Suddenly bedbound?

[Automobilie]

Up until two weeks ago it seemed like I could stay upright and walk around ok all day. Could be on the computer awhile and this summer I even spent most days fixing up a couple cars! Then a couple weeks ago I took a trip into town, felt good for an hour then crashed. Usually laying down immediately helped, it kind of did. Was feeling a little better, did some welding for my dad and got fluish, but startes to recover until an appointment with a chiropracter too early and too pushed that I hit a major crash I think. The laat xouple weeks have been weakness and some nausea if I'm up for more that ten minutes. Yesterday I got ip from a nap and within ten.minutes crashed! My crashes are usually weakness, nausea, and a quick bout of diahrea. Laying back down helpa after a bit, but how long until that stops helping? Advice?

 

[Martial]

Have you looked into POT/S? Also may be worthwhile to try bumping up your magnesium and potassium intake, as well as getting extra salt in your diet, ideally pink sea salt is most beneficial. What treatments are you doing for your condition riight now?

 

[Automobilie]

Well, I just put a couple 2" boards under my bed and have been eating more salt, already drank alot of water. Tilt table test had no bp loss, but my hr was 120 the whole time. Cardio just said up the salt. I eat alot of nuts and avocados which should give potassium and I've never been low on anything but the vitamin D . Which pose come back up because I've been taking vitamin D. My bp has been between 90/45 and 110/70 and doesn't drop when I stand that I can find.

 

[Martial]

Well, I just put a couple 2" boards under my bed and have been eating more salt, already drank alot of water. Tilt table test had no bp loss, but my hr was 120 the whole time. Cardio just said up the salt. I eat alot of nuts and avocados which should give potassium and I've never been low on anything but the vitamin D . Which pose come back up because I've been taking vitamin D. My bp has been between 90/45 and 110/70 and doesn't drop when I stand that I can find.

Sounds like your good on all that then, transdermal magnesium can work wonders though, also intra cellular magnesium does not show up easy on tests. It is however found pretty deficient in cases of chronic ill health. One of my biggest issues is low blood flow and inflammation of my brain that comes and goes in intensity from infection, when I have the biggest flares I have strange things happen out of nowhere too. Anyways I hope you pull through this quickly and just wanted to give my support!

 

[WillowJ]

Well, I just put a couple 2" boards under my bed and have been eating more salt, already drank alot of water. Tilt table test had no bp loss, but my hr was 120 the whole time. Cardio just said up the salt. I eat alot of nuts and avocados which should give potassium and I've never been low on anything but the vitamin D . Which pose come back up because I've been taking vitamin D. My bp has been between 90/45 and 110/70 and doesn't drop when I stand that I can find.

I hope your crash doesn't last long. best wishes

 

[Automobilie]

Thanks for the support guys

 

[frenchmoxie]

I've been having symptoms similar to yours. @Automobilie
You mentioned something about eating lots of nuts and avocado, I started feeling sick after eating avocado. Have you ever heard of histAmine intolerance? Look up low histamine diet on Google, and mAybe see if any of the high histamine foods on the list give you any trouble? I've found that I cannot tolerate foods that are high in histamine. Just a thought when you mentioned avocado and nuts. Hope this helps!

 

[Automobilie]

I've thought about that, but because my blood sugar gets fritzy sometimes and I already have a hard enough time keeping weight on I don't know if I can cut anything else out...

 

[Little Bluestem]

You can have normal blood magnesium and potassium levels, but low levels in the cells. Taurine helps get them into the cells.

 

[Martial]

You can have normal blood magnesium and potassium levels, but low levels in the cells. Taurine helps get them into the cells.

No wonder taurine has been such a help for me lately lol

 

[Automobilie]

I can try that. How long did it take for you to notice a difference?

 

[Rlman]

low blood glucose, bp, diarrrhea, can be from adrenal issues. though of course maybe many other things.

 

[Gingergrrl]

You can have normal blood magnesium and potassium levels, but low levels in the cells. Taurine helps get them into the cells.

@Little Bluestem I have been taking Taurine every day for weeks and it has been very beneficial. I did not realize that it helped to get Mag and Potassium into the cells. If people already told me this, I forgot or didn't retain the info! That is very re-assuring and Taurine is very calming and helps me to sleep as well.

 

[Automobilie]

Well, last friday started having abdomen pain. Haven't eaten more than 1000 cal.a day and went to the er monday felt so weak. Electrolytes were fine, but lipase and anion gap were low. Starting on an anti acid to see if I can get my diet back and sit upright again...

 

[taniaaust1]

The best way to recover from a crash is to really show down. You may even need to force yourself to stay in bed for a while till you are doing better some. I make myself stay in bed for 3 days or more if I get like you are right now (aggressive rest therapy is one thing which can help me). A further crash may have you in a very bad way even when laying down so its essential to try to make sure you dont crash again at this point.

Usually laying down immediately helped, it kind of did.

I wonder if something was done wrong with your tilt table test or maybe you were having a better day that day, as it really does sound as if you have a dysautonomia of some kind (that can mess with your bowels and give you nausea and weakness too).

My issues once didnt show up on a poor mans test as I've drank a heap of water to get myself to the place okay, not realising that water loading can have one test fine (I was peeing every 20 mins as I had fluid loaded up so much, I peed 3 times just while waiting to get into my appointment).
.........

Ive had an abnormally low anion gap too. I think its something to do with my ME.

