How to make others understand..

Have your boy friend read these posts. I am 69 years old and am a male with fibromyalgia and have had it since about 1980. It has been really tough for me as it has been a lot of years. My family still does not want to hear when I hurt and I go lay down as the pain med HYDROCODONE barely takes the edge off of the pain. What keeps me going is my family and my grand children. I take it one day at a time and try to be happy as much as I can.

Bill

Brooklyn, I relate to what you're saying. I feel the same way. I'm only 31 and feel like I'm 50 sometimes. I just don't understand why this had to happen to ME.

I used to be so lively and fun and it's gone away. I'm just not as happy-go-lucky anymore. I am scared for my future with this disease. I don't know how much more I could take.

My husband tries to understand but he just doesn't... he listens (half-heartedly) and says "yeah. I'm sure it's tough." But it's not enough. I ask for help around the house and don't get it. I have three kids and a full-time AND part-time job. I talked to him about quitting my full-time job so I could rest more and not be so bogged down and he said, "Ummm. No!" I don't want to jeopardize my marriage but at some point I'm going to have to quit working so much and take it easier on myself regardless what he says. I can't keep doing it all.

Sorry to vent but I just wanted to let you know... I get it. It makes you sad, frustrated, unheard, angry, and lonely.

-Mache

I was diagnosed with fibro about two weeks ago after 18 months of tests. The tests were mainly for rhuematiod arthritus as my father has it and could be hieredatory i've had x-rays, bone scans, blood tests and all the time this has been going on i was not prescribed any medication. my doctor told me he would have to be advised by my rhuematologist she did not know what was wrong with me so i hit a brick wall. i have a list of symptoms two pages long but not all the symptoms came at once i have accumilated most of them over the years without realising they are all linked. for instance i can trace my insomnia back to when i was in my mid teens and also depression, anxiety, and panic attacks but did not get any treatment for depression until my late twenties. also a very low pain threshold, very painfull headaches, constant earache and jaw pain i saw several doctors and a dentist about the jaw pain and earache, one doctor told me its bad circulation another told me tinitus another just shrugged his shoulders and said i don't know and the dentist told me my jaw could be out of line. then theres other things like heamaroids, diarrorhea, constipation which came on in my mid twenties. the back pain started in my late twenties along with unrefreshed sleep, lack of concentration, and finding myself staring into space thinking about how i am going to perform a simple everyday task. and finally then came the pain pins and needles like i've never felt before numbness in hands and feet, sore skin,waking up feeling like i got flu without the runny nose, sharp stabbing pains all over, frozen shoulder, restless legs, muscle spasms, poor balance, forgetfullness, dizziness, cramps, violent tremors in my legs, and to top it all off waking up before i actually get to sleep with chest pains feeling like i'm having a heart attack. the last two years have been a nightmare i have been off sick from work for a year now my rheumatoligist told me they don't need to see me again and with right meds i should be fine within a year. my doctor has told me to quit work and does not foresee me getting any better. i'd like to beleive the rheumatologist but she said one of meds being used for treatment is amotryptalin hydrochloride which i was prescribed when i was depressed i had to come off them because i just felt spaced out all the time and could not function. so here i am still in limbo. well thats it from me hope other people get a bit more help than i did.

good post, thanks for post

I just read your post and it brought tears to my eyes. You are so young to be going through this! Your fiancee sounds amazing to be so supportive. I too am blessed to have a partner that is understanding and supportive.

I, like you, am also newly diagnosed. For me it has been barely 3 months since the diagnosis, and less then a year since the symptoms started. This is all very new to me as well. I just wanted to reach out and tell you that you are not alone.

I found your comment about Incontinence interesting. I have suffered that symptom for some time. I always thought it was related to either my Interstitial Cystisis or the fact that I've had 4 kids. Lol! It is quite embarrassing when you sneeze or cough and wet yourself. I couldn't (in the past) go out and jump on the trampoline with my kids without a pad on because I would leak. I've tried doing Kegels to strengthen the muscles up down there and it doesn't seem to help. Have you found anything that does?

