I'm up and walking, doing the things I remember loving. I found out yesterday that someone was saying that I was faking it and just wanted attention. It was ironic because I really hate having a ton of people focus on me. Reece, I guess I have a different situation. My mom understands physical pain, but she is also bipolar. She claims she understands, then acts like nothing happened. She believes me, but it doesn't feel real. I hope someday your mom will understand through compassion. Good luck!
Reece ,Ferritbandit, and Alwayz I know that y'all have been hurt by these people who are supposed to love you unconditionally. I think it is so hard for people to belive the pain and all of different diagnosis that we as a group have had lately. All the different Dr.s, that we have to go to can seem like we are just looking for attention, or we are a hypochondriac. I am in no way making excuses for them at all. Because it is hurtful,and they can't really understand it. I hope some day soon that they will reconize that y'all are really hurting and not faking it. My husband was the worst when I first got hurt then diagnosed with Syringomyelia and then Fibromyalgia, he thought that I just didn't want anything to do with him anymore. Then he broke his rib and he was really hurting I asked him what his pain level was oh a 4, I told n him to try and live with a pain level n of a 9-10 24 7. He finally got it and stopped being mad at me and acusing me of running around on him. Sometimes it just takes time. I'm here for y'all any time you need to talk rant or rave about anything. Will be keeping you in my thoughts and prayers
I've had similar experience with doctors and specialists, they've not believed I've been in as much pain as I say I'm in. It's more than frustrating trying to get them to understand. Most have told me to just lose some weight. This makes me so angry as it's the medication that's out my weight on Mr to the stage now where I'm considered medically obese. I was average weight before my back problems started. They never listen. I'm fortunate to have a mum who supports me 100%. She helps me by taking my daughter to and picking her up from school. My parents and a couple of friends help by takin her to out of school activities to. So in that respect I'm really lucky. What I do struggle with is help within the home, my mum can't help me there as my dad has a serious heart condition and she doesn't want to leave him for to long which I understand completely. My friends either work full time or have disabilities themselves so can't help out either. It's my sons that are my problem. They can't seem to get there head around what I'm suffering with and how much pain I'm in. All I get from my eldest (who is training to be a Physio) is 'you look alright to me, you need to move more.' Insensitive I think. He tells me what sort of exercises I need to be doing, but that's rather difficult when I can't move. He normally ends up leaving after so long as he reckons he's not going to keep arguing with me. This upsets me greatly as he's had injury in the past and I never once told him I didn't believe he was in pain. I can remember driving round trying to find a late night chemist for him many times. He doesn't recall things like that, aparently that's different. He doesn't seem to realise the stress he's putting me under to. My other son who has ADHD, is more helpful, but I'm not sure he understands why I'm like I am. He's often helped me up if I've fallen and can't get up myself. He'll also get me a drink or something to eat when he remembers or if he's asked to. The only time he complains is if I ask him to do something and he's watching something on TV or playing an online game. He gets concerned when he sees me crying ( which I try not to do in front of my kids) he'll come over and ask what's wrong and gives me a hug which is painful. I love the fact he still hugs me but he doesn't understand that sometimes even thE slightest touch can send pain shooting through my body. He reacts to that and can go off on one of his tantrums. My 9 year old daughter does what she can for me. She tries to do more than she can actually do so I've had to have gentle words with her and more severe words with her brothers. Just because you can't see my pain doesn't mean I'm not in pain. I think I need this written on a placard so I can carry it around for people to see. To me it doesn't take a lot to listen to someone and say I believe you. I know I have a good support system round me, my mum is wonderful, I'm sorry for those who don't have the support they need. I wish you all luck inngettin through to your relatives and friends. Apologies for the long rant. I've not been able to type or anything for a while. Good luck everyone.
Thank you for all of the support everyone, I guess I just really need it right now and so do some of you from what you say :) I hope things improve for us all eventually and the sooner the better because I'm crumbling
Usually, if you can get one of your current doctors to call the new doctors nurse or office manager they will get you in much quicker. I am sorry your Mom is not being much more supportive that really sucks. I am always my daughters biggest advocate and supporter. You are very right about crappy pain mgmt. doctors. It seems that more often you have crappy quack pill mills before you are lucky enough to get a good doctor. Don't feel alone or that you are whining we are all here for each other.
I really Do know how hard it is for folks that don't suffer with the issues we have to understand what we go through. I don't fault them and I am not angry with them. It gets frustrating, yes, and sometimes it gets hurtful but I try to put myself in their position of not getting it and see how I would feel... Oh well... They are doing the best that they can with what they have. Thanks for showing me a different point of view though.