cfs severity scale

[heapsreal]

After my last post i thought i should patent a cfs severity scale, just like some cfs docs have.

1) normal

2) ordinary (good day for cfser)

3) low level crap day (average day for alot of cfsers)

4) feel like crap (dropping a few hints of feeling unwell to others, starting to drop some panadeine/tramadol/pain killers)

5) buggered (done the pain killers, not working, lie down for a few minutes but get up and sit on the longe for a few minutes then go back to bed and this keeps repeating because i cant get settled):Retro mad:

6) feel like shit (ok, dont have to mention how i feel as family can see it clearly now, i lie in bed with my eyes closed but not able to sleep, i get up occassionally to go to the toilet, i might come and join the living by sitting on the lounge which last 30 seconds then back to bed.

7) I have had a gut full, someone cut my head off (Now i can only force myself out of bed so i dont mess myself, i start praying abit more regularly for god to make me feel normal, i will even take feeling like crap. at this stage im lost and dont know what to do, i just lie there and ride it out, it only eases at night time when i up my normal dose of sleep meds and zonk out.

8) this is when the upped sleep meds dont work after having a gut full/chop my head off level, wait for it to pass which could take days, weeks or months etc
this is the definate bed bound 'Sophie Merza' stage.:Sign Help: :headache: :In bed:

I suppose i have only been at level 8 for a couple of days mostly, the longest has been a couple of weeks which was a while ago. Sometimes i have been at this level and just been comatosed, which in a strange sort of way is a relief as the pain and insomnia has gone but i cant move and dont need sleep meds, but becomes very frustrating!!! I think this is when my body shuts down and tries to recover, so could be a level 9.

These rating can bounce around from hour to hour, day to day etc.

Is this a good severity scale or what??

 

[Nielk]

I would laugh if I wasn't ate stage 7 right now,
You are very inventive and have a good grasp of how we all feel at different times.
Good job!

 

[maddietod]

By the time I got to "buggered" I was laughing out loud. You do have a way with words!

 

[heapsreal]

By the time I got to "buggered" I was laughing out loud. You do have a way with words!

My way with words dont come from the english language but a hybred called Aussie lingo. I try to have a good sense of humor, if i didnt i would be a mess, lol.

Also can someone help me out with better pictures for my severity scale. Its got to look good before i take it to the patent office.

cheers!!!

 

[taniaaust1]

I suppose i have only been at level 8 for a couple of days mostly, the longest has been a couple of weeks which was a while ago. Sometimes i have been at this level and just been comatosed, which in a strange sort of way is a relief as the pain and insomnia has gone but i cant move and dont need sleep meds, but becomes very frustrating!!! I think this is when my body shuts down and tries to recover, so could be a level 9.

Yeah there is definately a level 9. Level 9 is easier then level 8 as one is so bad that one is beyond much of the time of even knowing how bad one is. (that's the state when one is like comatose for days.. lost complete awareness or has so bad awareness that it dont maintain long at all). Level 9 is a "half dead" state comparable to those on last few days of death bed (I wouldnt be surprised if that was true too). One know longer knows much nor cares much. You arent connected to the body much anymore.. not there (probably out of body having fun elsewhere).

I was in 8 for many many months in the past. With that one.. one can expect to be suicidal too (I'd be surprised if one wasnt).. as its very unbearable, hurts far more then tollerable and basically anything is better then that state even death better. Give me level 9 rather then a level 8 anyday.

Im today having a day between your level 2 and 3 . (exhausted from yesterday so today is a "do nothing day" but okay in all other ways)

 

[heapsreal]

I suppose the problem with level 9 is if it go's for too long is when people die of ME/CFS from things like dehydration and renal failure etc but im glad u understand me that level 9 is sort of a relief as we are that comatosed the pain and frustration is gone.

The last 2 days i have been running at level 5, 6 and 7 and have to work the next 5 days aarrgghh. I have just had 2 weeks holidays and sat here vegetating/resting which doesnt seem to help. I dont know how im going to work yet, im hoping a good nights sleep and starting lyrica again will help. I have tramadol on hand which i will take which i find quite good but saving it for when i have to work. needing money sux. When i take the great australian sickie, i dont go fishing or drinking beer like alot do, i just lie in bed and wish i was taking a sickie to have fun. WHat i hate is work question those who take too many sickies and i have held off telling them i have cfs. When the time comes i suppose i will tell them i have an immune defiency as i have tests to verify it to a certain degree, fingers crossed that i can hold off and start valcyte and start improving and no die off symptoms????

cheers!!!

