Re:Sharon (lawblonde)

[Guest guest]

I have been wanting to write you back for a while but wanted to take

time to write. It has been very busy around here and I have saved a couple

e-mails to write more than a few sentences on, yours being one.

Your symptoms sound so familiar to me. I never was a very athletic

person like you, but in 1990 I began to experience many instances like you

described. There were many days where I would struggle to get out of bed

let alone climb stairs or walk around. I would limp everywhere due to the

pure exhaustion I felt. I would have to stop on the stairs many times just

to get up the flight. Muscle pain was/is very common and there have been

times where I have cried myself to sleep due to the level of pain in my legs

and arms. Others on this group have indicated that lactic acid problems is

the probable reason for the pain. The more active you are, the higher the

lactic acid levels rise. Your symptoms sound so similar. I have a friend

with Crohn's disease and I agree it doesn't sound the same other than the

tummy issues. With Mito in your children, the possibility of you also

having it is high. You may just have times where you are just overdoing it

and the weakness sets in. Maybe the extra intense work-outs have just

caused the symptoms to show. You may need to just pace yourself more and

not do as much, letting your body recuperate. Later on you may be able to

run again, but for now it may be wise to avoid it. I know when I tried to

exercise to " help " myself get better, I only became worse. I am sure this

must be frustrating and even somewhat confusing as it sounds like this is

your first episode of weakness to really affect you. It can be scary and

makes you wonder what your future may hold. I hope I can help you by

letting you know that even after dealing with Mito since 1990 I am still

able to walk most of the time w/o any aid and am not limited to the house as

long as I follow my body's cues. If I feel weaker on a certain day, I get

more rest and do less. On days I feel better I do more. But I must say I

do NOT do any set form of exercise as it makes me worse. You may have a

mild form that only will rear its head when you do hard training. Please

let me know how your doc visit went and if there is anything else I can help

you with.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting...

Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), &

Marquis (2) (some with Mito symptoms)

(no subject)

> Hey all -- I am mainly a lurker here on both boards. I have 3 boys - twins

> Clayton and Cole (7) and Jake (11). Clay has been diagnosed with mito

> complex 1

> and IV via muscle biopsy by Dr, Shoffner 2+ years ago - and previously

> diagnosed by Dr. Kelley at Kennedy Kreiger when he was 2. They

> believe it is

> maternally inherited. Cole shows no real symptoms and is NDA - other than

> being add. Jake is severely ADD - had an IEP and severe fine motor

> delays - in 6th

> grade he still cant write cursive or read it (he does have an alpha smart

> for

> his own use provided by the school) and struggles in school despite an

> above

> average IQ (150) He also is extrememly small - like clay and has GI

> issues.

> Clay also has GI -- cole has escaped everything so far. Anyway -- ENOUGH

> about

> the the kid s- this question concerns me ---so here goes

>

> Starting this April I started to train for the Marine COrps Marathon which

> is

> to be held on 10/31/04 (I live in Northern VA). I am doing it thru an

> excellent training program to avoid injury - so far have been good at

> avoiding

> RUNNING injuries. For the past 2-3 months I have been running 15-30+

> miles a week -

> 2 short runs during the week and longer runs on Saturdays. I also try to

> cross train 2 other days. Here is the problem -- about 3 weeks ago after

> 18+ mile

> run I started to feel really really bad and it kept getting worse. PLEASE

> NOTE

> THAT I HAVE BEEN DIAGNOSED WITH CROHNS. Anywas about 3 days after the run

> (note after the run I felt like I really could run another 6-8 miles) i

> started

> to feel horrible. COnstant headaches (migranes), severe stomach pain and

> not

> keeping anything in - it would just run through me - I always had to be

> near a

> bathroom, so tired and did not want to get out of bed (luckily I had kids

> so no

> choice) and my joints and muscles and bones hurt. At first i thought

> maybe

> it was a virus or something - but Finally last Friday - when the boys were

> at

> their dads for 5 days I went to a regular family practioner. She thought

> that

> it was a crohns flair up (did not seem like that to me). SHe gave me some

> pain

> mediations and some meds to settle my stomach (Hydrocodein + phengran). I

> have

> no energy - I am someone who was running 3 days a week and working out 2

> other days a week and I had not been able to run at all for three weeks --

> it hurt

> to walk. Monday I started to cry as I walked up the stairs carrying my

> kids

> bag up cause it was such a struggle. I did manage to run 10 miles - very

> slowly

> today and again I am so drained. While the pain meds and phenagran allow

> me

> to sleep -- I still have almost constant migranes and my stomach is not

> great.

> I am hoping to get into to see my GI next week BUT I am looking for a good

> Neuro for adults in Northern Virginia, Washington DC or land. It is

> like

> something went off 3 weeks ago and now I have no energy am tired all the

> time,

> headaches, stomach pain and joint problems. Any suggestions greatly

> appreciated

> hugs

> Sharon

>