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The pain no one sees
27 Replies
dannape - April 27

I guess, where i'm very frustrated today, is, i'm having a fibro flareup, no doubt due to stress, i work at a bank, and we're getting audited tomorrow, so checking, double checking, to make sure everything is just right, and i am so tight, and sore today, and NO ONE gets it, to look at me,i might look tired, but they just assume i'm ok, well, i'm NOT. It's one of those diseases that no one can see that you have it, they have no idea how much pain we're in, and they just assume everything is ok, and they don't understand why I'm being so quiet, and they think i'm mad, and it is not that, i just feel like dirt.

Please tell me someone else understands :(

 

Fantod - April 27

dannape - Yes, I understand how horrible you feel. I am also fed up with people assuming that because I look well albeit tired that everything must be jim dandy.

The audit will be over shortly and then some of the pressure that you are feeling will lift. Try to focus on something that will alleviate some of the stress that you are feeling. Feel better and take care - you are not alone!

 

January - April 27

This is one of my usual gripes about people who don't get it. When I tell someone how I really feel (and I do!) they almost always say "But you look great!" That is such a stupid remark. Really. It's like nobody can hear you.

Don't know how you are managing to slog through work, but I give you credit for getting through it. Hope you are getting some very good rest when you go home. Don't know if your environment is one where you are able to discuss this illness -- but if it is, you might educate some people by mentioning something like "I know I'm quiet lately, please understand it's not about you - it's my fibromyalgia flaring up and I'm in considerable pain."

But I know a lot of people who keep their fibromyalgia a secret at work. Apparently, some places are pretty discriminatory about it.

So - hope your work load slows down and that you feel better soon. I think we all understand!

 

hope4painrelief - April 28

I totally feel the same, yes, I do have my significant other who understands it but even my parents don't fully get it. My daughter at 20 years old told me she thinks I am lazy. When she was growning up she saw me work 2 jobs and attend college so I don't know what here logic is. She didn't understand why there are days I can't get out of bed due to the pain and fatigue. I congratulate you for even being able to work. Right now I am on disability and I even have friends tell me "well you are lucky you don't have to worry about working, I wish I could be on disability too". They don't understand I would much rather go back to being healthy and working two jobs than on disability with this illness that is excruciating and people continue to think we are whiny fakers. I hope that there is more information given to the public or a celebrity steps forward to tell them about it. Catherine Zeta Jones did a lot for the stigma of Bipolar when she came out as having it. Thanks for listening to my ranting and I hope things get better for you.

 

dannape - April 28

Thank you everyone for your supportive comments..not sure if this will make my flare better or worse, but we failed the audit :( My head is splitting and i wanna cry,but don't dare til i get home. In response to January, i wish i got good rest when i was home, but i don't sleep that well, and i'm still tired when i wake up, i'm just surviving, that's about the best i can say. I'm sure i'm not near as bad as a lot of you are, so I guess i'm blessed, its just hard to see that when you dont' feel well :)

 

January - April 28

Hi dannape. Really sorry to hear about your sleep issue (maybe that was why I asked..?) As you probably know, RESTFUL SLEEP is a major issue in fibromyalgia. Most of us have serious insomnia of various types, and need some kind of medication to sleep well.

If your dr. is knowledgeable about fibro, he should have asked about your sleep quality - and should be treating you for it. So if you're not talking to your dr. about this, please do.

Everyone has to find their own treatment plan. I took Ambien and it was great for a while, but then I had to take more and more. Now I take 1/2 pill, but I do load up on Melatonin. Also, 1/2 tab of flushing kind of niacin helps me relax. I take time-release melatonin around 8 or 9pm and then, when I go to sleep, I take a couple sublingual tabs along with low dose meds. This combination of things has worked for quite a long time, and I vary it a little so I don't build up tolerance. There's "sleep hygiene" too - like you need to stay away from lights and stimulation so you can get sleepy - but I'm really bad about that! Anyway, hope you feel better! The audit will be over eventually. As my wonderful old dr. used to remind me when I got upset about stuff: "This too shall pass."

