New Here. Mother of Two. Desperate for Answers...looking for support.
Hi all. I have been trying to hunt down a place online where I can find answers to my illness, and others who understand what I am going through. I started getting sick about 8 years ago. I really started getting ill in 2008. It started with being freezing cold all the time and being unable to lose weight. My memory was starting to go and I had awful mind fog.
I soon discovered I had thyroid disease. Though it was treated, I continued having awful flu like fatigue and hand pain. I used to make my husband rub my hands in the morning, but I could still get out of bed okay. As time went on, I started getting more and more fatigued, suffering from lung pain, and got to the point that when I got up in the morning, I felt like I could sleep 12 more hours. My feet hurt so much when I would get out of bed. My hands would start to ache before it would rain. I also started getting a very dry throat before it would rain along with my other symptoms. I would wake up a few hours with my dry hacking cough that would with certainty be heralding rain. Throat so dry I would choke if I didn't have a glass of water by the bed. In addition I also suffer from stomach aches, though I don't have Chrons, and I don't have Celiac disease. All they found in my Colonoscopy were inflammatory cells. Some times when I get up in the morning, my kidneys hurt. They feel better after I go to the bathroom.
At first I thought it was related to my breast implants, so I had them removed. I researched my symptoms and decided I should see a rheumatologist around the same time.
The first one I saw laughed at me.
He told me I was fine, he saw no inflammation, and told me maybe I had Fibromyalgia. All this with his amazing x-ray vision. I left his office in tears. I continued to suffer until 2010, when I got pregnant with my daughter. I did not improve with my pregnancy, but they finally ran many tests during my pregnancy and referred me to a good rheumatologist at U of M Hospital. Though all of my tests were negative, they did a hand ultrasound and discovered symmetrical joint damage in both hands. Thank God, or I would have thought I was insane. My symptoms were always worse with weather. I could predict rain or snow with 99% accuracy-- sometimes days before it rained. These days, I get sicker more often, rain or shine. My Rheumatologist does not think I have Sjogrens, Lupus, or lung involvement, but I certainly get a cough, I get the dry throat, and I get lung pain.
As I thought back to my childhood, I remembered that I used to hack all through the night and used to end up in the hospital all the time because of it. I spent a lot of my childhood on Prednisone. It made me feel great. They thought I had asthma, but as I look back, I think I had something else. They never heard wheezing, but I was short of breath. What do I have? I don't know. All I know is that it is getting harder to diaper my children, 6 months and 2 years old. It is hard to lift them, it is hard to get though the day, and I'm tired of popping Ibuprofen like candy.
I started Plaquenil and Lo Loestrin in March, I stopped nursing so that I could take meds to be able to care for my children. In May, my hair started falling out by the handfuls. Is it the Plaquenil? Is it the Birth Control? I don't know. All I know is that I can't bear to be bald AND sick. I am also having a hard time sleeping. I'm at my wits end. The only medication that has worked for me was a two week stint with Doxycycline. I took it quite by accident, and it works wonders. My Rheumatologist won't give me Minocycline or Methotextrate until I am on birth control pills or am sterile. I cannot tolerate birth control pills. I stopped taking the Lo loestrin which was actually for horrific cramps because I thought it might be causing my dizziness, hair loss and insomnia.
What's a girl to do huh? I feel for people suffering from autoimmune disease. We look mostly fine on the outside and inside, we are so sick. Now I worry for my little 2.5 year old, who last summer, while outside, suddenly developed a wicked butterfly rash. I fear that she might have Lupus. Lupus is extremely rare in toddlers. She would literally be the 1%. My poor little girl suffers from severe speech delay, and other issues. It is difficult to summon up the daily stamina to care for her and I worry that my illness caused her disorders. There was a Danish Study linking mothers with Autoimmune Disease with Autism. There is so much on my mind. My health. My daughter. Her future, my future. My heart goes out to all of us suffering. It is also hard on our spouses, to deal with a loved one with no energy and a million doc visits. Perhaps no one will read this lengthy excerpt, but at least it made me feel good to write it, but I do hope someone reads this and is kind enough to say hello, or to pass along their wisdom. I hope to find the support here, that has otherwise proved to be elusive. My last rheumy visit, I burst into tears. My doc suggested antidepressants. All I need is another pill. (!)