do you get this

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Q&A | Fibromyalgia Support - Family Members | do you get this

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Name: Tim Title of Question: do you get this

Question: I was diagnosed in feb 06,for about two years Ive had this horribble pain off and on. Whenever, I try to express my symptoms to my family they respond with " Oh! yeah! I know what you mean my shoulder hurts too!--or maybe thats what I have because my leg hurts! It is very frustrating to share my newfound life with them as I don"t think they really get it.. I sense that they trust me to be telling the truth but maybe they are at a loss to help.. How many of you get these generic answers???? ?

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Name: donna | Date: June 19, 2006, 7:30

Answer: all the time. my friends & family do not really understand this at all, except for one. Her mother & another friend have FMS and she understnds what I am going through. When I mentioned to someone at work about my sleep disorder same thing, "oh, I think that's my problem too". It sometimes just sounds so belittling. I try to not let it get to me, but some days it's hard. My mother in law is not well, pretty much housebound, so with all the problems there, my husband really does not want to hear about my problems too. He can't handle having his mother sick all the time. I've tried to tell her that I can't visit as often because I don't feel well, but as far as she is concerned, since no one is sick as she is, we should all suck it up & do our duty. =

Name: Tim | Date: June 21, 2006, 9:04

Answer: Donna , thanks for responding. My best freind thinks that I don't appreciate him because I don't go visit much anymore, I am tired of trying to explain to everybody what this is like , and of course its only human nature for them to try to relate to it through there own experiences of pain. Like trying to explain what an orange tastes like to someone who has never tried one, only one way to know and I don't wish this condition on anyone. My wife has been there for me all the way, she doesn't baby me, but she does not underestimate the pain. It's a trust issue, she trusts me to know that I'm not over eggagerating it. I hope you can get more respect from your family and freinds that this is who you are now .. as all of the rest of us know.. =

Name: Chris | Date: June 21, 2006, 15:11

Answer: Hi Tim; I know a few doctors I'd wish this on! =

Name: Colleen | Date: June 30, 2006, 22:46

Answer: Hi Tim,I completely understand.For about 10 years I've known something was wrong with me.I don't have insurance and was going through the system at Charity hospital,and everyone thought I was wasting my time ,that it would soon pass.I knew better.They were taking test and ruling out certain things,and I think I was getting close to a diagnosis.I live in New Orleans and as you most likely know hurricane Katrina hit us.I and my husband,sister and mother [74 yrs.old]evacuated to my Monster in laws house.Every time no one was in ear shot she would say things like "oh you just use that fake pain as a crutch".Well a fight insued and she kicked us all out during hurricane. [Real nice lady that she is].Anyway the hospital was ruined along with the paperwork.Well I did find a Dr. who diagnosed me and is treating me.And I was so glad to have a name for this pain.I know it is so hard to try to explain to people how you feel.Mostly I find most people have never heard of it before.And since we look pretty much healthy they think we just complain.Sometimes I can see in their faces that they aren't even really listening.Like you are a hypercondriact or something.Especially my husband.Know I just tell them to look it up.And I no longer care what my husband and his mother think.The stress I was under during that hurricane was so bad I cried every night in pain.Try not to get stressed to much,to me stress is the worst trigger.Good luck to you and take care of you !!!! =

Name: AmberRose | Date: September 24, 2006, 22:58

Answer: I totally know what you mean! My father in law is just like that! He thinks we get the same pain becaise hes old and i have fibromyalgia......i dont really think people quite get it...my parents fortuanlty understand a little but better and my dad is researching more about it as i was just diagnosed..he wants to know as much as he can to help me out! god bless him! i wish more people would do that. The may not get empathetic but the could be a little sympathetic about the whole thing.And of course no one knows what anyone goes through unless they've been through it as well. =

Name: Virg | Date: September 25, 2006, 0:23

Answer: Hi Tim, oh yes thats the beginning of handling FMS with others. You yourself are so new to it that it makes you shake your head when someone says they have it and you know what they do in life sometimes would be hard for you to do. Also we don't look like we're really suffering so people don't take it seriously and refer to themselves. Just keep on going to the doctor to handle the symptoms but again study FMS so you don't get put on too many drugs. Get tested to continue to rule things out. Print out the symptoms and give it to those who may need it. Join a Fibro support group and stick with this forum. It takes awhile to get the copy catters to understand your situation is real and different. All the best, hang in there. =

Name: rachelr | Date: October 4, 2006, 12:25

Answer: The unfortunate reality is that we look 'normal'. If we're around people, family, etc. and we're clean and presentable, everyone says we look great. Ergo, not sick. It's really frustrating. =

Name: JenV | Date: March 13, 2007, 1:32

Answer: Tim The answer is yes..I have been hearing this for 13 years from my mother and past signifigant others. Recently I lost my father and my job for missing to much work for the ICU and his death. I got really sick to the point of barely able to walk (my worst fibro flair ever!)...even the bottom of my feet hurt..almost like my feet were to big for my muscles among my calves, knees and thighs....my mother had to drive me to my orthopedic doctor at the third day of more missed work. It was then that she finally "got it!" She still thinks if I do this or that that it will go away though (shes an occupational therapist) in the begining she told me it was in my head. I am sorry that you are going through this as so many of us do. Keep educating your friends and loved ones, dont give up on it. Find a doctor that is not afraid to treat this, dismissing addiction....it will always be there so addiciton is not a concern as to your comfort as long as you dont abuse it. I dont know how you feel about the stronger drugs but it has helped me some...more than anyother treatment so far. I go to an Orthopedic. It helps if people "get it" but if they dont I believe the trust you feel is a start.... ask for their help in all aspects, they sound like they want to help...try to keep your stress level to a minimum and hang in there! Worrying and walking around frustrated does not help...trust me I know! :) =

Name: Robin1237 | Date: September 20, 2007, 6:00

Answer: Ok , I know what we've all got -- we've got Lyme disease, a bacterial infection that inflames our nerves and soft tissues.Go to www.lymenet.org/FlashDiscussion/MedicalQuestions and read what people are discussing. You can also post there and people will respond. They can help you find a Lyme-testing/treating doc. Colleen -- there is someone on there named Geneal. She is from New Orleans and I believe she got Lyme after Katrina. You can click on the directory, put her name in, and then pm(private message) her . And yes, we do look normal, but we're anything but normal, with a raging bacterial infection inside of us, generally acquired from being bitten by an infected tick, but can also come from being bitten by other insects, as well as through human transmission. We generally need antibiotics, and people are also trying all kinds of other treatments. Just got to read up on it and decide what you want to try. =