# What is your biggest gripe?



## Clair (Sep 16, 2000)

I thought it might be fun and interesting to see what everyone's biggest gripe is about having CFS/ME or Fibro - and how people treat us







My biggest gripe is:* Well meaning loved ones telling me to take vitamin pills/supplements/rhino horn/tiger's dangly bits as it has helped them!







Hello! you people! you dont have M.E. - dont you think doctor's would have suggested this? duh!


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## ShellyMcG (Jul 29, 2002)

I was dx with FM 17 years ago. Don't think I told anyone for a few years because I didn't even know what it was. They called it Fibromyositis then--or Fibrositis.We now know there is no inflammation with FM, so they have dropped the "itis".Today, people do know the word Fibromyalgia. I have seen the same Rheumatologist for 15 years. I have never had anyone--including doctors--tell me "It's all in your head." IMHO, people treat you the way you allow them to treat you.My motto:"If I tell ya, I hurt--it means I hurt. If you don't believe me--the h###ll with ya. "Shelly We are all different, unique--but most of all---special. Together with our doctor, we search for the right combination of life styles and meds.I pray that you find something that is comfortable for YOU.


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## M&M (Jan 20, 2002)

Oh this is a hard one. I guess one of my biggest gripes (lol hard to narrow it down sometimes) is when people pretend to care just long enough so they can say "Oh yeah, I am so tired too. And I hurt my back really bad so I took some Tylenol and now it's better." I don't know whether to blow my top or just laugh it off. I usually opt for laughing!


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## Guest (Oct 25, 2002)

"Oh yeah... we all get that"


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## weener (Aug 15, 2000)

I'm not sure if this is the correct wording, but having to justify my illness. That this illness is real and that just because I look fine on the outside doesn't mean that I'm fine on the inside.


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## Mojosue (Aug 30, 2002)

that I cant get physical therapy close to home for the back pain. A regular deep massage/osteopath visit would do me fine - but all the doc can offer are painkillers.If I want to go to pain clinic I get the idea I have to have painkillers and still be in pain. So jees I feel sooo bad for anyone in that much pain. But why do we have to wait until its excrutiating before we can get anything other than painkillers. Surely they should be last in the line of treatments not first. More frustrating is my GP agrees but is helpless in the face of the health authority. how backwards is it to have pills thrown at you, and manipulation denied? How backwards is it that your diease has to progress till you are barely able to exist before treatment is given. How backwards is this damn system? Pills make the NHS money, massage therapy don't. It's simple. Im off to cheer myself up, got a scooter rally to travel to tonight. 60 miles on the back of a vespa. Eeeek. :0)Suex


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## SLBEL3 (Jun 1, 2000)

I would have to say my biggest gripe is, actually I have 2. The one pertaining to fibro is my mom when she says "oh, tell it to go away because you don't have time for it". Gee, why didn't I think of that???? If it would work don't she think I would be better by now?? I hate that!And pertaing to the IBS-D, I have become somewhat incontinant on bad days the pain is ever increasing and I cannot tollerate bumps in the road without panicking that I'm going to poop my pants. Haven't left house in over 2 months (other than this past weekend since I finally got percocet) So my gripe is my sister when she says "well, we can't come to your house so even if you are in pain and need a bathroom you come here and you can lay on my couch while we do xmas and obviously we have a bathroom". Well, she is an hour away from here and there is no way I can make a ride that long. (only 1 rest area on the way).I could keep going, but you only wanted one. sorry I gave two but couldn't decide which was worse.


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## jenEbean (Apr 5, 1999)

When people say "yeah...you always have something hurting you"! You're right! I do always have something hurting me. Try it for a week or two knucklehead and see how you like it. It really isn't much fun at all.


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## kestral (Nov 2, 2002)

My biggest gripe:"But you look so GOOD!!!!" 'I didn't know you were sick" said in a tone of disbeliefreally gets my bloodpressure up. They should see me when I can't get up the energy to take a shower and put my makeup on!


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## squrts (Aug 14, 2000)

ANXITY,by a long shot!but just in case that dont make the list heres another:for years i`ve beat my brains out looking for the right complaint to tell the docs,but the only thing i can narrow it down to is"i feel poorly".that just dont do my feelings justice,but my feelings are just too...wordless,ha!theres no words to describ them.


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## JoJen (Nov 6, 2002)

I am with Weener - having to justify. You don't know if you should just keep quiet or if you should explain. After several years I have learned that it's best to just keep my mouth shout. This way it saves some of my energy for other things. Even if you do explain what do you get in response? Words from others hurt - not once have they ever made me feel better.


