Hello fellow members: I just want to vent, please. Doesn't it tick you off when people say there is always someone worse off? I feel for everyone in pain. Before you had pain did you ever think there was people in excruciating pain? Well at present I don't have pain meds because they have all ran out. I am in excruciating pain, from FM (the worst offender) spondylitis, severe degenerative disc disease, o/a in lower lumbar and knees, how much worse can it get? I cannot walk without holding onto someone. I have to use a scooter in a mall. Something which I dread because I look so healthy. I take my nightime meds around 3:00 in the afternoon, that is 3 diff anti depressants, 2 different muscle relaxants and a pain pill to knock me out. I am up around 2-3am each day, which really sucks, when the rest of the world is sleeping (part of it anyway). On the other hand, there a good decent people in here and I do have a good family, thank God. Ok folks, I wish I could wave a magic wand and make everyone's pain go away. Thanks for letting me vent. God bless :nono:

Honey you vent whenever you need to. And hey, I'm on the computer quite often that time of the morning.
I too hate hearing others much worse off, even if there are. I try to remind myself sometimes that I have been in much worse shape when I was a kid. My father-in-law died of cancer so I know he was worse off, but just remember, even though there are those in some ways worse off that doesn't mean our pains don't count. We count, our pain counts, our needs count. No matter what about anyone else's health.
If you want it I'll give you my yahoo messanger or e mail for when you're up so early.
I kinda understand about the scooter. I hate it when I need one at the store. I feel like I'm giving in to it all and I have 2 friends telling me I should get my own. I have a friend that has had both her knees replaced twice and so has to use one, I hate how some people look at her in the store, I want to go up and just slap them. She's a bit overweight and I can see the little wheels turning in their little minds. When I get looked at like that I want to run over them with the scooter. Can you imagine a hit and run on aisle 5 in Wal-Mart? :) Sometimes just the thought helps.
Remeber that no matter what about anyone else, you matter and your pain is important. You might tell people who talk about others being worse, that to them they probably are and in some ways maybe but that doesn't detract from your problems.
April

Still Going:

Yeah, I understand. It's usually the healthy ones that say such benign things to people in pain. They just don't understand. I like your handle: Still Going. Sounds like you are doing your best to do just that.

God bless you. You are having a struggle, and I feel such compassion for your situation.

Kristin.

since i assist others in the process of dying i do not feel offended. there is an old saying. it goes. i cried because i had no shoes until i saw a man with no feet. being exposed to the people i meet helps me keep it real.
all things considered i feel fortunate to have the illnesses i have. sure it's hard sometimes. the past couple of days have been a real challenge. who will win, me or the pain? me. why? because in time the pain eases and i am still here. so i win!
my heart goes out to you. this is not an easy journey.
peace,
bluelakelady

No I would not like if someone said that to me, not because of what they say, but because of how they say it. The words 'there is always someone worse off' are true. I met a couple yesterday at my husbands chemotherapy and the gentleman had lung cancer not curable. So I would say my husband and I were better off because his cancer is 90% curable and this couple know they will battle this cancer for years to give them some more time together.

It is what is behind the off handed comments people say that is offensive. What is behind those comments is IGNORANCE plain and simple and that is what I find offensive. Like blue I have learned a lot through my journey and I am still learning. Unfortunatly for the ignorant people they think they already know everything and refuse to open their mind to new thoughts.

Hang in there stillgoing and keep an open mind.

Glojer

Hi everyone: Here I am again. I just found out something interesting this morning. I was debating with my son if I should use Baclofen, a pill that I had used 3 years ago with good success. He looked up the interactions between what I was on and the Baclofen. Well lo and behold fibre should never be taken with any antidepressant because you lose 80% of the drugs effect. I was wondering why my drug Milnacipran was not kicking in. It was all going down the toilet.
In response to the way people say things. I did not mean to sound like a mean person at all. I too feel for other people whatever their dilemma. Most of my life I have spent doing volunteer work in senior's homes or in hospitals. So I have seen the good, bad and the ugly. No-matter what your situation, one can always hold out their hand to help or whisper comforting words. Whew better stop venting or I will be kicked out of here. Luv yas

hi stillgoin,
girlfriend, no one will boot you out for expressing your feelings. we all go thru the ups and downs of being who we are. it takes time to adjust. grant yourself that gift.
i have a whole lot of very nasty words to express my feelings on depression. i am so sorry you deal with it. i am one of the fortunate few. depression is not an issue. i do take baclofen and i agree with you, it works. is there an antidepressant that you can take with it? one can hope?
may today fill you with laughter and sights to carry your imagination far from your body and it's reality.
peace,
bluelakelady

