OMG....will it ever go away!

General
1

Hey everyone!

I know I have not been on here much lately. It seems like my mom is less understanding these days. Just need to talk for a bit.

It makes me sad that she doesn't seem to understand or care any more. I try not to bother her with it and pretend I am ok when i'm not. There are times when I just want to go to her house and ask her for a hug and tell me everything is going to be ok. But she saves that for my younger sister..always something wrong with her. :(

There is a drastic change in the weather today. I woke up about 4 this morning and i hurt from my head to my feet. The pain in my feet, under my feet and in my toes makes it so hard to walk. My muscles all feel like they are on fire, my hips, knees, shoulders ... this is a first for me to have this much pain, and a headache to go along with it. I can ask does it ever end, but i already know the answer. Not much to look forward to when you hurt just sitting, unable to lay down because that hurts, tired and not thinking straight. I feel like I am only a portion of the person I was. I don't like feeling like this. Since so many people don't seem to understand this, you feel very isolated, alone, and lonely. My kids try to understand but I try not to show it in front of them. I don't want them to worry.

Sorry..just had to get a bit out, i have more but i need to find a box of Kleenex. I love you all.

Gentle Hugs

Dawn

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Sometimes I get into fights with my mom too, cause we are both in pain and it gets stressful but the one thing you need to always remember is shes your mom, she loves and cares about you and that won't ever change! You need to sit down with her and tell her all this, shes your mom you can tell her anything.

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Thank you Holly, I try to remind her what this is like, but I think because she can't see me, it doesn't mean as much. If she could have seen me this morning and even now, she would know i am in high pain mode. My relationship with my mom I wish was different. If she doesn't want to talk about things, she shuts me down, changes the subject or just gets up and walks away. I try and that is all i can do.

Gentle Hugs Holly

Dawn

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Dawn I just want to give u a great big giant gentle HUG. I dont live close to my mom however any time I need her she is always there. My husband and I had ti move n with my mother n law after my fb got so bad I couldnt work. Even tho I no she doesnt get it she is so sempathetic to me. She helps with my youngest daughter who is 8 and my youngest grandson who is 1 so my oldest daughter can go ti school and so I can spend this time with him. We all need just one person to talk to and vent an d just listen. This sight is the only place iv found that I can truly get that. Gentle Hugs

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hi there, I hear you and I have had fibro for 30 years now and everyday is hard and to get people to understand and believe you hurts so bad, along with all the pain you r already going thru.Even some doctors don't believe it exists.Everyday is a chalenge as you go to bed and hoping the next day will be better and you get up not rested but feeling like you just climbed mount everest.The weathe barometric pressure cahnges really affects fibro and dampness, humidity,etc, and yes the good ole' Ibs that acts up all the time and feels like labor pains...and i could go on and on but you know what i'm saying. one thing i found that really helps is a memory foam Mattress topper at least 3 inches or more and put it on top of your mattress and your pressure points are more relaved and you actually sllep and it helps your body feel a bit better the next day as that half of the battle.u can get it at Zellers and they will take it back if u don't like it,but i know you will.I'm always close by so let me know how your doing and i do hope you feel better soon and that mom comes around for you as i was lucky i had both mine and my kids were older and helped the best they could....Soft hugs

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Awwwwww, Dawn, gentle hugs to you --> { { {HUGS!} } }

I know you desperately need them today. I hate to say it but it sounds like your younger sister may be following your path of fibro. And apparently your mother doesn't have enough sympathy go around. So come here! WE understand, we GET it, because we're living it too. Right now, as i type to you, my left knee is in terrible pain and i can barely walk but I still have to go out tomorrow and deliver meals. See? Fibro puts us in such a dilemma when we have to do day to day things. And worst of all, most people don't understand and think we're just shirking our duties. Oh man, they don't realize how much EXTRA effort we have put into everything, just to keep on keeping on. If only they understood how hard we work to get by, to walk, to get up and get dressed...but nope, they don't. Again, come here. We do. I wish none of us had this illness so none of us had to talk about it but that's not the way it is, so here we are for you.

Oddly enough, headaches and fibro seem to go together. Usually they are migraines. I know that people have discussed the topic here before, plus what they do and take to help them. If you go to the top of this page, there is a search bar for our fibro group. If you type in a subject, like "migraines," you'll get a list of all of the conversations dealing with the topic you picked. It's very useful sometimes, as a lot of valuable info is in there.

Dawn, some moms just aren't made for hugs and sweet talk. Mine wasn't for years and years. it's tough when you have fibro to not have someone to go to who can reassure you. Are any of your kids old enough to listen and to offer some sympathy/support? I'm imagining an adult child, actually, as my son is good at giving me some sympathy when it's needed, which is why I asked. If not, then what about a friend? If not, why then, just ask us as we'll give you sympathy and support. Your pain is acknowledged here and your suffering is validated. You are free to just "be" in here, nothing more.

Wish i could give you a real hug to help you on your bad days but please accept my sympathy, as i understand how rough a road we travel. You take care and come again, so we can help you.