 

[taniaaust1]

oh heapsreal, I had no idea that you were still trying to work.

Have you had the job a long time?

 

[heapsreal]

oh heapsreal, I had no idea that you were still trying to work.

Have you had the job a long time?

22 years now at the same job. its a financial thing i have to weigh up. I can cut back abit on work but then working part time i get mucked around which is an added stress as well but may need to go down this line. I have looked at disability but i think with my assets and wifes wage (which isnt alot)it will be an uphill battle plus the pension is two fiths of bugger all and then have to fight to get payed for cfs diagnoses. My assets/investments arent alot but enough to bugger attempts at disability and these investments i made with not being able to work forever with cfs in mind and i need 10 years before its worth anything of significance. 2 kids are expensive if anyone wonts them. Even trying to down grade is hard as the housing market isnt really good so hard to sell and alot of money is lost when selling due to fee's and taxes etc and the stress of doing this too. Also antivirals do help me and when i have stopped i have gotten alot worse and because this and other meds i use arent covered by any insurance, this is a big burden to our budget. no win situation.

Sorry for dribbling on abit, but without sounding sexist, this is the perspective of a family man who is the bread winner. I suppose im fighting tooth and nail until me/cfs forces my hand ie until im a level 7 all the time on my new CFS severity scale where i need my head cut off, lol. Im putting my hope in valcyte but also dont want to get too hopeful either just incase.

cheers!!!

 

[heapsreal]

Work wise i have gone backwards and forwards between fulltime, casual and part time, several times since cfs.

 

[viota]

im a level 8 most of the time.Im so tired i cant function properly.I barely have enough energy to eat sometimes.

 

[heapsreal]

im a level 8 most of the time.Im so tired i cant function properly.I barely have enough energy to eat sometimes.

Sorry to hear that viota, hope things improve soon.
does my severity scale seem easier to use then others created by doctors.
The scale is humorus but unfortunately real, and i think descriptive enough for all of us to understand.

 

[viota]

thanks i hope so too

 

[heapsreal]

Got through my first day of work thanks to tramadol which kept me at that low level crap feeling today, driving home though the tramal was wearing off, at the high level crap feeling/headachey. Lyrica last night helped also and maybe helping me get through today, im only using it at night to help with headaches which interfere with trying to sleep and it helps with sleep quality in general. But its all symptom management until i get onto some valcyte in about a month.

cheers!!!

 

[WillowJ]

more power to you, heaps

 

[heapsreal]

day 2 over its getting tougher especially with insomnia kicking in. All i can say is the tramadol has been a big help, i can really feel it when it starts to wear off, i dont like being reliant on it to function but it works. If i can get some descent sleep hopefully i can keep going abit more and as im working the weekend which is worth alot more money i want to get through those but will probably take monday off sick for vegetating. I think i will just keep taking sick leave until they say something, then i may get a letter from my doc outlining my condition. There is a salary continuince insurance we have through work which pays 75% of your wage for 2 years, so i may look into that.

 

[taniaaust1]

2 kids are expensive if anyone wonts them.

just dont try to sell them on ebay.
(there was a news article this morn on someone who ebayed her kids for a joke and now is in trouble).

 

[merylg]

LOL heapsreal...your new improved CFS scale definitely has an Australian touch! I guess living on Tramadol puts me currently at a Level 4...and allows me to fake a Level 3 day occasionally!!!...which I then pay for with a few level 5 days!!!!!

 

[heapsreal]

Its interesting to hear how others fluctuate alot like me, almost a daily occurrence. Sort of shows how managing symptoms can improve your severity. I know without tramadol and sleep meds i would be at a lot lower function.

cheers!!!

 

[taniaaust1]

Its interesting to hear how others fluctuate alot like me, almost a daily occurrence. Sort of shows how managing symptoms can improve your severity. I know without tramadol and sleep meds i would be at a lot lower function.

cheers!!!

I think that is one thing which needs to be brought to public attention more.. that ME/CFS may be helped by the "right treatment" for the person instead of the myth out there that not much at all can be done for ME/CFS (except those two treatments most of us disagree with)

I think any offical ME/CFS guidelines being put out in future need to make that clear and maybe then more doctors would be out there willing to help us trial more things to try to get improvement. I wish they'd write new Aussie ME/CFS guidelines with good suggestions.

 

[heapsreal]

It seems the medical establishment are scared to authorize chronic use of sleep and pain meds unless you have cancer or some terminal condition, even though they do do it anyway, but would be good for it to be approved though.