learning to live with it....arrghhh!!

[Guest guest]

Yes, I can second those kicks to the groin!! I have had more than enough experiences with doctors telling me to live with it". I remember in the summer of 1999 when I first suspected I had fibromyalgia, after reading an article in our daily newspaper about it, that I mentioned it to the psychologist that I was seeing then. I even clipped the article from the newspaper to show her....she looked at it, listened to me maybe for 2 minutes and said, "So what? there's nothing you can do about it"...and threw the article back at me. That was the last time I saw her. Then when I went to my Gp about it, he said, "Well, maybe, but lets "follow" the situation for a few months still..." and then he left on extended leave... Finally a wonderful ER female doctor told me that I definitely had fibro after I had to go to the ER just totally physically & emotionally drained that my hands & legs were shaking!!!

Then recently after being told by one neurologist that I had a muscle disease and me crying, denying, angry, etc,,, until I finally accepted it. Then they sent me for 2 different muscle biopsies, and now the so-called ONLY"MD-specialist" of Finland tells me that I do NOT have a muscle disease. So I ask him then why am I losing strength in my muscles, he says, "Well, IF I knew that I would be famous, wouldn't I?!!"..... GGRRRR.....that statement has my blood boiling. So now I have to go to another neurologist next week... well we will see what she has to say.

To top it all off, today there was a "meeting" with my GP, my health nurse, my social worker & my family worker about my health issues and what was to be done....how they were going to support me...and about helping me to feel better... welllll...... Now I am hearing again...EXERCISE, DO MORE,---- NO reason why you can't..... HELLO People, I have a severe form of Fibromylagia and an unknown reason why muscle strength is gone , especially my arms & neck. Now that is not normal, at least to me.... A person would have to be a bed patient to lose so much strength from their hands & arms that it can be measured..... in Feb 2000 my grip strength was 19 right hand and 21 left hand.... now it is 4½ right & 5½ left... and I have being using these hands everyday to cook, clean, scrub, etc.... they are far from inactive....especially with a 4 & 6 year old!!! I wouldn't mind doing exercise, I am not lazy BUT I know from experience what MY body "says" when I try to increase the physical work load, or exercise, whatever.... and IF I have CMFP, like I suspect, thanks to the links that Helen provided me with then it is useless & painful to do any rehabilitating exercise until after those TPs are taken care of.....

Sorry all for rambling on....after reading these posts about Lings doctor I would like to kick him personally and then start on mine!! It really hit a nerve when I read these posts cause I have been there and in fact am still there....with doctors that have NO idea HOW I feel nor do they listen!! I am now being accused of "looking" for a disease... lol.. isn't that a joke.... I concentrate too much on my illnesses I was told today. Well geez if they woke up every morning feeling the way I do, as many of you all do, then I am sure they would also "think" about the illnesses & causes also!!!

As far as headaches, a very good majority of headaches are caused by neck problems. Ling, has a physiologist ever measured your neck strength? Mine did with me in some kind of get up that reminded me of a space helmet and it was attached to a computer. I found out that I have very weak & tight neck muscles and that's why I get the headaches so often.

Sorry again for rambling. I am having a lousy day & needed to vent. Thanks for listening!!

Hugs to all,

in Finland

,

Thanks for those kicks, they really made me feel much better....... . The doc who "told me to live with it" was a psychologist, and he 'treated' me by teaching me to keep a headache diary.... [as though I need one to teach me that.]

Some people just deserve groin kicks, don't they?

Ling

Ling,

AARRRRGGGGHHHHH! Might I ask what is the point of even seeing this doc if he says that if you need to see me....I can't help you. PUHLEEEEZE! That comment deserves a mighty swift groin kick! I also take Baclofen, and I don't notice any side effects, but that's me. You can experience side effects many months after starting a drug, especially if it has a long half-life. (example, prednisone...builds up in your body before it is gone) I may not be a medical expert, but I've gone round this one long enough to know that neck problems can CERTAINLY cause headaches. Any doctor who says no, deserves a groin kick too! Uh-oh, my doctors better watch out today! Hee hee! And....(boy am I on a roll!) any doctor who says you need to "learn to live with it" has never had a chronic pain problem.

......AND deserves a groin kick!

Crossing my fingers and toes for this next doctor call,

[Guest guest]

You know what I find funny? More and more people are being told to just live with it. The *only* people who say things like that are sure not chronic pain sufferers. Next time someone tells you that you are "too concerned" about your health....ask them if they could be held financially responsible if you ignore symptoms of a very serious illness..(due to their saying you are too concerned)..and something happens? The answer to this question is YES!!!!! You can also ask them to send you a monthly newsletter about your body and how you feel...since you don't seem to know how *your own body* feels. GGGGRRRRRR! I just can't express how angry this gets me!

