New Member

[Guest guest]

Hi..........

I understand how your feeling. I have mds and now I am an adult and have

one chld with my husband. My daughter also has mds as I have passed that on to

her.

It is getting kind of rough right now but is starting to get better. Some

kids are mean to her but she is handeling quite well for only being 6 years old.

I know what it is like to have kids be mean it happend to me. I really beleive

it is just a kid thing as for when I grew up they teased me for being short

my name and because I would studder when I talked to fast. As I got older the

teasing and being mean were not as bad as it was in elementery school. I have a

wonderful life and now as I look back I was not the only one picked on .

Everyone was picked on for ne thing or another. It is all in how you handle it .

Maureen

[Guest guest]

Hi I am in Asheville, NC. My daughter is (MDS) and son is . The older

that she gets the harder it seems to be. All she really wants is a friend and

the kids are just so mean to her. I don't know what to do.

sincerely,

Kaydo

Re: New member

Welcome Kaydo!

Glad you found us! Where are you located?? We do have members all over the

country... all over the world for that matter!!!

Angel

Mom to 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 15, Tyler 12, 9, Jaeda 8

and Shayne 1

[Guest guest]

Hi ann,

We are located in Asheville, NC.How do you help with her immaturity

and making friends?

Kaydo ( mom of (MDS) and )

Re: New member

Hello Kaydo

I have a 10 year old daughter also who will be going to junior high school in

September too. Immaturity is also an issue for her. We are located in New

York (Long Island). Where are you from?

ann (Mom to mds 10 yrs old)

[Guest guest]

Kaydo,

I know exactly how you feel! I struggled with this for many years with my son,

Tim. (18) This is the first year that he has " true " friends, and I am so happy

for him. He still struggles with the bullys who want to pick on him all the

time. Tim tends to get nervous around other children and doesn't act like he

does at home. I try to give him dialog to

say around the other children and sometimes that helps him.

Perhaps you can find someone in her class that is nice and invite them over alot

for the summer. Then give them fun things to do. Once your daughter gets used to

the other child perhaps she will be more comfortable and will be better able to

make friends.

Will you be coming to our conference in June? Your daughter could make lots of

new friends there! Even if they were not close neighbor friends, her confidence

would be boosted by knowing she CAN make friends, and it might help her to make

friends at school.

Another thing I do when Tim comes home upset because he was picked on at school

is, I tell him that part of the day is gone and now we have a whole new part of

the day. I encourage him to talk about what went on and how he felt about it.

And I ask him questions like, " Do you think if you would have done something

different, they wouldn't have picked on you? " Sometimes his answer is no, but

sometimes it is yes and opens up conversation on how to act around other people.

Please keep us updated and give lots of hugs from me!

Kristy

Carolyn Jayne wrote:

Hi I am in Asheville, NC. My daughter is (MDS) and son is . The older

that she gets the harder it seems to be. All she really wants is a friend and

the kids are just so mean to her. I don't know what to do.

sincerely,

Kaydo

Re: New member

Welcome Kaydo!

Glad you found us! Where are you located?? We do have members all over the

country... all over the world for that matter!!!

Angel

Mom to 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 15, Tyler 12, 9, Jaeda 8

and Shayne 1

[Guest guest]

Hi, I have been lurking here for months it is so nice to find a group

that actually know the facts and understand this disease so well. I

would like to say how kind it is that you all take the time and go out

of your way to teach others about this disease and give support. Thank

you!

My husband has had cirrhosis for years from hep c so I feel like I

have been around the block or two myself, being his caregiver.

I must leave to go to work so I have to make this short. I need to ask

a question because I am at my wits end. He has mood swings so bad I

never know what I am going to be coming home too! I just wonder if you

all go through this because I don't know how much more I can take.

Thanks

[Guest guest]

rflush17,

Welcome. I would wonder about his ammonia levels? Is it possible he is

depressed? If he is older could it possibly be a little dementia? I hear that

can cause huge mood swings literally in minutes. How is his memory of his

moods?

Blessings,

Pamela

New Member

Hi, I have been lurking here for months it is so nice to find a group

that actually know the facts and understand this disease so well. I

would like to say how kind it is that you all take the time and go out

of your way to teach others about this disease and give support. Thank

you!

My husband has had cirrhosis for years from hep c so I feel like I

have been around the block or two myself, being his caregiver.

