My doctors mom has Fibromyalgia/ rant

I really don't know how bad her mom's is, or if it's mild, but my doctor is sending me to the pain clinic and also to the Ruehmatologist for the proper diagnosis.

My doctor (well NP rather, but she's the one I see) said her brother lives with chronic pain so she understands how they change, when my mom told her I'm not the same. She then went on to say he has this or that wrong with him and he works.

I feel like this lady was directing and he works at me like I should work.If she can find me a job where you don't have to wear shoes then great I'll go to work and then I'll come home and roll around on my floor like a dieing dog! When I'm on my feet for to long they swell up and make it impossible to wear shoes for a few days.I have chronic foot pain anyway and have to buy my shoes a size and half to big just so I can wear them.

She never said anything about her mom having chronic pain.

AS a nurse I can tell you that everyone handles pain differently, and the first thing and most important thing you learn is

PAIN IS WHAT THE PATIENT SAYS IT IS

It doesn't matter what you think, or I think, it is what the person having the pain thinks. That is what bothers me so much about disability, how can one person judge anothers persons pain or ability to function with that pain.

WEll enough of my ranting,

Sandi

It doesn't matter who does what!!!

It matters what I feel you can do.

It matters what I don't feel like doing.

Do you know what a synonym for Compare is?

It is DISCRIMINATE and that is not allowed.

So the next time someone says to me well so and so

has fibro and she can do ----I am going to say very

politely.....

'Are you discriminating against me?'

That will shake them up.

Sandi

I struggle a bit with nosy judgmental busy bodies who ask, "why aren't you working?" or "wouldn't it be better for you to be out in the world contributing instead of sitting at home obsessing about your health problems?" or..."when will you be better enough to go back to work?" If someone I don't know at all asks this, I would say, "what is your need to know?" or "I'm working on my novel." (this answer was supplied to me by my friend who has had fibro for many years and now on disability). People, even good "friends" can be ridiculously uninformed about how disabling fibro can be, so I might send them some info and take the opportunity to educate them. Even then, they still may not get it. I had sent some scientific info about fibro and CFS to a nurse friend of mine, and I thought she got it, until she asked me on the phone yesterday, "but you are feeling much better now, aren't you?" *SIGH* Bottom line, I guess I have to learn to be less sensitive and stop caring so much what people think or assume about me, because getting my blood boiling over the careless insensitive remarks from the "normals" just stresses me out and makes my symptoms worse. I also have to stop expecting people to "get it" when even many doctors don't understand us and what we are going through each day.

Post edited by: hipmama42, at: 03/18/2008 08:27

Most people at least try to teach children and teenagers to respect others for their race, religion, gender, etc. and I think teaching everyone we can to be understanding and tolerant of each other is a great step towards progress in understanding diseases. If people don't think a disease or condition exists, why would they research it and try to find a cure? I find myself being very sensitive a lot of the time because people act and say things that tell me they don't believe my condition and have even had people imply their pain or condition is worse, etc. I can't say it is or isn't because as I said earlier, I don't walk in their shoes, I can only sympathize for/with them and hope they show me the same respect and concern.

I apologize if this didn't make a lot of sense. Sometimes I find it hard to clarify what I mean. I can think it clearly, just can't say or write it. I put people in general but include both those of medical fields and every other type person.

My best to each of you and I hope you are all having good days... or as good as you possibly can.

*gentle, caring hugs to each of you*

Post edited by: Midnyte, at: 04/11/2008 23:15

BUT until my flareup I NEVER EVER knew the power of this condition. I was slammed so hard on the ground I could hardly do anything for close to a year.

I've improved some but not how it was and after 4 years I don't think it will ever be.

To anyone that is suffering, disabled, or in anyway caught in the grasp of fibro I felt during my flareup and that is YOUR baseline???

I really don't know how you are doing it. I feel like crap but I know some of you are feeling 10X crap. Nobody gets this unless they have it.

Then....BOOM! In August I had my first full blown flare, and spent the next months in bed much of the time, feeling like I'd been run over by a truck, with such pain in my back at night that I felt like someone was clamping down on my spinal cord and pinching as hard as they could -- hardly the strength to get out of bed and to the bathroom, and could not sleep for 3 days and nights because of the pain. Then when it finally let up I slept 16 hours a day.

Until then, I didn't know the full power of this condition and how it can completely turn your life upside down and make you wonder if you will ever have even one good day again. It destroys relationships and family life and self-esteem/self-confidence. Thank GOD I found this group when I did, because I was near the end of my rope.

Now with the spring coming, I've had a couple of good days in a row and feeling hope once again. I am so grateful!

I don't know how my pain and fatigue compares with anyone else's and it doesn't really matter. What matters is that I can now understand and can empathize with every one who has fibro at every level of pain and disability. What matters is how I deal with my pain and how I choose to handle the difficult times. It is so much easier now that I have this wonderful, caring family to pull me thru them. God Bless you all.

falling asleep finally

Post edited by: hipmama42, at: 04/12/2008 00:02