I feel like I just need to vent because I can not do that on a regular basis. I am a Military mommy of a 2 year old and a full time student. I feel like I have too much going on in my life to have Fibromyalgia. I cry sometimes because I want so badly for the people closest to me to understand, but they can't.The pain I feel on a daily basis is horrible but I have to force myself to wear a smile so that I don't annoy people with my complaining. For a very long time people thought that I was imagining my pain. Can someone tell me the best way to help those closet to me understand? It hurts me so much because I am not handicapped and don't want to be babied but I would like them to understand some things. For example, I would like to be able to sleep in on days that time allows. I would like them to be patient with me and not get frustrated. I hate when people think that I am using my pain as a crutch or an excuse. Can someone please let me know the right way to go about this because it sucks being emotionally hurt when you hurt physically everyday. :'(
I had the same problem getting people to understand the pain we are in everyday. I made a copy of this letter that I will copy on here and gave to everyone in my family. It helped some of my family to understand but there is still some that don't. I don't know where this letter came from I found it on a website and copied it. Hope this helps.
Hey this is just a little letter to let you know how I feel and it explains a lot of what I go through.
Fibromyalgia isn’t all in my head and it isn’t contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along. Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes.
I can't control how often I feel good or when I'm going to feel terrible. There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon.
I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was. Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm. Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying. Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real. Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains. I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be. I have problems sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I'm sure that's confusing to be around. All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational. I know I am, but I can't help it when it's happening.
That letter is perfect. It describes exactly how it is living with Fibromyalgia. Thank you so much!!
That really helps too. It is just so difficult because I have been trying to explain for so long. I think I need to look at my days like you do and learn from the previous days. Hopefully it will get better soon
Hi, I am a mommy of an active 4 year old boy, and with the right meds, relaxation techniques, some low impact exercise, change of diet, it does get better over time to manage this disease. I have my days when I can't even raise my arms and legs off the bed, but then I find the strength to get up and function as much as I can at the moment. I meet my body wherever it's at, daily, because my days vary, so I live moment to moment. I wish you all the best with your fibro. :)
Thank you so much. I hate the fact that other people have to go through this, but it is good having other people to relate to. I appreciate your comment much :)
Wonderful letter
Hi Josephine and Ir....here is the link to the "Spoon Theory"
It is really quite good.
Maria
I had the same problem, but it was with my mother, she was so critical of me and accused me of being a hypochondriac and drug seeking. But we started going to a wonderful church and several of the women Mom befriended had fibro, it was from listening to them that she came to understand what kept happening to me was real and the fog was real and not an act. I am so blessed and happy to have her now be understanding.
Thank you :) I have a feeling that this is what will probably end up happening to me. It is a shame, however, that this is what it has to come to.. I wish i just had their support and understanding from the beginning.
LOL to the Amen.. But I understand your situation considering it is almost identical to mine. I do cry to them sometimes because I cant help it. I have tried to explain just like u but it gets frustrating when i have to keep explaining. especially when they do not really want to listen.
your VERY RIGHT! i just wish it were a little easier than that. Thanks a bunch for the response!! :)
I agree!!
Have them read "The Spoon Theory" if you haven't read it you need to it explains a bad day. It also explains what we go threw on a daily basis. We all have those people who just don't get it. Good luck and remember to rest when you can and don't worry about pleasing everyone.
you sound like an amazing woman with going to school and raising your little one. Great to have you here!
Too bad your family won't read it but luckily mine did so everyone is different.
Think you might want to find a new best friend.......
I found a similar letter to friends of fibro sufferers and copied it. I gave out to family and friends and some drs. Sometimes I will refer to it when someone will say something I consider rude to get them back on track. It has helped a lot.
I just think people forget a lot because of how we look. I get told I look good a lot. I feel like crap most of the time. I guess it bothers me. I haven’t figured how to upload a picture with an iPad yet from FB or I would.
I like the letter idea.
I suggest that you print out conversations from this site and hand it to the people you want to listen. Sometimes people can "hear" stuff easier from strangers than friends or loved ones. There are plenty of threads dealing with specific pains or symptoms. I suggest you look them up and print out those that mirror your issues.
I really do feel for you. Your hands are so full. You deserve time to rest and recharge. You NEED time to rest and recharge. Your pain is not a crutch, it is a symptom of a very debilitating illness that you are unfortunate enough to have. If you believe in yourself and the symptoms you are suffering from, I believe that others will too, in time. And those who don't will probably fall away.
Good luck to you!
I agree with Mell. You absolutely are right!! I am grateful, however, that the people close to me do not have to go through what I do. I am also sorry that your best friend treated you that way.