Fibromyalgia Sucks

United States
September 19, 2008 8:57pm CST
Usually I am there for people. I'm the one that listens and tells you it will be okay. Well today I feel like no one is there for me. I have fibromyalgia and I try really hard not to complain too much about it- but today I just have to say, this sucks. I hate feeling this way. I am grouchy and short tempered because I HURT!! I am in freaking pain and my husband can't seem to understand why I am not acting all happy and bubbly. When I try to smile and be sweet, it doesn't work because I am gritting my teeth, my nerve endings are screaming, and even my clothing hurts my skin. WHY do I have to put up with this? Does someone out there have fibro like me and can tell me what to do about my skin hurting? The pain pills don't seem to help.
1 person likes this
8 responses
• United States
20 Sep 08
First i have to say i love your name because its also my own. Its rare you find Shawna spelled that way. Second is that i so know what you are going through. I have fibro as well. The worst part for me is the skin hurting. I have a six year old niece who loves to horse play and i usually play with her but there are times where i cant stand to be touched. Its hard for her to understand and it makes me cry because i want to play but it just hurts to bad. Now the bad news i have no idea what to do to alleviate the pain. With me if i hurt i go to sleep because i don't feel anything while i sleep.
1 person likes this
• United States
20 Sep 08
The strangest thing about my name is that I have never met a Shawna older than myself! I cannot be the first one- so where did my parents get the name? They told me they wanted a boy and they had already picked the name Shawn. Today is day 3 of the hurting skin. My left hip, thigh and groin is where it hurts and I have been wearing a gauzy skirt for 3 days now. Crap. That is terrible that you have to make your niece keep away! My nephew is that age and I actually avoid visiting him when I feel bad, because it is impossible to explain to him why I can't play with him!
1 person likes this
• United States
20 Sep 08
Hi again to you ladies,have you guys ever tried to have the injections they give thru the back?I can't think of the name but I know it helped my husband....I wanna say cortizoin or something like that,I know it sucks when you have to depend on pills but sometimes you just gotta take them to function,I hope things go well for all of you who suffer with fibro,it really is hard to watch your loved ones hurt so bad,try to ask your Dr.'s about the shot it should relieve some of your pain,hope that this helped you both.~Samantha
1 person likes this
• United States
20 Sep 08
Its really a long story about how i was named. Short version would be it was a compromise. At work at my parents house taking care of my younger handicapped brother and my niece is there all the time so its hard to avoid her. I have tried coritizone shots before and they did not help. I would be fine for like a day or two then would hurt worse than before.
1 person likes this
• United States
20 Sep 08
LOL! {{Shawna}} I feel your pain I know what you mean; I too have that nasty problem along with many other pain issues and mega crappy health; I take Lyrica for mine about 4-6++ pills a day for it, not to mention the pain killers for my back/neck injuries; I take enough meds per day to choke a horse... is it raining there where you live or like a cold front of some sort?? that's usually when mine flares up the worst; I don't have to be nice and bubbly to anyone seeing as how I live alone thank God, I might just kill someone most days... like you said you just have to grit your teeth, try to occupy your mind on other things like the computer, using mylot or something, and when things get really really bad, just knock yourself out if you can... just know that you are not alone with this stuff, it is bad and it is REAL, and well I just had a brain fart ROTFL! forgot what I was gonna say guess my pills are kickin in after all...(G)! take care!!
1 person likes this
• United States
20 Sep 08
LOL brain fart! I say that too! The weather here is nice, but I know what you mean. Last week when Hurricane Gustave made it's way through Ohio and took down trees and power lines, it took me down too. I was in terrible pain and was eating my pain pills like candy! The skin pain is something else. The only thing different was I took a bubble bath and the skin pain started soon after. I am wondering if the bubble bath liquid irritated my skin and my brain decided that my skin should feel prickly and painful? Stupid Fibro.
• United States
21 Sep 08
Hey Shawna: Wow even a bubble bath bothered you? OUch! now that's awful! I don't know for sure what to say on that, you'd think that would be calming and relaxing but yes you might have to switch to something else; I wear the thinnest material for clothing, I can't stand things touching me either, and its just hard to explain to those that don't suffer with this; wearing a winter coat is just UNBEARABLE, but I have to have it on you know? Freeeeezing weather but its off of me as quickly as I can shed light of it; besides my neck can't stand the weight of a coat; This year my hair is driving me nuts too, and to think I used to have such long beautiful hair most of my life, then it got shorter, and shorter, and shorter, and as soon as I get paid next month, its going to get even shorter again, I cannot stand it touching my neck anymore...crazy isn't it? I really don't want to be bald headed but my thin hair touching me around my neck is driving me wild; we are a mess I think..(G)!
