My introduction

[Guest guest]

Hello,

I found out about chiari on one of my endless Google searches trying to find a

reason for one of my many physical difficulties. This time I was trying to find

out why I keep getting hang-nails, my cuticles are always ragged, some are hard,

and some are encroaching on my nails. For years I've been (guiltily) using a

razor blade to trim them.

So that's how I came upon Ehlers-Danlos syndrome and from there to this group.

Some things that caught my eye were ( & my apologies for the length of this

list):

1. Loose, unstable joints that are prone to: sprains, dislocations,

subluxations, hyperextension. The page had illustrations for the loose joints –

one of them (where you pull your thumb down to your wrist) I used to do all the

time as a kid. I also used to sprain my ankles frequently, and have had problems

with my back at least since I was a teenager. In the last few weeks I was also

told by two people that I have " loose joints " .

2. Flat feet – yes.

3. I bruise easily, though it's gotten way worse in the last several years. (I'm

a 61 year-old female)

4. My father had an abdominal aortic aneurysm when he was 61.

5. Skin: A doctor once commented with surprise on how soft and pliable (the last

not his word) the soles of my feet are. Also, I've always had extremely

sensitive skin. People often freak out when, for example, I stand after sitting

for a while because of the vivid redness of my arm. I have to calm them down

and explain that it's just from the pressure of leaning on the table using my

arm as support. Also, I have the kind of skin you can write on. If I run the

edge of my nail alone the inside of my arm, in less than a minute a red line

will appear.

5. Muscles: I remember even as a 12 year-old, wondering why hiking was so hard

for me. My legs always got tired and I was exhausted when everyone else was

just having a great time. Also, exercise has never made me feel better, and

whenever I've tried an exercise routine, I just have less stamina and less

strength as the months pass. I've finally given up on it all together. Even

sitting up and standing has always been difficult for me. It just seems to take

a lot of energy to hold myself upright.

6. My mother had open-heart surgery for a prolapsed mitral valve.

7. My grandmother could touch her nose with her tongue.

8. I have a terrible time at the dentists because it's always been difficult

(and sometimes impossible) to freeze my mouth.

9. Sometime in my 30's I realized that my whole body always hurt. I hadn't

identified what I felt as " pain " earlier before then because it had always been

there.

10. My toes are almost always purple.

11. I've lived with depression and terror all my life. I'm on disability for

that. They say I have a refractory depression because it's not cured with

medication. I don't know to what extent that has caused my body pains and

weakness, but I don't meet other people like me. I'm also in therapy for

attachment disorder.

12. I've had chronic headaches, at least since I was a pre-teen. They used to

last for about 3 days, and occur once or twice every month or two. Nothing

relieves them except Tylanol 3 or some kind of extra strength pain reliever that

has caffeine in it. But they don't help 100% of the time. Also, I often have

horrible headaches at night when I'm lying down. Sometimes they go away once

I've gotten up.

13 I've had restless legs at least since my 20's. I also have a large amount of

PLMD when I sleep. One doctor said it could be because of the meds, but I

remember when I was a child (and slept over at my grandmother's in her bed with

her) she used to complain that I kicked during the night.

14. I have almost no memory for most of my life. It's mostly a big blank.

15. I'm allergic to the sun (it hurts my skin and I can get blisters) and have

had terrible heat intolerance all my life.

16. I go through cycles when, for example, my hips and back hurt like hell

during the night. It's difficult to find a position I can sleep in. Also my

depressions (which come with body pain) are cyclical. I'll go through a

horrendous few weeks, and then one day I'll wake up one morning and find the

blackness is gone and I feel much better.

17. I've had back problems since at least a teenager. I went to chiropractors

for most of my life (on and off), then stopped about 20 years ago. Now I go to

someone who does " visceral manipulation " and I try to do Feldenkrais. They

help, but not completely.

18. I've always suffered from low energy and lack of motivation.

19. My blood pressure and temperature have always been on the low side, though

my BP is more toward normal recently.

20. I've always had a weird sensation in my head from time to time. When I move

I hear a " ch ch " sound my head, and I feel like (I know this will sound strange)

there is another sort of `head' inside my head, and as I move it shifts inside

my head and affects my balance. Also, from time to time I get dizzy, especially

when getting up from sitting or crouching.

21. I have problems with my hearing and sometimes understanding what people say.

22. When I have a blood test, I always have to press on the cotton for an extra

long time or else it starts bleeding again.

23. I had to have an ovary and tube removed when I was in my 30's because I had

cysts and had developed adhesions (I think from a bad bout of PID).

That's all I can think of right now. Does this sound like something that could

be chiari-like? My doctors just keep shrugging their shoulders, especially

because my tests are always negative.

Thanks for listening.