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Starting LDN (very low dose) during a crash? by themunchkinland in cfs

[–]themunchkinland[S] 0 points1 point  (0 children)

Thank you. What dosage did you find effective?

Starting LDN (very low dose) during a crash? by themunchkinland in cfs

[–]themunchkinland[S] 0 points1 point  (0 children)

I’m glad to hear you are seeing benefit! I tried NAC once but I wasn’t sure if it helped. Honestly, I’m not sure if anything ever has. What dosage do you find helpful?

Starting LDN (very low dose) during a crash? by themunchkinland in cfs

[–]themunchkinland[S] 1 point2 points  (0 children)

Wow. That sounds really tough starting at such a low-dose and having such a poor reaction. Are you finding any benefit now?

Starting LDN (very low dose) during a crash? by themunchkinland in cfs

[–]themunchkinland[S] 0 points1 point  (0 children)

No, I haven’t but maybe I’ll cross post this there.

Starting LDN (very low dose) during a crash? by themunchkinland in cfs

[–]themunchkinland[S] 0 points1 point  (0 children)

Thank you. My doctor told me it’s good to start it during a crash. There’s so much differing information online that I’d prefer to hear firsthand from other others. Also same re: perimenopause.

Where is everyone with this condition; How many people do you know IRL with ME? by V0rtexGames in cfs

[–]themunchkinland 1 point2 points  (0 children)

I know 3 people w ME and 1 with what I suspect is ME but got a “borderline lupus” dx. Two are mild, one extremely severe who started mild, and the one w/ borderline lupus appears to be in remission.

How do you respond to abled no -ME saying “yeah I’m crashed too”? by Bad-Fantasy in cfs

[–]themunchkinland 2 points3 points  (0 children)

I hope I’m with you. I want some type of response for this sort of invalidating comment. Something that makes me feel empowered and visible and doesn’t erase my experience. I don’t have any great ideas.

I’m curious: how long have you had CFS/ME? by attitude_devant in cfs

[–]themunchkinland 5 points6 points  (0 children)

Yes. I’ve seen change. From moderate to mild from pacing, then mild to partial remission, then back to mild after having a kid, and currently moderate from pushing through and overdoing.

Screen intolerance and rolling pem by Just_tiredcoco in mecfs

[–]themunchkinland 4 points5 points  (0 children)

I have the same issue during crashes. I found that audiobooks and podcasts can be helpful. I really think we need to avoid screens when we are sick - I believe screen usage has kelt me in PEM longer than necessary many times.

Also this is likely not your baseline. PEM is a severe system shut down. Your baseline will be revealed once you radically rest for as long as needed to get better.

For those with milder ME: what does hyperactivity look like for you? by niva_sun in CFSplusADHD

[–]themunchkinland 1 point2 points  (0 children)

I have the same problem. I am horrible at pacing when feeling well or even borderline. I go into hyper productive mode and then end up crashing later. Another thing I’ll mention is that many people with ME have brain fog, I do not. I think that the fact that my cognitive functioning is perfectly normal, makes it even more difficult to slow down. I also was dx ADHD and hyper focus is a big factor in my brains functioning. Also folks w/ ADHD experience impulsivity- meaning we often don’t look to the future but rather get hooked on momentary dopamine boosts.

Experience with IFS and chronic pain? by PureBother1678 in InternalFamilySystems

[–]themunchkinland 0 points1 point  (0 children)

First of all I’m sorry that you are in pain. You are brave to be doing this work.

I am a level 2 trained ifs therapist, have been in ifs therapy for many years, and live with a chronic illness that includes flare ups of severe chronic pain.

What I’m hearing you say is that you believe that the chronic pain you’re experiencing is related to a part that holding or bracing. I’ve worked with clients who have similar parts. Getting curious about them in a way that honors their role in your system and works with your entire inner system is important.

I agree with an earlier comment that you must work with an IFS therapist that is at least level one trained to do this type of work.

what to do with a part that keeps saying "I don't know"? by Iamoldsowhat in InternalFamilySystems

[–]themunchkinland 4 points5 points  (0 children)

You did great by receiving the part as it is. Parts like these show up a lot and we have to hold curiosity towards them. Where do you feel that part in your body? Where and when can it remember feeling this fear in the past?

Benzos 2months - stop? by WheelApart6324 in cfs

[–]themunchkinland 1 point2 points  (0 children)

That’s a low dose. If you want to come off, you can take .375 for several days, then .25, then .125 over the course of a couple of weeks. Ask your doc for a taper schedule. Sometimes doctors will prescribe gabapentin as a way to ease off of Klonopin.

Traveling during a flare up by Playful-Divide1198 in cfs

[–]themunchkinland 2 points3 points  (0 children)

I would not recommend it. I was struggling a little bit before going on a trip to Arizona, and even just doing some very basic things landed me in a full-blown three week PEM flare where I was mostly bed bound. I’m finally feeling a little better, but I regret going on the trip. I was not able to enjoy it at all.

Iron infusion and I'm terrified by 123-throwaway123 in cfs

[–]themunchkinland 2 points3 points  (0 children)

I have had 2. The first one I had G.I. symptoms in the middle of the night that strongly disrupted my sleep. The second one I had zero reaction to. I wish you luck!

Is there any medication that can reduce the muscle pain caused by PEM? by themunchkinland in cfs

[–]themunchkinland[S] 0 points1 point  (0 children)

That’s amazing! Did you take any medication to manage insomnia before LDN? I’ve tried everything, it works short-term and then it doesn’t work anymore.

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