Re: CFS and Difficulty Walking

[Guest guest]

Yum , Thanks for the cookies.

I have had severe muscle problems, balance and dizziness from the

beginning and was sure I had something besides cfs and I don't have cfs as the

CDC describes it but what I do have is ME.

I would make absolutely sure it isn't something else and not let her just

fit you under that umbrella because it may be convenience for her. You may

have to push her but it would be the thing to do.

Tired and grumpy

Cat

[Guest guest]

hi Michele

I have problems walking steadily and with balance and

weakness..not the buckling..I hope as well if one must

select between CFS vs MS that it is CFS..personally

(so many years now) I suspect we don't process

minerals esp. properly or else we don't have enough

that we need...but gosh CFS/CFIDS comes at

all different levels!! I " think " I just saw a post

come though about CFS can have alot of

variances...someone can have a " light " case to someone

else a very severe case. I'm wondering if visiting

the CDC website might help...I am still elated at

finding out the CDC is 100% supportive and doing an ad

campaign ..prob. this group reproted it before I came

along!!LOL But anyways back to issue what about

printing out the " Treatment " info at the

CDC Website and tactfully circling some things...how

can a physician (esp. in the US) discount " THE " CDC??

Hugs

Marie IL

--- michele wrote:

> hello all

>

> first of all - HAPPY HOLIDAYS! *passes out

> gluten-free cookies* hehee

>

> My question is this.

>

> My primary doctor thinks I have CFS, but has always

> been stumped by

> the fact alot of the time, I can not walk that well.

> She says that

> people CFS can walk 'normally', though it's

> exhausting, they can do

> it.

[Guest guest]

Hi Cat

I'm sincerely bewildered and hoping you will help me

understand..here is my exposure (U.S.) on the topic of

M.E./CFS...

Could you possibly relate what your

experience/symptoms with M.E. have been, I am curious

genuinely. For example, " and I don't have CFS as the

CDC describes it " ...what do you experience that was

not described in the CDC information?

I hope you know my curiousity is only fueled by

bewilderment because I am in the U.S. and just as an

example I did a search: " Is CFS M.E.? " and over

103,000 listings came up, I glanced at the first few

pages it was all listings of " CFS/M.E. " groups/sites

or " M.E./CFS " groups/websites. Added to that the

constant references in postings to " CFS/ME " ...I'm

hoping for your " patience " with me on this one!

Thanks

Marie IL (US)

" I have had severe muscle problems, balance

> and dizziness from the

> beginning and was sure I had something besides cfs

> and I don't have cfs as the

> CDC describes it but what I do have is ME. "

[Guest guest]

> Does anyone else with CFS have difficulty walking?

>

> My primary doctor thinks I have CFS with a Neurological Component,

> but my Neurologist is now saying they never ruled out MS (Multiple

> Sclerosis). Personally, I prefer my primary doctor's theory ha

ha

>

> But seriously ... any feedback is much appreciated

>

> -michele

Hi,

I've been lurking here for a few weeks, but I just had to jump in and

respond to your question.

I was diagnosed with CFS at the end of September, but I had been sick

since last December. I went through the usual array of tests --

chest xray, pulmonary function, exercise stress test, MIBI,

angiogram, CAT scan -- without finding anything, and then was

diagnosed by an internist to have CFS.

I have severe post exertional malaise. I don't seem to create enough

energy to carry my own weight. I can walk 20 or 30 steps on my own,

but any more will cause a crash. I use a wheel chair for everything

but our own house. My wife has adapted really well -- she had only

just stopped using a stroller for our youngest child. She simply

replaced the stroller with a wheel chair. Though I have to keep

reminding her that a person in a wheel chair gets more say in the

destination than a person in a stroller!

Just yesterday my brother looked at me as I shuffled across the room

and said, " you're not limping, you're swinging your legs. " He went

on to explain that I was trying to use as little energy as possible,

so I was rocking slightly to create enough momentum to swing my legs

forward to take a step rather than lifting them. I immediately

realized he was right. I can often walk almost normally first thing

in the morning, but the more tired I get the worse the " swing "

becomes.