 

January - April 28

hope4painrelief - Like you, I worked my behind into the ground when I was younger. I was always doing something, and was pretty accomplished in several areas. I had to stop working my regular day job - and I'd give anything to have that job back, but I can't do it. There are days when I need to sleep and sleep more. There are days with brain fog, or extra pain due to weather. Then there's the fact that I'm seriously exhausted after a 4-hour "busy" day, and need a day or two to recover.

This is a real disease and we all need to complain and to educate people. Our pain is not the usual "ache and pain" that normal people experience. It's different. I think there is some infectious agent that ties into fibro - our numbers are growing. If they found a biological "cause" - like they did with Lyme Disease - it would give us "respectability" - drs. would no longer be taught that fibro is a "depressive disease" and fibromyalgia would no longer be treated with antidepressants and anticonvulsants -- what is the underlying "message" in that? That we are a bunch of neurotic whiners. And, of course, SOME of us are, just like any regular population -- but MOST of us are not! We need to take back our dignity and put up an argument when we get labeled unfairly!

If I had the energy, I'd print up a bunch of T-shirts that say:

FIBROMYALGIA: WE'RE NOT LAZY, WE'RE SICK!
(or WE'RE NOT CRAZY; WE'RE SICK!)

I think Fantod is the marketing genius here… maybe she has some ideas. And Fibro Awareness Day is coming up! We ALL have to speak up!

Today I caught the tail end of a Dr. Phil show that did even more to perpetuate the stereotype of people with chronic pain as being lazy, irresponsible and drug-crazed. The show about "Alexandra - in denial?" I don't know much about Alexandra and her individual situation - but the two "experts" Dr. Phil had on made some statements about pain and pain medications that weren't very well substantiated on the show. I suspect this is the same type of ignorant statement a lot of fibro people hear continually from dismissive doctors who don't understand this pain syndrome. This is the kind of thing we need to complain about. Neither of the "experts" mentioned that Alexandra might have fibromyalgia. I'm sure it never crossed their minds.

And to quote Fantod, who I hope is feeling better, "here endeth my rant!" Feel better everyone!

 

dannape - April 29

Does anyone know if breast pain can be related to fibromyalgia? I've had moderate to severe pain in both breasts for 3 months straight now, i sometimes have to wear my bra to sleep at night,i can barely touch them, i'm going in to have a diagnostic breast exam next week, instead of the normal mammogram,cause they said that would probably kill me (pain wise) since i cant' even touch them, let alone having them smashed like pancakes (lol) Someone suggested maybe the fibro had something to do with it,i've never heard of breast pain with fibro, but thought i would ask the experts. thanks in advance

 

lacey - April 30

I don't work. No one would have me as I wouldn't pass a medical but, I have a friend who keeps saying my doctor should send me to a specialist. I said why, this doctor is doing the right thing and he husband asks don't I want to get better. I said to him I will never get better and with that he just scoffed and said oh yeah.

That upset me for the rest of the day and then had a very short snap at my hubby ( not his fault). I felt dreadful after that. A bullet would have help nicely.

So no January the Lyrica is not helping me one little bit.

Anyway I asked if they knew anything aboout fibromyalgia and both said no, so I suggested before they comment further, go home and google it. That shut them up.

So dannape, if you feel you are getting no where by telling people why you feel so terrible, tell them you have a virus and the doctor is working on it and until it's better ask them to just have some patience with you. That is what I am going to do from now on.

Also if one of them has diabetes, tell them how great they look. or someone with a sore back. Tell them they look fine to you.

Sorry but it's all I can suggest.

Good luck

 

martyj - May 3

Tell you stress is a major issue with fibro. Last year I was fired from my job because of the amount of stress ended me in the hospital with a near breakdown. When I got out I was ready and willing to work but they wouldn't take me back in a way was a blessing for that job was a lot of stress. They knew my condition knew my health issues I worked overtime when they needed someone too and Saturdays when they needed someone too and I was only one who did. Now my pain level is very high. None of the meds they advertise I can take all have different reactions to them for me so I am on nothing. Love hearing you look fine to me when body is screaming in pain. Love knowing things in house need to be done and I can not do them (I live alone). Torn rotator cuff left should bad bursitis in right shoulder L4 disc bad in back getting injections for that see my point. Yet I do keep going do things I have to tend to 4 dogs get into my slump of depression of and on but still plug away. I want to work not sure how I can do 40hrs now but maybe part time. I am working with someone who helps people that are disabled find work. And am on second round for filing for disability.

