• 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.

Try not to worry about new symptoms, easier said than done i know!

coxy

Senior Member
Messages
174
I bet most of you know what i mean when i say try not to worry about new symptoms that come along.
As the years roll on with this illness, i've been to casualty with the children on different occasions with various joints that appear to be clicked out, which cause a lot of pain, we go through endless waits, x rays only to find there's nothing to be seen, usually by the time we've got to the point of seeing a doctor, the symptom has gone only to be replaced shortly after with something new, completely different.
We've contacted doctors about nausea when she could stand it no longer, by the time we've been able to get ginger or whatever was recommended, it's gone!
We've had periods of migraine, got the stronger tablets, then it moves onto something else.
Every now and again we'll get symptoms that panic us, could be sudden visual problems, extreme tummy pains, back pain, all of which throw you into complete turmoil as to if it's an ME symptom or we're about to die of appendesitus or something!!
We've fainted out of the blue, when that happens for the first time it's scary, but apparently nothing to worry about, an anxiety attack we've been told.
At least we can never get bored with the same symptoms i suppose. Our main concern is what's going to come along next, sudden massive weight gain, sudden weight lose(both have happened in our family).
Joint agony, muscle pains, shaking episodes, bright light, loud noise who knows?
When you're new to me/cfs, every new symptom i used to need clarification for, is it normal in me/cfs or something else?
Now we mainly stay away from doctors and sort ourselves out via help online.
Remember try not to worry to much, it will probably be gone as soon as it's arrived, hopefully.
 

m1she11e

Senior Member
Messages
333
Location
Florida
I really appreciate this thread. It so describes my situation right now.

Ive been sick with "CFS" for 28 years and until the last 2 years it was pretty much the same symptoms. Of course they would peak and decline and change some what.

The last 2 years I have been sicker than normal and my symptoms keep changing. I have the basic ones I have always dealt with but I have suddenly had sinus issues that wont resolve, vision problems of all kinds, pain under my right ribcage that I just paid a fortune to try to figure out (so far nothing although it keeps me awake at nigh), stomach aches that keep me awake, and what seems to be an ongoing bladder infection. It seems like when one things seems to be resolving, something else takes it place and the symptoms trade off for which will be at the top of the list that day.

I told my daughter that if I wasnt living it I wouldnt believe it. There has been so many new, mysterious symptoms that if my pinky finger suddenly fell off and walked across the room, I would think "oh great, now what am I gonna do about this?"

You are right though. It seems that I feel "this is the big one, it is so bad that it must be cancer or something else." I spend the energy and the money to go to the doctor and run their tests and by the time all is said and done, nothing has been found and a new symptom has popped up. These constant changing symptoms are new to me and they are causing me a huge amount of anxiety. If it is something horrible it is not that I mind so much, I just cannot stand not feeling good or being in pain and not knowing where it came from or what brought it on.

Thanks for the post. So, Coxy, is it you and your children that are all sick?

Michelle
 

coxy

Senior Member
Messages
174
I'm afraid it's me and 2 out of my 4 children, they both got it at 8yrs old (4 yrs apart) i got it AFTER both of them 2 yrs later, that's why i know about the various different symptoms changing so much, with 3 of us you never know what's going to come along next. I get worried about all the talk of cancer being linked to ME/CFS now though, we all get to the point of not having blood tests etc, so who would ever find out before it's to late. My eldest daughter is 15yrs and has lost nearly 3stone in 12 mths, she is in remission, so we took her weight loss as a good sign at first, but it's still going down and down and she hasn't uped her activity level at all, hence the remission, she's just very careful what she does. QUOTE=m1she11e;40912]I really appreciate this thread. It so describes my situation right now.

Ive been sick with "CFS" for 28 years and until the last 2 years it was pretty much the same symptoms. Of course they would peak and decline and change some what.

The last 2 years I have been sicker than normal and my symptoms keep changing. I have the basic ones I have always dealt with but I have suddenly had sinus issues that wont resolve, vision problems of all kinds, pain under my right ribcage that I just paid a fortune to try to figure out (so far nothing although it keeps me awake at nigh), stomach aches that keep me awake, and what seems to be an ongoing bladder infection. It seems like when one things seems to be resolving, something else takes it place and the symptoms trade off for which will be at the top of the list that day.

I told my daughter that if I wasnt living it I wouldnt believe it. There has been so many new, mysterious symptoms that if my pinky finger suddenly fell off and walked across the room, I would think "oh great, now what am I gonna do about this?"

You are right though. It seems that I feel "this is the big one, it is so bad that it must be cancer or something else." I spend the energy and the money to go to the doctor and run their tests and by the time all is said and done, nothing has been found and a new symptom has popped up. These constant changing symptoms are new to me and they are causing me a huge amount of anxiety. If it is something horrible it is not that I mind so much, I just cannot stand not feeling good or being in pain and not knowing where it came from or what brought it on.

Thanks for the post. So, Coxy, is it you and your children that are all sick?

Michelle[/QUOTE]
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
This is very true and I learned it too over the decades of having this illness. It is unreal how intense these odd symptoms can get and how diverse they are. I never would have believed this could happen either. So sorry your kids are sick too coxy.

All we can do is take it min. by min. and sec. by sec. My mantra is Let Go and Let God.

:hug: