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.
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
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)
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)
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
Vascular skin conditions:* Raynaud's phenomenon, Livedo reticularis
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
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.....
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.
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.
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
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.....
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
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!
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....
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.