Re: New at this pain stuff!

[Guest guest]

Angie,

As my legs turned to mush changing my diet helped. I don't know if that will

help you. But when I get in to red meat and hydrogenated fats oh the pain and

swelling. lecithin and fish oils and veggies chicken and fish help. But gosh I

love a bloody hunk of cow and fries.

Right now my leg with the fused ankle is frozen at a 45 degree angle and walking

is a challenge, so I'm back to eating rabbit food for a while.

My heel radiates pain when I first get in bed, that lasts for about an hour, I

guess it's the blood leaving the foot as the swelling goes down. The doctor says

that is supposed to stop eventually, I hope that doesn't coincide with the

cessation of breath. I never really take any pain medication other than calcium

and ibuprophen when the pain is really bad. My threshold of pain is pretty high

though.

Ed

[Guest guest]

Hi Angie,

I am newly diagnosed and had been living with a lot of " odd " pains my

whole life and never put it together with the CMT that I was

ultimately diagnosed with. When I mentioned the often described pain

to my family there were a lot of " AHA's " in the room. We had all been

feeling it and either dismissed it as annoyances that everyone must

feel, or thought they were normal because other family members would

say, " oh, yeah, that happens all the time " not realizing that it

doesn't happen all the time in most families.

I get pain that feels like spikes are being driven up the shafts of

my bones, usually in my legs. Hips mostly, then lower legs then

heels. It's a deep down steady, strong ache. Usually Naproxen works

and I've noticed it much worse when I haven't had enough sleep. This

has been since early childhood. My children complain of " growing

pains " often. Also since childhood are these lancing shooting pains.

Sometimes so bad that I jump out of my seat. But they last a second

and then are completely gone. As I've gotten older I'm noticing

aching in my arms and radiating pain that throbs down through my

middle finger. I have a weird parasthesia thing lately that I can

only describe as " memory sensation " . I was at the mall at Christmas

and tried one of those foot massagers (sp?) that have steel balls

rotating under your feet. Right away I did not like the sensation and

stopped it quickly but I felt those balls rolling under my feet for 4

days. After getting off of a houseboat after a 5 day trip I spent the

next 3 weeks pitching and rocking and falling into things. Some days

I just feel heavy like lead and feel like it's too much effort to

move, but of course I do because I have to. My sister says she

sometimes calls in sick and just stays in bed all day because of the

leaden feeling. The thing that finally brought me to diagnosis is a

sensation like a sunburn and burnt tongue on the left side of my face.

So, there's a description of the pain I have experienced. So far I

haven't taken anything stronger than NSAIDS for it. I've lived with

it all my life so I suppose I am accustomed to it always being there

to some degree. I'm curious that the pain is new. Is anyone else

experiencing new onset pain that didn't gradually emerge? I can

relate to the ripe tomato analogy. The side of one leg is like that.

If anyone brushes against me I have to grit my teeth not to yell at

them. It's not that it's painful, just really unpleasant. Hard to

describe but that comes close.

Holli

[Guest guest]

Hi Angie,

I am newly diagnosed and had been living with a lot of " odd " pains my

whole life and never put it together with the CMT that I was

ultimately diagnosed with. When I mentioned the often described pain

to my family there were a lot of " AHA's " in the room. We had all been

feeling it and either dismissed it as annoyances that everyone must

feel, or thought they were normal because other family members would

say, " oh, yeah, that happens all the time " not realizing that it

doesn't happen all the time in most families.

I get pain that feels like spikes are being driven up the shafts of

my bones, usually in my legs. Hips mostly, then lower legs then

heels. It's a deep down steady, strong ache. Usually Naproxen works

and I've noticed it much worse when I haven't had enough sleep. This

has been since early childhood. My children complain of " growing

pains " often. Also since childhood are these lancing shooting pains.