 

[Automobilie]

I've been slowing down. I don't work, don't play, don't talk to anyone, and don't fiddle with anything. I've left the house three times in the last month. Everyone says rest more rest more, but I can't rest more unless I stop eating. I haven't even showered in a week. I wake up, get whatever bit of food is around, lay down and play gameboy. That's it, and now that's starting to make me nauseous. The only things that come back positive are things that must be cfs, thats all there is left so I might as well just blow my head off. I haven't had any improvement in two years and I'm trying to do everything I'm suppose to.

 

[Automobilie]

Update: stomach or something still hurting even with ppi's. Starting a digestive enzyme and go to a surgeon monday for a scoping. Been seriously sick the last couple days and can be up for about 5 minutes...Last year I couldn't image how horrible this was going to get. Two years ago I was happy and now I'm living one of those horror stories people told me to ignore.

 

[Gingergrrl]

@Automobilie

Tilt table test had no bp loss, but my hr was 120 the whole time. Cardio just said up the salt. My bp has been between 90/45 and 110/70 and doesn't drop when I stand that I can find.

My bp does not drop when I stand either but I don't feel that my TTT was adequate or necessarily accurate (for many reasons that I won't get into here.) Your diastolic of 45 is very low and also your HR at 120 the whole time is very high. When you are standing up during the day is your HR that high? Did your doctor think you could have POTS or other autonomic issues? I take a beta blocker for the tachycardia which works really well (in addition to trying to increase salt and other treatments.) There is so much trial and error and I know how frustrating it is.

I've been slowing down. I don't work, don't play, don't talk to anyone, and don't fiddle with anything. I've left the house three times in the last month. Everyone says rest more rest more, but I can't rest more unless I stop eating. I haven't even showered in a week. I wake up, get whatever bit of food is around, lay down and play gameboy. That's it, and now that's starting to make me nauseous. The only things that come back positive are things that must be cfs, thats all there is left so I might as well just blow my head off. I haven't had any improvement in two years and I'm trying to do everything I'm suppose to.

I completely relate to what you wrote and I am only able to shower 1-2x a week. Showering is incredibly difficult for me even with a shower chair and is now something that I am starting to dread and fear. Every time I think I have found a treatment that will help me, it either stops working or I get some horrible side effect where it must be discontinued. I have many moments and days where I think it would be easier for myself and my family if I were dead but I know this is the despair of the illness talking and that it is not true. Usually in those moments, I come to PR and it reminds me that I am not alone and we are all in this together. Please do not give up and every person here matters profoundly.

Update: stomach or something still hurting even with ppi's. Starting a digestive enzyme and go to a surgeon monday for a scoping. Been seriously sick the last couple days and can be up for about 5 minutes...Last year I couldn't image how horrible this was going to get. Two years ago I was happy and now I'm living one of those horror stories people told me to ignore.

Best wishes with the scope (is it an endoscopy?) and hoping they figure out what is going on. Two years ago (even one year ago) I was still working and could still go on an hour long walk and was fully independent. Now I cannot walk across the room without getting out of breath (on most days) and can only leave the house 1-2x a week with significant assistance from my family. I now have a wheelchair and handicapped placard and never dreamed I'd be in this situation. But I still believe that I can improve and there are amazing researchers out there like OMF and the End ME/CFS Project who are working hard to solve this disease and I can't give up before the miracle arrives.

Please keep me posted how you are doing.

 

[taniaaust1]

I've been slowing down. I don't work, don't play, don't talk to anyone, and don't fiddle with anything. I've left the house three times in the last month. Everyone says rest more rest more, but I can't rest more unless I stop eating. I haven't even showered in a week. I wake up, get whatever bit of food is around, lay down and play gameboy. That's it, and now that's starting to make me nauseous. The only things that come back positive are things that must be cfs, thats all there is left so I might as well just blow my head off. I haven't had any improvement in two years and I'm trying to do everything I'm suppose to.

Sorry to hear that.

It's very hard.. I really do understand that as Im in that aweful position too where there isnt anything else much I can cut back on and Im in a wheelchair to go out now. My home is in a shambles as I cant take care of it.

I do want to tell you that I got so extremely sick with ME that I was going into comatose states for days at a time without waking (I was lucky I didnt die, I should of been on a drip and being tube fed) and was bedridden completely for 9mths where I could do nothing else except eat once a day if I woke up and sleep and use a potty by the bed.. ..but I had a full remission years after that and was doing great for 2-3 years (before I caught a virus and crashed back into this). Im telling you this thou as it is always possible that we could improve even from the worsest states with this.

If showering is too hard.. I suggest to do the top and tail thing with a flannel and bowl of water. I had to do that for a long time as I couldnt shower at all there for a while. I dont wash my hair much (I use a tiny bit of baking powder mixed with cocoa to match my hair, as a dry shampoo on oily parts of my hair). I washed my hair over a month ago (one wouldnt believe that to look at my hair but my hair must of adjusted to this over a long period of time).

 

[taniaaust1]

The laat xouple weeks have been weakness and some nausea if I'm up for more that ten minutes. Yesterday I got ip from a nap and within ten.minutes crashed! My crashes are usually weakness, nausea, and a quick bout of diahrea. Laying back down helpa after a bit, but how long until that stops helping

Thou I know it will make you feel like crap to to, I suggest to POTS test yourself again.. make sure you get a stable laying heart rate first eg be laying for 10 minutes then take the laying reading without sitting up.. .. then stand up and take it a few times over 10 mins without moving your toes etc. I really do think you have got some kind of dysautonomia going on.

So I personally think you should test yourself heart rate and BP again esp since your condition has changed and you have got worst. It would be bad to miss this stuff as then it would mean you are not receiving treatment for something you could be which may help you.