I have an appointment with my primary care doctor next Friday and I'm seeing my new rheumatologist the Friday after that. And.... Huge news... My insurance referral came through yesterday for my spinal tap. That's coming up next Monday. Hopefully they'll have the results hot off the presses for my new rheumatologist! YAY! Things are starting to come together. That also gives me a full week to recover from the procedure before I start my new job.
With these important appointments in mind I did a little tweaking to my list. Previously I had two categories on a Word document.
1) What I've Tried
2) Current Symptoms
Now I broke that into three categories.
1) What I've Tried
2) Currently Using
3) Current Symptoms
All of these sections have grown since May. Here are my current symptoms:
Current Symptoms:
- Reduced overall muscle strength, especially right side of body
- General Fatigue (feel exhausted most of the time, especially after activity)
- Muscle shaking (arms & legs) after short exertion (like 15 minutes of light gardening) Stops with rest after about an hour
- Inability to have an orgasm (muscles can’t sustain contraction for period of time.)
- Joint pain in feet (especially right foot, ankle and 4 smaller toes. Right ankle & toe swelling.), in both hands (especially right hand & fingers. Hands feel hot) lower back, mid back, neck (that sometimes wakes me during the night), both knees, right hip and right shoulder pain
- Muscle spasms (thighs, calves, arms and stomach mostly)
- Dizziness (especially with movement)
- Peripheral neuropathy symptoms (especially in legs, arms and lips) numbness, tingling, feels like nerves vibrating or full of bees (currently taking Lyrica for this.)
- Both hands swollen in the morning (Sleeping in compression gloves helps.)
- Feeling of fullness, pressure in right ear (ETD)
- Painful body joint gelling in the morning and after sitting
- Forearm burn and itching (nerve itch? Ibuprofen helps)
- Increase temperature sensitivity in forearms, hands, shins & feet
- Frequent urination, especially at night (0-8 x per night. Improved temporarily with Lyrica.)
- Dry mouth, especially at night
- Ulcers on tongue & roof of mouth (Responds to salt water rinses)
- Sore throat off and on (like I feel like I’m getting sick, but I don’t)
- Cracking of joints (neck, hands, feet, back, knees)
- Occasional “brain fog” (like I have the flu)
- Toes on right foot appear to be “drifting” away from big toe & swollen
- Ankle swelling on right foot after minor activity
My jacked up feet after 15 minutes of light gardening.
My toes and right ankle puffed right up.
Yes, it hurt.
My toes and right ankle puffed right up.
Yes, it hurt.
The spinal tap will hopefully help sort out which of these is being caused by the RA and which (if any) are from something else. That's why it's so important. It is possible that all of this is from RA. Or it could be comorbid with MS, ALS, or something else completely.
My muscle weakness is still progressing. It's even affecting me sexually now, which is a huge issue. I'm hopeful that my new rheumatologist can find a drug that will help and I can regain some strength and mobility.
In the meantime, Meg will be my new "adventure buddy" and I'll just do what I can, for as long as I can.
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