Still steaming

-- learning to live with it....arrghhh!!

Yes, I can second those kicks to the groin!! I have had more than enough experiences with doctors telling me to live with it". I remember in the summer of 1999 when I first suspected I had fibromyalgia, after reading an article in our daily newspaper about it, that I mentioned it to the psychologist that I was seeing then. I even clipped the article from the newspaper to show her....she looked at it, listened to me maybe for 2 minutes and said, "So what? there's nothing you can do about it"...and threw the article back at me. That was the last time I saw her. Then when I went to my Gp about it, he said, "Well, maybe, but lets "follow" the situation for a few months still..." and then he left on extended leave... Finally a wonderful ER female doctor told me that I definitely had fibro after I had to go to the ER just totally physically & emotionally drained that my hands & legs were shaking!!!

Then recently after being told by one neurologist that I had a muscle disease and me crying, denying, angry, etc,,, until I finally accepted it. Then they sent me for 2 different muscle biopsies, and now the so-called ONLY"MD-specialist" of Finland tells me that I do NOT have a muscle disease. So I ask him then why am I losing strength in my muscles, he says, "Well, IF I knew that I would be famous, wouldn't I?!!"..... GGRRRR.....that statement has my blood boiling. So now I have to go to another neurologist next week... well we will see what she has to say.

To top it all off, today there was a "meeting" with my GP, my health nurse, my social worker & my family worker about my health issues and what was to be done....how they were going to support me...and about helping me to feel better... welllll...... Now I am hearing again...EXERCISE, DO MORE,---- NO reason why you can't..... HELLO People, I have a severe form of Fibromylagia and an unknown reason why muscle strength is gone , especially my arms & neck. Now that is not normal, at least to me.... A person would have to be a bed patient to lose so much strength from their hands & arms that it can be measured..... in Feb 2000 my grip strength was 19 right hand and 21 left hand.... now it is 4½ right & 5½ left... and I have being using these hands everyday to cook, clean, scrub, etc.... they are far from inactive....especially with a 4 & 6 year old!!! I wouldn't mind doing exercise, I am not lazy BUT I know from experience what MY body "says" when I try to increase the physical work load, or exercise, whatever.... and IF I have CMFP, like I suspect, thanks to the links that Helen provided me with then it is useless & painful to do any rehabilitating exercise until after those TPs are taken care of.....

Sorry all for rambling on....after reading these posts about Lings doctor I would like to kick him personally and then start on mine!! It really hit a nerve when I read these posts cause I have been there and in fact am still there....with doctors that have NO idea HOW I feel nor do they listen!! I am now being accused of "looking" for a disease... lol.. isn't that a joke.... I concentrate too much on my illnesses I was told today. Well geez if they woke up every morning feeling the way I do, as many of you all do, then I am sure they would also "think" about the illnesses & causes also!!!

As far as headaches, a very good majority of headaches are caused by neck problems. Ling, has a physiologist ever measured your neck strength? Mine did with me in some kind of get up that reminded me of a space helmet and it was attached to a computer. I found out that I have very weak & tight neck muscles and that's why I get the headaches so often.

Sorry again for rambling. I am having a lousy day & needed to vent. Thanks for listening!!

Hugs to all,

in Finland

,

Thanks for those kicks, they really made me feel much better....... . The doc who "told me to live with it" was a psychologist, and he 'treated' me by teaching me to keep a headache diary..... [as though I need one to teach me that.]

Some people just deserve groin kicks, don't they?

Ling

Ling,

AARRRRGGGGHHHHH! Might I ask what is the point of even seeing this doc if he says that if you need to see me....I can't help you. PUHLEEEEZE! That comment deserves a mighty swift groin kick! I also take Baclofen, and I don't notice any side effects, but that's me. You can experience side effects many months after starting a drug, especially if it has a long half-life. (example, prednisone...builds up in your body before it is gone) I may not be a medical expert, but I've gone round this one long enough to know that neck problems can CERTAINLY cause headaches. Any doctor who says no, deserves a groin kick too! Uh-oh, my doctors better watch out today! Hee hee! And....(boy am I on a roll!) any doctor who says you need to "learn to live with it" has never had a chronic pain problem.

......AND deserves a groin kick!

Crossing my fingers and toes for this next doctor call,

~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMemorial Pagehttp://www.dreamwater.net/lovingmemory/Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi ,

My physiotherapist had assessed me before using biofeedback and getting me to do some exercises - she said that my muscles were weak, including my upper back, and my general fitness was not too good too.

Sorry to hear about your lousy day, dont worry about rambling - just vent all you want!

Hugs, Ling

learning to live with it....arrghhh!!

