Suddenly bedbound?

[Gingergrrl]

@taniaaust1 what do you think lead to your full remission of 2-3 years? Did it seem random or due to a specific treatment?

 

[taniaaust1]

@taniaaust1 what do you think lead to your full remission of 2-3 years? Did it seem random or due to a specific treatment?

maybe just luck and aggressive rest therapy and doing anything I could do to avoid getting worst or crashing more.

I didnt even get myself woken up for meals as I think that would of been counterproductive due to how severe I was. I had to put myself before my family and kids as I saw that I just got into that terrible state in the first place throu pushing myself so realised the only hope I had of improving was to put myself and my own needs first. Basically I had to be shut in a dark room and left for 9mths to get out of that bad crash which had left me unable to walk most of the time, I had trouble just holding my head up.

My kids couldnt even talk to me as it made me worst (I lost my ability to speak sentences or understand them.. we communicated in sign language for eg I need a water or food or would point to the potty so daughter would empty). My eldest poor daughter was only 10 years old and had to become my carer. She did EVERYTHING except the shopping, i was too sick to see friends (I was even movement intollerant if someone walked by me I almost had a seizure due to the brain overload) but a friend did get the shopping and leave it at the front door for my daughter to put away.

I was both sound intollerant and light intollerant. My body pain all over was so bad my children couldnt even hug me (unfortunately that whole thing damaged my relationship with my youngest who was only 7-8 years old at the time and didnt understand this whole thing.. she took it that I didnt love her).

Once I started improving, I forced myself still to rest (my teeth didnt get brushed for over a year).. and when I left the bedbound stage (injuring myself in the process cause my muscles were so week so ended up in hospital for a week after trying to follow a physios advice), I still forced myself to take afternoon naps. It took years to get out of a bedbound state and back to a normal way of being. A 3-5 year process of doing all I could to avoid crashes.

Unfortunately there is no easy answer for this stuff. Best trying to just do whatever you can to avoid getting worst and try to stabilise and then go from there. (the thread poster by the sounds of it is doing that).

I wish I knew what happened in ones body to make someone that very sick surely something MAJOR has to be going wrong for that. I didnt have any blood tests done during that time as I was too sick to get to a doctor but years later I had blood tests showing severe hypoglycemia. (the last time I'd struggled to a doctor, I been abandoned by them with being told "we cant do anything for CFS" so I just ended up in a bedbound state not able to do a thing )

Without my 10year old I would of died (I was going up to 3 days without drinking due to going comatose). This is all why Im getting so destressed that Im going downhill due to currently being forced to do too much as Im unable to get the support I need from state services.. I dont have anyone now to look after me so I can try to pace myself very very slowly back to some form of maybe health again.

My improvement was luck and aggressive rest therapy and who knows if I will ever recover again if I end up that bad again. I have no idea how many extremely severe ME people came back from that but I consider myself very lucky to have done. The odds when one are that sick dont seem to be too great.

Its a scary place to be in to be getting worst and not being able to do anything about it.

 

[Automobilie]

Another update.

Started having stomach pain after eating and could only get about 1000 calories at first. Ended up with an endoscopy and bariun swallow and the only thing mebtiobed was a hiatus hernia, but I won't hear more until the 17th. No ulcers or even scar so apparently the burning pain I've had in the past wasn't real and no signs of inflamation... The barium swallow also showed at least liquids pass quickly through everything. On a ppi, but christ its like my stomach overloadd after a cup or two of food for hours. I'm afraid of overeating at once in case it gets horrid and I end up needing pain meds. My gallbladder is also ok.

 

[Little Bluestem]

@Automobilie, What kind of games do you play on your gameboy? If they are adrenalin producing, they may not be good for someone with ME.

 

[justy]

Hey auto - sounds truly awful, so sorry to hear about all this. I also have become worse recently after 4 years of gradual and VEEERY slow improvement from severe end of moderate to mild end of moderate. Like others I had a nasty chest something in the summer and it has whacked me down yet again.

I have also had very severe stomache pain which didn't go on normal dose of ppi - in the end I took two a day - am and pm to control it. After a few weeks it helped, and took 6 months to get btter then a year of slowly tapering off the ppi's. I also didn't have an answer as to what was causing it.

@Gingergrrl like Tanni I also had a real remission to nearly normal for about 8 years. I didn't do anything specific to make it go away. But I sure know what brought it back even worse 6 years ago - catching measles from my kids - ive never recovered.

Auto - I understand how desperate you can feel - been having a lot of that myself lately.

 

[JAM]

That sounds very similar to my symptom set. Have you been tested for HHV-6/EBV? I hope you get some answers that bring relief.

 

[Automobilie]

Had ebv titers up, but they went down after a few months.

Today I just found out my dad is dipping which about ended my parents marriage until he quit. So my parents will be splitting, taking away alot of my support network. My mom will go south at some point and I have to go with her. I can't handle a flight and a move. Getting to the point I'm going to have to kill myself and I really don't want to...

 

[Little Bluestem]

There is a thread or threads here somewhere about dealing with flying. You can arrange to be taken to and from the plane by wheelchair and such.

 

[Automobilie]

Another update. The last couple weeks I've been able to get out of bed, could even help.my dad on the house and be on the computer again. Felt rough today, so that might've been a short lived boost and just found out I've got a cavity showing up. Hopefully it won't take three months to recover again...

 

[minkeygirl]

I found this thread looking for advice on a post dental work crash. @taniaaust1 You said you didn't brush your teeth for a year. well I feel your pain but that is what got me into this mess because I needed some work after neglecting my teeth.

I felt good when I started with an inlay and a crown. The day after the appointment for impressions for the crown I crashed. I know that was viral because my throat was raw and swollen and when I upped my Famvir to 1000 mgs/day, within 2 days that helped. This time it has not.

It started 2 weeks after I got a new crown. I was testing it and chewed on an apple piece. I immediately had horrible TMJ nerve pain (which I've had for a few years). I started on Bactrim in case there was some infection and within a few days the pain was gone.

But the fatigue is crippling. I'm so tired I am not exaggerating when i say I can't keep my eyes open. I feel like I can't get enough air into my lungs and the brain fog is horrible. I wake up like this and go to sleep like this. I'm exhausted but not sleepy.

I live alone and have no help so can't just not do anything. (I have to get my mail, take out my trash etc.) My neighbors have no idea that I am sick and I don't want to ask for help because knowing changes things).

I took 1000 mcg MB12 today and that helped briefly.

I lost my train of thought and focus. No book answers please.