When he said this it was like a light going on. Often people had

looked at my movement and quizzed me up and down about what was

stopping me from moving my legs normally. I was mystified. I just

couldn't do it and couldn't explain -- until now. It's not a matter

of pain, or of weak muscles, or of bad joints -- it's a matter of

energy conservation!

Anyways, I'm wondering how many others out there are swinging instead

of walking!

Nuwekerel

[Guest guest]

Hi ,

I too, have had difficulty walking, balance, coordination since the beginning

(1998 for me). My Primary doctor, who has known me over 25 years, was the one

to diagnose me with CFS. I have continued under his care, but I'm now

rethinking this decision.

In a nutshell, I don't believe any neurologist " believes " in CFS. I have seen 5

now, 2 on referral from my PCP, and they all can diagnose my symptoms, with out

etiology! It's VERY frustrating, especially since I lost my job in Feb 06 and

really need my PCP's support for filing disability. In the past few years,

whenever I go in with a new symptom............he just rides the fence on the

diagnosis, making statements like " I just can't believe none of them can find

MS! " , and, " well, Jane, we don't really know what's wrong, we just kinda lump

you into CFS.......but no one REALLY knows for sure! " ..............well, I DO!

They have tested me for everything under the sun with MRI's, Cat Scans, sleep

testing, etc and more bloodwork than was probably necessary! But still, nothing

but CFS.

What irritates me, is that HE was the one to diagnose CFS in the first place,

but then when he sees me with full blown tremors, all stumbling down the hall,

marble mouthed, can't remember my name................then he gets this really

worried look on his face and sends me for more testing. THIS is the man I'm

counting on giving me a great letter in support for Disability????? I don't

think so!

I do know EXACTLY where you're coming from and YES, I do have those symptoms too

and I personally believe we ALL have " a neurological component " to our

CFS..........from what I've read, that's just part of the deal,

unfortunately....

Sorry if I babbled, but at least you know you're not the only one! There's a

weird comfort in that, isn't there?

Have a wonderful Holiday, wishing you comfort and pain-free days ahead

STL Jane

[Guest guest]

Hi Marie!

I'm not Cat and I don't have an informed opinion on the difference

between (or equivalence of) CFS and ME, but I can speak to one part of

your question.

" I don't have CFS as the CDC describes it. " Up until recently, I would

have said I didn't either.

Here's the 1988 CDC definition:

1) Severe chronic fatigue of six months or longer duration with other

known medical conditions excluded by clinical diagnosis; and

2) concurrently, four or more of the following symptoms:

substantial impairment in short-term memory or concentration;

sore throat;

tender lymph nodes;

muscle pain;

multi-joint pain without swelling or redness;

headaches of a new type, pattern or severity;

unrefreshing sleep; and

post-exertional malaise lasting more than 24 hours.

" The symptoms must have persisted or recurred during six or more

consecutive months of illness and must not have predated the fatigue. "

For me... yes to severe chronic fatigue lasting six months or longer,

yes to short-term memory or concentration impairment, no to sore

throat, no to tender lymph nodes, no to muscle pain, no to multi-joint

pain, no to headaches, yes to unrefreshing sleep, a huge YES to

post-exertional malaise lasting more than 24 hours.

Prior to about 4 months ago, I would have said " no " to " unrefreshing

sleep " , or rather, my doctors would ask, " do you sleep okay? " and I'd

say, " well, I guess so " . I was sleeping through the night, maybe with

one bathroom trip mid-way through. I counted that as sleeping okay.

But my current doctor at the Fibromyalgia & Fatigue Center asked the

question a different way. She asks, " do you feel refreshed when you

wake up in the morning? " , to which my answer is a definite " no " . So

that one difference in how the question is asked takes me from " not

meeting the criteria for CFS " to " meeting the criteria " .

I've got to say that these criteria seem rather vague, and there is no

weighting given to the severity of each individual symptom. More

research that sheds light on the physical causes of this aggravating

condition can't come too soon.

My own current belief is that CFS results from a combination of

things, a shock to the system of some sort (an acute infection or

severe stress, perhaps) that triggers dysfunction in the body's

endocrine and immune systems, which in turn allows other infections

and/or imbalances to occur. But that's just my own take on it, it

could result from something else entirely.