Yes, I can second those kicks to the groin!! I have had more than enough experiences with doctors telling me to live with it". I remember in the summer of 1999 when I first suspected I had fibromyalgia, after reading an article in our daily newspaper about it, that I mentioned it to the psychologist that I was seeing then. I even clipped the article from the newspaper to show her....she looked at it, listened to me maybe for 2 minutes and said, "So what? there's nothing you can do about it"...and threw the article back at me. That was the last time I saw her. Then when I went to my Gp about it, he said, "Well, maybe, but lets "follow" the situation for a few months still..." and then he left on extended leave... Finally a wonderful ER female doctor told me that I definitely had fibro after I had to go to the ER just totally physically & emotionally drained that my hands & legs were shaking!!!

Then recently after being told by one neurologist that I had a muscle disease and me crying, denying, angry, etc,,, until I finally accepted it. Then they sent me for 2 different muscle biopsies, and now the so-called ONLY"MD-specialist" of Finland tells me that I do NOT have a muscle disease. So I ask him then why am I losing strength in my muscles, he says, "Well, IF I knew that I would be famous, wouldn't I?!!"..... GGRRRR.....that statement has my blood boiling. So now I have to go to another neurologist next week... well we will see what she has to say.

To top it all off, today there was a "meeting" with my GP, my health nurse, my social worker & my family worker about my health issues and what was to be done....how they were going to support me...and about helping me to feel better... welllll...... Now I am hearing again...EXERCISE, DO MORE,---- NO reason why you can't..... HELLO People, I have a severe form of Fibromylagia and an unknown reason why muscle strength is gone , especially my arms & neck. Now that is not normal, at least to me.... A person would have to be a bed patient to lose so much strength from their hands & arms that it can be measured..... in Feb 2000 my grip strength was 19 right hand and 21 left hand.... now it is 4½ right & 5½ left... and I have being using these hands everyday to cook, clean, scrub, etc.... they are far from inactive....especially with a 4 & 6 year old!!! I wouldn't mind doing exercise, I am not lazy BUT I know from experience what MY body "says" when I try to increase the physical work load, or exercise, whatever.... and IF I have CMFP, like I suspect, thanks to the links that Helen provided me with then it is useless & painful to do any rehabilitating exercise until after those TPs are taken care of.....

Sorry all for rambling on....after reading these posts about Lings doctor I would like to kick him personally and then start on mine!! It really hit a nerve when I read these posts cause I have been there and in fact am still there....with doctors that have NO idea HOW I feel nor do they listen!! I am now being accused of "looking" for a disease... lol.. isn't that a joke.... I concentrate too much on my illnesses I was told today. Well geez if they woke up every morning feeling the way I do, as many of you all do, then I am sure they would also "think" about the illnesses & causes also!!!

As far as headaches, a very good majority of headaches are caused by neck problems. Ling, has a physiologist ever measured your neck strength? Mine did with me in some kind of get up that reminded me of a space helmet and it was attached to a computer. I found out that I have very weak & tight neck muscles and that's why I get the headaches so often.

Sorry again for rambling. I am having a lousy day & needed to vent. Thanks for listening!!

Hugs to all,

in Finland

,

Thanks for those kicks, they really made me feel much better....... . The doc who "told me to live with it" was a psychologist, and he 'treated' me by teaching me to keep a headache diary.... [as though I need one to teach me that.]

Some people just deserve groin kicks, don't they?

Ling

Ling,

AARRRRGGGGHHHHH! Might I ask what is the point of even seeing this doc if he says that if you need to see me....I can't help you. PUHLEEEEZE! That comment deserves a mighty swift groin kick! I also take Baclofen, and I don't notice any side effects, but that's me. You can experience side effects many months after starting a drug, especially if it has a long half-life. (example, prednisone...builds up in your body before it is gone) I may not be a medical expert, but I've gone round this one long enough to know that neck problems can CERTAINLY cause headaches. Any doctor who says no, deserves a groin kick too! Uh-oh, my doctors better watch out today! Hee hee! And....(boy am I on a roll!) any doctor who says you need to "learn to live with it" has never had a chronic pain problem.

......AND deserves a groin kick!

Crossing my fingers and toes for this next doctor call,

~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMemorial Pagehttp://www.dreamwater.net/lovingmemory/Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hi Everybody,

I've got some good news. finally the insurance co. had

agreed to send me abroad! Wow..I'm happy!

I wanted to share with you. The only thing is that

they want to send me to Colombia, Latin America to specialists.

I'm glad because at least they are cooperating.

When I'm back I will tell you all what I had been through *before*

thy agreed to send me abroad!

They called this morning to tell that it will be next Sunday 3 March.

Thanks for the support, it is of great blessing to me.

Jess, I hope tthat they can help you out. Having nausea and vomit is no fun

at all!

Ling--about the headache, is it migraine?

---If I lived in the same country I would have asked all of you to

go to a cafe to celebrate! Yes, it's a great relief to me.

Hugs,

Xiomi