Stillgoin just wanted to say everyone has the right to express an opinion here and no one thinks you are a mean person. I hope the new med works for you. Oh my the dentist, the place I dread to go the most. All I can say is thank you God for gifting me with good teeth.

Glojer

big all better kisses to your face. dentist = ouch!
feel better so soon.
peace,
bluelakelady
ps i am the worlds biggest wimp when it comes to the dentist. mine is gentle. hope yours is too!

StillGoin,

Glojer hit it on the nose, it is ignorance. I also believe it is fear.

People who have never experienced anything chronic do not understand what it is like. This does not make it alright for them to make comments to you that are hurtful.

I think that when people are dealing with something they do not understand they have fear-fear can breed ignorance. They really do not know what to say and perhaps the only thing they know to say is "well, it could be worse."

I have told people that have said this that all the needed to say is , "I am sorry you do not feel well and are suffering, or just I am sorry". I didn't quite understand this until I was in chronic pain.

Suffice it to say, of course it is hard when people say this. It is also hard when I park in Disabled parking and they see what appears to be a perfectly, healthy person. I get some looks that are unbelievable.

The good that has come out of this is that I no longer judge those who park in disabled spaces, who drive the scooters (i tried, but I went around in circles) or who are just not able to keep up with the pack. This also goes towards the elderly and the ability to be patient with them when they are in front of us in line. Sometimes it amazed me the sighs of impatience I hear.

Hey stillgoin, when it comes to interactions I have read that to but a pharmacist told me that wasn't always true for every antidepressant. I take can antidepressant. When my back went out I took Baclofen and asked the same thing and was told that it didn't matter. But everyone is different, what works on me can be the total opposite for you. Actually, I have been taking this anti-dep. for so long who knows if it works or not.

Good luck at your dentist..I do not have the courage to go and have put it off 4 times. Brave girl! :)

ALso, everyone is entitled to express themselves here, no matter what. Never feel bad.

Peace and love, Hangin

Hello, everyone,

Hearing people say that others are worse off is such a lonely-making thing. I think we need validation and the feeling that someone acknowledges our pain. I know it always makes me feel less desperately alone in illness when someone just expresses empathy or just says, oh, I'm so sorry.
Fibro and chronic pain are invalidated and not believed anyway so often.
I once had a neurologist tell me: "There's nothing wrong with you. You have a college degree, and there's no reason you shouldn't be working full time. I treat people with real medical problems".

If the doctors can say that kind of thing, then others can sure misjudge us, too.

Peace to everyone here,

Seaturtle

Seaturtle obviously that doctor missed a few classes in medical school. Having a college degree does not guarantee you will not have pain or a debilitating disease in your life. If that were the case I think the health insurance companies would be paying for college degrees for eveyone it would be cheaper that paying for medical problems and for paying for medical tests and doctors who are jerks. Did I say that? I mean docs who are missing a real part of being a doctor.

Glojer

Seaturtle,

I think that doctor was cruel and a jerk!! He obviously has no bedside manner.

Peace and love, Hangin

I think the majority of folks really dont understand fibromylagia unless they have it themselves. Just last night i was talking to a friend who kept saying in so many words oh there are cures or dont think about it.

she kept saying oh i have talked to so and so and they said it is caused by this and would bring something stupid up. I kept explaining to her that everyone of us is different. who really knows what causes this...i dont think anyone has all the answers that we need.

I think unless someone has it they really dont understand and sure there are always others worst off but how exactly does that help us? we hurt people .....