Good luck in your search for understanding. I expect it will be an

ongoing, long-term effort before the fog of misunderstanding clears in

this particular field.

Marcia on

Lafayette, Colorado

>

> Hi Cat

>

> I'm sincerely bewildered and hoping you will help me

> understand..here is my exposure (U.S.) on the topic of

> M.E./CFS...

>

> Could you possibly relate what your

> experience/symptoms with M.E. have been, I am curious

> genuinely. For example, " and I don't have CFS as the

> CDC describes it " ...what do you experience that was

> not described in the CDC information?

[Guest guest]

,

I've been diagnosed with CFS for a number of years now and have had

walking, balance, coordination problems, among others, in varying

degrees. I'm not sure my walking has been as severely impeded as

yours, but I have fallen a few times.

There is no doubt in my mind that whatever we have or whatever it is

called has a neurological component. I look at Lyme Disease and

Chiari Malformation information from time to time because their

symptoms are also very similar to CFS. I have had MRIs that show

Chiari Malformation (Difficult to explain Chiari but its along the

lines of the skull being too small for brain resulting in lower part

of it being pushed downward in tonsil formation toward spine).

Nevertheless, neurologists said mine did was not down far enough to

account for my symptoms.

I'm going to have this looked at again, because my coordination

walking has gotten worse and I've had increased vertigo. In any

event, my point is that I recently read that the symptom overlap

between Chiari and CFS is so great that it may be that a significant

number of CFS sufferers have CM. You might want to run this past

your MD. The problem is that there is no easier or better treatment

for CM that there is for CFS, Lyme, etc. Still, I think all of us

would like to be sure that we are correctly diagnosed.

Good luck. Joan

>

> Hi ,

> I too, have had difficulty walking, balance, coordination since the

beginning (1998 for me). My Primary doctor, who has known me over 25

years, was the one to diagnose me with CFS. I have continued under

his care, but I'm now rethinking this decision.

[Guest guest]

>

>

> Does anyone else with CFS have difficulty walking?

O yes!!

I'm lucky in that I can still get out - a bit. sometimes I go out when i

really know I shouldn't - i just know the crash will be horrendous. but

sometimes the depression of not going out is worse than the crash - you know

what I mean.

Anyway, yesterday I was out trying to buy Xmas gifts. In the store, I

thought I saw someone coming towards me - i honestly didn't realise it was

my reflection in a mirror because I didn't realise how peculiarly i walk.

I've been aware that I tend to drag one of my legs. It's as if it doesn't

move automatically and I have to force it.

Yesterday I was so exhausted i was swaying from side to side and dragging

one leg after the other. Later, at home, they gave way and I fell to the

floor. Today I'm back in bed, in agony but hey! - I bought two presents

Cheers

Kirsteen

Chaos, confusion, disorder - my work here is done

[Guest guest]

Hi Cat,

I am diagnosed with FM, however I have a bad time with walking too. I

have the leg weakness, tremors, muscle spasms and definately

coordination issues. My opinion is that whatever 'it' is, attacks the

muscles leaving them inflamed, weak, etc. Try increasing calcium,

magnesium and pottassium. With potassium you can over dose so best to

either eat high pottassium foods and/or check your vitamin levels with

your doc. Foods that I were told were white potatos, tomatos, bananas

and apricots. Foods that are closest to its natural state (raw)

contain the most nutrients (according to my nutritionist).

Glad to see I am not the only one with this type of issue! Take care!

[Guest guest]

When the pain gets to be too much, I frequently have trouble walking and I have

my trusty cane handy.

As difficult as it is having a chronic illness is, I do still laugh when I

realize my 80 year old grandmother can beat me in a race!

~P.J.

[Guest guest]

I thought it was a silly idea at first when a friend to told me to

drink Pedilite and it actually does help. I realize with these

difficult to diagnose and treat illnesses... there are no silly ideas.

~P.J.

>

>

>

> Thanks for the suggestions, I appreciate any helpful ideas and I

have one

> for you.. LOL. I drink Pedilite , the name depends on which brand

you buy but I

> have found it helpful in unexpected ways, like irritable bowel

Syndrome ,

> :0 my.. but it works.

