Or trying to compare their pain to ours and wondering why we can't fight through it and do as much as they do?? I am really about to blow up at people and tell them off. We have nerve pain, they have muscle pain MUCH DIFFERENT>>>
18 Jul 2012
Dear painintheface, when I read your reply to ?ace rick? (sorry)... i was shocked, that could have been my answer to many questions I have been asked. I actually double checked the name and date of post to make sure it wasnt mine. Wow. And i feel for you and can understand some of the problems you are having with friends and family. I also especially like the statement... "Well you don't look sick, whats wrong with you anyway?" If I even choose to share information that is that personal to begin with and they come back at me with a line that is so insensitive and unthoughtful I seriously just walk away. Even though I can kinda understand some of the family problems you are having I will not say I understand the pain you have, even though I have the same disease. Because I think everyones pain is different and what you can tolerate and how you deal is different so noone can understand exactly how anyone with chronic pain feels.
And unfortunatley I have no great secret treatment or trick to tell you that will help, but I can tell you that you are not truely alone. That thought may help you or it may not. It does comfort me. My advice is to try to live each day to the fullest the best you can and have no regrets. And maybe some day the medical field will come up with something to help us to live pain free again. Good luck and God Bless you. If you would like or be interested in talking more thoroughly about all of our common traits, etc... I would like to very much. We could maybe exchange emails later. Hang in there!!! :-) Tooyoungohiomom
8 May 2011
I agree with you! I've Fibro and nerve pain, and people (most people) do not understand this type of pain at all, the constant stinging, etc. If one could "see" our pain it would look like Christmas Lights all over our bodies, other people use canes or walkers or you can see their disability, but people say to us, "You look fine to me", grrrrrrrrrrrr!
One good thing, is a doc that "gets it", do you have a doc that understands? And you can attempt to educate your friends and family by sending links regarding your condition. If they read it is up to them, if they don't, then try to let it go. Easier said than done, I know.
Best wishes to you, hope you feel better soon!
15 Apr 2013
I do totally understand where you are coming from.. I try to fight through and act as "normal" as everyone expects me to.. when I can. I try not to say too much but my close family knows or when I am literally in bed for days, too afraid to move, they know.. For the most part they are supportive but no one will ever understand this pain, unless they have the disease... that being said.. your question of family or friends understanding.. they can try but they never will.. I came on here looking for ppl that might.. Best Hopes and Understanding... you'r not alone..
18 Jul 2012
I too am disabled from 24/7 migraines that makes it impossible for me to commit to anything. I need 12 hours of sleep a night since my stroke (which caused the migraine) or the migraines get more terrible. And sometimes they get terrible (e.g. ER time) for no reason.
People often say to me, "You look so good." I do look better than I did before my stroke since I lost so much weight, plus the Botox injections to treat the migraines also make me look younger. I just say, "Thanks, but looks are deceiving." No one has ever questioned my pain. Maybe they would, but I often go into all my many treatments and pills that I take which shuts up everyone. My husband thinks that I shouldn't talk about it so much, but it does make the point that I have done everything I can to treat my migraines which still leaves me disabled.
You can talk about everything that you have tried. It does make people's heads spin and they don't want to talk about it anymore.
Just stand tall with your assertions about your pain and people will tend to believe you. If not, it's their problem.
18 Jul 2012
Woops answered this in the wrong place first time sorry,
Oh God so Im not the only one..And I am so so sorry for your pain... Sometimes I feel so alone, mine is Post Herpetic Neuralgia smack in the left front side of my chest, and I feel because its not visible then nobody understands but then how can they, they arent the ones in pain... I feel because I never really had the shingles rash and all my test have come back fine, ct scans of chest, mri's, breast ultrasounds, ekg, echocaridogram, nuclear stress test, cardiac cath, and numerous blood work, than Im looked at like Im a fool or its all in my head... Im so damn tired of it... my one Dr. wanted to send me to a psychiatrist I was like are you kidding me, I know what I feel, the 24/7 every second of every day of my life burning intense gnawing pain that is about to drive me is really there, Oh so I look fine on the outside I guess means that im not dying on the inside...
if they only could feel it for about five minutes then maybe they would understand but I doubt it cause then it would go away but if they could feel it like me for the last 2 1/2 yrs constantly, but I wouldnt wish this on my worst enemy..I'm so sick of Dr's putting me on all these damn pills that don't work, anti seizure meds, anti depressants but will they give me something for pain NO oh wait 500mg of Naproxen Really what a joke, I get sent out the door with another pill that they say will take 4 to 6 weeks to work, I go in crying my eyes out and leave the same way... I got one more shot at a Dr. who is supposed to be excellent and I pray he can help me as I am growing so tired.. I have a awesome family but how can they understand what they dont feel, Im still expected to put on that smile and pretend all is fine its so hard but I have been doing my best... God Bless You All who are dealing with this horrible horrible pain... shine..
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