u/CBotVLC

I see a lot of posts about fatigue, but my fatigue is only bodily when I have a flareup or vitamin drop. My worst has always been sleepiness- when my symptoms first started it was insane- like I couldn’t keep my eyes open. From the moment I wake up i want to sleep again. Lexapro really helped at points but it wore off so i would have to keep upping to feel alert. Bupropion helps with the brain fog.
This summer i have been sooooo sleepy. Luckily I haven’t had a flare since june. I have started swimming again and going to the turkish sauna after, which usually helps my inflammation.So is this anyone elses’ worst problem besides the usual?
Also- i find the sleepier i am the worse my eyes feel.

So my worst symptom being fatigue, I’m interested in ldn. I spoke to a gp here in spain who was like “we can’t just give that for whatever! There has to be studies etc!” The doctors here don’t seem up to date and the sjogrens assn still hasn’t responded to me. I’m going to the UK in a few weeks; would it be better to order there and pickup at a local pharma? It. Looks expensive but i really want to try because my rheumo was like “well if hydroxo doesn’t work there’s nothing else to help!”

Alguien va al show en vlc mañana? Nadie quiere venir conmigo en ese calor y voy a llegar a las 17/1730. Any buddies?

So, i thought that with summer my symptoms were lighter, and i went off doloquine because there was no change and started a small small dose of wegovy and was feeling decent. Now we are in a heat wave and my joints are swelling and my chest hurts. The worst is the pain which has happened lile 3 times recently. The kind of all over body pain where your bones hurt, muscles hurt; it’s intense and nothing reallly helps. I’m looking for a new rheumo after the last told me to take magnesium for fatigue. I need to see about this pain. Any tips? Nothing helps- hot bath, ibprofen, paracetemol, nada.

I will talk with doctor tomorrow, but the farmacista said that they only have naltrexone 50mg. How is ldn dispensed in spain; anyone know?

I went for my follow up today after getting my eye test and lip biopsy, all putting me into a confirmation because i was negative for the antibody.

This doctor didn’t actually bring up sjogrens the last visit- i did and pushed for tests. So today shes like, “yeah this looks like sjogrens, but there’s no treatment.”

Etc

So i mentioned i’ve had more flares recently and that hcq was not doing anything but that i hadn’t reached 400mg dose yet as it’s so hard on my stomach. I said that i had a terrible month; i’ve been so tired and miserable.

I mentioned that a doctor had prescribed me dacortín (prednisone) to recoup because i was so sick i could barely lift my arms- i had repeated taking this in 10mg doses for 2-3 days when i get this bad. So this weekend i took 10mg sat and sunday and by this morning was able to lift weights again without feeling like my arms were actual weights.

She said that prednisone doesn’t help fatigue and has too many side effects, then suggested that i take magnesium and triptofano along with supervitamins.

I’ve already done that. Sometimes, my tiredness is related to my iron or d dropping but i know the difference.

After all that and meeting the diagnosis points for sjogrens and her saying that, she just wrote PROBABLE sjogrens in the informe which is annoying because i need to tell my gp a diagnosis.

I’m feeling skeptical of this rheumo because it doesn’t sound like she has much background on this and she looks about 30.

Should i seek out another rheumo opinion for treatment options?

I live in spain and they are big on holistic medicine- you literally have to go to the er just to get cold medicine that’s not made from sunflowers.