raynauds syndrome

Discussion in 'Fibromyalgia Main Forum' started by dverre, Aug 9, 2005.

  1. dverre

    dverre New Member

    Hi everyone.

    Can anyone tell me if raynauds syndrome is common with fms and cfs.

    I was just dianosed with raynauds today and really dont know alot about it.

    Could use a little help here on that.

    Thank you

  2. Greenbean7

    Greenbean7 New Member

    I was diagnosed at 16 and was basically told to move to a warmer climate.

    Got checked again at about 32 after getting frost bite on my toes while scuba diving. The doc asked if I smoked. I said no and he said that was too bad because if I smoked and quit it might help.

    He put me on a vasal dialator (sp?) and it gave me migraines.

    So, basically I still need to move to a warmer climate. Tahiti sounds good! Wonder if I could get a rx for that!

    I have a bad time in the winter but, of course, dress for it. The hard time is in the summer when you go into a restaurant or store and the ac is so high that your hands start to freeze up. I wore sandles to work today and had to go out side (97 degrees) to warm up my toes!

    I wasn't diagnosed with FM until last summer but I do believe there is something on the website that addresses this subject, too.

  3. ladybird1

    ladybird1 New Member

    Been diagnosed with it. Moving to a warmer climate only helps if you don't need air conditioning to survive the heat.
    If the AC is up too high indoors, it triggers mine.
    I live in Texas. Had a bout of it this past month.
  4. JLH

    JLH New Member

    RAYNAUD'S SYNDROME - a guide for patients


    Raynaud's syndrome is a painful condition usually affecting the hands and feet. A few with the condition may develop another rheumatoligical condition in the future and this may be predicted using various tests. Treatment includes preventative care, medications and, rarely, surgery.

    What is Raynaud's syndrome?

    Raynaud's syndrome is due to poor circulation, usually in the hands and feet, although may affect the nose, tongue or ears. The tiny blood vessels in the affected area close down, supplying very little blood to the extremities. Numbness results and on warming, the area may throb painfully.

    When Raynaud's syndrome occurs alone it is known as primary Raynaud's; when it occurs with another related condition it is known as secondary Raynaud's syndrome.

    Raynaud's can be a useful predictor of autoimmune rheumatic disease.

    How common is Raynaud's?

    Raynaud's syndrome occurs in up to 5% of typical healthy populations. Over 90% of patients with Raynaud's phenomenon are female and under 25 years of age when they first develop the syndrome. Up to 5% of patients presenting with the condition eventually develop an autoimmune rheumatic disease.

    What are the symptoms of Raynaud's?

    Raynaud's syndrome occurs on and off, usually as a response to cold or, rarely, as an emotional reaction. The affected areas, usually fingers or toes, turn very white or blue and become numb when cold. On warming, they turn bright red and throb painfully.

    Underlying causes of Raynaud's syndrome

    Underlying causes of Raynaud's may include:

    Occupation - outdoor workers, use of vibrating tools, chemical exposure (eg vinyl chloride).

    Medications - ß (Beta) blockers, ergotamines, oral contraceptives, bleomycin.

    Blockages to blood vessels - proximal vascular occlusion.

    Other connective tissue disorders (eg Arthralgia or arthritis, Alopecia, skin rashes, cerebral symptoms, photosensitivity, dry eyes or mouth, mouth ulcers, muscle weakness, respiratory or cardiac problems).

    Diagnosis of Raynaud's syndrome and related conditions

    Diagnosis of primary and secondary Raynaud's syndrome includes clinical examination and laboratory investigations.

    The most simple examination is viewing of the affected area during or soon after an episode, by a doctor. Further physical examination includes assessment of peripheral pulses, measurement of blood pressure in both arms, and examination of the neck for tenderness often associated with a cervical rib.

    Raynaud's syndrome may be mistaken for chilblains by sufferers, so continued episodes of suspected chilblains should be checked by a doctor.

    The development of gangrene due to Raynaud's syndrome is relatively rare, and because patients are often young, recovery may be remarkable.

    Up to 5% of patients with Raynaud's syndrome eventually develop an autoimmune rheumatic disease.

    What are autoimmune rheumatic diseases and how are they predicted?

    Up to 5% of patients with Raynaud's syndrome eventually develop an autoimmune rheumatic disease. The most common related diseases and their incidence of development to Raynaud's sufferers are:

    Rheumatoid arthritis <5%

    Systemic lupus erythematosus 20-30%

    Sjogrens syndrome 20-30%

    Myositis 25%

    Scleroderma >95%

    A variety of tests are undertaken to predict development:

    Full blood count and erythrocyte (red blood cell) sedimentation rate

    Total immunoglobulin (immune system protein) and electrophoresis strip (measurement of molecules)

    Urine analysis

    Renal and liver function tests

    Nail fold capillaroscopy

    Test for antinuclear antibody

    Chest x rays

    Hand x rays

    It is important to note that a negative test for antinuclear antibody in an otherwise healthy patient does not exclude future development of an autoimmune rheumatic disease.

    Different types of antinuclear antibody may be specific for certain diseases and so may help diagnosis. A variety of investigations may be used to measure vasular (blood vessel) problems, including Plethysmography, Doppler ultrasonography, and laser Doppler flowmetry with direct capillaroscopy and thermal entrainment.

