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. (!)
Last edited by supersleuth; 06-07-2013 at 07:47 PM.
Oh my dear - my heart goes out to you. You have suffered a long time with all this! (((((hugs)))))
You will definitely find good information and lots of support here. Not all of us have the same symptoms, of course, but you'll probably find somebody who has experienced each of your particular issues one by one and can speak knowledgeably about them.
You know, antidepressants are not at all a bad idea, many times. This disease affects our brains as well as our bodies, and depression is often the result. There is no reason not to treat that symptom! Many people have gotten great relief, particularly from a drug like Cymbalta which works on body pain as well as the neurological symptoms that result in depression. Of course, being sick all the time is also just DEPRESSING, so it's a double-whammie - the neurological effects of the disease plus the emotional effects of having to live with it. If your doctor thinks it is called for, it might be worth giving it a try.
In any case, it sounds like you need to work out a new care routine because you are not feeling good at all right now. Don't give up hope! Seems like this disease is one long process of trying one medication routine after another, looking for the right balance. You might be in a really rough patch right now - hopefully things can be adjusted so you get more relief.
I am not sure why Doxycycline would make you feel better, unless you have some underlying infection - it's an antibiotic, right? Odd...maybe you DO have some kind of infection that is dragging you down. My husband had a low-grade sinus infection (he had lots of cysts in there) for years and when he finally had surgery and knocked out the infection, all sorts of other health issues went away. Something to maybe ask your doc about, anyway...not that it's a cure, but especially if you have lots of dryness (have you been tested for Sjogren's?) it's a possibility.
I have heard of Plaquenil causing some hair loss, but generally not a lot. I am on Plaq and Mtx and did have quite a bit of hair loss - but as my body is adjusting to the meds, the hair is coming back pretty well. I also take biotin, which helps.
The issue about birth defects and Mtx is a tough one...though it seems a little paternalistic to me that your doc is refusing those treatment options and assuming you are not going to be responsible about birth control. You really, really don't want to be pregnant while on mtx...but there are other options - he shouldn't just cut you off. Obviously you need SOME other medication options!
It is so hard to care for a young family even when you're healthy - it must be extra-taxing when you feel so bad, and worried about your kids' health to boot. I know lots of us moms and dads on here worry quite a bit about what we might have passed on to our beloved children...but USUALLY they are okay. This stuff is NOT directly genetic. Yes, there seems to be some genetic component to the predisposition for autoimmune diseases, but it's not a simple equation, and at least not LIKELY your kids will have the same issues you do. Little kids get LOTS of weird rashes...it was probably nothing. But I know it's hard to keep your mind from going there....
I hope some of that helps. I am not a doctor, and i am just speaking from my own experience and what I have learned in my own research.
Please know that you are not alone, and we are here to support you!
Have you been tested for Lyme disease? The fact that an antibiotic made you feel better is what makes me ask that question. Lyme mimics AI diseases and is often missed. You may want to ask your doctor about this.
as for the rest, what was said above is ABSOLUTELY correct. Just like AI diseases attack the rest of our body it can attack te parts of our brain that affects our moods. Many of us have to go on antidepressants or anti anxiety meds due to the disease. It is nothing to be ashamed of. It might be something you want to talk to your doctor about.
I also understand the worry over your daughter. I have been dealing with that for years but you need to keep in mind that stress and the "what if's" will only make you more ill. You didn't do anything to make yourself sick so it is not like you could have prevented this. It isn't your fault. Don't let the "what if" become the thing that keeps you so sick that you can't live. As my mom would say, "don't borrow trouble". Keep an eye on her but remember that most Lupud symptoms are things that normal people get from normal diseases or activities. That is why it is so hard to diagnose. It's going to be ok
we are glad to have you with us and try to relax today. It will make things better
Success is not final, failure is not fatal: it is the courage to continue that counts.