You are so right Ocean, and welcome to our board. Some people are well meaning but just don't quite get it. I had a lady say to me when I was standing with a friend from exercise that she knew what fibro was cause she worked on the psychiatrict ward of a hospital once. We were both taken aback and I didn't have a good comeback for her, I was so surprised by her comment. Thank goodness my exercise buddy does know what fibro is and thought the other lady was a jerk.

Glojer

Hello Oceanaeyes, welcome to the board. We love new folks here.....we
get new ideas and input which is refreshing.
I have several friends who sound like your friend. Some of them seem to
have more information than the ones of us who have fibro. I'm afraid I
was a little judgemental before I began to hurt and was finally diagnosed.
I just hope I didn't say things like I hear so often now. I just don't tell anyone
any more that I have fibromyalgia. If they don't have it, they won't understand
anyway. Please tell us more about yourself, we really care about you.
Bilij

You are so right Ocean, and welcome to our board. Some people are well meaning but just don't quite get it. I had a lady say to me when I was standing with a friend from exercise that she knew what fibro was cause she worked on the psychiatrict ward of a hospital once. We were both taken aback and I didn't have a good comeback for her, I was so surprised by her comment. Thank goodness my exercise buddy does know what fibro is and thought the other lady was a jerk.

Glojer

Glojer,

You should have told the woman who said this that she was correct and that she better be careful, you could go off at any minute..... :D

Peace and love, Hangin

LOl i personally always wear my shirt around dumb folks...it itself is a good comeback i think...it reads" dont Interupt me when im talking to the voices in my head" i have heard so many people say that fibromyalgia is all in our heads..ok then what causes the pain in our bodies?

as for my introduction im 33 years old and a mom to a very hyper little 6 year old..so this doesnt leave me much time to become a bed slave. I dont always feel great..mine started 5 years ago. i got very sick all at once when i first got to washington. I developed a ring worm. I was throwing up over 12 times a day at the time. I went to a specialist to find out what was wrong with me. He said i had developed a very rare parasite and he was not sure how I had even come accross it. He said it lives in the linning of the stomach muscles.I told him i had gone to a garage sale and had picked up a batch of new born kitties and was not sure if that is how i got the ring worm itself. I was under alot of antibiotics for over a month.

The ring worm finally cleared but i have never been healthy since.I still always feel sick..with time i developed pain in my body. I would get super tired and my blood work started coming back with unusual levels of white blood cells. The doctor said 10 is normal i was sometimes over 22..recently they sent me to a specialist who looked at me and said i was to young to have anything wrong with me and that i could stand to loose 100 pounds. Funny i would weight 80 pounds then.Yet he said iw as very flexible. Guess im a fat flexible person then. Dude talked to me about 5 minutes and said he had no diagnoses for me and that "that might be a good thing"

my symptoms were thought to be polymyalgia but latter the doctor said it was fibromyalgia becuase i ache non stop. i get migraines, tired, have a hard time sleeping at night. Mostly im always in alot of pain. My pain is mainly in my lower back. I can feel it on my shoulders and neck too. Im fighting naps as much as I can but i feel so crappy half the time i just want to crawl into bed and tune the world out. I have a little boy who keeps me going though i hobble about tossing him the ball and so forth. i guess im really luck to have him to remind me that we all got our troubles and we just got to keep going one day at a time.

What I hate too..is when a friend complains and whines that their neck hurts and expects sympathy/pity. I just say..gee, really? I don't bother venting to my friends anymore..they just don't get how I feel! Not all of them..some do understand and actually talk with me and not change the subject.

yep people trivialize your pain like its something thats not bad, or compare you to other people

where i work, these people hired me from disability company and they knew off the back that I had a disability because they called the company looking for someone disabled to work for them. I have Fibromyalgia, sciatic nerve pain from a buldging disc, flat feet, heel spures, joint pain which causes fevers, hypoglycemia, stomach problems, fibroid tumors, asthma, and i suffer with major depression and severe PMS, yet every time I can't do something, I hear "well so and so did it too" (the lady I replaced. I COULD CARE LESS! I'm not so in so, and if you have a problem with disabled people then you shouldn't have hired one :o

Like the rest of you, yes it's ticks me off.

