Sometimes when I wake up in the morning and the sun is shining brightly through my white curtains, I just know that it’s going to be a great day.
I stretch long in the bed, rotate my legs left and right, rotate my ankles, reach high in the air toward the ceiling, give out a lion yawn, relax…
Then I start to get up out of bed. Whoops That first step is wobbly and stiff. I reach for the footboard on the bed. Take a few more steps. Ok, getting the flow now.
First, I must negotiate the items collecting dust and cat fur in the hallway on the way to the bathroom. Then, I need to watch out for the kittens underfoot who are learning the hard way to watch out for MY feet. Whether it’s the multiple sclerosis or the rheumatoid arthritis, it doesn’t really matter. The result is that each day starts on wobbly footing for me and only time will tell if it will be a wobbly day. This is the reality of living with autoimmune disease. Only time will tell.
It is not guaranteed that each patient will experience the same symptoms or disabilities. Just as it is not guaranteed that each patient will slowly proceed on that downward slope with the disease or that they can stop it in its tracks with the various medications they take. There are no guarantees. No set-in-stone answers available to the questions of how to deal with the disease. What works for me may not work for you. What works for me today may not work for me tomorrow. I might not be able to function in the afternoon due to overwhelming fatigue which sets in out-of-the-blue. But to do my best each day is all I can do.
What are some of my RA symptoms? I certainly have had, and too frequently still have, the hallmark symptom of rheumatoid arthritis which is morning stiffness that lasts for at least an hour. I also become stiff after sitting for a short while and movement is necessary to loosen up again. As mentioned above, fatigue is an often visitor.
I have experienced swelling and pain in finger joints, wrists, toes and ankles. Before my diagnosis, I had extreme pain in my hands and arms which was neurological in nature stemming from swelling in the wrists. Occasionally fluid will build up in my ankles (which I had not previously known was related to rheumatoid arthritis) and cause a different type of pain and stiffness.
What are some of my MS symptoms? The list of potential multiple sclerosis symptoms is too long to include here in full, so I will only mention symptoms I have experienced more than once. Please know that I have never experienced ALL of these symptoms in a single day: Fatigue. Depression. Word searching. Optic neuritis which for me included loss of color vision and pain on eye movement. Facial pain known as trigeminal neuralgia. Numbness, tingling, and weakness in left hand and left arm. Subtle tremor in right hand and arm. Numbness in all four extremities. Decreased ability to control small or intricate movements including those needed for confident piano playing.
Muscle spasticity in the legs which puts additional strain on my knees at times. Gait abnormalities which I call my Frankenstein walk. Loss of balance, especially with closed eyes. Urinary symptoms including hesitancy, urgency, and urinary tract infections.
Where do the symptoms and treatment overlap? One common aspect of living with RA and MS is movement. The stiffness from RA combined with the lack of fluid movement from MS requires that I MOVE on a regular basis. As long as the arthritis is not in a flare and the MS is not relapsing, I exercise regularly to keep the joints lubricated and the neuromuscular communication lines open.
Both diseases can cause overwhelming fatigue for which rest is required. When the fatigue has become constant for days, I take Provigil which is a drug used off-label for MS-related fatigue. It can be a lifesaver.
To fuel my body with necessary nutrients, I try to eat well and drink plenty of water. I take medications as prescribed (methotrexate, sulfasalazine, copaxone, neurontin, baclofen, wellbutrin, synthroid). I also take supplements (folic acid, omega-3, vitamin D, multivitamin).
Most importantly, I discuss new symptoms with each of my physicians. What I think might be RA-related, such as pain in the knees, may turn out to be MS-related spasticity. The members of my healthcare team (primary care physician, neurologist, rheumatologist, ophthalmologist) send reports to each other after my visits. They keep each other posted on my progress.
But that doesn’t mean that I can’t be my own advocate, learn as much as I can about how the body functions (or doesn’t), and become more in tune with my body so that I can more clearly express my concerns. MS is so ripe with unknowns and elusive symptoms that it’s hard to distinguish between MS vs. Not MS, or RA vs. Not RA.
These are the ways I deal with having multiple autoimmune diseases on a daily basis. How do you handle your disease daily? I’d like to learn more from you. Thanks.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.