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Fibro Frustrations

Mar 17, 2016 12:19 AM

It seems I have burned a few bridges with people because of my pain. My flare ups have become more intense and more frequent and I turn to friends, family, and fb to vent. Not for pity but for prayers. For sympathy and empathy. So everyone knows what I'm going through and not to expect greatness from me on those days because getting out of bed and muddling through the day is hard enough. I've been unfriended from fb by some, others ask if I'm ever okay (sarcastically).

Unfortunately that is my life now. I can't help it. I take my meds regularly and I work and try to be active but it is what it is. I'm doing my part to not be miserable believe me. But I'm in pain all the time. On good days I'm a 3-4 but the fibromyalgia has affected not only my muscles externally but also internally, making it hard to breathe during flare ups (8-10 on a pain scale) because my chest tightens up. I have irritable bowl syndrome (IBS) on top of endometriosis and polycistic ovarian syndrome (PCOS) so my "baby making factory is broken" and my gut/uterus/ovaries usually hurt. Did I mention I'm on meds for that too? Of course I am!

Apparently fibromyalgia can do a number on allergies too. I don't know the connection but I can attest to it. I've never struggled with allergies. Now I have to go through a whole allergy med regimen in order to not have an asthma attack when I go to clients' houses. I'm on Rx flonase, singulair, arnuity, and I have a rescue inhaler and I still need to take OTC allergy meds like Claritin D during high allergen days. I have chronic sinus infections that feel like my head is going to explode and my face and jaw have been hit by a sledgehammer. I get sick easier and stay sick longer. Lucky me!

I'm exhausted because I usually can't sleep for the pain and then when I do fall asleep I wake up throughout the night because I feel paralyzed and can't move. It feels like my spine has solidified in my sleep. it hurts to change positions or my arm is numb or the whole half of my body is numb from my belly button down. I'm forgetful, sometimes words just escape me and I tell Bub things like, "put your dirty laundry in the...the...the...the fridge." When they say you experience fibro-fog it's a real thing! I used to think it was all BS but it's not unfortunately.

It sucks. Literally. It literally sucks the life out of you. I don't know if fibromyalgia is my only issue. I'm waiting to get an MRI done to see if there's something going on with my back or if it's just muscular because of the fibro. Rheumatology says no RA, no Lupus. Only osteoarthritis of the spine and fibromyalgia. I don't know.

I don't even know what my point is in writing this. I guess it's because I can't sleep (as usual) and I want to be understood. I try not to be a burden or a complainer in real life and I think I do a pretty good job of getting through it with a smile on my face but my fb and my people are where I let my walls down and take off the mask and i get frustrated when they just don't get it.

Mar 17, 2016 12:29 AM

I to have Fibro and it does have a horribl e feeling in my body. One day it hurts here and there and by mid morning I'm begging God to help me. I keep it to myself as family has pulled away. My hubby has patience with me, but sometimes I saying gosh I hurt,bye ignored my complaints. it makes me sad because my grown kids don't care at all. I'm so sorry you suffer so badly, I honestly understand. One thing that makes me feel better is a nice heating blanket on all my sore muscles and joints. My Prayers for you. Im on Facebook to.

Mar 17, 2016 12:46 AM

I'm 33 so my kids are 11 and 12 and still require a lot. Well not a lot since they're not little little but still. I'm a special ed teacher during the day and a behavior therapist after hours until 6 each night. My job is physically demanding, more so than an office job or regular ed teaching job so to exercise like the Dr's say is or of the question after a day's work. My husband also works 2 jobs so he's not home to help until a lot and we can't afford for me to not work so I just keep pushing through.

Mar 17, 2016 2:53 PM

Hello- it's been awhile since I've been to the site.
I really hate to say this,...because I don't wish the pain with those of us that have to deal with it, but? I'm so, so glad I'm not the only one who suffers from this.
However, I truly understand where you're coming from in relation to losing friends or family turning away. "My, God is that all you can do is wine about hurting"?
Or what ,? You don't think I hurt too?" Or the threats from hubby to have my bags packed if the house isn't clean by the time he's home from work." Or, pack my bags instead if house isn't clean. "
Is he for real? Don't you think if I had the energy let alone didn' hurt. That I would waste that on packing his bags? No, I believe I would use that rare occasion to clean.
So, all in all, I truly hear where you're coming from. But, I think along with most, I WISH, people would understand and not judge. Keep your chin up!

