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desperate for a diagnosis! chronic pain/ fatigue
by Breanne1, Sep 29, 2009 09:41PM
Hi, I have been to a lot of doctors and no one can get to the bottom of my symptoms. Any possible diagnoses, suggestions, or help of any kind would be much appreciated!
Background
I'm 17 now, and when I was ten I was diagnosed with Addison's Disease (autoimmune adrenal insuficiency) and Hashimoto's thyroiditis after a long period without diagnosis. Two years later I was forced to be homeschooled because of widespread pain and fatigue that was attributed to fibromyalgia (today im not so sure). Eventually that subsided to the point where I could manage school, and I became accustomed to living in constant pain. So, about four years later (and two years ago) my pain in my hips and back and neck and fatigue began to heighten. I had hip x-rays done over a year ago and although that doctor did not see anything, a new doctor says he sees some calcification on the right joint.
Recent
It has gotten to the point where I can no longer live my normal life. Just going to school is extremely painful as well as tiring. I cannot stand for more than 20 minutes or walk for more than 30. Walking is slow and very painful. Although I have some generalized pain it is much more intense in my hips (especially when weight is placed) lower back, and neck/shoulders. I normally do not have swelling, redness or heat from the painful areas. The pain get worse with activity and can be significantly worse for upto 4 days after any physical event such as walking around the mall. This is one of the reasons I do not think it is fibromyalgia, because from what I have read fibromyalgia improves with exercise. Some of my joints are hypermobile and pop out of the socket and make loud noises. I also tried regular exercise when the pain was really bad but not terrible like now-- it did not improve. Other symptoms I have include feeling like I cannot get a satisfying breath, and yawning to ease the discomfort (asthma ruled out). When I have a strong espisode I feel extremely fatigued, foggy, and detached from my environment. My heart rate is always fast, but seems to get faster, yet weaker during these episodes. A cardiologist recently diagnosed me with nuerocardigenial syncope (hyper-active fainting reflex) although I have only fainted twice, but I do get dizziness and low blood pressure frequently.
Labs
I have a positive ANA test of 1:160 finely speckled. I have been told I do not have lupus, and that it can be attributed to my other treated autoimmune disorders.
Elevated antithyroglubin, but my t3, t3, and tsh levels are fine.
Extremely elavated plasma renin about 6 months ago, but has reduced to high-normal after increasing my florinef (salt).
positive DQ2 which led to gluten intolerance/celiac disease diagnosis-- no significant improvement although I am still following a strict diet.
So if anyone has ideas of any kind I would appreciate it so much. I have gone to so many doctors but have not gotten much help or diagnoses. I have a feeling that it is something autoimmune related because that coincides with my other major problems (addisons, thyroid, celiac) but anything is possible at this point! again thank you for reading this (sorry this was so long--im just ready for relief!) and thank you in advance for any help
Background
I'm 17 now, and when I was ten I was diagnosed with Addison's Disease (autoimmune adrenal insuficiency) and Hashimoto's thyroiditis after a long period without diagnosis. Two years later I was forced to be homeschooled because of widespread pain and fatigue that was attributed to fibromyalgia (today im not so sure). Eventually that subsided to the point where I could manage school, and I became accustomed to living in constant pain. So, about four years later (and two years ago) my pain in my hips and back and neck and fatigue began to heighten. I had hip x-rays done over a year ago and although that doctor did not see anything, a new doctor says he sees some calcification on the right joint.
Recent
It has gotten to the point where I can no longer live my normal life. Just going to school is extremely painful as well as tiring. I cannot stand for more than 20 minutes or walk for more than 30. Walking is slow and very painful. Although I have some generalized pain it is much more intense in my hips (especially when weight is placed) lower back, and neck/shoulders. I normally do not have swelling, redness or heat from the painful areas. The pain get worse with activity and can be significantly worse for upto 4 days after any physical event such as walking around the mall. This is one of the reasons I do not think it is fibromyalgia, because from what I have read fibromyalgia improves with exercise. Some of my joints are hypermobile and pop out of the socket and make loud noises. I also tried regular exercise when the pain was really bad but not terrible like now-- it did not improve. Other symptoms I have include feeling like I cannot get a satisfying breath, and yawning to ease the discomfort (asthma ruled out). When I have a strong espisode I feel extremely fatigued, foggy, and detached from my environment. My heart rate is always fast, but seems to get faster, yet weaker during these episodes. A cardiologist recently diagnosed me with nuerocardigenial syncope (hyper-active fainting reflex) although I have only fainted twice, but I do get dizziness and low blood pressure frequently.
Labs
I have a positive ANA test of 1:160 finely speckled. I have been told I do not have lupus, and that it can be attributed to my other treated autoimmune disorders.
Elevated antithyroglubin, but my t3, t3, and tsh levels are fine.
Extremely elavated plasma renin about 6 months ago, but has reduced to high-normal after increasing my florinef (salt).
positive DQ2 which led to gluten intolerance/celiac disease diagnosis-- no significant improvement although I am still following a strict diet.
So if anyone has ideas of any kind I would appreciate it so much. I have gone to so many doctors but have not gotten much help or diagnoses. I have a feeling that it is something autoimmune related because that coincides with my other major problems (addisons, thyroid, celiac) but anything is possible at this point! again thank you for reading this (sorry this was so long--im just ready for relief!) and thank you in advance for any help
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