Sleeping at night I do but that is thanks to my psychiatrist with the meds he has me on otherwise I would not be able to sleep. I have to take them at least 3hrs before I plan to go to bed but amitryptiline works for me right now he had to increase dosage plus the xanax.

I could not fight for my job. I spoke to two lawyers and both said nothing I could do.

Dannape I hope you ask your doctor for things to help you with like the sleeping, the stress something to control and help that. Me and stress I ended up with migraine headaches and had to go to er. Even though I take meds daily for headaches. Good luck soft hugs

 

nessnz - May 6

I completely understand! I work four busy days a week and especially toward the end of the week I am in so much pain. Lately it is worse, I'm in severe pain all the time. I'm the one at work who gets things done, before FM I had three jobs and two preschoolers. I am not a lazy person. Even though my family know that I am in pain, they don't understand the extent of it. How can they? I dont' want to remind them every second of the day. I also get very introverted and quiet when the pain is bad and people think that I'm in a bad mood.

Stress is the killer and we can't always avoid that with work or family. Get your sleep sorted out, that is your hightest priority. I'm on amitryptiline for my sleep and it has made a massive difference. The pain is still as bad but I cope with it better when not so physically exhausted.

 

weemama - June 24

Hi dannape: I get it, boy do I get it. I am having a bad flare up right now, have had it for 4 days....mainly sharp pains in my sternum and head. I got in a fight with my boss today and just gave up and came home...I am quitting tomorrow. So much stress there also. I am a dept manager and for some reason Ijust can't please her for the last month or so. Anyway, enough about me. I really hope you feel better soon and hope the audit goes well so you can relax a bit. Be well

 

weemama - June 24

Here I am again: I understand about people not getting it. Had to take a 2 day cpr course yesterday and the day before....my chest was hurting then too. The woman teaching got it, but the other women in the class looked at me like I had two heads and one even said....yeah right! Wanted to back hand her... Some days are diamond some days are dust......I stuck my tongue out at her.....was a little childish, but felt good! I really get tired of explaining....even to the docs at emergency when I go in....It is why are you here again? We just checked your heart a few months ago...nothing wrong....don't know why you have pain...probably stress related...well duh...ya think?

 

axxie - June 28

Know to well how you feel, actually the only one actually get it, is us. I focus on what I can do today and tend not to worry. The more you get upset, mad or worry the worst your pain is. Weather don't help.

As for breast pain, please if you have any, go see your doctor and get a breast screening, youre breast should not hurt.

I also work and the more I am active the better for me, but working in an office is the pit, because you are always sitting. Not much better when you work on your feet. We need jobs with a happy medium.

Weather also plays a great deal with the pain, I have been in pain all last week because of the rain. Humidity actually helps me, I don't know why.

Sleep is the number one factor, if you don't sleep, and don't get restful sleep then you are going to hurt much more.

I am back on my sleeping pills, I found that I feel more relaxed and don't tend to hurt so much.

 

mypain - June 29

I do understand 100%. I am and have been having an exasperation for the last 2-3 months. I cannot get control. I am not able to sit, lay, stand, get up and have the ability to just walk. I have to stand, take my breath, hope my feet will remember what they are suppose to do, because now my hip pain has now joined my feet pain and it is a toss up as to wheather or not I will walk. Thank God my appointment is tomorrow.....I am so going downhill so very quickly.

 

mypain - June 29

Try Ambien 10 mg

 

mypain - June 29

Sure...a lot of us have Fribrosystic breast....they are lumpy and tender. Fribrosystic Breast Disease is very common. Have your OBGYN check the next time you go in.

 

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