Severe crash

[sissypop]

I've had fibro/cfs for nearly 20 years. And fortunately I've had a mild to moderate case with you know the good and bad days. I live alone and this past Wednesday evening my neighbors became concerned about me because I'm usually out several times a day with my dog. ( I've worked until this past April but that's another story.)

But my neighbors hadn't seen me so they came in and found me unresponsive. They were able to arouse me but I just went back to sleep. Long story short ambulance was called. I spent 3 days in the hospital and they found nothing wrong. I came home and slept for 18 straight hours. Yep not even waking up for a bathroom break. I now feel pretty much like my usual tired self.

I have been getting worse the last few months. I had a bad case of the flu the whole month of December that I never felt I fully recovered. I've heard that "no fibromyalgia is not a progressive disease ". But I just don't believe that. After every cold, flu etc I feel like I take 5 steps back and only recover 3 or 4 if I'm lucky. And does it get worse as I get older or is it just getting older? I'm 60 and I feel at least 80 most of the time. In fact I see some 80 year old that could run circles around me.

Any comments or similar experiences would be much appreciated.

Sorry for the long post. I know I'm not near as bad as some and honestly my heart goes out to everyone here. I know we have all lost a part of our lives.

 

[Shoshana]

I am so sorry that you have been much worse than your usual.
I hope it is part of a wax and wane pattern, and that you will feel a bit better, soon.

I am glad you have neighbors with at least a little concern.
And good that you got checked out at the hospital, so that does at least eliminate some of the unknowns.

But it is always amazing to me, how primitive our medical practices still are, with our illnesses,
that they don't see what is wrong, when we obviously do have a significant problem.

Sending caring to everyone, including you, Sissy pop,

and thanks, Sissypop, for yours, too.

 

[sissypop]

It is amazing isn't it how little is known. I live in a rural area the nearest hospital not that far away but that town only has about 40,000 people. I'm in the Ohio Valley and every nurse, nurse aid and even the doctors looked at me like I had 2 heads when I told them I had fibro.

My regular gp wasn't available. Maybe he was on vacation or something but to be honest he doesn't do much more than humor me I think.

There is no fibromyalgia specialist in the area. Someone said they thought there might be one in Ashland Ky. I'm going to try and find out. It would be worth the trip. But honestly if he's the only one around for miles it would probably be hard to get an appointment.

But I guess I'm wondering if what I had was more or less a typical crash. I've had really bad days before and always get pem when I over do it but I had never crashed that bad before. And I didn't do anything the day before to have brought that on.

Oh and I also slept probably 90% of the time I was in the hospital. So yep, caught up on sleep.

 

[Shoshana]

I think different people have different types of crashes, so I don't know if any are "typical" or not.
But this one is NOT typical for you, so something is going on, but so impossible to find out what, which bothers me a great deal... for you, and for others, and for myself, whenever I have my severe crashes.

Are you trying to drink a lot of fluids, and eat small nutritious snacks? Has someone offered to grocery shop for you, for some prepared foods that are easy for you to eat? It is important to try to do the basics, to regain a bit of stamina, if your body possibly can.
IF it continues, I wonder if you could get to any sleep specialist type doctor? Just an idea.

Of course I don't know what you should or could do.
I do remember that the Ohio valley is VERY hot, this time of year! It was nice in winter, though.

SO , do you have a way to not get too hot?

(Btw, I now live near bigger hospitals, but do not get any better medical care. They give the same type of strange responses. "I am tired, too" a cardiologist told me! EEEK ! I gave him an earful. )

 

[sissypop]

Oh I know. I had a doctor once tell me "hey we're all tired". I really gave up on doctors for several years after trying every prescription they would throw at me hoping this will be the one that will make me well! Not!

I am going to try and see about that doctor in Ashland. But other than the usual tiredness I feel ok today.

I've always been able to do my own grocery shopping, but as you probably know we have to choose those days carefully. Some days are just like "nope ain't gonna happen ". I always keep a stock of can soup and frozen things just in case I can't get out for a few days. So far it's worked ok.

I know I'm like everyone else. We live with that fear in the back of mind that it will get worse. It's worrisome for me because I live alone. My closest relative is my brother and he's 1200 miles away.

Yes I do get hot, I stay hot. I keep the ac on about 68. That started with the fibro too.

 

[Little Bluestem]

Oh and I also slept probably 90% of the time I was in the hospital.

And yet they thought nothing was wrong.

 

[sissypop]

Oh they thought something was wrong alright. They thought I had overdosed on some drug that miraculously slipped through their blood screen. To say I was beyond insulted was an understatement.

Now I realize the area I live in has one of the highest rate of drug abuse in the country. And that when someone comes through the er pretty much unresponsive they are going to suspect that. But after blood screening and asking me what I took I could tell the doctor didn't believe me. It was like " no it can't be this fibromyalgia fiction, you're taking some drug you're not telling us about".

I also realize drug addicts lie. But still I was so angry.

 

[Invisible Woman]

I'm wondering, as they're so sure you had taken something, if any abnormalities showed up on any of your tests, @sissypop ?

I don't know much about drugs, recreational or otherwise, but surely there should be some other effect apart from sleep? Changes in blood chemistry & pressure, heart rate etc.

I wonder if it would be possible for you to get a copy of your notes along with all the test results from this sleeping episode to show this new doctor? It might be useful to compare with samples taken now to get an indication of what happened.

 

[sissypop]

I was told to follow up with appt with my regular doctor within 2 weeks. Well he can't see me for 2 or 3 months ( all booked up ) So I have an appt with his P.A. They will have all they records from my hospital stay so I am going to wait and see what they say. My regular doc wasn't available the whole time I was in the hospital either. But honestly sometimes I think the P. A. pays more attention than regular docs.

I gave up on doctors several years ago and this is why. But now I'm afraid things are getting worse and I just can't muddle through on my own anymore. I have to be under a doctors care. But damn it I want one that at least recognizes this stuff.

 

[*GG*]

It is amazing isn't it how little is known. I live in a rural area the nearest hospital not that far away but that town only has about 40,000 people. I'm in the Ohio Valley and every nurse, nurse aid and even the doctors looked at me like I had 2 heads when I told them I had fibro.

There is no fibromyalgia specialist in the area. Someone said they thought there might be one in Ashland Ky. I'm going to try and find out. It would be worth the trip. But honestly if he's the only one around for miles it would probably be hard to get an appointment.

Oh and I also slept probably 90% of the time I was in the hospital. So yep, caught up on sleep.

Not sure how good Dr Rodger Murphree is, probably still quit a distance for you? In that case perhaps travel to California and start getting established with them? https://www.omf.ngo/

https://yourfibrodoctor.com/contact-doctor-rodger-murphree-for-the-treatment-of-fibromyalgia/

GG

PS Welcome to the forum!

 

[hamsterman]

I agree with you completely on the flu causing a drop in your baseline. I've experienced the same. However, one thing that helped quite a bit was Tamiflu. Not only because it stops the flu, but it makes me 'bounce-back' after the flu ends, rather than staying in the typical semi-PEM feeling for weeks afterwards.