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raynauds disease?
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raynauds disease?

If anyone on here has fingers, toes, nose and lips that get so numb they go white and dont have feeling from the cold or stress, its called raynaulds. I found it on my report from y nl. Hmmm learn something new everyday. Its not harmful just annoying.
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620923_tn?1426651955

  Hi...yes, it is also part of EDS....I had it yrs b4 I knew about my Chiari and EDS dx.....

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:
Loose, unstable joints that are prone to: sprain, dislocation, subluxation and hyperextension
Early onset of osteoarthritis
Easy bruising
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)
Flat feet
High and narrow palate, resulting in dental crowding
Vulnerability to chest and sinus infections
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
Myalgia and arthralgia

Other, less common signs and complications may include:

Headaches caused by an acquired Arnold-Chiari malformation (brain disorder)
Osteopenia (low bone density)
Problems with proprioception including dysmetria
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
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Gastroparesis (partial paralysis of the stomach)
Early-onset periodontitis
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)

Vascular skin conditions:* Raynaud's phenomenon, Livedo reticularis
Blue sclera
Swan neck deformity of the fingers
Insensitivity to local anesthetics.
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly)
Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture
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1823499_tn?1370093889
Wow thanks selma. Just one more thing to discuss with dr oro. Maybe i have eds. I have the joint isue on left side nl said and also a really high roof of mouth. Hmmmm wonder why my nl didnt send me to get tested for eds? Now im wonderin.....
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620923_tn?1426651955

  So many over look it..this is y I am always saying get checked...there r so many things that can be going on and we assume it is the chiari when it may be a related issue like EDS.....

  And this can affect how u feel and heal post op...all depends on how it is affecting u...
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Avatar_f_tn
This can be harmful if it is Raynauds. Too long without blood flow causes tissue death. It can also harden the capillaries and arteries, but allowing for proper blood flow. Necrosis and gangrene can become an issue with Raynauds. It is imperative to keep those spells as few and far between as possible. Also, some headache preventatives such as beta blockers can worsen Raynauds, do always ask your dr about your meds and Raynauds impact.
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620923_tn?1426651955

  Hi and welcome to the Chiari forum.

  This is an older thread and the person  you are  addressing your  reply to may not see it...you can send  a PM(private message) which will generate an e-mail alerting them someone is trying to make contact.

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979826_tn?1389039958
i was just diagnosed with Raynauds. my dr said i have frost bite on my toes from lack of blood flow. do you know if there is anything to be done about it? i am having some test done tomorrow like an ultrasound of my feet to look at the veins but i don't remember why he wanted that lol
molly
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620923_tn?1426651955

  Hi Molly,

Wow  frostbite....is that recent?

  I know I had frostbite  like injury after a cortisone shot...they numbed the area with a spray and I got frostbite from it....mine was not too bad and has resolved...you can no longer see the darker skin where it occurred.

I would guess it is a matter to how badly you were "burned" by the cold...that is how I described how it felt like being burned....

  My raynauds does not seem to be as bad as it was prior to my decompression....I am not sure how it changed but it has.....
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979826_tn?1389039958
yes, the frostbite is recent. it is only in my left toes but both of my feet freeze. so idk lol its always something right? lol see before my decompression i was always HOT!!! now i FREEZE!!!  i dnt get it lol
Molly
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620923_tn?1426651955

  And I am the other way round...I froze all the time b4 surgery and now I tend to be warmer...wont say hot....lmao....but you know what I mean....

Weird how we are affected and I am sure a lot of it is the nerves and which ones are being affected...by compression etc.....

Not sure if you remember when I bought my ugg like boots and I was wearing them even in the summer....my ankle was cold to touch all yr round....
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979826_tn?1389039958
everything you say i can relate to!!!! you just get it! it is so great talking to somebody who understands!!! thank you! <3 today at pt my therapist was doing some deep tissue on my hip and she paused and looked confused, then she said did you ice before you came? and i laughed and said NO i never ice if anything i use heat and she said you leg feels like ice lol we talked about the Raynauds but it cracked me up!
Molly
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620923_tn?1426651955

  LOL...yup I have had that too...always felt ice cold....but as I said I am not that bad now post op...but still have it from time to time.....when I went to PT they could not ice me or I would get frost bite....lol...like for the shot.....my skin was discolored for yrs....but  I ca no longer see it...so the skin must be ok....just took a while....

Happy New Year Molly <3
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