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## M&M (Jan 20, 2002)

Eef, I'm with you on that JoJen. I sometimes wonder if people think they're being helpful or are really that clueless. I choose not to believe they are purposefully mean because that's just too ugly of a thought.







That is one reason I love







this forum...A bunch of other people who "Look just fine"...Just like me!!







And I can't recall my fellow FMers or CFSers ever being rude. (Of course that could be because I can't remember anything...ROFL...But I choose to believe it's because you all understand







)


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## ShellyMcG (Jul 29, 2002)

I already had my say on this subject, but feel as though I need to say it again.People treat you the way you allow them to treat you.JoJen said she feels it is better to just keep her mouth shut. Mind you---I don't tell the lady behind me in the grocery store about my aches and pains, but the people I deal with on a daily basis-- and care about-- all know that 'ol Shell has problems. No one ever says---"But you look good" to me.If I say I hurt--it means I hurt.((Soft Warm Hugs)) from Shelly


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## squrts (Aug 14, 2000)

shelly ive heard these types of things many times before.i really think,if your not bothered by the coments people make,it was in your personality all along.we are social beings and what people say does matter!generaly,we need the"tribes"suport and aknowagement,its built in to us.some people,like you,have the ability to refuse the negitive coments,but its a hard thing to program into our minds,espicaly when fighting these damn diseases.(((hugs)))back at ya!


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## M&M (Jan 20, 2002)

I have 2 more!! (oh joy!!)







1) Emotional liability - Or, when you feel so bad you have no emotional resources left, and someone says something that normally wouldn't bother you, but due to this disease it really really really affects you.2) People making inappropriate jokes - For example "Oh yeah, I'd like to get on disability too. I don't feel good a lot." <lesigh>


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## ShellyMcG (Jul 29, 2002)

Hi DennyIn a previous post on this matter you mentioned anxiety. I am the anxiety queen. I am unable to take antidepressants due to side effects---trying Lexapro next week. I live on Xanax and Norco.I am bothered if people make negative comments. Having said that-------I still must say that I don't get negative comments from people regarding my inability to function as a "normal" person--whatever that is. I have had to deal with FM for 17 years. I was fortunate to find a Rheumatologist 15 years ago that specializes in FM. I was never told--by any one-- that "It's is all in your head". My family--and it is a very large one---all know about my condition and understand.We are all in this together Denny, and I do understand your concerns and frustrations. I am just trying to help.Here are a few more ((Soft Warm Hugs))Shelly We are all different, unique--but most of all---special. Together with our doctor, we search for the right combination of life styles and meds.I pray that you find something that is comfortable for YOU.


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## M&M (Jan 20, 2002)

I'm glad that worked for you Shelly! Unfortunately not everyone has the same attitude of wanting to learn about FM/CFS. But, I'm glad it worked out for you!


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## squrts (Aug 14, 2000)

My motto:"If I tell ya, I hurt--it means I hurt. If you don't believe me--the h###ll with ya. ""people treat you the way you allow them to treat you."i guess it was these things that made me feel you had such things under control.i realize a motto is an ideal we strive for not a statment of absolute fact,my mistake.i understand your trying to help,i guess i jumped the gun.but i still dont see what you mean about people allowing others to hurt them.


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## M&M (Jan 20, 2002)

I can understand that philosophy to a point...But only to a point. Dunno, but I thought the same thing as you Denny...Apparently our brain fogs are twins today


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## JoJen (Nov 6, 2002)

There are some very good posts here - I especially loved the emotional liability. I have been brought to tears many times. Salespeople who take their good old time while you have been waiting with your pain in only one example. I use to say "I DON'T FEEL GOOD!!!" almost all the time. I said it because I wanted everyone in the house to know it. It was an excuse for not being able to be the wife/mom that I had always been. I finally said "NO MORE - I will never use those four words out loud again". It did nothing to change the situation by using those words. I then tried to put myself in their shoes - really in their shoes. How would I react if I kept hearing I DON"T FEEL GOOD!!!?? I couldn't do or say anything to help the other person out. I don't think a kind word would really lessen the others discomfort.Finally the light went on in the attic!!!! Me, myself and I am responsibile for my health. I bought books, searched the web, attended support groups and seminars to learn more. The more I learned the more I felt like I was in control. This did not all happen overnight. Sorry I sure didn't mean to go on and on - Hope that this makes sense and is helpful somewhat.