• United States
2 Oct 08
I too struggle with Fibro along with systemic lupus and it has been hell the last couple years. I was a phys. ed and health teacher and was forced to retire because of this stupid illness. I tried Lyrica but it didn't seem to do much and it also made me gain weight at an alarming rate. The weather is definately a trigger for me as well. I live in Northwest Ohio and the weather is constantly changing here. Today happens to be a bad day for me and all I can do is lay on the couch. I try to stay busy (like joining discussion groups,lol)but I just hurt everywhere. The other problem I have is with "brain fog". I feel like a moron sometimes..people I have known my entire life and I can't remember their name..TV shows my hubby says we've watched and I have NO recollection..I really HATE that part of it.
@elisa812 (3033)
• United States
20 Sep 08
I don't have fibromyalgia, so I guess I can't really give any advice, but I just wanted to say I'm sorry to hear how much you're suffering with it! I have just heard about how horribly painful it is, and I feel so bad that people like you have to go through it. I definitely wouldn't blame you for being grouchy when you're feeling that way! Sorry I can give any helpful suggestions, but I hope you'll be able to find something that works for you to relieve your pain and that you'll feel much better soon!! Hang in there! You're in my prayers
1 person likes this
@elisa812 (3033)
• United States
20 Sep 08
**sorry, meant to say "sorry I CAN'T give any helpful suggestions"!
1 person likes this
• United States
20 Sep 08
Thanks, you are sweet. Shoulder to cry on ... I feel a little better now! :)
1 person likes this
@nicholejade (2430)
• Canada
20 Sep 08
I know all too well what you feel like. I have a back injury and honestly sick of people telling me oh it's ok and I understand how you feel. Well sorry to burst your bubbles people if you don't got it you don't understand it. It's even hard to find people that have the same thing which many of us have and it's even harder to talk with family and friends about this as well. They just don't know what we are going through. They want us to be happy 24/7 and be the person we were before the diagnosis/injury and we just look at them like they are crazy. I am grouchy and short tempered exactly like you. I often cry because of the pain. I am honestly at my wits end with this since pain pills don't work at all but all the while gritty my teeth to be nice and friendly but in reality I just want to bite your head off. I am always here if you need to talk. It is not fun and I know what you are going through. With your skin hurting. I have found it's certain types of clothing or certain things that I wear. It's like they dig in and really cause it to ache. One big thing I found was pants brushing against my back is the worst or even underwear that are the string bikini. I found that using boy shorts (that come in womens of course and sweat pants that aren't too tight. That is one key make sure that it's not tight.
• United States
20 Sep 08
{{nicholejade}} AMEN SISTER AMEN!! I just read your response to this and had to pop in say I KNOW WHAT YOU MEAN...I TRULY DO!!! My idiot family is the worst, I've had most of my problems for YEARS now but yet Old Janice here is expected to do her part when it comes to people blowing in to visit, COOK ME SOME FOOD, FIX THIS FIX THAT, why didn't you bake a pie etc..etc..etc.. BEcause I don't FREAKIN FEEL GOOD that's why! I literally could just SERIOUSLY hurt some of my idiot family over this very thing..THEY DON'T GET IT!! ONE of my neices who is like 25 ( poooooooor dramaqueen baby) she works 'MAYBE" 6+ hours at her job in a day and whines that her feet hurt her, and her back hurts her and she's just in tooooooooooo much pain to help out with cookin, fixing dinner, washing the dishes I could go on and on and on and on...one of these days she will know the true meaning of PAIN, and Misery and not the whining she does in "her little head"...ugh!!!
• United States
20 Sep 08
Hi Shawna...I am sorry that you are in pain,it isn't something alot of people actually understand,my Husband was diagnosed almost 3 years ago with this and since then I have met people with it.It is a very painful disease that attacks your central nervous system,I hope your Hubby will actually see the pain you are going through and want to help you,I know I was in denial when my Husband said he had it I thought he was faking cause he wanted to be lazy,then I looked it up and realized how bad this is going to get.You will have better days then some,but do not over do things on your good days cause you will have many days of suffering after that if you go all out cause you feel good.I can be a shoulder to lean on if you want I am a good listner as well as a good talker,I hope your spirits are lifted I understand what you are dealing with,I live in Florida I am a Mother of 4 beautiful children and a wife of a disabled Husband...things are tough but remember the lord doesn't give us what we can't handle,unfortuanatly that comes with ups and downs,just remember you are not alone and there are people out here who do care,I wish you the best of luck and hope your pain goes away,miracles do happen and I will keep you in my prayers take care hun~Samantha
• United States
20 Sep 08
Thanks for your care and understanding. Your husband is lucky to have you. I am not sure about the shots- my pain moves around too much for a shot to help. From what I have been reading, they are figuring that Fibromyalgia pain is caused by a chemical problem in the brain. Our bodies are usually not really injured at the pain site, the brain "thinks" it is and reads the slightest touch or movement as being painful. They have found chemical deficiencies and overages in the brains of Fibro patients. They have even used MRIs to show a certain area of the brain being WAY overactive. I hope they find the cure soon, I am not yet 40 and I have 40 more years of this?!?!! I am feeling a bit better today....
