Not just cold...This is painful

[lilmiss1999]

Is it "Chiari" normal to have an issue not being able to handle the cold? I went with my family on Sunday to innertube down the river. It was a very warm sunny day. I soon realized that everytime I was spashed with water I got goosebumbs over every inch of my body and shivered so bad. I looked like I was having convulsions. I was miserable the whole time. You cant avoid getting wet while floating the river and going through rapids. I know this last winter was hard on me more than it has been before but how am I supposed to enjoy summer water fun? The cold actually hurts. How can having Chiari affect your tollerance to cold? The float lasted over 4 hours. It took more than a day to warm up even though I changed into dry clothes asap and sat in the sun for a while. This is something the family does all summer together and now I feel like I am going to miss out.  

[*Stormy*]

LU--you are hilarious...and apparently you passed that one onto you kids too...too funny!!

A good laugh is definitely the best therapy!!

Carolyn

[lilmiss1999]

Glad u are able to laugh. I too was rolling on that one. Kids say the craziest things.

Mine have a blast with all my sytoms. mostly when my balance is off and I stumble around.

I know they are making light of a situation they have no control over. Nice to have crazy kids that make me smile. even if it is at my own expense.

Hope u have more good days than bad. Wishing u well.

[lu7997]

Diane so gals u got a laugh.  And sorry u have had such a rough week. I hope u feel better.   : )

[thankful2bhere]

Thanks you two. I just read your last couple of comments and I have been sitting at my desk bent over crying! The dragging your head like the dog with a **** stuck is the funniest thing I've envisioned in a LONG time. Thanks for the that hard giggle that makes me lose my breath and my husband has to come see what's so funny. Made my day! My past week has been HORRIBLE and painful and today is bareable and now a good laugh. Getting better by the hour!
Diane

[lu7997]

Lol. That is cute   Kids come up with the cutest things.   Lol. It was actually my 12 year old that coined the brain hemroid    Lol.  My 4 year old asked " why I don't drag my head like the dog does when he has a terd stuck.".  Lol. My kids are cruel.  Lol.  I like the too smart one though. It is much nicer. : ).  

[*Stormy*]

Ha ha ha...brain hemorrhoid..that's a good one!! I am just like you and actually have been that way for years. Some days I would be going non-stop and getting so much done and other days I could barely manage anything at all. I would just feel completely drained of energy..I used to think I was just getting a virus or something but it was happening way too often. It is frustrating b/c my brain is always working non-stop thinking about what I want to get done!

When I was first dx..my middle son went to school telling everyone that I was going to have brain surgery because "my mom is so smart that her brain is too big and they have to make more room in her skull!!"

I didn't even know he was saying that until one of the moms came and told me..too cute!

Carolyn

[lilmiss1999]

I am all about the humor in this. My DH giggles at me when my tremors get so bad I cannot hold a cup to drink or when I walk in a room and then have no idea what I was going to do. I will stand there and he askes what Im doing and I have nothing to say but "I dont know" Its funny and I have to laugh at myself too. :) I just tell everyone that my brain is too big. Too smart for my own good. lol Funny statement coming from a blond polack. lol

[lu7997]

Hey. As I say. Like any hemroid. It is all a pain in the ***.  Lol. I deal with lifes annoyance with humor. Sometimes innapropriate. But it is my coping. I would rather laugh and smile at the problems.  : ).   I too have three kids and keeping a smil for them Ian always easy.  My mom actually acused me of being bipolar. Cause one day I will scramble to do 50 things at once and than the next day won't get off the couch.    I just laugh an say no. Damn roofs acting up again. And preperation h just doesn't work for this.      : ).   Hey. Sence of humor is all we have some days.  Laugh it up. : )

[thankful2bhere]

Mine must be odd too because I got a little smile out of that one also! :) i Think most of us probably have a little strange one after all we've been through, huh?

[lilmiss1999]

Selma, I know some days I may do too much but when I have an hour or two or more when I dont feel TOO bad, I get as much done as possible. Its in my nature and I am working on it. I also have 3 kids so they do a lot. I know when I cant do anymore and I will lay down and let everyone know the mom is done. The whole family understands. My youngest son (8years) will come over to me on the couch and ask if I want my back rubbed and tuck me in. Hes my sweet little man. All the kids have been great and even though they dont do anything on their own they will step up if I ask.

lu7997...I will work on finding that magical lamp. I dont think it is too much to ask for God to be a part of this forum, but he would be overwhelmed with questions in a couple seconds.

And.....I had to giggle about the hemroid part but then my sence of humor is a bit odd. :)

[lu7997]

Dear god. We all all need it to be 75 and not humid.  If it's not to much to ask please do no make it rain  and the moon to never be full.  Also while your at it. Fix this brain hemroid we all have and let us live our lives peacefully.   Than you can have weather changes again.   Thank u.   Lol. You think It is too much to ask God to become a member of the forums?    Oh well it was worth a try.  