    How is Raynaud's treated?

    Those with Raynaud's syndrome having no symptoms other than changes to color of affected areas may only need prevention measures to avoid complications.

    Some Raynaud's syndrome patients have claimed improvement after changing to diets supplemented with fish oils.

    Ulcers or sores on the tips of the fingers or toes should be monitored closely by the doctor as these can become infected. Gently applied finger splints are used to protect ulcerated areas. Ointments to open blood vessels (nitroglycerin ointment) are sometimes used on the sides of severely affected digits to allow increased blood supply and healing.

    Severe Raynaud's can lead to gangrene and the loss of fingers or toes. In rare severe cases, nerve surgery called "sympathectomy" may be considered. The nerves stimulatingconstriction of the vessels are surgically interrupted in order to prevent blood vessel spasms.

    Some patients with primary Raynaud's and most with the condition secondary to an underlying autoimmune rheumatic disease require drug treatment. Medication appropriate to the individual patient should be discussed with a doctor.

    What medications are used to treat Raynaud's syndrome?

    Patients with persistent or bothersome symptoms may be helped by taking oral medications to open (dilate) blood vessels,including calcium channel blockers - a modified release of this preparation reduces the common side effects of headache and flushing. Other medicines used for blood pressure treatment may help dilation. Medications that "thin" the blood, such as low doses of aspirin or dipyridamole may be helpful.

    Some patients with persistent symptoms can benefit by a medication to make red blood cells more pliable and improve circulation, called toxifylline.

    Some medications can aggravate symptoms by increasing blood vessel spasms. Such medications include over-the-counter cold and weight-control preparations, such as phenylpropanolamine and pseudoephedrine found in some cold and flu or headache medications. "Beta-blocker" medicines used for high blood pressure and heart disease can also worsen Raynaud's.

    Prevention and care

    Prevention measures are important in primary and secondary Raynaud's syndrome regardless of the severity. Initial simple care:

    Keep the body warm, especially the extremities.

    Wear warm clothing in colder environments.

    Use cotton gloves while searching the freezer.

    Keep room temperatures warm.

    Use rubber gloves to protect the hands and prevent cooling while dish washing.

    Minimise barefoot walking.

    Avoid compression of the blood vessels by tight-fitting wrist bands, rings or foot wear.

    Special care of nails is needed to avoid injuring sensitive toes and fingertips.

    Smoking(and passive smoking) should be avoided as the chemicals in tobacco smoke can cause blood vessels to constrict and harden the arteries, which further impairs oxygen supply to the extremities.

    Patients should guard hands and feet from direct trauma and wounds. Any wounds or infections need early treatment to prevent more serious infections. Avoiding emotional stresses and tools that vibrate the hand may reduce the frequency of attacks.

    The Medic8® Family Health Guide
  5. JLH

    JLH New Member

    I have Raynauds. I have always been led to believe by my rheumy that it was something that went along with my SLE (Lupus).

    All I know is that when I'm cold, my hands and arms & feet and legs will turn really blue with white spots--sometimes the color is my purple than blue!

    And sometimes my skin is bright red or bright pink with white spots.

    I seem like I always have a lot of white spots or splotches all over my skin.

    The coloring of my skin is definitely not like everyone else's!!!

    Other info from my rheumy: always wear sunscreen (that's partically because of my lupus), in the winter, always wear a coat and stay warm, wear gloves, and socks and proper footware.

    Take care,
  6. Greenbean7

    Greenbean7 New Member

    When I was tested in my early thirties they took the blood pressure in my finger and then made me put my hand in ice water for as long as I could stand it (they wanted 20 minutes, yeah, right, barely made it 5) then took the blood pressure again.

    My fingers and toes turn white and when you compress the end of the finger it just stays that way, it doesn't plump back up like it does when it is warm.

    Air condition is a big problem as is getting things out of the freezer. When ever I work with anything cold in the kitchen, like making hamburger patties, I turn on the warm water and put my hands in it when they start to hurt.

    The day I frost bit my toes my legs were white almost to the knees. Took several hours for the blood to work back down to my toes. Can be very dangerous. I get sores on the ends of my toes every winter now. Be very careful with this!

  7. smiffy79

    smiffy79 New Member

    basically i have to wrap up or face losing my toes/fingers bits of ear or end of my nose,raynauds sucks!
  8. Greenbean7

    Greenbean7 New Member

    Oh, come on Smiffy, tell us what you really think! I agree with you 110%. It's cold in here today and I am going outside to warm up! Hate this.

    Mine does act up when I am nervous. Both feet turned white when I had a part in a play in high school. Made me walk funny on stage! I hate when that happens!

  9. smiffy79

    smiffy79 New Member

    wasnt up to writing loas when 1st responded.

    raynauds horrible,first started in toes and i didnt pay much attention except to add a pair of socks.
    toes turned purple and started to turn under next toes along, then went to dr when fingers and nose started :(
    dr wanted to amputate little toes that year and said they will only get worse-which they have and are now numb all year round--and purple.
    dr asked me to wear earmuffs to bed at night if cold and balaclava during the day during winter.
    i have to carry those pocket warmer things when i go out and wear loads of layers.
    in the summer if near air conditioning for too long then i have -------------you know what i feel like i am whining on now---its horrible :(