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## ShellyMcG (Jul 29, 2002)

JoJenI like your positive thinking. I realize it is not something that can be attained overnight. You go girl!!!DennySorry, but I don't understand your statement:"but i still dont see what you mean about people allowing others to hurt them"I said that people will treat you the way you allow them to treat you. I didn't say anything about allowing people to hurt you. Just the opposite. Of course, along the way, we are all hurt. Sometimes, the people doing the hurting really don't mean it. They just don't understand.ShellyWe are all different, unique--but most of all---special. Together with our doctor, we search for the right combination of life styles and meds.I pray that you find something that is comfortable for YOU.


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## Clair (Sep 16, 2000)

Hmmm - I think its easier said than done when it comes to allowing people to treat us in a certain way. Sometimes we don't get much choice in the matter....no matter how much we try and educate people.My worst gripe concerning this is with doctors, they should know better, but they still treat us like malingerers sometimes... and the rest of society takes their cue from these self appointed 'omnipotent beings'.Clair


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## JoJen (Nov 6, 2002)

Of course in normal regular relationships one can apply the theory of "You are treated the way you allow people to treat you." I really fail to see or understand how this can be when one is living with a chronic illness. Shelly maybe it would help us all here if you could possibly give a couple of examples. I know that I would like to understand this a bit more! Thanks


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## ShellyMcG (Jul 29, 2002)

I have an example that I think will address the last two posts.JoJen asked for an example of how we let people treat us.Clair said that doctors treat us as though we are malingerers.Here we go;I was having a problem last week with a reaction to a med. I had spoken to my doctor's nurse during the day, and then called at about 5PM and got the answering service. They asked what my called concerned, and I tried to explain. I was told that the doctor's office was closed for the day. I said I knew they were there, and that they had turned the phones off. She--again-- said that the doctor gave firm instructions about not allowing people to call for a prescription after hours. I asked her what she would do if I called at 8 PM, and said it was an emergency. She hesitated, and again said that she could not put me through about a prescription. I told her it was an emergency, and I wanted to speak to the office. She then said that she would call and ask. I got through immediately. I have had the same Rheumatologist for 15 years. He specializes in FM. I have never been treated with anything but respect. He and I trust one another.One last thing. I think we all must take into consideration the fact that we are not all affected the same way by FM, and that some of us have multiple illnesses. We are all just out here doing the best we can. Finding a good, caring doctor is a must. Then, we have to educate the people about our situation.((Soft Warm Hugs))Shelly We are all different, unique--but most of all---special. Together with our doctor, we search for the right combination of life styles and meds.I pray that you find something that is comfortable for YOU.


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## JoJen (Nov 6, 2002)

Shelly - I bet that the fact that he was a doctor whom you have been treated by for over l5 years played a big role in the treatment that you received. I think that most of us here thought you were referring to people that we interact with on a daily basis - relatives, friends, neighbors, salespeople, etc. Try waiting at the hospital for tests and you can't keep your head up. Do you really think that complaining HELPS!!! I really enjoy this exchange of ideas. It surely helps with Fibro Fog - keep that brain thinking.Be Well!!!


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## ShellyMcG (Jul 29, 2002)

Jo JenI do mean relatives, friends, neighbors, salespeople, etc---guess the above story was a bad example. ( I thought it was a pretty good one.) ;-) I might also add that I am 58 years old, Mother of four grown children, Grandmother of 4, and a recent widow. My husband was killed in an auto accident last year. I am not telling you that for sympathy. I am telling you that because I am learning to take care of myself. I have never lived alone before. I have a very large family. My parents took care of me until I was 19, and my husband took care of me for the next 38 years. ALL I did was raise four kids. ;-). My FM was dx when I was 40---don't really know how long I have had it. I have learned to tell people---I don't care who they are--what I can and cannot do.I hope we are not wearing out this subject. It is very important me.If I was in a hospital waiting for tests, and couldn't hold my head up, I would not complain--I would ask for help. If that didn't work--you bet I would complain. Once again-----People treat you the way you allow them to treat you. ((Soft Warm Hugs))Shelly We are all different, unique--but most of all---special. Together with our doctor, we search for the right combination of life styles and meds.I pray that you find something that is comfortable for YOU.


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## JoJen (Nov 6, 2002)

Thanks for your reply - Sometimes I find that life experiences make us stronger. You are living proof - I do think that this is a great topic and hopefully others can give their imput. It is just an exchange of our own individual opinions. I do believe that by adding some of the life experiences just adds. Maybe others can describe a situation that has bothered them. We each could express how we would of handled it. Just a Thought..... You have a wonderful day!


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