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Undiagnosed Inflammation
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Undiagnosed Inflammation

I experienced years of painful inflammation that appears all over my body,(the attacks coming once every few months). I found during this time, that if I took Amoxil, I was without symptoms. Last year , the attacks starting coming very frequently, until I was having them one after another. Finally, I was diagnosed with Endocarditis and a bad aortic valve. I had gram positive, gram negative, and strep.  Underwent 7 weeks of antibiotic treatments via a port. All subsequent blood cultures have been negative. I had the valve replaced Oct. 29th, 2001.  I was free of the inflammation for about 3 weeks.  NOw I am experiencing inflammation again. It can move from the hand, to the shoulder, to the foot, to the side of my leg in one weeks time.  It is sometimes, but not always, very red and swollen.  Sometimes no redness , just sore.  I am incapacitated with pain when I have an "attack".  I cannot move the affected area, nor touch it at all. I sometimes have high fever and feel very unwell and sometimes even vomit. I have been tested for gout (uric acid levels normal), lymes, rheumatoid, ...all negative.  My doctors are baffled.  No one has ever seen anything like it.  My SED rate is always abnormally high 44.  I have been on steroids on three occasions, with some luck.  But then the attacks come again.  I have noticed that if I am upset about something, or worried, that I will have an attack every time.  I have been treated by a cardiologist, rheumatologist and infectious disease specialist.
My infectious disease specialist thinks it is some sort of connective tissue disease...but which one?  The inflammation is of the tissue, not the joint. But can be next to the joint.  I can move the joint, but cannot touch the area around it.  Have had it also in the bottom of the foot, side of leg, shoulders, hands (sometimes both at once), back of ankle, top of arm between elbow and wrist, and even sides of my neck on occasion.  The pain with this is so extreme I cannot stand it. Today I have a sore hand, two sore shoulders and  a sore foot.  I will be ready to return to work soon, but don't know if I will be able to work if I am still having these attacks.  PLEASE HELP ME!  Thank you!!
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Thank you for visiting the Family Practice Forum.

I am going to first summarize what you describe and then give you my impression of what appears to "fit" as a diagnosis.

1. Painful inflammation of various areas of the body including the hands, shoulder, feet and leg.
2. Inability to move the area due to pain/weakness during an "attack".
3. Negative tests for lyme, rheumatoid, gout.
4. Elevated Sed Rate
5. Increased "attacks" when under stress
6. Occasionally areas are associated with rash and swelling but not always.
7. Inflammation appears to be present more in the muscle and skin vs. Joint.

Based on what you describe, the diagnosis that comes to mind is that of "Polymyositis" and in your case "Polymyositis with Dermatomyositis". What follows are excerpts taken from the Merck Manual Home Edition on this condition.

Polymyositis is a chronic connective tissue disease characterized by painful inflammation and degeneration of the muscles; dermatomyositis is polymyositis accompanied by skin inflammation.

These diseases result in disabling muscle weakness and deterioration. The weakness typically occurs in the shoulders and hips but can affect muscles symmetrically throughout the body.

Polymyositis and dermatomyositis usually occur in adults from ages 40 to 60 or in children from ages 5 to 15 years. In adults, these diseases may occur alone or as part of other connective tissue diseases, such as mixed connective tissue disease.

The cause is unknown. Viruses or autoimmune reactions may play a role. Stress is a well known cause of exacerbations. The condition may be preceded by an infection of some kind and the presence of polymyositis has been linked to the presence of some cancers.

The symptoms of polymyositis are similar for people of all ages, but the disease usually develops more abruptly in children than in adults. Symptoms, which may begin during or just after an infection, include muscle weakness (particularly in the upper arms, hips, and thighs), muscle and joint pain, Raynaud's phenomenon, a rash, difficulty in swallowing, a fever, fatigue, and weight loss.

Muscle weakness may start slowly or suddenly and may worsen for weeks or months. Because muscles close to the center of the body are affected most, tasks such as lifting the arms above the shoulders, climbing stairs, and getting out of a chair can become very difficult. If the neck muscles are affected, even raising the head from a pillow may be impossible. Weakness in the shoulders or hips can confine a person to a wheelchair or bed. Muscle damage in the upper part of the esophagus can cause swallowing difficulties and food regurgitation. The muscles of the hands, feet, and face, however, aren't affected.

Joint aches and inflammation occur in about a third of the people. The pain and swelling tend to be mild. Raynaud's phenomenon occurs most frequently in people who have polymyositis along with other connective tissue diseases.

Polymyositis usually doesn't affect internal organs other than the throat and esophagus. However, the lungs may be affected, causing shortness of breath and a cough. Bleeding ulcers in the stomach or intestine may cause bloody or black bowel movements, more commonly in children than in adults.

In dermatomyositis, rashes tend to appear at the same time as periods of muscle weakness and other symptoms. A shadowy red rash (heliotrope rash) can appear on the face. A reddish-purple swelling around the eyes is characteristic. Another rash, which may be scaly, smooth, or raised, may appear almost anywhere on the body but is especially common on the knuckles. The fingernail beds may redden. When the rashes fade, brownish pigmentation, scarring, shriveling, or pale depigmented patches may develop on the skin.