[selmaS]

Well it is good u do not also have the humidity to content with.

Well, I would suggest u not do soooooo much in one day especially when it is hot...and u don't have AC...wow.....slow down a little.

"selma"

[lilmiss1999]

I grew up in Wisconsin so I know humidity but in Oregon we have the dry heat in the summer. It was the only day this summer that i was effected so much. Today I finished all the house work early so I could stay in front of the fan in the afternoon. We dont have ac. Lots of water and rest. Not too bad today. Neck and right shoulder still achy but that has been going on for 2 weeks. Sorry so many of us have to deal with these things but at the same time it is nice to know I am not alone in it.

[selmaS]

Hi....heat usually doesn't get to me either, but do look at the humidity...that could be the problem.....

Yup, I always carry a sweater for AC set too high, and when the sun leaves and it gets a bit cooler at night....

The nights with no sleep crop up every so often too....

So sorry , but know u r deff not alone with this.....I think all chiarians deal with this too.

[lilmiss1999]

Yesterday was a little tricky. I normaly love the heat but i was miserable yesterday. It was in the low 90s (not the first time this year) and I cant explaine it other than I was miserable in my own skin. I was exausted but not tired, arms ached, i was uncomfortabke walking, so I would sit, then lay down, then up walking again. Just miserable. When it finally cooled down I sat outside for a bit and then I was freezing again because the wind picked up. I was wearing a sweater and my husband was telling me it was still in the 80s. As soon as the sun started going down the wind picked up and that was it. To top it off couldnt sleep so I was up to 430 in the morning. going on about 3 hours sleep right now and another warm day. YEA!!! Oh and I get the meds thing....I have a whole pharmicy in my bathroom! :) Nothing really works.

[thankful2bhere]

Carolyn, I don't know about rolling it under my finger. It usually hurts too badly to touch it that much. My skin becomes very sensitive and even the wind hurts. If the air cond in the car or at home kicks on and hits my arms it sends me into orbit! The water from the shower does the same. Makes bathing a little tricky sometimes :(
lilmiss99, the voice thing happens to me all the time! I'll start out normal and then it ends up lower and hoarse sounding. Like I just woke up or something! Strange???  The muscle thing is my worst issue right now. It's affecting every minute of my day and night. Can't sleep, sit, stand....for very long anywhere. Ya know? That makes for a not so pleasant person for my family to live with. I try so hard, but sometimes I can't take it! And the pain its constant lately. Im on so many meds you'd think I couldn't feel ANYTHING!! But I sure do! Congrats on the babies. That is so cool. That's a great thing to occupy your time. Animals make me feel better too. Nothing like a puppy in your lap or a cat snuggling up to you. Or your horse giving you that funny look they give you sometimes. :)  I know what you  mean too about the heavy arm feeling. Mine feel like they weigh 100 lbs sometimes and they feel like the weights a laying on my arms!

[*Stormy*]

The wet spot thing...b4 I started having leg issues I got this repeated cold/wet spot feeling b/w my thighs...it kept feeling like I wet myself and didn't know it!! It lasted about a week and then went away, a few weeks after that I started to have trouble with my legs. In my case I think it was a warning that nerve damage was occuring!

thankful2bhere..muscular issues seem to be on the forefront for me too since my surgery...chronic body pain and constantly weak muscles, especially around the joints which has caused my joints to become unstable.. I have pain in several parts of my body all at once, the pain moves from one area to the next and wherever the pain is, I can find that muscle and I can feel it roll under my finger. Does any of that sound familiar to what you experience?

Carolyn

[lilmiss1999]

Nice to meet u on here. I am 36, 3 kids (14,11,8) I too have always been very active. = have trained horses for years and my favorite part is working with the babies. I currently have a blk/wht National Show Horse (I will be using her to have Freisian cross babies. My dream is to have a baby every year to work with. My goal is blk/wht Freisians) She is the one I have as my picture with her first draft cross filly. She produces amazing babies. I also have a pinto quarter cross mare and a NSH gelding. I could go on forever....:)

Yes it has been hard to accept my limitations. My arms also get very sore. Almost like a heavy feeling that aches and does not get any better even changing positions. I recently lost my gag reflex too and now I have had 4 episods when my voice breifly goes to a whisper and then comes back. Have u had any other issues since your surgery? Are u glad you had it when u did?

