Doctors are giving up… maybe you will know what is wrong with me.
About five months ago I was in a car accident. I healed FINE. Then, in July I woke up in great discomfort, and noticeably swollen. Espeically my calves. My Primary Care Physician drained blood, checked my urine, did a Doppler of both legs, and an Echocardiogram. When all those tests came back with nothing, my PCP COMPLETELY LOST INTEREST…and her staff became very frustrated with all of my calls.
I then went to an Arthritis Doctor. He took blood, x-rays of my chest and knees, and DRAINED both of my knees. I naively thought he was going to take my case on as a personal interest and try hard to get to the root of the problem. When I showed up for my next visit, I realized I was wrong. He actually was irritated when I showed him the research I printed on MY symptoms…(a lot from this site!) He told me he narrowed it down to two diseases, Sarcoidosis or Psoriatic Arthritis. He sent me for a CT scan of my chest which again came back fine.
The PAIN has gotten worse. In the beginning, I was not in “pain” I was just extremely uncomfortable with the extra weight and tightness of my skin. My body aches all over. When I wake-up in the morning and take my first steps, I feel like I ran a marathon –barefoot! My hands are very sore and hard to close. Last week, I started a steroid pack which temporarily helped the inflammation and decreasing the pain significantl. But when the pack finished, so did the relief!
A few days ago I went to the ER… and they sent me home with a script for a urinary track infection (which I had no symptoms for!).
I’m in the process of changing my PCP and starting fresh. As days turn into months my hope and spirit are slowly dying. I find it harder and harder with each passing day to find my strength. I used to be a strong, driven, young woman…. But I can’t find that part of me. It was wonderful when the steroids and draining decreased my swelling. My body literally returned home, and I was elated. But, it only put me in an emotional hole! Cause the swelling came back so fast. I am wearing my friends and family with my state of depression and can only hope that when I do come out of this mess I am not left alone.
• Swelling throughout entire body…significantly in legs, hands, face
• Pain in hands and feet
• Ache in body
• Green urine (at times)
• Numbness and tingling sensation in hands and feet
Sounds like it could be sudden onset rheumatoid arthritis. I empathize with your situation! 5 years ago I had strep throat for the first time at 25. About 5-6 weeks later I noticed my hands were tingling and felt very tight. I thought it was from typing at work. Within a week I was so swollen and stiff I felt like a 90 year old. I went to my pcp and they too were baffled and irritated by my whining. The finally decided that I had rheumatic fever and pumped me full of steroids until the "reaction" passed. It never passed. After 9 months and a 50 lb weight gain from the ridiculous amounts of steroids, they finally sent me to a rheumatologist. He too couldn't figure out what was wrong with me. I had gotten so fat from all the steroids that he couldn't tell I was swollen. He tried to tell me that I was just depressed! I WAS depressed, because I was sick and no one would help me. Finally, a friend of mine recommended a different rheumatologist and he diagnosed me on the first visit. Your symptoms sound similar to mine, hands and feet so swollen that they tingle from the nerves being blocked. Is the swelling in your face around your jaw joint? If you notice that your jaw feels stiff or painful that is a big marker for RA. I'm not a doctor and you may have something totally different. You need to find a doctor that WILL listen. You are in pain and you need to know why. Even if there is no cure, it is better to know what is wrong and face it than be miserable with false hope.
Hi Sweetie--regret you are having a difficult time getting medical care and treatment.
Has the Rheumie and/or PCP ordered an ANA, ANCA, RA, and included thyroid tests (TSH, Free T3s and Free T4s) ?
If they suspected Sarcoid then that is a validation of your symptoms. A chest xray can rule that out as well. But the above tests need to be done.
I agree, ask around who your friends see for a new physician referral and/or go doctor shopping so you can get a medical specialist to commit to finding the cause.
I too have the edema and it is painful walking and opening/closing fingers. My cause hasn't been found yet either. I have full body inflammation including in my eye which affects vision. My doc told me what all the possible causes could be and sarcoid was one of them. She is committed to finding it. Even with the best doc in the world, it can take time. Your PCP doesn't have the expertise to really help you so I recommend an internist or a DO. Once the tests narrow down what the possible cause is then you'll probably be referred to the physician in that scope.
hi i have been having the same problems been going to a rhum.for a year she is great would not give up inflamation all over tryed everything nothing worked started taking 200 mg of celabrex 3 weeks ago miracle drug worked i have a autoimmune was just diagnoised as scleroderma it took a long time to find this out had fluid swealing all over pain tightness of skin pins needles numbness along with this comes ra ,rynads deasies, so u may want to bring this up to your doctor i havent found much on internet did look in a med book doesnt say a lot about it except my body is attacking itself and a rare condition med book is old though i hope they find what is wrong i know how u feel docs get frusterated because they are stumped