My boyfriend has said that to me, said he was trying to make me "feel better" all it done was piss me off. I laid the law down right then, I know there are ppl worse off and God forbid, I hate it. I wish everyone were happy and healthy but I'm not them.....I AM ME! When I feel like taking a chainsaw and cutting body parts off because they are hurting so bad I don't much care what kind of shape Tom, Dick, or Harry down the street is in.
Yes, I also agree that it is ignorance behind that remark. Granted I do think it is meant in a good way.....maybe in a round about way telling you to count your blessings but still.......noone wants to hear that crap.
Like someone else said, we are in pain and just because there are others in more pain or have fatal diseases that doesn't mean our pain doesn't count. We all count, in pain or not.

Stillgoin, I totally understand your frustration. Yes, I feel the same way.
Just because we look healthy, doesn't make it so. I'm 36 but proud to say I look much younger :) I have a handicap placard due to my severe degenerative disk disease and Osteopenia in my lower lumbar spine. For which I'm awaiting a total disk replacement. As well as many health problems besides Fibro and Myofasial Pain Syndrome. Too many to list right now. :rolleyes: I have had the glares , the stares and comments from doctors.
It is all VERY frustrating. I think being a woman and looking healthy honestly is to our disadvantage sometimes. It's a proven fact that you can put a man and woman in the same room with the same symptoms and get two different diagnosis. :confused:
Feel free to vent anytime you wish. We are all here for you...and each other. We all need a sounding board and a good shoulder some days. :angel:

I had to comment again...just last night..my hubby (usually what I call him, actually bf)..says to me..well maybe if you'd go to bed early, you'd get up early. Oh, did that just piss me off! I told him I went to bed early just last night...He says..Ya, but you were out of bed at least 10 times...Gee, why? Would it be because I'm so frustrated from my pain? I figure if I get up, eventually I'm going to get tired out! If I'm laying there for HOURS, I'm certainly not going to fall asleep..never happens! He rolls his eyes at me..and always has some sort of comment. I start to say something..and just say nevermind..I know I'll end up crying..It really hurts my feelings that he just can't understand how I feel. Maybe I'm too sensitive.

During Thanksgiving my sister and mom came to visit for a few days. When my sister got here she was asking how I was feeling and I told her that it was a bad day for me. Now, here is someone who suffers from Fibro (she thinks she had it and now it is gone, I don't know what to say about that).

Anyways, when I told here I wasn't feeling well she said "I have those kind of days where I can hardly get out of bed but I make myself get up and keep going". :eek: I used to let those things go but not that day. Very nicely I told her to listen to what she just said to me. When I reiterated back to her what she had said too me she was horrified. She had no idea that it came across that way. She apologized and said she just wanted to make me feel better by saying that I can still do things. Of course I was miffed, but after I made her see what was coming out of her mouth she never, during that whole visit, said anything even similar to that. SHe told me she had no idea she was saying such stupid things.

That is what happens when people pay no attention to what they are saying to the other person. Yes, it sounds lame that she didn't realize that she was saying that, it was not her intention behind it to make me feel bad. I believe that people just talk away and do not hear themselves. You know, those familiar words "But what did I say?" I know there are some people out there who are cruel and could care less if they hurt your feelings. I do believe that the better part of the population just do not hear themselves talk. It has made me much more aware of what I say and do in every day life.

I also have a disabled placard and get looks but say to myself that I wonder if I did the same thing before? When it comes to saying something about sleep, I was staying at a home for ill people and helping out a friend who was there. I was up and down all night and just couldn't sleep, I am a poor sleeper anyway. One of the nurses there said to me "Well, bottom line is you just don't want to sleep". WHAT! What an idiotic thing to say. People never cease to amaze me.

If people were just more aware of words, actions, looks and their body language it would make life so much easier for those who are ill. It would make life easier for everyone.

Take care everyone. Have a great night.

