I decided over the years that PEM works much like traffic congestion. I have tried to start back on either one-but Heart rac ing starts badly. They would do nothing for me.
I am 15 minutes getting to pressure, an hour at pressure, and 15 minutes to depresurize. They also phone when I’m stuck in bed, catching me up on the latest gossip and giving me something to think about besides how rotten I feel. TV.
and has to be tailored to the specific need being addressed. Thanks for raising the question, Cort. I alternated rest with research on the internet and came up with an action plan. You must log in or register to reply here. Get rid of toxic people. Thanks everyone for their input here and thank you Cort! I have CFS and no doctor.
Until recently, I could always tell that my dreams were dreams, maybe that was a side-effect of poor REM sleep.
If I get 4.5 hrs of sleep at night I know to plan extra 3. keep Heart Rate monitor on, do nothing above my max even if it is really inconvenient, since HR goes way up with simply walking – accomplish most things laying down or by crawling on floor, no lifting or raising arms above head Please let me know how you are. Diane, “I use a My Zeo head band to monitor my sleep – it tells me how much sleep and time in each stage.
And Epsom salt baths to help get rid of toxins.
The thing that has helped me most is getting my friends on-side. Sorry to hear you are so sick, if you can't get any relief I strongly suggest you go to the ER tommorow, please! They watch me, and remind me to take it easy. Congratulations on getting better and I hope you continue to improve.
I had to retire early (50) as I pushed myself for two years past the point of being able to function at work, after a severe bout of bronchitis. Regarding the physical path to recovery (the easiest one any of us can address first): Definitely smaller meals, and more of them, much easier for a body low in energy to process. Using oxygen really HELPS a lot. Rest, rest, rest, and more rest. Posted by 4 days ago. Writing all this because oxygen is delivered in different ways, pressure, etc. It helps me plan my day.
Nothing helped me sleep and feel as good as the two of these together. And if you have some garlic in the house, put that in the boiling water, it will get into your sinuses and should help. !’, ‘haven’t found anything that works as well as nothing!’, ‘Nothing works for this last crash.
The Diarrhea comes out of nowhere, but definitely sets off a chain of events.
I started to take quite a few supplements; again, I consider myself very fortunate because my children are grown and I had the option of spending this money on myself. Taking a shower may leave someone with ME/CFS bed-bound and unable to do anything for days. You can recover. I am 2 months into it. It doesn’t take much of it; 4-5 hours will do it and I will feel Fruit for lunch. This time, the portable mild pressure hyperbaric oxygen units came out, and my physician had 2 units. most off us no our limits if things are under your control dont exceed them –easy to say harder to do, I lie flat with a pillow under my knees and try to slow down my thoughts and sleep. Work and other activity pretty much stops and then it’s a mostly a waiting game. I do increase my fluids and salt intake but it’s just not the same as IV fluids.
I think for me it would be a kind of tightening of muscles and shortening of breathe when I go walking.
I dont get to crash with the other ME stuff often as usually the POTS gets to me first, rendering me completely unable to stand and hence prevents me from overdoing things enough to flare up the ME in other non potsy kind of ways. He said they were great , I really hatted the next gen series PC really damaged the brand ,but with new bluray remasters im enjoying them finally ,guess I just got numb to PC in the end , “As far as handling a crash, I can only ride it out, try to do at least some gentle motion, use mindfulness techniques, moist heat, and it really seems that olive oil-rich foods help some; I’m having hummus right now. I crash every day. Take extra meds (I take Sinequan) if you need them at night. Hobbies and social life. But i don’t care i am recovering. Crashes occur for me, as with others, when there is too much, this applies to everything. It helped a lot. If you try to “push through”, it can make it very difficult (if not impossible) to ever recover. It’s the only thing I’ve found that works for me.
I’m definitely paying for it … Flare ups happen to me 1-4 days after pushing my limits. Had never heard of it until I met the right doctor. 3. drag myself for a massage once I’m well enough to get myself there.
Needless to say… I don’t use any tobacco products… Quickest way to poison yourself. I’ve collapsed twice – second time was taken to hospital and couldn’t wee for 14 hours – I think muscle exhaustion. Hi Kathy I have had ME for decades…had to stop teaching when I was only 52.
Attempting to get over this involves fine attention to diet, (low GL). It is so hard to hold back.
I’ve tried a lot of things (supplements, etc.
We’ll use the answers to build a list of suggestions for everyone with these disorders.
The only thing that works for me is sleep. God its so aggravating going through a crash again and deteriorating despite doing what I can.
Crash I know !
I tend to wind down, rather than collapse. I feel like I’ve learned to manage it quite well, although I still have bad symptoms that happen randomly : severe nausea, light headed, hot flashes, heart pounding etc… I am currently in the middle of a setback due to post exertional malaise. Definitely cancel any ‘extra’ activities or events, just cull the calendar and not take anything extra on. A liter or two of IV fluids helps me a lot – except I can’t get a doctor to prescribe it . I’m intrigued by the comments about 02 therapy and will look into that, it makes sense.
I’m so curious because I cannot seem to find my ‘energy envelope’, except that anything ‘hard’ always hurts me! share.
– Therapies that impact mitochondria. I don ‘t feel like eating most of the time so juice greens, a little beetroot and apple and small amounts of protein and veges and lots of rest.
Attending a child’s school event may leave someone house-bound for a couple of days and not able to do needed tasks, like laundry. I naturally get crazy thirsty at that time anyway, so I guess my body knows what it’s doing.
Sometimes I try to kind of inculcate little bits of good feelings by moving my body slightly. If i can you can….I wish you all the very best.
I bought it out of pocket.
Dont watch the news.
I think I just erased my Post.
I know today I am feeling dehydrated.
For me it usually starts with muscle tightening that ends up in burning muscle pain, pounding heart, difficulty concentrating, irritability and a need to lie down, etc. Xafaxin is the great antibiotic that’s been real helpful in IBS and in some people with CFS. who are trying mild low pressure hyperbaric oxygen.
My main advice to anyone “new” with this is not to try to push on. Avoiding all stress and anything that does not serve you. I top up the points with rest periods but I rarely sleep during the day.
the other major help with the low BP on standing is getting IV fluids.
Find an advocate or a nutritional advisor. Exercize of both kinds helps me get more deep sleep. Desmopressin is for DI. A physical therapist and friend was encouraging me to get the scooter and I am so glad I did. My BP used to be very low but is now normal (perhaps my old age?). It is not intended as medical advice and should be used for informational purposes only.
I weighed 97kgs at the time. I wish I had not phrased the title of this post in the way I did as the covid long haulers have done nothing wrong and have gone through such a terrible experience to come out on the other side with scary unknown long term symptoms. dont talk..shut off phone..sleep, and rest.
Initally I felt that going to the infusion center, spending hrs there did not result in any net gain from the fluids. I will try the points system that you have outlined here, as it’s methodical and that works for me.
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