MCTD, Fibromyalgia, Reynauds

I actually was having high blood pressure, not low.
Maybe the Gabapentin was working the opposite on me.
Anyway,I’m off Gabapentin now since my surgery.

Good you are recovering!

I’m not claiming to know much. But I do find it odd that more people don’t KNOW gaba has an effect on blood pressure.

Dr’s don’t mention it. SOMETIMES they mention the grogginess and fatigue but they never mention the blood pressure affects.

So glad you are improving!

I sort of posted with lurkers in mind (people reading only) and not directed specifically to single you out. But your post INSPIRED reply. 👍

Far from it. I’m learning a lot here!

@boconn89 , It's amazing how we figure out ways to make things work for us on our own! I'm glad you found a way! May it continue to always work as long as you need it!

Hi, my heart hurts for you.

I'm new here too and thought I'd share a little of my story. It's long, but maybe something will help you.

I started feeling generally unwell in my mid-20s (low grade fever, chills in the middle of summer, tiredness, low blood pressure that left me dizzy and panicky) but my doctor said it was nothing.

In late 30s, I was diagnosed with Reynaud's but told it's pretty common in young, slender women.
I also started having swelling, pain throughout my body, crushing fatigue, and being unable to sleep. I was diagnosed with fibromyalgia and referred to a rheumatologist. I was already on Cymbalta (duloxetine) for depression but it didn't touch my physical symptoms. Went on 600 mg gabapentin 2x/day and 900 MG at night, methocarbamol for daytime and tizanadine at bedtime (both muscle relaxants), and my doctor's "fibromyalgia protocol" (recommended supplements, not sold by her), including calcium, vitamin D, Co-Q10, turmeric, and magnesium. The gabapentin made me sleepy but relieved my pain and the daytime sleepiness went away with time (still have fatigue). I'm down to 600 MG gabapentin at night, take benadryl to sleep, and still mostly follow the fibro protocol.

In late 40s, started having joint pain that woke me up at night and was diagnosed with MCTD. I'm on hydroxychloroquine, methotrexate, and Orencia. Most joints are a lot better. Things I'd accepted for so long (bruised-looking eyelids, "fat" fingers) also went away with treatment. I still have symptoms that change often (rashes, mouth sores, trigeminal nerve pain, etc.) and blame them all on the MCTD, but don't really know the cause.

Did an elimination diet and felt great but basically stopped eating because nothing appealed after a while. When feeling really bad, I cut out caffeine, sugar, and white bread, and up my servings of mostly organic fruits and vegetables. (I'm vegan and eat a lot of fruit and veg anyway).

A bodywork therapist helped me figure out the best way for me to sleep. Sleep quality is better and I have more energy.

Stress makes everything worse.

Something will work for you. Keep searching. Reach out if you need to talk.

Do you use a Cpap? or a asvpap machine made by Philips Respironics ?
If yes I placed a ventilator filter between the machine and me . The filter turned gray over night. Now I have MCTD Reynaud's abnormsl Vitiligo Rheumatoid Artritis Psoriasis and Auto Immune deficiency to Cancer Yeast Fungal and Viral infections and possible Hemolytic Anemia. Test continue
Arthritis

Do you use a Cpap? or a asvpap machine made by Philips Respironics ?
If yes I placed a ventilator filter between the machine and me . The filter turned gray over night. Now I have MCTD Reynaud's abnormsl Vitiligo Rheumatoid Artritis Psoriasis and Auto Immune deficiency to Cancer Yeast Fungal and Viral infections and possible Hemolytic Anemia. And more Test to continue .

Good lord, it's crazy to read about ya'll struggles because they are so familiar. This is really helpful. Thank you for sharing.

Never do cold Turkey on Duloxetine, very dangerous, people have ended up with seizures and suicide attempts. Took me almost a year to get off, by opening the capsules and taking out 5 beads at a time, . I had the same side effects as you, brain zaps and fog, jerking movements.
Doctors just don’t understand this medication, telling you it’s safe, until I told mine to read the monograph. She was actually surprised to see what it contained.
I wish you luck, just go very slow

I have had fibromyalgia since 2015. I was on several meds as my body deteriorated and even tried homeopathic remedies. I look back and don’t know how I endured the pain. I ended up with prednisone as my solution. It doesn’t work for everyone but normalcy returned for me. Over the years I have titrated down and even tried gabapantin, which had terrible side effects. My dose is 5mg and the majority of the pain is gone and I just have to deal with the little tentacle quirks of Fibro. I hope you find the solution that works for you.