Peace and love, Hangin

I was sitting in my moms car waiting for her to come out of a restraunt. She has Lupus and Fibro (Lupus is in remission now. Go Ma!!). A woman pulled up in a car next to me and giving me a hard time because I shouldn't be parked in the handicapped spot. It was my moms car and so it was my moms placard, but the point is still the same. I have Fibromyalgia. I was 20 and so I'm sure I looked like some kid just taking up a spot. I don't look sick. If it had been my placard and my car I would have been justified in sitting in that space just the same. Who is she to judge me!? I told her I was waiting for my mom and she just stood there and waited until my mom came out to the parking lot. Wha!!! :blob_fire I couldn't believe the audacity!

I've been using the motorized carts at walmart since I was 16. Oh, the nasty looks I would get. It was all I could do not to run those self-righteous bags over at top speed. And some of those carts can get moving pretty fast!

perhaps it is for us to set the example. if we get angry, do we not sink to their level? i flash my biggest smile and wish the person a grand day. get's them every time. it is not for me to pass judgement on a person who has just passed judgement on me. it is for me to have compassion and return love. that is what fibromyalgia has taught me.
anger is not my friend. it eats me up and spits me out. fibromyalgia just feeds on anger, fear, frustration. in the face of gentle thoughts fibro is still there, only not thriving and screaming at me.
please my dear friends, do not allow the narrow thinking of others to alter the wonderful, beautiful person that you are. it's your parade and only you decide if the sun shines or if you allow the rain of other to fall.
my favorite response to words without thought is to ask the person to explain what they mean. i tell them i do not understand their intent and ask for clarification. you, hangin, have proven it works. i am really proud of you and the way you chose to handle the situation. my grandma used to say you catch more flies with honey than you do with vinegar. she was right.
peace,
blue

this is my 2 cents on this subject. I shop at walmart all the time. I always try to get a rider. My husband and I are both disabled.the sweet people who are the greaters know both my husband and I. Anyway I was in there one day and asked for a cart. Jean the greeter went to get it for me as there was only one that day. Just as she came out with the cart some woman says real loud to Jean I want that cart. Jean explained I had asked for it first and so she could wait or look at the other end. The woman said "well my feet hurt today,she don't look like she needs one at all." I told Jean, it was ok. let her have the rider, I just needed a few things, and thought I could get along with a regular cart. The woman jumps on the cart and says see all you have to do is be assertive with that kind of person.Jean and I just shook our heads and I went about my shopping. I got out to my car and beside me was a car parked in handicap with no tag,no plate. THAT DOES make me mad. So I called Walmart security and complained. They called the walmart friendly cop and he came out and wrote a ticket. We had just got done talking and GUESS who came out blowing a gasket! Yeah.....She accused me of being snotty to her because of the rider deal inside. And I said" Yeah ya just have to be assertive to this kind of person ". Got in my car and left with a big grin.I try not to judge people, but I do like a level playing field.

girlfriend you made my day. not sure why i do it but i always look for the placard or plates. i have one too and only use it on days in need to. i live in a retired area and those spots are more rare than diamonds here. abuse is a no no in my book too.
i never thought of telling the store. next time.
assertive is a good thing. so is delegation. well done!
peace,
blue

movin slo,

What a great story. :D Karma will get you everytime.

Peace and love, Hangin

Movin I loved the story, it made me smile. I grew up with my Mom teaching us that no one ever gains by trying to cheat or hurt another. You proved that theory my mother would be proud.

Glojer

That was a great story.
I don't have a tag (or need it right now) but I always look when I walk by them.
My parents had a really hard time getting into those spots and they had the tag.

When it comes to the placards on the disabled for the cars I always think to myself that the person getting out of the car could have cancer, heart problems, post surgical, fibro, so, so many different problems that do not manifest themselves physically. I didn't always think that way.

About 35 years ago I was with my mother in a store and someone parked in a spot without a tag and I made a comment. My mother said how dare I judge someone when I have no idea of what they are going through. They could have just lost a loved one, could be ill, etc.

Well, it was a lesson learned since my mother was always so soft spoken and still is. When she has a point and says how dare you, well, you can imagine how I felt. It has stuck with me all these years.

Take care,

Peace and love, Hangin