Sarcoidosis Association
A voluntary organisation dedicated in promoting and providing support and awareness
                                                                           
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Symptoms


Many Sarcoidosis patients do not have any symptoms. Some have only one symptom, whilst others will have several debilitating symptoms requiring on going management with treatment. The symptoms are varied between each individual sufferer with a multitude mixture throughout a day, which are often very unpredictable. Each symptom can last for days, weeks, months at a time, sometimes permanent.

A sufferer often finds themselves waking up feeling exhausted every morning, unable to know how they are going to feel or what they will be able to do from one moment to the next.

General symptoms caused by the disease include fever, tiredness, fatigue and exhaustion, weight loss, night sweats, severe joint pain, muscle weakness and an overall feeling of ill health as if to have Flu like symptoms 24 hours a day.

Other symptoms depend on the individual and the organ involvement, however non specific severe symptoms most commonly reported that reduce the quality of life significantly are: profound fatigue, malaise, arthralgia, myalgia and eye symptoms.

It is important to understand that symptoms which affect quality of life and organ involvement itself does not always correlate. You can have severe debilitating symptoms making you feel very unwell that do not pose serious danger.

Some organs are affected more often than others. Sarcoidosis occurs most often in the lungs.

It also commonly affects:

bullet skin
bullet eyes
bullet lymph nodes
bullet liver

Less commonly, it affects the

bullet spleen
bullet brain
bullet nerves
bullet heart
bullet tear glands
bullet salivary glands
bullet sinuses
bullet bones and joints

Rarely, it affects other organs, such as

bullet kidneys
bullet breasts
bullet male and female reproductive organs.

The effects of Sarcoidosis in an organ are sometimes so mild that there are no symptoms and the organ continues to function well.

Lungs:

Lungs are the most commonly affected organ. 94% of people with Sarcoidosis have lung involvement, Common lung symptoms are a dry persistent cough, trouble breathing, wheezing, or pain with breathing, chest pain, tightness, or discomfort.

Lymph Nodes:

Lymph nodes are glands found throughout the body that make and store white blood cells. When Sarcoidosis inflammation targets these glands, they increase in size. Swollen lymph nodes can be uncomfortable, but they rarely cause medical problems unless they press on organs or blood vessels.  Most commonly, it’s the lymph glands in the chest that are affected you can only see these with a Chest X-ray. Other places you might find or notice enlarged lymph nodes include your neck, under your chin, in your armpit and in your groin.

Spleen:

The spleen is part of the lymphatic system, which regulates blood cells and plays a role in immunity. Sarcoidosis of the spleen does not usually cause symptoms. If you do notice symptoms, they might include pain or pressure on your upper left side under your ribs or feeling tired.

Liver: 

Granulomas can cause the liver to enlarge.  The disease rarely causes serious liver problems, however, and most people do not realize it when their livers are affected.  If you have liver symptoms, they might include fever, feeling tired or fatigued, itchy skin, pain on your upper right side under your ribs.

Heart: 

Heart problems can be very serious, everyone who has Sarcoidosis should be screened for cardiac involvement.  Sarcoidosis can cause the heart to pump weakly. This results in such symptoms as shortness of breath, swelling of the legs, wheezing and coughing, although these can be a sign of lung problems too.

Brain & Nervous System: 

The nervous system includes the brain and all the body’s nerves, and it may be affected. The disease can cause a mass of Granulomas in the brain. The disease also can affect one or more nerves anywhere in the body. Most often, it affects the nerves of the face. Symptoms of the disease in the nervous system vary. If there is a mass in the brain, symptoms can include headaches, visual problems and weakness or numbness of an arm or leg. When Sarcoidosis affects a facial nerve, it can cause one side of the face to droop. This may be the first symptom that someone has of Sarcoidosis. When Sarcoidosis affects the spinal cord, it can cause weakness or even paralysis of the arms or legs. When multiple nerves in more than one place are affected, the disease can cause weakness, pain, or "pins and needles" sensation in those areas.

Skin:

Sarcoidosis of the skin can result in rashes or different types of skin lesions.  If you have one of these skin problems it can be a clue to how serious your case of Sarcoidosis is.  One type of lesion is called Erythema Nodosum which causes raised, red, and tender bumps to form on the skin, usually on the front of your legs. Nearby joints are often swollen and painful.

Erythema Nodosum usually goes away on its own in 6 to 8 weeks, even without treatment.  Lupus pernio is an uncommon skin condition that causes hard, reddish-purplish bumps to form on your cheeks, nose, lips, and/or ears. These bumps do not go away on their own and often come back when treatment is stopped. They are usually associated with chronic Sarcoidosis.

In some cases, the sores are disfiguring and can damage underlying cartilage and bone.  Other lesions may appear as bumps on or under the skin, rashes, sores, scaling, and/or changes in old scars or tattoos that do not go away and are rarely painful or itchy. These skin problems are also associated with chronic Sarcoidosis.

Bones, Joints & Muscles:

Musculoskeletal Sarcoidosis (musculo=muscles, joints and bones=skeletal) can result in a number of symptoms.   Arthritis, which is joint pain, stiffness, and/or swelling that usually occurs in the first 6 months of the disease. It begins suddenly in one or both of the ankles and/or feet, and sometimes involves the knees, toes, fingers, wrists, and/or elbow joints. It often accompanies erythema nodosum, and it usually goes away on its own in a few weeks or months. 

Late-onset arthritis, which usually occurs 6 months or more after Sarcoidosis develops, is less painful and affects fewer joints than early-onset arthritis and is often associated with chronic skin symptoms rather than erythema nodosum. This type of arthritis can last a long time or a lifetime, or it may come and go, but it usually does not go away for good without effective treatment like early-onset arthritis does. It can cause permanent joint damage and should be treated even when it is not painful. 

Sarcoidosis also can affect the bone marrow (soft, organic material that fills bone cavities), which produces blood cells. This can result in anaemia.

In muscles, Sarcoidosis may cause muscle aches or muscle pain or muscle weakness. The disease can also cause bone cysts.

Eyes:

Common symptoms of Sarcoidosis in the eyes include: burning, itching and/or pain, dryness, tearing, red eyes, vision problems such as seeing black spots (called floaters) and blurred vision, sensitivity to light and small, pale yellow bumps on the eye. As a precaution, a routine eye examination performed by an ophthalmologist is recommended for anyone with suspected Sarcoidosis.

It is a good idea to schedule them annually for several years after your diagnosis, and routinely as recommended thereafter.

Kidneys & Urinary Tract:

Sarcoidosis rarely attacks the kidneys directly. However, the disease can cause the body to overproduce vitamin D, which in turn causes the body to absorb too much calcium and can lead to kidney stones. Although they are uncommon in Sarcoidosis.

It is a good idea to ask your doctor to check you for excess calcium before kidney stones have the chance to develop.  Symptoms of kidney stones you might notice include pain in your back or side, or an increased urge to urinate.

Salivary Glands:

Inflammation in the salivary glands can sometimes cause painful dryness in the mouth. When Sarcoidosis affects these glands, it can make your cheeks look swollen.

 

Copyright © 2013 Martine Caitlan of the Sarcoidosis Association. Registration Number 330053. All rights reserved.