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Fibromyalgia "psychosomatic comment"

Apr 04, 2016 7:46 PM

How do you deal with that statement? I have many other diagnosis but they all seem to get overshadowed or down played to the bottom line fibromyalgia is relieved by exercise and weight loss beyond that the claim is psychosomatic. I keep thinking I will be strong I wont cry the next time I see or hear that but today I find there are tears left to cry.

Apr 04, 2016 8:23 PM

I wish I knew Shammagren. I've heard it from 2 neuro-psychologist docs who wanted me in their very expensive treatment programs. None of my other docs use it, not even the psych docs. Hugs! 🙂💕🙏🌼

Apr 04, 2016 8:47 PM

I am fighting my retirement disability which is rumored to be near impossible to get and way worse than social security disability. They have turned everything to that and I can't find an attorney who will take money only if he wins. I am discovering doctors won't say you can't work and what they say and what they put in thier notes are not always the same. From now on I want everything in writing or it is not an instruction.

Apr 04, 2016 9:05 PM

😕 I've had that experience too. Grrr... Keep fighting. Maybe get a Caregiver type person who is a strong advocate for you to let them know what's what. That did help me once.

Apr 04, 2016 9:06 PM

Doctors don't write it because you can't prove it if it's not there.

Apr 04, 2016 10:17 PM

My doctor says I can't work but they want a rhuemotolgist to say it. My rhuemotolgist told them she defers to my PCP who sees me on a regular basis...ugh the medical merry go round I want off of so bad.

7autoimmunes my husband goes to my appointments with me his frustration, hurt and helpless over my condition is expressed to every doctor. He definitely sets them straight if they don't get it. It took my husband almost 7 years to understand what was going on with me is real... partially thanks to doctors telling me nothing was wrong.

Apr 04, 2016 10:25 PM

Ugh... I totally get it. I went to every kind of doctor I knew of, until a psychiatrist told me that I didn't need him. It wasn't until I developed the right combination of MS symptoms -that I finally got diagnosed (my first such DX). Six weeks later Kaiser refused to treat me and I couldn't be seen anywhere as state computers said I had ins. The years later I got MediCal and a terrific PCP who referred me to everyone I needed. Now, I'm in UT with my DD and have no such help... Tears....

Apr 04, 2016 10:30 PM

Can you see different docs?
I know that's what I should do. But I'm not driving and hate/am so tired of docs. Got to be brave and just try, try try. Right??

Apr 04, 2016 10:44 PM

I leave a trail of doctors lol. I dont really think it is the doctors. I guess I am just thinking how can I win against a big group that turns stuff around. I have spine issues and I just figured out they left out that specialists information who said the risks are to great to operate and I can not lift, bend or twist.

I just hate that word psychosomatic. Yes there is a mind body connection but I have been fighting fibromyalgia for over 10 years. Exercise does not help I think it is some answer doctors are taught in how to BS the patient 101...tell them all issues are diet, exercise and weight loss ( ;

Apr 04, 2016 10:59 PM

I'm with so many of you here!

I hate that psychosomatic label. Of course stress, anxiety, and depression make pain worse. Of course extra weight makes it worse. Of course lifestyle changes will improve symptoms.

This does not change the fact that I am a complete mess (and STILL in incredible pain) even when everything else is "balanced." I worked my butt off to lose weight (nearly 50 lbs since August 2015). I eat so healthy that even the most health-conscious of my family members think that I am too strict (and hard on myself even). I meditate almost daily, practice breathing exercises,and go to cognitive behavioral therapy every 2 weeks. I go to physical therapy twice a week. I attempt exercise at least twice a week--despite the fact that it renders me unable to function for multiple days.

All of these things have definitely improved my symptoms, but they are no where near the cure for what ails me. I am exhausted! And so fed up with being told to change my outlook on life if I want to see REAL results. ARGGHHH

Apr 05, 2016 12:07 AM

Exercise does help some people and I am one of the lucky ones that it helps. I am not sure that I can say my pain is less but it helps keep me more limber, loosens my muscles and I can do more. I think that the type of exercise that you do is VERY important because there are some things like walking that make me hurt more vs helping me. There are other things I want to try in addition to exercising a couple times a week.

Apr 05, 2016 12:57 AM

myfairladies, you are so right! there are many exercises that are off limits to me! i have to really listen to my body (and my instincts) when it comes to activity.

Apr 05, 2016 6:52 AM

Lookie here, I am sure exercise is a great form of treatment.... However, I is way toooo lazy and undisciplined for such a thought. <~~~~spoken in a true SOUTHERN BELLE fashion....sugah could you please peel my orange for me....(giggles at myself once again this morning)/I truly am a hoot to be around all by myself.......😁

Apr 05, 2016 6:54 AM

Haaahaaaaaaaa you too? I thought I am cracking up here all by myself! 😀

Apr 05, 2016 6:55 AM

Lol nope. It was the southern belle part that did it for me

Apr 05, 2016 6:56 AM

<~~~fannning myself....sitting on my (pretend)/veranda....

Apr 05, 2016 8:39 AM

Flown I totally agree with you. I try to do what I can and honestly if it is clean the kitchen or exercise I am going to clean the kitchen...not because I won't exercise but because it is a priority and by the time the kitchen is done I am hurting so bad I can't do more.

Myfairladies I walk and it does hurt like hell but I couldn't tell you if it is the fibromyalgia or my other issues.

I just can't understand why if you have multiple issues and fibromyalgia too they throw fibromyalgia over everything and call it psychosomatic.

Apr 05, 2016 10:01 AM

It took me years, and a lot of research, to not only figure out wtf was wronv with me, but to then point it out to my VA NP. Thankfully, the VA accepts that fibro exists and has definite symptoms, and that I have many of them.
However, they now tend to use it as an excuse for EVERY other pain or problem! Umm, that's not fibro, it's seasonal allergies. That isn't fibro, my hip is damaged. Not fibro, but arthritis. Or spine. Or cramps!!!
Eye roll....

Apr 05, 2016 6:46 PM

Terri, is that veranda made from wooden pallets? 😉 lol

Apr 06, 2016 12:43 AM

Princess chaos that sounds like my situation. My spine problems took forever to come to light because it was all fibro. I have been diagnosed fibro 6 times (1 obgyn, 1 pcp, 2 rhuemotolgist, 2 pain clinics). Really like the first couple times weren't good enough or that it wasn't already on my list of current conditions. They all act like it just started but i have been in pain 11 or is it 12 years now.

I am starting to think the main reason fibromyalgia suffers have depression is the accusations of faking it, no one believes us and we will never hear the end of it stigma.

Apr 06, 2016 2:11 AM

Your right but I have both lupus and fibromyalgia the pain is non stop everyday almost so please tell me how anyone could not be depress after all this it's too much for anyone to endure

Apr 06, 2016 2:13 AM

And not being able to sleep ain't no picnic either

Apr 06, 2016 9:56 AM

99 I agree 100 percent. I don't have lupus but I have other pain causing issues. I have a combination of drugs that knocks me out half the time but even from that I wake up in pain and i dont get refreshed sleep. The other half of the time I can't sleep and when I catch a nap it was like I was awake I hear everything around me.

I would not wish my current life on anyone. As I told my doctor this is no way to live, not even to exist. I am tired of paying the price for family time. Fox example we got theater tickets (A Night with Janis Joplin was awesome) on the 26th. I walked from the parking garage to the theater not terribly excessive. About an hour sitting, intermission spent standing then the rest of the show. No big deal right? Yet today I am still trying to get over the pain flare. I use to cry asking if I have been so bad in life that I deserve to be in hell.

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