• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

HELP Anyone go to the hospital/home health nurse during a scary flare?

me2

Messages
24
I haven't felt this sick in a long time. I mean I'm always sick but this is scary. I had two very stressful days and didn't get enough sleep and now I just feel like I need nursing care. Not sure how to go about it or if I am expecting too much. Any thoughts? Excruciating pain and not thinking clearly. Would my doc think I was nuts for asking for care? I keep tearing up, too, due to pain and just feeling so terribly sick. Would they say, "just depressed."? Could use some help, guys. Thanks. BTW, Dr. Klimas is my dr but she is in Miami and I'm hundreds of miles away.:In bed:
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I haven't felt this sick in a long time. I mean I'm always sick but this is scary. I had two very stressful days and didn't get enough sleep and now I just feel like I need nursing care. Not sure how to go about it or if I am expecting too much. Any thoughts? Excruciating pain and not thinking clearly. Would my doc think I was nuts for asking for care? I keep tearing up, too, due to pain and just feeling so terribly sick. Would they say, "just depressed."? Could use some help, guys. Thanks. BTW, Dr. Klimas is my dr but she is in Miami and I'm hundreds of miles away.:In bed:

Hi me2,

Why don't you sign yourself into chat (lower right hand corner of the page--click on the wheelie thing) and talk with some of us. It is awful to be alone when you are feeling too bad. Would Dr. Klimas call your doc and recommend some home health care? It may depend on what state you are in whether it is easy or hard to get.

Best wishes,
Sushi
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It so hard to get any form of nursing care with this illness no matter how sick one is.

Hospitals arent a good place to be when one has ME (im saying that from my own experience with them.. one cant rest well in them at all and while there one is constantly dealing with people who dont understand ME). Its not an option I recommend at all unless you have something like breathing or heart issues.

Excruciating pain
didn't get enough sleep

Sounds like part of your issue is your symptoms arent being treated enough. Pain will give sleep issues and may leave you feeling nauseus as well as stress you out and run you down so that the ME is worst.
You need stronger pain killers or to be trying meds for FM if that is what is causing the pain?. Would Dr Klimas be able to help you get some medication even if throu your normal doctor???

Be aware if you are doing too much and making your symptoms worst throu that.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
If you do need to go to hospital or ER for any reason, do not tell them you have CFS or ME. They will likely assume you are a hypochondriac if you do (this has happened to me; they totally missed my asthma and wrote off my breathing issues to anxiety).
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Me2, sos orry to hear about the difficult time you are having. I agree with the others that hospital is not a greta place to be for M.E sufferers, unless you have very severe new symptoms.
Is it possible to contact Dr Klimas's office and tell them what is happening? i agree with the others that perhaps she can do some emergency prescribing for you through your regular doctor.

If i have a very bad crash and havent slept i would suggest some painkillers and also something like diazepam and try to sleep for as ;long as possible, or rest in bed for as long as possible until you feel a bit stronger.

Are you able to make food and use the bathroom? If not is htere anyone who can help out with these things for a few days.If this feels like its going to take more than that then i suggest you may need some care, im not in the US so i dont know how it works there? Sometimes if you are a memebrr of a local support group you may find some less badly affected who may help or have suggestions.
Please take care, Justy.x
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
how are you doing today, me2? :hug:

were you able to get a hold of Dr. Klimas (I don't know if she has an emergency pager for weekends or not) to see if she could make any recommendations or prescriptions over the phone?