im not sure how this forum works quite yet.. i just joined recently and this is my first time really using it. but i am 21 years old and i was diagnosed with fm about five months ago.. living with this disease has been a day to day struggle. there are days where its hard for me to even get out of bed. my fiance' and i also recently just found out that i am pregnant... only six weeks along.. and so i had to stop almost all treatment for my fm syptoms. the only thing i am aloud to take for it is my pain medication. which does very little for all my sypmtoms. i tried lyrica, cymbalta, and savella... and all three of them made me so tired and loopy that i wasnt able to care for my daughter. so i had to reduce to all the meds that were just treating my other symptoms. i wish there was one pill for everthing. i never knew that any disease could cause so many awful syptoms. insomnia... which explains why i am on this forum right now instead of sleeping. especially when my daughter will be waking up in just a couple hours. restless legs.. which is not only painful and extremely frustrating and uncomfortable.. but i think its the main cause of my insomnia. i think i have actually gotten to the point where i am used to having much sleep. Even when i do sleep i dont feel rested when i wake up..i walk around all day in this fog. its hard for me to remember dates and times of appointments.. even if i just got off the phone with the doctor. i have just in the last few months had to accumulate several calendars and posits.. to make sure i always have something available for me to write something i need to remember down. i have a 20 month old daughter who is my world. and since i developed this dibilitatiing disease i have not been able to care for her on my own like i used to. its hard for me to bathe her and play with her.. its even hard to for me to carry her around most of the time. i know that all of this is very personal but i just need to get this all out.. and i would much appreciate it if someone would reply and maybe give me some advice.. im allll ears. about a month ago i developed a new symptom.. that i actually didnt even know was a symptom until i started getting on line and reading about fm. INCONTINANCE. whish is not only completely humiliating for someone my age.. or any age for that matter but it is so frustrating and a constant mess. and now i worry that with this pregnancy its going to be even worse. all you mothers know how babies love to sit on your bladder. i also have exteme weakness. fatigue. tingling like pins and needles in my feet and sometimes in my hands. my legs are def. my main tender points... it hurts to even touch them sometimes. it hurts to just play around with my daughter. her little legs and hands are just too much for me. i cry so much over all this. i dont know how to deal with it.. or how to manage it. i dont know that i have even excepted it yet. this disease just came in and took my life away.. i was in cosmotolegy school whcih has always been my dream. and fm took that away from me too. i dont want pitty.. i feel as though i give enough of that to myself sometimes. i just want someone who understands... someone who knows how i feeel to talk to about it with.. i only know two other people with thie disease and i rarely see or get to talk to either one of them...i feel so bad for my fiance'. he is my rock and he completely supports me in every way.. he helps me in every way he can and he believes that fibro is a real condition. i am very thankful for that and for him.. but for some reason that just doesnt feel like enough.. i guess maybe its because he doesnt actually have the disease. there are so many things that i feel daily that i cannot even put into words for anyone to understand... even a doctor. i already have a bulging disc in my cervical spine from a car accident when i was 14.. that has always caused me pain. i have scoliosis. and i have delt with severe anxiety since i was a child. panic attacks and throwing up.. losing weight at a rapid unhealthy pace. but all of that is out of my control. just like this disease. i just dont feel like i am getting the help that i need. and i dont feel like i am understood. even when people tell me that its going to be ok or that they understand... and they are sorry. all of those words mean nothing to me. i am in a rut that i cant seem to get out of. there are days where i just dont even want to be here.. and the only thing that keeps me going is my daughter my unborn child and my beloved fiance'. i just need answers.. and support.. i need someone to tell me how to get this under control. because no one can battle this disease alone.. even if they are the strongest person in the world. it effects your entire body and mind. it changes you in some way. it robs you of your independence, which i have always so vigerously struggled for. anyways.. i hope to hear back from someone.. even if its just a hello. i feel alone out here. thanks for listening. even if you dont.

My name is shellie. The best advice I can give you is to have him read this site or explain that is it real. My family don't want to hear about me hurting the way I do. I think it is because they love me so much that it hurts them. You are not alone, we all understand how you feel. Sometimes they need time to realize that your not faking it. My soon to be ex husband will never realize it. I went to his house to see my kids and he saw the medicine I was on for that morning. I think it is now kind of sinking in that I'm sick. You need support though. I hope this helps. Feel free to ask anyone anything and if we can help we will try.
Love,
Shellie

Hello,
I am new here, I am 24, I was diagnosed a couple of years ago and after being on a handful of medications I am just watching my diet and staying healthy. Although it doesn't always help combat the pain or help me sleep, it's how I am doing it.
My mother understands my situation, she has MS, so there are some similarities.
My boyfriend on the other hand doesn't understand and it seems like he thinks my pain is in my head. He thinks if I forget that I hurt, or put it out of my mind then everything will be fine and I won't hurt. I have tried to explain it to him, but it doesn't make sense. How do I do this? My pain is not in my head. I am not lying, it is there and it hurts. It huts worse in the winter months and he doesn't believe me.
I'm at a loss of what to do, and could use some advice from people who have dealt with this more than I have...

Thanks,
Adrianne