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New Symptoms Since Onset Last Year....

AndrewB

Senior Member
Messages
119
Location
England, UK
Hi andrew here,

I asked all of you a month or so ago about symptoms as i was finding it difficult to get officially diagnosed.
Since then my GP has suggested it 'might' be ME/CFS but ive been refered to a specialist at the end of this month.
This second relapse has been just as severe as the the onset last year, but with new added symptoms.
Although i did have night sweats before, im getting temp fluctuations all through the day, hot and cold now.
Also, ive got a constant aching in my head and eyes.
This has been happening for a few weeks non stop.
My breathing is slightly better than it was, say last month, but only if i remain bed bound, moving about even once will set off breathing trouble.
So, although i feel a little better since i last posted about my current relapse, the new symptoms are still a worry.
I did have the all clear on my upper body CT scan.
One thing i am noticing, is the speed of recovery to better health where i could walk around is much slower than last year, does worry me that maybe ive recovered as much as i will.
Last year i was luck enough to go into a remission of sorts, but this year, its dragging.
:wheelchair:
 

Nielk

Senior Member
Messages
6,970
Hi andrew here,

I asked all of you a month or so ago about symptoms as i was finding it difficult to get officially diagnosed.
Since then my GP has suggested it 'might' be ME/CFS but ive been refered to a specialist at the end of this month.
This second relapse has been just as severe as the the onset last year, but with new added symptoms.
Although i did have night sweats before, im getting temp fluctuations all through the day, hot and cold now.
Also, ive got a constant aching in my head and eyes.
This has been happening for a few weeks non stop.
My breathing is slightly better than it was, say last month, but only if i remain bed bound, moving about even once will set off breathing trouble.
So, although i feel a little better since i last posted about my current relapse, the new symptoms are still a worry.
I did have the all clear on my upper body CT scan.
One thing i am noticing, is the speed of recovery to better health where i could walk around is much slower than last year, does worry me that maybe ive recovered as much as i will.
Last year i was luck enough to go into a remission of sorts, but this year, its dragging.
:wheelchair:
Hi Andrewb,
Sorry to hear about your disturbing new symptoms.
It sure sounds like M/E.
Do you know what put you in a remission last year?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
One thing i am noticing, is the speed of recovery to better health where i could walk around is much slower than last year, does worry me that maybe ive recovered as much as i will.
Last year i was luck enough to go into a remission of sorts, but this year, its dragging.
:wheelchair:

Each time one crashes with ME/CFS it may not be the same as the last. Recovering from any crash can be quite slow. Sounds like you are following the technique I used and recovered after my first severe bout of ME.. Agressive bed therapy . I made myself stay in bed just to stop the symptoms coming in which I got if I got up or did anything, I layed there and didnt move as little as possible (this was once Id got to the point where I could get up at times.. I didnt have any choice there for a long time). I think i own my first remission due to doing that and protecting myself from going downhill again,.

A progress upwards may be long and slow. If you can avoid big relapsing again, you may find yourself each year, a little better then the year before but each is a welcome bit of recovery.. a step forward in right direction. I used to improve at a rate of about 5-10% a year at first each time after I have a big crash... then a faster remission happened once I got to about the 70% improved state (I think i went to 70% to 100% improved in one year before I got stupid as I no longer thought I had to take any care at all and crashed again).

Nowdays Im fairly good, if I dont do anything I can feel healthy. Its deceptive thou as I cant really do much.
Your are still probably stabalising with this illness into some kind of level which isnt reached yet.

.. best luck
 

Valentijn

Senior Member
Messages
15,786
I know it sounds odd, but fish oil might help with the constant headache. I had the same thing, and it works for me ... the pain comes back if I forget to take it for a day or two. Supposedly the ME headache is due to inflammation, and the omega-3 in fish oil helps keep it down.
 

AndrewB

Senior Member
Messages
119
Location
England, UK
Hi Nielk

Last year i got better by remaining in bed and not moving around at all if it could be avoided. I had a family member buy in bottled water, and i eat once a day, as eating too much seemed to make me worse.
I also stopped all pain and sleep medication too, i basically exisited like that for as long as i could.
This time ive been talking zopiclone to sleep, but ive not taken any pain medication, i cant tolerate anti flammation drugs so the GP gave me tramadol, which does take most of the pain away, but in this relapse state, seems also to hinder my breathing.
So apart from visits to the GP and the bathroom, im not moving around at all, i just hope it works like it did last year.
I think i know what caused this years crash, i attempted to return to work (i worked in music and film) and i was really pushing myself too hard, long hours, alcohol usage, and little natural sleep, i think all contributed.

Valentijn, would cod liver oil do the trick to stop the headaches, they are stopping me being able to read or use the laptop for a reasonable peroid of time.
Reason i ask is ive got cod liver oil here in the kitchen, i was told they would help with the joint pain but ive not tried them yet, i was trying to detox as much
as possible.....
 

Valentijn

Senior Member
Messages
15,786
Cod liver oil should do it, just pay careful attention to dosage instructions. Liver oil is very high in vitamin A, which can be toxic. I don't need much of regular fish oil to keep the headaches away ... usually just one capsule in the morning does it for me.

Eating salmon works too :)
 

AndrewB

Senior Member
Messages
119
Location
England, UK
Cod liver oil should do it, just pay careful attention to dosage instructions. Liver oil is very high in vitamin A, which can be toxic. I don't need much of regular fish oil to keep the headaches away ... usually just one capsule in the morning does it for me.

Eating salmon works too :)

Hi valentijn, i took a capsule this morning and im glad to say its working, thanks for the tip, much better than the chemical kosh that you get with painkillers. i cant normally tolerate anti flammation medication so this was a great find. i just hopes it continues to work:D