Certain criteria are used to make the diagnosis: muscle weakness at the shoulders or hips, a characteristic rash, increased blood levels of certain muscle enzymes (CPK) characteristic changes in muscle tissue observed under a microscope, and abnormalities in the electrical activity of muscles measured by a device called an electromyograph. Special tests performed on muscle tissue samples may be needed to rule out other muscle disorders.

Laboratory tests are helpful but can't specifically identify polymyositis or dermatomyositis. Blood levels of certain muscle enzymes, including creatine kinase, are often higher than normal, indicating muscle damage. These enzymes are measured repeatedly in blood samples to monitor the disease; the levels usually fall to normal or near normal with effective treatment. A physical examination and additional tests may be needed to determine whether cancer is also present.

Treatment and Prognosis
Restricting activities when the inflammation is most intense often helps. Generally, a corticosteroid, usually prednisone, given by mouth in high doses slowly improves strength and relieves pain and swelling, controlling the disease. After about 4 to 6 weeks, when the muscle enzyme levels have returned to normal and muscle strength has returned, the dose is gradually decreased. Most adults must continue taking a low dose of prednisone for many years or even indefinitely to prevent a relapse. After about a year, children may be able to stop taking the drug and stay symptom-free. Occasionally, prednisone actually worsens the disease or isn't fully effective. In these cases, immunosuppressive drugs (such as Methotrexate, Cyclophosphamide, Azathioprine) are used instead of or in addition to prednisone. When other drugs are ineffective, gamma globulin (a substance that contains large quantities of many antibodies) may be given intravenously.

If you came to my office we would do the following:

1.Check a blood test for CPK and sed rate.
2.Consider a muscle biopsy
3.Arrange for an electromyelograph to be performed.
4.If prednisone was not effective, we would consider treatment with other immunosupressive agents.

I suspect a second opinion by another Rheumatologist with this information in hand may prove beneficial.

Please let me know if I can be of further assistance.

Dean M. Tomasello, M.D.

Just curious, I might be fishing here, but the description of polymyositis has some similar symptoms of what my 4 yr old son has. If it does effect internal organs as well, could explain his rectal bleeding. His creatinine has always came back abnormal although our Ped said it didn't mean anything. His most recent lab has his cratinine at 257  the reference range is 1000-2000. Should I be concerned and does this help in finding a diagnosis?
Will, I am so sorry for your pain and suffering, I pray that the Dr.'s suggestions bring some relief for you.
It is so hard to find a physician that can help.
No one seems to know what is going on.  I have
an appt. on Thursday and the Dr. is going to refer me
to another rheumatologist.  Just have to keep going and
going until I find SOMEONE that will help me.
I pray your little son will find help, too.  God Bless You!
Dr. Dean,  I am today in terrific pain with 100.8 fever...I have a foot swollen twice it's size, red and inflamed, my arm from elbow down including hand is inflamed and swollen , and my other foot now is beginning to get sore.  I have a Dr.'s appt. on Thursday, but am going to try to go tomorrow.  I imagine I will need a wheel chair to get in.  Hoping he will listen and try some of the things you suggested!!!  Will
I am hopeful that the information provided here will help you and your physician to formulate an effective treatment plan. I really think the possibility of polymyositis/dermatomyositis really has to be considered as a STRONG possiblity. I am so hopeful that your doctor is open to exploring this possibility further and considering other treatment options.
Thank you Thank you!  We saw the Dr. today.  He gave me
40 mg Prednisone for 4 weeks and then less for 3 more.  He
made an appt. for me with a Rheumatologist.  He was very
surprised to see me in a wheel chair!  If we dont' get any
results here, we may be seeing you one day!!
After being on the Prednisone therapy for several weeks now, I am
completely symptom free.  I am working and feel fabulous!
I saw the new Rheumatologist yesterday and he brought up the
Polymyositis without my mentioning it .  He ordered blood work, Xrays, and a nuclear Bone Scan on Feb. 8.  he seemed to think he
could put me on some medicine to control it.  I feel better now,
having spoken with him.  He left me on 10 mg. Prednisone until
the tests are all in.  Thank you for you information!
This is a great site!!
Oh, I'm so happy for you! To have a debilitating problem like that and finally get answers and a treatment that works. I know how frustrating it is, I've been sick for 11 years with an autoimmune disease of the bladder and other things like arthritis in my hands, tachycardia and coronary artery spasm, excema and numb feet/weak ankles (I walk with a cane). My ANA is mildly positive in a speckled pattern and I often have an elevated sed rate. I was tested extensively for lupus but as yet no diagnosis or treatment. Well, I can't say no treatment because I have pills for all these problems, so I go on treating the symptoms and hope that not another thing happens. Depression is my biggest enemy as I live with daily pain.
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