Fondly,

Petunia

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*gentle hugs* Yep like the others have said, we get it. My mom is currently living with me and she has fibro too though we don't think she has Ehlers Danlos Syndrome. We think that came from my Dad. However, I would like for her to get that checked out to be sure. Fibro seems to have some likelihood of recurring in families but EDS is genetic and passed down for sure. I think a lot of people with fibro also have EDS but I'm not a doctor and that's just my opinion. It's very hard to hurt and not have support. We do care here and we do know what you're going through.

hugs

Susan W aka Waters

http://waterswaves.blogspot.com/

PS Petunia if you see this. You asked about my blog on another thread. It's not on this site it's on blogger and I feel bad for not posting it on the fibro group yet but I may post about fibro and such and will post those on the group but my blog is set up so I can write about anything so am doing it on blogger.

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Thank you Callie, it's just me and my two youngest here. My younger sister lives in Sioux Falls as well but if she doesn't have bronchitis, she has a kidney infection, or something else, so my mom is always there for her. I am so thankful for this site, it is by far the best. Thank you for listening and understanding, that means a lot to me.

Gentle Hugs.

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Hey Jackie, It's funny you mentioned the memory foam mattress topper. I was thinking about that this morning when I could barely get out of bed wondering if that would help. I am going to look into that. I feel like I have climbed Mt Everest more nights than not. The temps here are going below zero and the wind chills at headed down to -40 or colder. The pain just hasn't let up. I sucked it up and did what I absolutely had to..the rest can wait. Now they closed all the schools around here due to the cold. UUGGHH can't seem to catch a break.

Gentle Hugs

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Hey Petunia, You always have such good and supportive thoughts. My mom is all about my younger sister, who always get bronchitis and kidney infections. My older 3 sons are not talking to me, even though I continue to send out invites to come over for a meal. That is thanks to that POS sperm donor of a "dad" they have. That doesn't help either. It hurts that no matter how hard I try, and that I keep trying to contact them, all I get in return is silence. Unfortunately, that silence speaks volumes. Today is horrible and it is going way down in the deep freeze tonight and tomorrow with wind chill warnings for -40 wind chills and lower. The schools around here all closed for the day tomorrow. I am so glad you and everyone else is here and I thank God for this site. At least it doesn't feel like I am totally alone in this. It's hard for my younger kids to understand, although they are 8 and 13. We have just been through so much I think my illness is an overload for them. I am trying to make this a safe and comfortable home for them and when I am hurting this bad, it's difficult at best to get meals ready, etc.

Thank you Petunia, I wish I could gentle hug you back for real.

Gentle Hugs

Dawn

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Thank you Susan, Like i said before i am thankful for this site. Here there are people who truly understand what it is like to have fibro and all the different things that go along with it. I get this nagging headache, enough to be bothersome, but I cannot take anything like Tylenol or Advil due to other meds I am taking. The only thing I have for the pain is oxycotin. I don't like to take that because it makes me really sleepy and sometimes upsets my stomach. I am grateful for all my friends here, we understand each other and give each other support. That means so much to me.

Gentle Hugs

Dawn

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Dawn, great big HUG ! I would give you a hug for sure !!! Oh how I wish your mom would just put her arms around you and say I don’t always know what your feeling… But maybe this hug will help,
Ah , sometimes I just grab my son and hug him and say I love you… Even though he does not understand what I’m going through… I need it more than he does, ( he’s 19 ) my daughter who is older… Hugs me and its so nice. They don’t understand & they can’t make it go away, but a hug goes a long way.
I can’t imagine having to care for children… Are your kids young ?
We sure understand your pain, and I do think this change in temp, has caused me more pain, because this Am for the first time in a long time I had trouble getting out of bed, I actually laid there and thought, just don’t move, because movement just sent my pain through the ceiling !! And it gets so hard to feel so much pain day, after day, and family and friends just don’t get it.
We are here for you !!! We get it ! When you feel isolated and alone, just log on and read some discussions,
Hang in there… But we also understand that isolated, lonely nag.
Many Hugs & blessings
dee

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No need to apologize at all. Having Fibro is a pain in more ways than one. I truly understand how difficult it is for you as my family doesn't really understand the pains that affect us daily. The hardest thing as a mom, is to have this dreadful disease and not be able to lay down and rest when our bodies really need it. I still work full time, but take naps throughout my day (lunch break) and early evening naps so I can spend some time with family and friends.

I will also tell you that the barometric pressure and the sudden changes in the weather, definitely affects my pain levels. Its difficult not to become irritable and grumpy when the pain is as bad as it is, but I try my best to remember that it's no one's fault that I have FMS, some people will never understand, but I know I have my friends that really do understand and care as well as family. I turn to Jesus and prayer to get me through the worst of my pain.

I will add you to my prayer list, Dawn. Blessings and Gentle Hugs,

Carlene

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I am so sorry Dawn. Know that all of us here understand and are sending hugs your way.

