Re: Painful and weak legs

[Guest guest]

I have painful and weak legs and have to use a wheelchair but its not from

FM/CFS its from something else. I dont have too much advice only that before I

got the dystonia I did have probs walking and thought it was the FM now the

dystonia just complicates everything. Possibly talk with your dr or physio about

it and I hope you can find a solution

----- Original Message -----

From: meshel badzgon

I have been living with CF/FM for several years now and have belonged to this

group for some time.

I am interested in hearing from others who have specific problems with their

legs. My legs hurt so bad every time I walk upstairs that sometimes it brings

me to tears. It takes a while after for my legs to stop hurting, even after I

sit down. Lately they have been feeling weak and I fear losing mobility due to

this.

[Guest guest]

I also have the aches, especially in the back of the thighs when I stand in the

shower etc. Sometimes its so achy I collapse. Sucks

Take care

Tree

________________________________

I have been living with CF/FM for several years now and have belonged to this

group for some time.

I am interested in hearing from others who have specific problems with their

legs.  My legs hurt so bad every time I walk upstairs that sometimes it brings

me to tears.  It takes a while after for my legs to stop hurting, even after I

sit down.  Lately they have been feeling weak and I fear losing mobility due to

this.

[Guest guest]

Kat I believe I may know the trigger in my case. I was sexually abused from 5yrs

old to 15 and about 4 years ago my sisters and I did a special video for

Families and Children on child sexual abuse. I had a really difficult doing a

video about this issue and then being at the breakfast when they showd the tape.

My sister says I cried the entire time and she noticed me going down hill after

that. so that may be my rrigger.

____________ _________ _________ __

From: kat13lady <kat13ladyyahoo (DOT) com>

I missed this post from before but I have a couple of questions. I,

too, was very afraid of losing my mobility, most of my pain comes from

my legs. First, has there been any recent trauma? My problems became

frightening after two emergency visits to the hospital ($$$) and it took

months to even become functional again. Felt like I had shin splints,

crushed glass in my ankles, fire in my knees and even terrible hip pain.

[Guest guest]

I also have very bad balance issues and I bounce off walls or hold on to the

wall as I walk.(hugs)

Debbie Breehl

________________________________

Gotta love the brain fog!!! I can deal with most things that come with this

disease but brain fog pisses me off!!!! I am intelligent and educated and it's

very frustrating and hurtful when people make me feel stupid and I have no

control over it!!!

[Guest guest]

I too have a lot of leg pain. And I too was molested by my father. I believe

that the onset of my FM, CF and PTSD are all related to when these memories and

flashbacks began to occur. They started in the fall of 2003 and for most of 2004

they were constant, constant trauma, a lot of stress. Then 2005 and 2006 I was

dealing with the realization that my father did this (who is deceased), then the

reactions of family (esp. my mother who did not believe me at first.) I still

have 2-3 flashbacks a year. I've been through a lot of counseling and even flew

out to a recovery week; and I'm doing a lot better. I believe now that the

trauma of all that has settled down, my body has decided to crash. My symptoms

became very apparent in the summer of 2008, although I was having many of them

before this but did not recognize them as FM and CFS related.

I'm wondering how many here in this group have had some sort of sexual abuse? I

did read an article that said a lot of SA survivors have CFS and/or FM.

BTW-I am not new to the group, just have been quite, but would like to join in

now and then. I had to resign from my job in Nov. and am now one of the Unempl.

statistics. LOL. But God is good and is supplying for us.

>

> Kat I believe I may know the trigger in my case. I was sexually abused from

5yrs old to 15 and about 4 years ago my sisters and I did a special video for

Families and Children on child sexual abuse. I had a really difficult doing a

video about this issue and then being at the breakfast when they showd the tape.

My sister says I cried the entire time and she noticed me going down hill after

that. so that may be my rrigger.

>

>

> ____________ _________ _________ __

> From: kat13lady <kat13ladyyahoo (DOT) com>

> I missed this post from before but I have a couple of questions. I,

> too, was very afraid of losing my mobility, most of my pain comes from

> my legs. First, has there been any recent trauma? My problems became

> frightening after two emergency visits to the hospital ($$$) and it took

> months to even become functional again. Felt like I had shin splints,

> crushed glass in my ankles, fire in my knees and even terrible hip pain.

>

[Guest guest]

Debbie -

First let me say I am so very sorry for what happened to you, but very

impressed on how you have decided to handle it. It is appalling and

disgusting how many people suffer at the hands of sexual predators, I

don't know if the problem is getting worse or if more people are simply

coming forward about it.

But back to the subject at hand - this definately could have been a

trigger (divorce and death of a loved one are also up there). While our

disease is physically very real, no one should deny that stress can play

a huge role in it. Which is why so many of us get sent to a shrink

instead of an M.D. I encourage you to continue to confront your past

because only until you 'reconcile' it in your heart and mind, it will

continue to have a severe affect on your disease. Since we cannot treat

the disease itself, we have to find ways to treat the symtoms if we are

ever going to have a shot at a 'normal' life.