I must leave to go to work so I have to make this short. I need to ask

a question because I am at my wits end. He has mood swings so bad I

never know what I am going to be coming home too! I just wonder if you

all go through this because I don't know how much more I can take.

Thanks

[Guest guest]

> Hi. I am a nurse who has begun having difficulties in several areas

> in the last few years. My physician feels it may be fibromyalgia,

> but my symptoms also match CF 7. I have difficulty sleeping, pain

> over my entire body, etc..I was curious as to the types of symptoms

> of people who are diagnosed with CF. How they got that diagnosis,

> what kinds of meds seem to work. I am trying to keep my head above

> water, but it's very difficult when I am so exhausted. I have

> stopped doing activities I enjoy over the last couple of years,

> especially since I turned up positive for mono this spring. Things

> seem to have gone downhill since that diagnosis. But, things have

> been going downhill for the last 3 or 4 years, as i look back.

>

> I would appreciate any comments or suggestions..thanks for including

> me

>

CF stands for chronic fatigue which is a different condition than

Chronic Fatigue Syndrome. Numerous illnesses, diseases and conditions

may be responsible for chronic fatigue including iron deficiency,

cancer, depression. Syndrome means the fatigue in Chronic Fatigue

Syndrome is an important symptom within a complex of numerous and

confounding symptoms.

I came to grips with what was going on with my body when reading this

list of symptoms, a huge number with which I identified, never

realizing they might be related until reading this list:

chest pain,

panic attacks,

anxiety,

fatigue,

migraines,

irritable bowel,

lightheadedness,

weakness,

heat intolerance,

alcohol intolerance,

pallor or redness of extremities,

numbness and/or tingling in the arms and/or legs,

depression and/or mood swings,

hypersensitive startle reflex,

neckaches,

backaches and/or other muscular tension or twitching,

loss of concentration,

foggy thinking or memory problems,

swelling of extremities,

feelings of electrical current going through your body,

skin problems,

sleep difficulties,

allergies,

feeling hot or cold-unrelated to external temperature,

visual disturbances and more.

If you identify with more than a couple of these symptoms, you may

want to read further. If not, then you are unlikely to suffer from

Dysautonomia as an underlying condition helping to explain Chronic

Fatigue Syndrome.

This list was found in a brochure produced by the Northern Virginia

MVPS-Dysautonomia Support Group. NOVA MVPS-D group used the symptoms

page of the Society for Mitral Valve Prolapse. MVP and MVP Syndrome,

like CF and CF Syndrome, are two completely different entities. The

Syndrome of Mitral Valve Prolapse is a condition involving imbalance

of the autonomic nervous system where either the sympathetic (fight or

flight) or parasympathetic (rest and digest) systems are dominant

rather than working together for our daily needs. A body which is

incapable of maintaining an upright position without causing bizarre

anomalies of heart rate and blood pressure (detected with a tilt table

test or standing test, both done with CFS protocol), or, as in Mitral

Valve Prolapse, the heart valve allowing blood to return back through

the heart into the lung are going to feel very very tired with little

relief from fatigue.

MVPS is a form of Dysautonomia, or, dysfunction of the autonomic

nervous system. I have been diagnosed with Postural Orthostatic

Tachycardia Syndrome, have since realized I also suffer from Neurally

Mediated Hypotension. Upon reading the above list of symptoms, I

remembered having taken an electrocardiogram showing a slight anomaly

of the Mitral Valve; this proved unconvincing to my doctors, but, lead

me to explore further, finding help and relief of many of these

symptoms. Both POTS and NMH are forms of Orthostatic Intolerance

which is a sub-category of Dysautonomia, as is MVPS.

There are a large number of other symptoms, such as spatial

disorientation, sensitivity to light and noise, smells and

occasionally feeling like there are tiny bugs crawling just under the

skin. These and other symptoms are due to a problem of circulation

leading to chronic dehydration typical in patients with OI-

Dysautonomia. CFS patients benefit from frequent daily fluid

(especially water) intake and salt for fooling the body into holding

onto fluids too easily lost in people with these conditions due to

stress and activity (salt tabs, frequently prescribed by docs, may be

too sodium, very stimulating for bodies in great need of rest; I

prefer adding salt to my food or eating salty foods like celery,

olives and salted nuts). Resting frequently while reclining with feet

up throughout the day as well as fidgeting, avoiding standing or

sitting still, moving around often but not for long during any one

period are also helpful for avoiding some of the above symptoms.