1 person likes this
• United States
28 Sep 08
I totally know what you are going through.I have fibro too. I have good days and bad days.The bad days really suck.Besides being in pain I have no energy. The worst part is that because fibro isn't visible to people they tend to think it isn't so bad.If fibro showed on the outside and revealed itself people would be shocked at we have to live with. I have days pain meds don't do anything either.Have you tried any other meds like lycria?
• United States
29 Sep 08
Yes, I took Lyrica for 6 months last winter and it made me sleep about 12 hours a day and caused me to gain 30 pounds even though I was only eating 1500 calories a day. It helped the pain but I couldn't tolerate the side effects. My husband said that it made me a zombie. I tell people that Lyrica does help, but it wasn't right for me. My doc also had me try cymbalta. I had a bad reaction to it so that only lasted 2 days for me. I saw a commercial once that showed purple bruises representing the pain of Fibro and it was a perfect example of what you are saying. The skin pain that started this conversation finally went away after a few days- thanks!
@Hatley (164654)
• Garden Grove, California
20 Sep 08
shawna hi although I do not have fibromyalgia I have a pretty good sense of how miserable it feels. I am just recovering from shingles on half of my abdomen,and the nerve pain was really awful, all summer long I suffered through it and finally its about gone.I know how hard it was for me to be cheerful when just wearing clothes was painful.YOu dont have to put up with it 'though as you have to go b ack to your doctor and say this medication is not working, put me on something that will help. or refer me to another doctor who can help me. I know there are a lot of others who have the s ame thing, and so there has to be some medications and medical help that will help you. So get onto your doctor to see that you are made comfortableagain, and if he orshe cannot do it, seek someone who is really an expert in fibromyalgia. also check the web for medical info that could help you. good luck, and Godbless.
• United States
20 Sep 08
YEP that's it! I had shingles about 8 years ago and suffered postherpetic neuralgia after the rash was gone. I was prescribed neurontin and took it for two years. The skin pain I had the past 48 hours feels exactly like shingles!! It's funny because when I first felt it, I kept pulling down my pants and looking for the rash on my hip and thigh. Hubby thinks I'm nuts. It turns out that Lyrica is the same class of medication as the neurontin. I took Lyrica last winter and it did help the pain but I slept 12 or more hours a day and gained a bunch of weight so I had to stop taking it. I do have a really good doctor- a rheumatologist, and he tries to comply with all of my wishes. The skin pain is just something that can't seem to be helped. It is finally fading away and I am able to wear underwear and shorts now.
@fury2525 (139)
• United States
21 Oct 08
Hi fellow pain sufferer, I have a long list of health issues, most are pain causerers, but today i will talk with you of this horrible illness. First if you can get a REAL doctor to recongize it, you are in step one.... and he listens to you ...... and maybe you can get some help. But for me i get the joy(not) of going to a free clinic since i cannot work and so far cannot get disability due to ignorance of doctors and lawyers, but that part is another story. ( weak laugh) Sometimes my skin feels like someone has removed several layers of skin and when my finacee just wants to carcess me i feel like i want to scream!!!! One thing i can suggest, even if you have to do it several times, sit down and talk with your husband, no tv on or any other distractions, and you know he is listening to you... Tell him in your best way, what is it, what it attacks in your body, and most important how it makes you feel...( like with me all the time) I seldom have one day without pain. Don't get discouranged hon, most people will not either believe you or not understand. Go to as many websites as you can get all the information , i have made up several folders on my illnesses and i am constantly updating them. Sit down and let your hubby read it with you and then let him ask any questions. I will try and help you all i can with what i know and have info on, if you would like any? You can write to me at fury12458@gmail.com I too am very grouchy, which is probably calling it mildly, snort. When you have a good day and i know there are few and in btw. Make that time to do something with him that won't hurt you, but so he can see he's not losing the woman he fell in love with. In Dec last yr my finacee moved in with me, we have been going together now for 4 yrs and 8 months. My fibromyalgia got 10 times worse and when your loved one is just visiting you for like 2 weeks at a time, its different he doesnt see all of your bad days, I am blessed, he is such a help for me. Now we have are bad days, all couples do no matter how much they love each other. But we always make up and talk about it. Talking is what kept us together all of this time. And we had big things to overcome. We met online, and trust me we had no support from anyone. But here we are and making it work. All our other friends online we were going together fell apart. Another thing, look for other alternative ways to relieve the pain some. I can tell you some i have tried, but you Must always check with your doctor first and/or a pharmacist. One woman from a sewing group i belong to i told the group i was suffering from fibro, and she said she was too, and told me a book to read on it. I can tell you the name and author if you like. I know first hand how hard it is, and how easy it would be to just give up ... Don't you arent alone and i care, i know im probably not much. But i am here and i am holding out my hand to you. The rest is up to you, sincerely, Lish in Ky