And for the leg pain....my first two years were spent with a shrink who

was basically a pill distributor. I was on opiates most of the time

which was the only thing that allowed me to function out of bed.

Unfortunately, I couldn't 'hear' what my body was telling me, so I

wasn't getting better, I was just masking the symptoms. And then of

course there is the issue of when you have to come off the meds....

there is no simple answer, you have to try different things, but never

forget, YOU HAVE A RIGHT NOT TO BE IN PAIN. The only problem is finding

a responsible doc who agrees with you.

I actually thought about getting a wheelchair or crutches during my

worse times, but I feared if I gave into that I would never walk again.

So I pushed through it until I could turn it around. Still have leg

pain, but I can at least get up and shower, go to appointments, etc.

That's about it of course. And I had that luxury, so you must do

whatever you need to do.

Just my two cents. Thanks for sharing and best of luck to you.

ljg

>

> Kat I believe I may know the trigger in my case. I was sexually abused

from 5yrs old to 15 and about 4 years ago my sisters and I did a special

video for Families and Children on child sexual abuse. I had a really

difficult doing a video about this issue and then being at the breakfast

when they showd the tape. My sister says I cried the entire time and she

noticed me going down hill after that. so that may be my trigger.

[Guest guest]

> I'm wondering how many here in this group have had some sort of

> sexual abuse? I did read an article that said a lot of SA survivors

> have CFS and/or FM.

Me too. Uncle was sexual with me from my earliest memories, other

uncles and others were also sexual later.

Child abuse takes much wider swaths of victims involving emotional,

physical, psychological abuse as well.

In addition, the Cold War that ended with the Berlin Wall coming down

in 1989 with its development of nuclear weapons adds stress leading to

unhealthy habits such as much greater use of caffeine to avoid

sleeping. As in, life won't last, let me get in as much life as I can?

Among other stresses.

Exploring spirituality helps me deal with the many stresses I have

experienced while I felt complete abandonment by religion for many

years. .

Dr Woods, MD, researcher snd spokesperson for NFA reported on

his brain research on FM patients as indicating:

- FM patients can handle no stress at all.

This makes total sense to me.

toni

from iPodTouch

[Guest guest]

I was not, thank G-d, sexually abused, but I was physically and emotionally

abused by more than one person, extending into adulthood. The last straw for me

was when my son died in an auto accident 17 years ago. I developed PTSD with

persistent nightmares and flashbacks, as well as major depression, and became

unable to work. It's been " only " five or six years that I've had FM.

I believe that stress plays a role in a lot of disorders including FM. I am

still working on learning how to stand up for myself, remaining able to access

the coping skills I used to teach others when I was a psychotherapist, and not

letting the stress lead to increased symptoms of any disorder I have. W

hen one is distressed, it is so difficult to remember what to do. Among other

things, I keep a list of possible actions that I can consult. I also try to

remember to say to others that I need to think about whatever it may be before I

respond. This helps me stay calmer.

Re the leg pain, I was trying to think how to describe the sensation in my left

foot. Crushed glass in the joint describes it pretty well. I'm fortunate it is

not all the time.

Barbara S in CT

> >

> > Kat I believe I may know the trigger in my case. I was sexually abused from

5yrs old to 15 and about 4 years ago my sisters and I did a special video for

Families and Children on child sexual abuse. I had a really difficult doing a

video about this issue and then being at the breakfast when they showd the tape.

My sister says I cried the entire time and she noticed me going down hill after

that. so that may be my rrigger.

> >

> >

> > ____________ _________ _________ __

> > From: kat13lady <kat13ladyyahoo (DOT) com>

> > I missed this post from before but I have a couple of questions. I,

> > too, was very afraid of losing my mobility, most of my pain comes from

> > my legs. First, has there been any recent trauma? My problems became

> > frightening after two emergency visits to the hospital ($$$) and it took

> > months to even become functional again. Felt like I had shin splints,

> > crushed glass in my ankles, fire in my knees and even terrible hip pain.

> >

>

[Guest guest]

I am sorry to all who have been abused in any way. It may have something to do

with the Fibro. If you had asked me a year ago I would have said no way but my

sister insist that is when I started going down hill.

The video I did for Families and Children foundation for their annual fund

raiser. Me and two sisters who were also abused did a video for the Family and

Childrens foundation. and it was shown at a breakfast for very influencial

people in our city to raise money for the foundation. so who knows!

Debbie b

________________________________

I was not, thank G-d, sexually abused, but I was physically and emotionally

abused by more than one person, extending into adulthood. The last straw for me

was when my son died in an auto accident 17 years ago. I developed PTSD with

persistent nightmares and flashbacks, as well as major depression, and became

unable to work. It's been " only " five or six years that I've had FM.

I believe that stress plays a role in a lot of disorders including FM. I am

still working on learning how to stand up for myself, remaining able to access

the coping skills I used to teach others when I was a psychotherapist, and not

letting the stress lead to increased symptoms of any disorder I have.