Raynaud's Disease Syndrome?
Raynaud's Syndrome is a disorder where the small blood vessels (capillaries) narrow to restrict the blood flow to involved areas.
Its symptoms generally affect the body's extremities such as a persons hands and feet but the lungs can also experience an involvement of symptoms. During an attack the extremities involved will appear white, blue, or reddish in color. Although the length of time that these attacks can last will vary with each individual the disease itself is generally quite mild.
Raynaud's disease is usually treated as one of the quieter illnesses out there but for those who suffer from a severe form of this syndrome it can be devastating. Risk of infection or death of body tissue due to a lack of blood flow can be the consequences of a severe bout of its symptoms.
In rare instances the illness can become dangerous. If the attacks last for extended periods of time then the tissue that is deprived of blood flow will begin to die. During this time care must be taken to avoid infection of the afflicted extremities. It is important to seek physician advice as medication can help to alleviate the symptoms.
It is usually exposure to cold or stress that causes an event to occur but other triggering agents such as caffeine (coffee), cigarette smoking or exposure to other pollutants and stimulants can also cause an incidence.
In many cases it can be an underlying health issue that increases your chances of having issues with raynaulds. Underlying disorders such as scleroderma, antisynthetase syndrome, or Sjogren's syndrome will increase a persons likelihood of developing Raynauds. It is also more predominant in women than men.
1. If you notice that your hands or feet turn white or blue when you are cold or under stress.
2. If you experience pain or tingling in your fingers or toes.
3. If you frequently suffer from extremely cold hands or feet.
4. If you notice your hands visibly display cuts, blisters, hang nails, scaring, or dying tissue.
1. Elevate your feet. Sit with your feet propped up whenever it is possible to do so.
2. Reduce or eliminate stimulants which might initiate a flare.
3. Do not smoke.
4. Eliminate caffeine.
5. Reduce your emotional stress.
6. Reduce the physical stress that your inflamed areas are forced to endure. This means reducing the amount of walking that you do. Reduce the activity which your hands participate in ie: baking, kneading dough, working on craft projects.
7. Keep gloves or slippers on to warm your hands and feet.
8. During an attack place your hands under your arms or in a bowl of warm water to warm them quickly or wrap yourself in a warm blanket. Feet can be soaked in warm water.
9. To avoid infection soak hands or feet in warm salt water three to five times throughout the day. Do not rub inflamed tissue with the towel when drying - pat dry to prevent injury.
Loose fitting clothing will help prevent restriction of the blood vessels. Wear loose fitting socks, slippers or shoes to reduce restricting circulation further and to decrease exposure to cold surfaces that may trigger an attack. Avoid contact with cold floors.
Reduce or eliminate your caffeine intake.
Do not smoke.
Wear gloves when retrieving food from the refrigerator, when driving, or in any other circumstances when cold might trigger an attack on your hands. Do not go bare foot in the house.
Try to reduce your physical as well as emotional stress levels. If you are in a very active phase of the illness reduce the amount of stress on the area that is inflamed. ie: Reduce the amount of walking that you do to help alleviate stress to the feet. Reduce the amount of typing you do to give your hands time to recover.
The term Raynaud's disease is generally used when the symptoms of this illness present themselves without other forms of arthritis or other disease also being present. The term syndrome or phenomenon is used to describe the symptoms of Raynauds disease when they occur in conjunction with other disorders.
My battle with Raynauds Syndrome
It's rough being diagnosed with a rare illness but it is even rougher when you realize that the specialist treating you does not have much experience with your disease. That is what happened to me.
I was twenty-six years old and a divorced single mother studying at our local college went it hit me. I went down like a rock. My joints and muscles stiffened. I had difficulty swallowing and breathing and I was so fatigued that some days I had difficulty just sitting at the kitchen table for a few hours.
I was dopey, my brain fuzzy and confused, and I could not concentrate on even a simple conversation for any length of time. My hands and feet became very cold sensitive and the blood flow to them would shut off at the slightest hint of cold, or physical or emotional stress.
Within a month the stiffness was so bad that I could no longer get into the bathtub, rise from a chair, or climb stairs without difficulty. The fatigue and brain fog made studies impossible and I was forced to withdraw from my studies.