> Cat

[Guest guest]

Hi, I have been dignosed with FM, but I do have trouble walking due

to the pain, the weakness in my legs, my poor balance, tremors in my

legs/hands and dizziness.

At the moment I'm not too bad, but I still need my beloved companion

(my walking stick), when I have bad days I use a walker if not dizzy

or I end up on a wheelchair, or on the really bad days I cannot move

from the bed.

I have always been a very active person, I use to love dancing and I

was a chef I never stoped for 5 mins, I use to be like I had ants in

my under pants.

Now if I walk with the help of an aid for more than 20 metres I need

to rest and I feel like I run a marathon or if I try just to cook a

simple meal it takes me hours, when I use to cook about 600 meals a

day.

Lots of things have ben taken away from us,life is not the same

anymore, i'm only 44 and I feel like 99.

You are not alone, we are all in the same boat.

Chin up and never stop smiling even if we are in pain, we cannot let

pain be stronger than us. (BUT I DO KNOW IT " S)

Merry Xmas everyone.

Gore

> Does anyone else with CFS have difficulty walking?

>

> My primary doctor thinks I have CFS with a Neurological Component,

>

[Guest guest]

Merry Christmas and I can totally relate! I'm usually very positive,

optimistic.....but lately, it's been difficult to feel that way. I really

needed to hear this from you...........thank you.............chin up and smile

baby!

STL Jane

Gore wrote:

Hi, I have been dignosed with FM, but I do have trouble walking due

to the pain, the weakness in my legs, my poor balance, tremors in my

legs/hands and dizziness.

[Guest guest]

Hello to all!

It's been a while since I've posted on this board, just got moved

into a new home and I pray I will never have to do this again! Many

know how bad I've been in my daily fight with ME/Fibro and thank God

most of this work was done by others...boy did I hate that! But I'm

back into a healthier enviornment as I am not breathing insulation

drawn into the rental home (that was blown into the exterior walls

years ago)we had because they never closed off heat ducts.

In addressing the question here about walking, for me it's like I'm

just learning to walk, it's more of a arms out trying to balance. I

know the difference between the mentioned swaying when the exhaustion

or energy level is so low I worry bout making it to the bathroom

verses the balance problem. It's funny how many likenesses we share

in different ways. I agree that the information is so vague because

if we all had say ten constant symptoms..it would make it easier for

study I suppose verses all these variances and degrees within a

symptom.

God Bless All,

/Dutchie

[Guest guest]

((((((((((((JANE!)))))))))

Just popped in to say I'm here and my email changed due to my most

recent move. I had a couple good days during the move (most thought it

was due to excitement) and my legs and feet swelled up so badly that rx

diuretics won't touch it! I'm back in bed/couch trying to catch up. I

also most recently feel that possibly the disc below the titanium that

I was told would blow sometime soon...may just have. Numb in both feet

and weight bearing on right leg sends pain right to the disc area.

Trying to rest and see if I can better discern what's going on. Hope

your doing well and would love to hear from you soon!

Your Friend,

Dutchie/

*one with the bird* lol

Hi, I

have been dignosed with FM, but I do have trouble walking due

> to the pain, the weakness in my legs, my poor balance, tremors in my

> legs/hands and dizziness.

>

[Guest guest]

>

> I thought it was a silly idea at first when a friend to told me to

> drink Pedilite and it actually does help. I realize with these

> difficult to diagnose and treat illnesses... there are no silly ideas.

> ~P.J.

Hi

What is Pedilite. I'm in the UK and it's not something I've ever heard of.

i'll try anything that helps :-)

Kirsteen

Chaos, confusion, disorder - my work here is done

[Guest guest]

and what does the Pedialite help with?

PS Kirsteen - Pedialite / Pedialyte is an electrolyte drink they give to kids

here in the US when they are dehydrated, or to keep fluids in them when they are

sick. We can get it just about any pharmacy in the baby aisle. Just looks like

bottles of water. Hope that helps you

STL Jane

Kirsteen wrote:

On 12/23/06, poodiejoe Hi

What is Pedilite. I'm in the UK and it's not something I've ever heard of.