[thankful2bhere]

Wow. Strange to read all of what you wrote. I too have problems with being cold. One minute l'll be fine and really rather warm, and then the air cond will come on and hit me just right and that's all she wrote. I'm running for the blanket box! I've usually blamed a lot of my symptoms on my type 1 diabetes (since age 13). Now Im 45. I had Chiari decompression done May 10, 2001 and now have a VP shunt draining because of so many infections (aseptic meningitis, staph etc) during healing process after surgery. One Long Year! Very close calls a couple of times and I know that God has a reason for keeping me here. I have horses also. I have a beautiful 16hh Solid Black TN Walker who all most threw me 3 yrs ago. Bucked me, full rodeo style buck, down our drive, and I finally turned him enough to stop him. Then about 8 mo. later he spooked while I had my arms around his neck and knocked me down and ran over me. Needless to say. Im a little spooked now. Not so much for the reasons you'd think but just because I know how much more fragile I am and don't want to be out of comission or in the hospital wracking up some giant bill to burden my family with! Ya know? I've always been active. Horses, 4 wheelers, hiking, boating (skiing) when I was young and want to continue to be as active as possible but know I have limits. Its just so hard to accept them though. Is it that way for you too? Do you have kids? I have a 15 y/o. daughter.  About feeling the wet spot. I do that all the time. Ill think I splashed my leg or dripped something on my arm or hand. I look all over for it....nothing! Very strange. It will keep happening in the same spot for quite a while and then finally quit! You're not alone. I freeze to death with the slightest stimuli and feel things that aren't there. My biggest hurdle right now and for the last 2-3 yrs is deep muscle pain. Stinging right hand and very sore tired painful calves. My forearms kill me. Esp. after using the computer! How 'bout you? Where are you from? Im in Arkansas. Lived in TN for 10 yrs too.:) 100% southern girl.

[lilmiss1999]

I still have feeling in my fingers so thank goodness. Sorry you burnt yourself so bad.

my doctor knows about the intolerance to cold but said nothing.

still waiting for an opinion from Chairi specialist in washington as NL here does not think Chiari is affecting me.

Also do you ever feel like you set your hand or arm gets wet but it is dry? I dont know how to describe the feeling other than that. I was sitiing down and thought my blanket was wet and my arm and side of hand had touched the wet spot but all was dry. That feeling lasted a couple hours. weird!

[lu7997]

I just notices that recently cold hurt me. I knew I had a bad winter but thought summer was going to be better. Until I went swimming with my girls and felt as though I was being burned and the other night at the drive INS I reached in the cooler and I thought I was going to loose my hand the pain felt like I was reaching into a fire.    I just thought it was my over sensitive nerves though. I bump my arm and it feels like I broke it.   It is almostlike the brain doesn't know how to properly reheated things. Cause I pulled a caserole out of the oven with a wet towel (no feeling in fingers didn't know it wa wet lol). And I didn't feel a thing until the next morning when I had blistered my fingers.....  Make sure u ask your doc though it is deffinetly something he should check into for you

[selmaS]

I do not understand the science of raynauds and EDS, but outside my drs telling me this is the symptoms list.
I added two **'s in where Raynauds is listed as Raynauds Phenomenon.

Signs and symptoms


Individual with EDS displaying hypermobile joints.


Individual with EDS displaying skin hyperelasticity
Signs vary widely based on which type of EDS the patient has. In each case, however, the signs are ultimately due to faulty or reduced amounts of collagen. EDS most typically affects the joints, skin, and blood vessels, the major signs and symptoms include:
Highly flexible fingers and toes
Loose, unstable joints that are prone to: sprains, dislocations, subluxations (partial dislocations), hyperextension (double jointedness) [5]
Flat feet
High and narrow palate, a sign, resulting in dental crowding
Easy bruising
Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
Velvety-smooth skin which may be stretchy
Abnormal wound healing and scar formation
Low muscle tone and Muscle weakness
Early onset of osteoarthritis
Cardiac effects: Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse) [6]
Fibromyalgia symptoms: Myalgia and arthralgia[7]
Other, less common signs and complications may include:
Osteopenia (low bone density)
Talipes equinovarus (club foot), especially in the Vascular type
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility,[8] Arnold-Chiari malformation (brain disorder)[9]
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy) [10]
Vascular skin conditions: **Raynaud's phenomenon, Livedo reticularis
otosclerosis (hearing loss) [11]
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly) [12]
Infants with hypermobile joints often appear to have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture
Swan neck deformity of the fingers [13]
Because it is often goes undiagnosed in childhood, some instances of Ehlers-Danlos syndrome have been mischaracterized as child abuse.[14] The pain, a symptom, associated with this condition is a serious complication.

[lilmiss1999]

I started in the tube but touching the water nonstop was too much so I switched with my daughter and took the raft. No open bottom which helped a little until water came in and then i ended up sitting inwater until we could get over and empty it.

[lilmiss1999]

This time I was in a raft with my youngest son. I was able to sit up on my knees. I have always had issues riding in a tube because of the neck pain but always thought that it was just because I have a weak neck or something. I constantly pull my neck muscles and get spasms even doing something simple like getting into my car. The muscles in my neck and shoulders have been tight for years. I have tried massage but nothing helps. also get spots that burn. like a hot pocker is being shoved into my shoulder blade. I never realized it could be something else. A lot of my symptoms have gone on for years and I just thought that was normal. Until they incresed I never paid much attention to them. I just went along with my life and now it seems to have come to abrupt halt. Feels like age 36 is the new 60! lol.