A diagnosis was made of severe Rheumatoid arthritis but of course this diagnosis did have a few flaws as it did not explain the swallowing, breathing, mental confusion and fatigue issues. Two years later it was discovered that I had JO-1 antibodies.
JO-1 antibodies are rare and classified under the category of rare diseases. Even today there is not a lot of knowledge or awareness on this illness and back then there was far less. I was sent to a specialist at the nearest large medical facility to be treated.
After examining me the specialist informed me that I should not be having breathing, severe fatigue, or swallowing difficulties, and that he didn't have a clue what the dopiness was. I was also told that JO-1 antibodies indicated that I had Polymyositis and that steroids or immune suppressants were the method of treatment for this illness. He wanted to begin treatment with these right away.
During the earlier years of my illness I had tried Prednisone treatment and found myself extremely agitated by it. The effect of the steroid had been so extreme that I had thought that I might suffer a heart attack at any hint of stress. I was uncomfortable with either drug treatment and tried to explain to him that I had difficulties using Steroids and had concerns with these drug options. He looked directly at me and bluntly stated that I just did not want to get well. I felt as though I were being backed into a corner. I was on sick leave insurance at the time and so naturally felt very threatened by his statement. I agreed to once again undergo steroid treatment.
Shortly after I started steroid treatment the toes on my left foot began to blacken. The blood flow to my feet was shutting off. Just as happens in a case of severe frostbite without blood flow my toes were beginning to die.
I was put on the drug Adalat to open the small capillaries. I was also told to stay off my feet and to bathe them in salt water throughout the day to prevent gangrene from setting in. I was terrified. As the days passed the darkness spread across my foot affecting the majority of toes. My center toe begin to die inward with the black slowly creeping deeper into that toe.
I was massaging the bottoms of my feet morning and night to encourage any blood flow that I possibly could. I continued the salt baths, staying off my feet as much as possible and the Adalat combined with other anti-inflammatory drugs. My family doctor began to sound like a mother hen, pat your feet dry, never rub them, are you smoking (no), stay off your feet.
I began seeing a local surgeon every second day waiting for him to make the call as to when to operate. Each visit he would lay the stethoscope on my foot and listen for the blood flow. Then he would nod his head that it was okay for me to leave. By some small miracle the circulation began returning to my feet, but there was still the worry that it would be to late to save my one foot?
The black on my toes began to dry and shrivel. The layers of black peeled off one by one. On my center toe the black pulled up like a cork coming out of a bottle and then the gaping hole slowly closed over. I was safe. The dreaded gangrene did not set in. To this day my general practitioner still says that he is shocked that I did not lose my foot. He said that the very least he thought that I would lose was two toes.
Now that I was well enough to travel I was once again sent to the larger medical center and placed in the hospital there.
Here the Specialist who had prescribed the Steroids was to once again treat me. He looked at me and said something to the effect that I certainly looked different. Having gained forty pounds on the steroids and from lack of activity I would hazard a guess that I certainly did.
I was prescribed the immune suppressant Plaquenil and began taking it. He also hauled me down the hallway one morning to present me in front of a group of medical students. My diagnosis and recent health difficulties were explained to them and then I was escorted out so they could discuss my condition.
After a week I was sent home. My local doctor was sent a note that contained the following information: JO-1 antibodies are a marker for people with Antisynthetase Syndrome. Individuals with this illness generally suffer from polymyositis, multi-arthritis, interstitual lung disease, severe Raynaulds phenomenon, as well as mechanics hands. It also stated that steroids at this time would be of little benefit for me.
I have to wonder if the antisynthetase diagnosis came from one of those medical students but whatever the case I refused to see that specialist again. I went online to see if I could discover anything and it was there where I found a website that would provide me with the information I needed. I was to learn at Myositis.org that brain fog, swallowing, and breathing difficulties are all common symptoms for people with jo1 antibodies.
Since that time awareness of my illness has improved somewhat. I have learned quite a lot about my illness and have also learned to research every aspect of my disease, symptoms, and treatments to insure that I play a major part in my therapy.
I've learned to never be afraid to question a physician. They have the medical knowledge to treat you but you know your body so to receive the most beneficial treatment you must work in a joint effort on your therapies. Where chronic illness is concerned knowledge is indeed power.
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