Is it or isn't it?

Back in April of last year I was diagnosed with Rheumatoid Arthritis (RA). But recently I've started doubting that diagnosis. I think the symptoms of RA mirrored what could have really been Metabolic Myopathy.

Symptoms of RA include:

• Fatigue
• Pain
• Swelling
• Redness
• Joint Stiffness (especially in the morning or when getting up after sitting a long time)
• Joint Warmth
• Loss of range of motion
• Both sides of the body usually affected the same
• Anemia

The symptoms of the type of Metabolic Myopathy that I have (Primary Coenzyme Q10 Deficiency):

• Fatigue
• Weakness
• Muscle spasms (dystonia)
• Poor muscle tone
• Progressive muscle stiffness
• Abnormal eye movements
• Some other serious stuff I don't have like seizures and kidney failure

What led my Rheumatologist to think I had RA was an abnormal MRI on my right hand (some water retention and swelling) and some abnormal labs. But now I'm wondering if that also couldn't have been MM? 

My muscles have been hugely affected lately by the bronchitis I came down with. Something that my Neurologist said could happen. Last night my hands hurt so much it woke me up multiple times. My hands hurting is one of the first symptoms of RA that I had. But when I thought about it I'm not sure it was a joint pain hurt. It felt more like it could be the muscles in my hands.

The same thing happens to the bottoms of my feet. It can feel like I've been walking all day over rocks and in reality I hardly walked at all. It's very strange. Another major symptom for me is my peripheral neuropathy. As far as I can tell MM can cause that. RA does not. I always assumed it was a side effect from my TB treatment, but now I'm not so sure. Of course I could just also have both (gag).

I'll have to talk to my doctors about all this and see what they think. I'll be curious of the hand and foot pain get better when I'm 100% no longer buggy. 

Nature Cure

Where my husband and I live is packed with beautiful nature and accessible trails. The weather has been so beautiful that the other day we packed my wheelchair "Ariel" into the car and headed out to our favorite spot. It's a beautiful garden area nestled next to an Oak Tree forest full of every kind of oak you can imagine.

Being at the ocean and in the forest touching nature is completely detoxing for me. It brings me back to center and eases my mind like little else can. On our walk I even managed to hoist myself up a little bit so I could fully sit in my favorite leafy Oak. It was wonderful.

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.