Doctors tend to believe these conditions are manageable rather than

debilitating but that's because those particular doctors don't have

the conditions and know few people with these conditions. I have been

confronted with disbelief by doctors in hospital who, upon learning of

my chronic conditions, offer elementary advice and argue with me over

how dehydrating OI-Dysautonomia is. My local doctor likes to argue I

am too timid about Florinef, should take it, but three of the common,

expected side effects of Florinef are symptoms I have suffered

severely throughout my life. I am unwilling to add to my already

stressful life and symptoms by taking a drug offering little ability

to help which is also responsible for a loss of the very necessary and

helpful mineral/electrolyte potassium.

Midodrine and Florinef or their generics are frequently prescribed for

these conditions. If taking Florinef, potassium is lost more quickly

as a side effect of the drug which has become a problem requiring

hospitalization for some with our condtions. Frequent testing for

potassium is recommended if taking Florinef as well as for people

taking prescribed potassium. CFS/OI bodies already lose too much of

our stores of electrolytes due to our inability to handle of stress

which causes loss of electrolytes (think, athletes, losing

electrolytes by stressing their bodies to the max, we stress similarly

by just living). We are unable to restore electrolytes through food

due to digestive problems caused by our conditions.

Therefore, for people with these conditions, especially if taking

Florinef, it is especially important to ask doctors to prescribe

Prescription Potassium alongside Florinef. I still take prescription

potassium though I was unable to take Florinef and didn't wanna take

Midodrine. I have found prescription, time-released potassium along

with frequent daily intake of electrolytes some of the most helpful

treatments for OI/CFS. Prescribed herbs, more helpful, but I found a

gifted herbalist. The major electrolytes are: magnesium, calcium,

potassium, sodium in doses equal to or above the the RDA of these

minerals taken in frequent daily doses, similar to our need for

frequent meals to restore what we use up throughout the day, most

helpful.

Here's a page with more on these topics including the above list of

symptoms:

http://www.cfsnova.com/mvpsoi.html

Best wishes,

toni

[Guest guest]

Its actually possible to have both Fibromyalgia and Chronic fatigue at the same

time. I have both and was diagnosed with Post viral infection syndrome (similar

symptoms to CF) after I had repeated tonsilitus and glandular fever. It wasn't

til after an accident that I got FM as well. Symptoms of CF/FM for me are sleep

problems, pain everywhere, repeated sore throats/ears/infections mainly ENT

ones, foggy head when tired know as " brain fog " , memory problems, really bad

fatigue when I first got CF like would sleep 12-16 hours a night but its not

refreshing I was so exhausted that I couldn't get to Uni at the time also

sensitive to light heat cold sound touch chemicals anything that smells. I have

a major inability to tolerate exercise my symptoms skyrocket from the gentlest

hydrotherapy which sucks and is annoying. I am sorry I cannot differentiate

which symptoms are for CF and which are for FM they kind of overlap.

I have a few other problems at the moment which aren't CF and FM themselves so

giving you this list is the problems I had before everything else happened.

As to meds for pain/sleep Ive tried tramadol (which I couldn't tolerate) Lyrica

(which I am on) Endep (which I am on) Norspan patch which was switched to

durajesic panadol helps for in between pain, I tried cymbalta but it interacted

with the endep and left me in a wheelchair Theres also a cream I find helps

called goanna arthritis cream. My main thing I would say about meds is that

everyone is different and its up to you and your dr to work out what works for

you. Also if you are sensitive to them (which I am) then start with a really

small dose (I start with less than the dr tells me) and then slowly build up.

also be careful which ones you mix and make sure you have a dr (or ask a

pharmacist) that knows what ones can go together. This is what happened to me -

the endep and cymbalta were mixed and I have been very sick since last july. I

had stopped the endep for 24 hrs which is what my dr told me to do and it still

interacted.

The other thing that I found was very helpful was a website of Bruce s

guide to FM/CFS You should be able to find it if you google it.

If you can combine the meds, education about your conditions, pace your

activities have a couple of rests in the day stop before you get exhausted and

if you can do some gentle exercise. I learnt the hard way that meds help but

they are not the sole answer to helping me be as active as I can. I know that

now!

I hope this helps