Sometimes so bad that I jump out of my seat. But they last a second

and then are completely gone. As I've gotten older I'm noticing

aching in my arms and radiating pain that throbs down through my

middle finger. I have a weird parasthesia thing lately that I can

only describe as " memory sensation " . I was at the mall at Christmas

and tried one of those foot massagers (sp?) that have steel balls

rotating under your feet. Right away I did not like the sensation and

stopped it quickly but I felt those balls rolling under my feet for 4

days. After getting off of a houseboat after a 5 day trip I spent the

next 3 weeks pitching and rocking and falling into things. Some days

I just feel heavy like lead and feel like it's too much effort to

move, but of course I do because I have to. My sister says she

sometimes calls in sick and just stays in bed all day because of the

leaden feeling. The thing that finally brought me to diagnosis is a

sensation like a sunburn and burnt tongue on the left side of my face.

So, there's a description of the pain I have experienced. So far I

haven't taken anything stronger than NSAIDS for it. I've lived with

it all my life so I suppose I am accustomed to it always being there

to some degree. I'm curious that the pain is new. Is anyone else

experiencing new onset pain that didn't gradually emerge? I can

relate to the ripe tomato analogy. The side of one leg is like that.

If anyone brushes against me I have to grit my teeth not to yell at

them. It's not that it's painful, just really unpleasant. Hard to

describe but that comes close.

Holli

[Guest guest]

Holli,

It was interesting to hear about the " leaden " feeling you get. I too experience

that. It comes upon me suddenly rather than waking up feeling that way though -

there never seems to be any rhyme or reason so I get no warning.

Fortunately it happens rarely but I had a really bad experience a month ago to

the extent that I could barely walk out of my office. My partner had to come and

fetch me and half carried me. I was so lucky he was in town and not away. I

then fell in the corridor outside our apartment at which point I couldn't get up

again....and crawled the remainder of the way.

Unsurprisingly its knocked my confidence to cope 6 ways to next Sunday and I

don't really know what to do next. My GP is equally clueless; does anyone else

get episodes like this - how do you deal with it?

Fiona

Glasgow Scotland

[Guest guest]

Hi Holli.

About the pains. As you have Ehler's Danlos one of the symptoms is severe joint

pain. In addition to CMT which is more the shooting pain and nerve memory, I

bet the hip aching you describe is from ED. Oddly, they say I have ED but I

have no pain. But I do get a sense of nerve pain, I can't describe it though,

it is like a lightning flash - quick, sharp, and gone almost as fast. I get

that in my right hand mostly.

Growing up I had growing pains. My bones ached lots. But I grew like 6 inches

in a year I think. Or something like that. And then stopped. 12 was not a

good year. In addition to the growing that is when I dislocated me knee, which

they put down to loose ligaments from growing. As time progresses and doctors

learn more so too do the answers become more complex, it seems!

Best wishes from London,

Donna

[Guest guest]

Fiona,

When I was a kid my brother would have to carry me

home when I would drop from exhaustion. Surgery to

straiten my heals and controlled exercise turned it

around.

Then at 30 I started getting it again - very suddenly

-very severe. The AFOs have helped, as well as

learning to not fight the fatigue as much.

I hope that you will get some answers soon and that

this too may be managed.

take care,

Chris

[Guest guest]

Holli,

I was here at the lib. a few min ago and just came back. Glad I did because I

was reading how your sister's feet feel like lead.

Actually, I was just skimming so wasn't sure if it was the legs or the feet. I

have that in my feet and with the foot drop, I feel like if I don't bring a cane

or something, I will trip. I don't have a cane with me now and feel like if I

walk I could trip. Actually, that is why I left the library a bit ago.

I was getting nervous and when I do, my feet turn under me so when I get up to

walk, I could just trip anywhere anytime I like to believe it's not true and

it's not going to happen but it does at unexpected times.

So, it's affected my relationships. I guess I should just get used to carrying

the cane but then people look at you like youre totally screwed up when you're

not. " It's just my feet! " I want to shout. My brain is ok, everything else is

fine. But, maybe it's like someone else in this group was saying, people get

embarrased when they ask

what's wrong with her feet. It's their feelings, not mine.

I have to be okay with it because I deal with my feet every minute of the day.

The funniest thing is that when I'm home I'm not nervous and can get alot done

because I won't be tripping on my feet . It's when I get nervous that the foot

drop gets strong. The working muscles pull my feet under. Well, that's all for

now. I meant to say it's good your sister has it and can relate to you feeling

tired.

Dawn