Mar 17, 2016 3:10 PM

I totally understand every word you have wrote, my best friend of 42 years asked me to do something for her in April, I asked her to remind me nearer the time as I would probably forget because of fibro fog her response nearly knowledge me down it was quiet simply "what a lot of nonsense " this fibro thing you talk about is all in your head. Well I just smiled got in my car and burst into tears, I mean we used to chat about everything and anything but now she doesn't even ask me how I am guesse that's friends for ya X X by the way I'm in a flare at the minute like I have never had before I just want to curl up and not wake up 😢😢😢

Mar 17, 2016 3:16 PM

OMG! Not, sure where you live. But I reside in Cambridge, Me. USA.
I so feel ya!! My legs are burning, I mean literally!! They are so red, and hot. And , sigh! Along with everything else in my broken body. Lol, That's all I wanted to do today as well. Keep warm, sleep. At least than I can't feel the pain for 5-10 min. But, nope can't do that can we? :( But I hope tomorrow is a better day for you.

Mar 17, 2016 4:13 PM

Family and friends can be mean. They have been very mean to me. They expect me to get over my accident where my leg lost an inch and my ankle isn't an ankle anymore. It is just a clump of bone. But that pain, back,neck,arm,Fibromyalgia pain should stop me. I should rise above it and be in a TV movie about how I was victorious and the community rallied by my side. That is just not the way it happens. Usually, when we don't rise above it, not only do we lose hope but they lose hope in us too. They want us to be better. Our family and friends will stay nearby as long as they can handle it. We need to face it. Most people want to live in the world where someone they know has someone who has cancer or is sick or in pain. They don't want to be the person who knows them. They don't want to have to deal with that because they don't know how to handle it. They want to be able to fix their friend and family member and go back to their little utopia. When they can't, they run away, they unfriendly us, get angry.. We need to remember that most of the time Anger is symptom of fear. Our loved ones fear what's happening to us. This is just a thought. Sometimes it is good to consider when and what we share. Not accusing anyone. But our loved ones just can't handle much. We can tell the strong ones. They come to us. Best wishes everyone. I hope I didn't offend anyone.

Mar 18, 2016 1:39 AM

That's true, if they can't fix us or we can't be fixed then it's easier to walk away. My husband is a blessing but this is the first time I've heard him say he's tired of hearing about it pretty much. He said it's because he can't stand to see me hurting bc he doesn't know how to help so he's rather not talk about it. I guess.

Mar 18, 2016 1:43 AM

BTW sassypants I'm in Texas, near Austin. I get the wonderful weather changes... 4 seasons in one day sometimes! Wreaks havoc on my body, I swear it changes with the barometric pressure changes. Today it was 95° then a cold front blew in and now it's 71° and tomorrow we're supposed to have hail and possibly tornados. Craziness

Mar 18, 2016 2:05 AM

Hey sassy I'm in Dundee Scotland and we constant have the four seasons in one day. You should try living here you don't know what you're gonna wake up to X x

Mar 18, 2016 9:47 AM

I suggest as for fb and the vents which r perfectly fine. I would also put up fibromyalgia fact hot points stickers and saying. Dont tag or point anyone out. Just as they say let it sit right there. And it's like softly spreading the word and the facts of what u r going through. I've done this several times and have found I get better reception from those who may not know what to say or do. And yes they may want to help but just don't know how. It takes time and it take constant education to get the responses we need.

Mar 18, 2016 5:36 PM

I'm in L.A. I never had a lot of friends, but now it's only FB and my chorale group. I just can't get up and out most days, wven though I want to.
One friend didn't understand that I felt like I was dying every day - until she got an "invisible illness". While we never want others to have to discover pain the hard way, sometimes that's what it takes. I hope you can find new, understanding friends, and that your current friends can get their heads out of their butts.

Mar 18, 2016 6:17 PM

Princess, no one knows me here, I don't have much to say here. But there are some really good fb support groups. That way you can keep most of your pain off your page where healthy people get tired of hearing about it. Look them up. Seach for fibro or if you have other illness or disease, look them up too. I am in a few great AS groups and we often discuss our other ailements too, because when you have one auto-immune you usually have at least 2. I have at least 3 plus side syndromes.

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