I have been diagnosed with Undifferentiated Connective Tissue Disease and Hypothyroidism. In the last couple of months I have developed a horrible itch, mainly on my arms and thighs, but it sometimes pops up elsewhere. I have also experienced muscle atrophy on my right arm. On 4th of July weekend we had a barbecue for family and friends and the night before I was making potato salad. As I was peeling and cutting the potatoes and veggies, my right arm basically refused to cooperate. It wasn't pain, it was just not responding to what I was asking it to do. I had to put the knife down and walk away for a while and after a while I was able to resume my task. I have also noticed that I don't have the strength in my arms and hands I used to have. It is increasingly difficult to open jars, again not because of pain, as in arthritis, but more just weakness.
I have asked my rheumatologist about the itching, the muscle weakness and the atrophy, but she basically shrugs it off. Frustration has led me to research the symptoms myself and try to some to ome kind of understanding of what is going on. Then the other night I happened to be watching a show called Dr. G - Medical Examiner, which follows an ME on some of her more interesting/exotic cases, and what should be on there but a woman with Lupus who had horrible itching on her arms and legs. Thinking it was an allergy, she self-medicated with an antihistamine. She took a huge amount, but it didn't help the itching. Her brother found her nearly comatose and rushed her to the hospital where she had a heart attack and died. During the autopsy it was discovered that the woman had vasculitis and the itching was from the white blood cells attacking her blood vessels, in particular the ones in her aorta and heart. The medical examiner said it was a complication of SLE, and that although it is rare for vasculitis to attack the heart, it is fairly common for vasculitis to occur with auto-immune disease.
Why would my rheumy not check for this? I know I may very well be being a bit of an alarmist, but I take my health issues very seriously and I hate the dismissive attitude that I have seen with so many doctors. It seems that some are getting lazier by the day! Why would she not even mention the possibility? It was at my insistence that they ran thyroid tests and discovered that I am hypothyroidal. I had been trying to get that diagnosed for years and I finally had to INSIST that they test me. ARRRRGGGHHH!
Sorry you are not feeling well. Stinks doesn't it!
I cannot speak to your awful itching, but I do understand the feeling of weakness. Hope you get to the bottom things soon.
Unfortunately not all rheumatologists are as well versed in autoimmune diseases as we would like them to be. Not all are experienced in the vast complexities these types of diseases present. No two patients are alike. Each one can be like unraveling a mystery.
If you feel your doctor is not paying attention to your symptoms, explain that to her. You must have good communication with your doctor in order to get the best treatment. It has to be a negotiation of what is best for you. Your quality of life should be important to your doctor. And you have to be a good advocate for yourself.
If you feel important symptoms are being dismissed, even after attempting to convey the importance of them to YOU, then perhaps you need to find a doctor with whom you would be more comfortable. Honestly, it is a relationship that you have to feel "safe" within. People with chronic illnesses spend a great deal of time with their doctors, like it or not, so it is very important that it be a good relationship.
It's all so hard at times, but hang in there. Keep trying. I hope you get some better answers soon.
I have the itching as well and my rheumatologist (who is a world renowned Lupus specialist) blew it off too. I'm hoping he is just concentrating on the major issues and getting a proper diagnosis (classified as unspecified connective tissue disease but leaning towards Lupus &/or RA) and will deal with this later. I am also getting a crawling sensation like there are bugs on me when there clearly are not. I've thought of vasculitis or some kind of nerve damage. Don't blame you for being concerned. Let me know and I will do the same if either hears anything more from our doctors on this.
Thanks for your input. I am so frustrated. And trying to explain it to family is like trying to explain rocket science to Gilligan. All I get are blank stares and yesterday my daughter told me "Every time I talk to you, you think you have something different." I cannot make any of them understand it is all related. All part of the same problem. Grrrr. Sometimes I think maybe I am a big old hypochondriac like they think, then I remember all the test results. My husband has been wanting me to try this doctor that a friend of his has been seeing. He's a Lupus researcher and hubby's friend thinks he is the second coming, so I may change doctors AGAIN. Yuk.
I totally understand where you are coming from as far as family and friends. I finally got mine to understand, when they visited me in the hospital and the DR was in the room. HE told them what was going on, and that is was very serious. Boy did they do a 180. I am concerned when you mention all of the itching you are having...that is a symptom of kidney problems. I have that and muscle weekness, like rubbery legs. Have you had it checked? If not you should ask your dr to run some creatinine and BUN test just to make sure.
You are not a hypo, and don't ever feel that way. Your family will come around. Just worry about getting better, that is what is truely important. It is hard for people to think we are sick, when outside we look ok at the beginning. I will pray for you and hope that this new dr will give you some hope.
I have problems with intense itchiness during flares of autoimmune pancreatitis (right now in a flare). It usually happens when the bilirubin is elevated, bile salts rise into the skin which causes horrific itching. It's a snapping/tingling sensation darting all over the body and feels like I'm being attacked by a hoard of blackflies - no exaggeration. High dose antihistamines takes the edge off but only for an hour or so. During the first itching attack that jolted me awake during the night, I was in such distress that I took 2 mg hydromorphone (leftover from a neck disc herniation) - and it seemed to create an effective barrier to most of the itch. My gp said if that works, go ahead and use it (sparingly), which I'm doing again this time around. Not thrilled about using a narcotic, even small dose, but anything is better than the hideous itch. Obviously not advisable for everyone and every medical condition, check with your dr.
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