Hi all. It’s been a little over two years since I was diagnosed with not only Sjogrens but a ‘lupus like condition’, MGUS and hypersomnia. I haven’t had an appointment that didn’t end up in either a new medication or a dose adjustment of a current medication since diagnosis. I can’t have Plaquenil due to psoriasis so I’m currently on methotrexate, folic acid, a stimulate to keep me awake and an antidepressant to keep me balanced. My question is, does anyone else have multiple diagnoses and how do you sort out what condition is causing what? They are constantly changing or increasing my stimulate so I’m not tired, but what if I’m tired because of the Sjogrens and not the hypersomnia? I ache all the time and I’m told to just take the prescribed pain killer to help with my pains (I can only assume it’s arthritis, they won’t give me a positive yes or no). My bloodwork gets worse and they tell me to ‘sit tight’ because apparently it’s only really back if you’re near death. How does everyone else cope? My strategies don’t seem to be cutting it anymore.
I have many conditions (I started with Sjogren’s 25 years ago - my current rheumy now says it is mixed connective tissue disease). I also have fibromyalgia, stage 3 kidney disease, chronic anemia that I get 2 different infusions for, heart failure, pulmonary hypertension and more. I don’t know your age, but with a team of good doctors and effective medication, I’m still here at age 75!
Have your doctors checked you for low thyroid, anemia and/or fibromyalgia? Each of these can also cause some of the fatigue symptoms you describe.
As far as coping, you can only do what you can do! And as to sorting out what’s causing what, I quit sorting it out and just deal with what’s bothering me that day. If I’m fatigued, I rest; if I’m in pain, in addition to taking my pain meds, I use a heating pad, pain creams, or Salonpas pain relief patches-otherwise, whatever will work that day. I’m fortunate that I’m now retired and have an understanding husband who (in addition to rubbing my back when I need it) also helps around the house with cooking, cleaning and other things that I can no longer do.
@momma2go, I totally get your question. I’ve got multiple autoimmune conditions. The big idea is that I’m on a biologic and leflunomide. I take an nsaid when I’m having a flare up. When weird stuff pops up, we look at managing both the new issue and at overall disease control.
You mentioned pain killers. Do you have joint damage? I’m asking because painkillers can actually backfire and ultimately make a person more sensitive to pain. Something to consider. That’s why avoiding joint damage is the best defense. That pain is harder to manage,