I agree with "restless". Having fibro is a pain in every way. My husband is great but even he says "you'll feel better soon". He doesn't understand that this doesn't go away....you just learn to live with it. I have had Fibro for over 30 years. My doctors think it was caused by injuries...a 20 ft fall when I was just 3, falling down stairs at 21 and a recent fall off a stool seems to have kicked it up to major pain. I am hoping that it is caused from injuries so that I don't have to worry about my daughter getting it. Unfortunately a lot of family members don't understand it. Sometimes I think that us being ill is so depressing to them also that they just want us to feel better so they can feel better. I am lucky to only work part time but some days even that is hard to get through. My fellow workers don't get it either. They seem to think it will just go away in time. I finally got tired of trying to explain it to them and suggested they look it up on the computer. I was thinking about applying for disability since I am old enough to get Social Security but I have heard how hard it is to get it.

I know that changes in the weather can affect our pain levels. I tried a warm bath with epsom salts last night for the first time and was surprised how good it felt afterwards. I like the idea of a memory foam mattress topper, it sure should help those tender spots.

I have not been a part of this group for very long but just want everyone to know how much it helps to be able to talk to people that understand what we are all going through. It helps to keep my sanity on a really bad day.

Love and prayers to you all.

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Hi Dawn,

To me this is the #1 worst part of having FMS or any "invisible" illness - the difficulties with loved ones.

We want and need them to listen and support us, but a lot of times I think that others don't know how to help. They don't realize that just listening can make all the difference for us--like you said, we just want a hug from our mom sometimes. I also think many times others are in denial about us being sick, not because they don't care, but because they can't handle seeing us this way. It's easier for them to think if they don't acknowledge it, then this horrible thing can't be happening. Unfortunately, that's the last thing we need.

We all isolate ourselves when chronically ill, and without that understanding from those around us, it can become incredibly lonely. We need to talk about it, otherwise the stress and fears of living with this every day becomes overwhelming.

Thankfully, we have support from people here, who understand and care. Without this group, I don't have anyone to talk to about it other than my husband, and trust me; he is as sick of hearing about it as I am. So just hang out with us, share whatever is on your mind, and I promise we will always be here to listen.

Hugs-
Renie♥

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Hi Dawn, I wish I was there to hug you and let you know that I recognize your pain is real. Like you I have an unsympathetic mother. Every time I am in so much pain that I can't find any position that doesn't make me almost cry in pain my mother will say, it's JUST a fibro flare, it will be gone in a day or two. As if recognizing it is a flare makes it hurt any less. I find I get the loving support from my friends at church. Several of them have fibromyalgia as well so they recognize when I am in pain just as I do with them so when we hug not only is it gentle, but there is a whispered I can see you are hurting today, I'm so sorry.

Isn't it strange that we have to look outside our family for understanding?

I am glad you found this sight it is wonderful. I don't put in a lot but I do read it and that helps me.

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Hi bookjunkie, Thank you for your words, it feels good inside to know that others understand and care about this illness. I don't work and I am on disability SSDI, I take a number of different meds. i was in an abuisve relationship that ended when he went to jail and my kids and I went to a shelter. Between the abuse and my 2nd car accident they think that is what triggered the fibro. He was driving on the second accident and all he cared about was his friend in the back seat and his car, He never asked about me at all. I went through almost 3 years of hell..and it was so subtle I never realized what was going on til it was too late and I was too weak mentally to break away. He took control of my money..and basically ruined me financially. But that is a whole different story.

The wind chills here today are touching at -40 at times. I have hot water heat and I live on the side of the building the wind hits, and I am barely maintaining 69 degrees. I hate to have to go buy a heater, but might have to. I have layers on to stay warm but I am hurting almost like yesterday. I don't like my clothes touching me because I it feels "sore".

Gentle Hugs

Dawn

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Thank you Renie.

Your words touched my heart and are exactly how I feel. This site is wonderful. Everyone here is living with this and understand how complicated this is. I have severe recurring depression, ptsd, anxiety, restless legs, chronic fatigue syndrome and what ever else. I can't even remember. That is something else that I find very frustrating is not being able to remember things, Twice yesterday I went into a room and forgot why. That is so upsetting.

My hands and arms are hurting, making it hard to type. I am so thankful for you and everyone here. It would be really difficult without all of you.

Gentle Hugs

Dawn

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Thank you soonersmile

It is really sad that we need to go outside our family to find others who understand. It hurts when you try to talk about it and you get "shut off" by them. I also don't like the fact that some people minimize or don't accept the fact that this is very real and the pain is almost unbearable at times. It makes me so sad. Some days all I do it sit here and cry when I am home by myself.

I would write more, but my hands and arms are hurting and seems i am backspacing more than going forward. I feel like i backspace more than go forward in life as well.

Gentle Hugs

Dawn

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You dont have to be tough all the time sister! Its okay to let it show. Sometimes are loved ones really dont know whats wrong with us when we are in so much pain and if we dont tell them, we cant expect them to understand. Just be honest with them, they are your family, they should at least try to understand and be compassionate. Keep smiling and get your sunshine in today, it helps with depression. :)