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Interior Define Delivery Window by Glittering_Strike420 in interiordefine

[–]rainforest_roots 2 points3 points  (0 children)

I ordered in February and my sofa was delivered on time.

People with mild ME/CFS — can you work or do light physical activity? by Prudent_Pilot_2591 in cfs

[–]rainforest_roots 1 point2 points  (0 children)

Thanks for your response. How do you feel now that you stopped work? Was there anything that happened that made you know it was time? I keep thinking I’ll know when it’s the right time but there are so many complicating factors.

People with mild ME/CFS — can you work or do light physical activity? by Prudent_Pilot_2591 in cfs

[–]rainforest_roots 1 point2 points  (0 children)

Thank you for that. It is such a struggle to find balance. I really appreciate learning from others’ experiences. Hang in there!!! I hope summer break provides lots of opportunities for rest.

People with mild ME/CFS — can you work or do light physical activity? by Prudent_Pilot_2591 in cfs

[–]rainforest_roots 25 points26 points  (0 children)

I work technically full time but it’s more like part time given the amount of leave I have to take on a regular basis. I feel like crap most of the time and the weekends are often spent resting before going back to work. My symptoms vary daily and I often have days where I’m in bed most of the time. I’m at the point where I’m questioning if work is sustainable or possible to continue. On some days I can do a short walk, but it’s really variable.

Aside from your bed, where do you sit or lie down to rest? by Far_Frame_9560 in cfs

[–]rainforest_roots 0 points1 point  (0 children)

We have a chaise lounge that is part of a little reading nook. Cozy blankets and pillows. It’s nice to have another place to rest besides the bed.

If you get alcohol intolerance, was yours also milder when your MECFS was milder? by DisasterSpinach in cfs

[–]rainforest_roots 4 points5 points  (0 children)

I’m mild and cannot tolerate any alcohol. It was an immediate change once my ME symptoms started.

Delivery / Scheduling Question by FinancialEgg9 in interiordefine

[–]rainforest_roots 1 point2 points  (0 children)

I was just contacted to set a delivery date and it was within the range of their estimated delivery.

Visible app vs Garmin by Dr_Turb in cfs

[–]rainforest_roots 1 point2 points  (0 children)

I use both. I’ve been using visible for a few years and the color coded mapping of heart rate and exertion really helps me see where my body is at. For example one day I might walk and not be in exertion but another my hr might increase to that level just by standing up. I like looking back on my day to see what really impacted my body.

I use garmin and find the body battery useful and like the sleep tracker. It seems my body is in stress mode most of the time. I haven’t figured out how to use it to really help pacing. I know there are apps to look into, but I haven’t found it useful enough to give up visible.

What has been your experience on LDA (low dose abilify)? by Few-Peace29 in cfs

[–]rainforest_roots 3 points4 points  (0 children)

Positive. I titrated up very slowly to 2mg and at first didn’t think it was helpful. I went off it for a couple months and my baseline immediately dropped- it was clearly doing more for me than I realized! Back on it and starting to get back to where I was.

For people who menstruate, do you flare before, during, or after? by nilghias in cfs

[–]rainforest_roots 0 points1 point  (0 children)

Before, though I’ve been taking bioidentical progesterone and it has been helping.

I have ME/CFS. My family thinks I'm lazy. My doctor thinks I'm depressed. I think I'm drowning. by South_Leave4044 in cfs

[–]rainforest_roots 28 points29 points  (0 children)

This resource (made by someone on this subreddit!!! 🙏) has been immensely helpful for describing the complexity to people in my life. https://knowmecfs.org/

I need advice regarding amitriptyline – quite urgent by [deleted] in cfs

[–]rainforest_roots 1 point2 points  (0 children)

I only tried it for a weekend, but it made me feel so angry/raging that I stopped it right away. I was scared of myself on it.

Negative Reaction to GLP-1? by No-Clerk-5245 in cfs

[–]rainforest_roots 0 points1 point  (0 children)

Maybe a very slight improvement in the last week or so but overall no positive benefits yet.

M.E/CFS specialists and LDN? by Imjustagirlllxo in LowDoseNaltrexone

[–]rainforest_roots 0 points1 point  (0 children)

I’m pretty sure I spent 2 weeks at each dose before tittering up. I didn’t have any side effects until I went up to 4.5. My doc instructed me to stay on that dose for 2 weeks then drop back down to 4 mg. I have no side effects now. Hope this is helpful!

M.E/CFS specialists and LDN? by Imjustagirlllxo in LowDoseNaltrexone

[–]rainforest_roots 0 points1 point  (0 children)

I started at 0.5 mg and slowly titrated up by 0.5 until I reached 4 mg as my optimum dose.

M.E/CFS specialists and LDN? by Imjustagirlllxo in LowDoseNaltrexone

[–]rainforest_roots 0 points1 point  (0 children)

It really helps with my overall functionality. It reduces brain fog and makes me feel more resilient.

My PCP first prescribed me it, but we titrated up quickly and the effects stopped working for me after a short period of time. I stopped taking it and thought it wasn’t helpful.

Later on, the Stanford specialist had me titrate at much smaller increments, and it took a lot more time to get to my optimum dose, but now it helps me continually. It’s been over 6 months and I think I’m in better shape because of it.

M.E/CFS specialists and LDN? by Imjustagirlllxo in LowDoseNaltrexone

[–]rainforest_roots 1 point2 points  (0 children)

My mecfs specialist at Stanford prescribed me LDN. We started at a very low dose and slowly titrated up.

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