Re: HOW ABOUT OUR OWN SYMPTOM LIST???

[Guest guest]

I'm all for it! Shouldn't be THAT difficult to compile and very informative!

Jane

ferynnghee wrote:

The actual symptoms listed as the 'official' ones we are supposed to

have I find rather wanting.

I KNOW that through the time I have had this (meaning ME and fibro)

I have had some symptoms which left of their own accord for reason of

treatment (or mstery) and then there are the Enduring Ones. (I think we

all have a special place in our hearts for THOSE.)

It would be cool if we could somehow compile (perhaps with help

from the owners or volunteers of the site? a survey?)a list of symptoms.

[Guest guest]

The difficulty, of course, is to try to determine WHICH symptoms got

with WHICH disease! I'm becoming more and more convinced that what we

are dealing with is different faces of the SAME disease rather than a

host of related ones.

For me ...

Intermittant " brain fog " (aphasia, debilitating mental slowness,

episodic mental absenses, etc.)

Intermittant burning in skin that begins with itchy feeling and then

rapidly goes to fiery (spray-on Benedryl DOES seem to help if used

fast enough ... usually starts on neck, chest, face)

Intermittant ligiment aches over joints (especially when I've been

over-doing it, but NOT where it would be expected ... overwalking

should not cause thumbs and (the next day) elbows (but thumb is

better!)to ache ... weird!)

IBS ... only at the most inconvenient times.

Intermittant feeling of bone spurs in feet (none found, especially

first thing upon rising).

Easy bruising from unknown etiology, despite an INR test result of 1.6

(I'm on Warfarin from clotting after surgery, but they cannot GET my

INR up OVER 1.6 ... therapeutic is 2.0 - 3.0 ... and the bruising and

broken vessels have been going on for years, so not result of Warfarin)

Easy clotting.

Horrendous headaches.

Over expansion and constriction of blood vessels (like Raynauds) ...

lost a wedding ring that way .

Mottling of the hands, and swelling intermittantly.

Hot flashes (no, not menopausal ... been there, did that, already)

Points of tenderness (only 18???) ... sometimes all on, sometimes a

few missing or migrated.

Sexual disfunction.

Lousy libido.

Lack of energy and easy fatigue ... occasional OK feeling days when

over-doing to " catch up " becomes a difficulty.

Teeth-grinding.

Easy frustration, depression (with cause!), surface emotions that are

difficult to rein in before expression ... both joy and tears.

Gawd-awful leg and foot cramps, mostly at night (quinine pills help).

Need to urinate at night and IMMEDIATELY upon waking.

Intermittant insomnia.

Feelings of hopelessness (might be explained by the condition itself).

Feeling of vascular ache, especially in neck.

Episodes of unexplained, or under-explained, heart pain ... finally

diagosed as a vascular constriction issue, but one artery permanently

smaller, and recurrant inflamation of the pericardium.

Degenerative spine.

Degenerative arthritis in joints.

Frequent loss for correct word.

Lapses in memory ... like mini-seizure (electrical micro-bursts?)

Intermittant itching.

There's probably more ... but there's a start!

[Guest guest]

AH!

Night sweats and chills (sometimes NOT associcated wit hthe sweats,

but occuring all on their own)

Frequent low-grade fever (or sub-normal ... most all the time)

Slurring and uneven gait (even when not cramping of " bone spurring).

Intermittant feeling of dizziness, nausea, etc ... like inner-ear

issue ... feels like a RABID hangover (without the party beforehand)

.... motion sickness medication does help.

Lack of focus and " wandering focus " ... ever see " Finding Nemo? " I am

Dorie on the wandering days. Middle of SERIOUS business discussion,

and going along just fine, like my old " command self, " and then in the

middle of it ... " Awww, look at the pweddy widdle kittie! "

More to come as thought of, I'm sure.

[Guest guest]

I'm interested too! Sounds like a good idea!

Whitney

>

> I'm all for it! Shouldn't be THAT difficult to compile and very

> informative!

> Jane

>

>

> ferynnghee <razorbkdog@... <razorbkdog%40aol.com>> wrote:

> The actual symptoms listed as the 'official' ones we are supposed to

> have I find rather wanting.

> I KNOW that through the time I have had this (meaning ME and fibro)

> I have had some symptoms which left of their own accord for reason of

> treatment (or mstery) and then there are the Enduring Ones. (I think we

> all have a special place in our hearts for THOSE.)

> It would be cool if we could somehow compile (perhaps with help

> from the owners or volunteers of the site? a survey?)a list of symptoms.

[Guest guest]

Hi Peri:

Good start, I think I have all of these !!! plus more....

Jeanette

Re: HOW ABOUT OUR OWN SYMPTOM LIST???

AH!

Night sweats and chills (sometimes NOT associcated wit hthe sweats,

but occuring all on their own)

Frequent low-grade fever (or sub-normal ... most all the time)

Slurring and uneven gait (even when not cramping of " bone spurring).

Intermittant feeling of dizziness, nausea, etc ... like inner-ear

issue ... feels like a RABID hangover (without the party beforehand)

... motion sickness medication does help.

Lack of focus and " wandering focus " ... ever see " Finding Nemo? " I am

Dorie on the wandering days. Middle of SERIOUS business discussion,

and going along just fine, like my old " command self, " and then in the

middle of it ... " Awww, look at the pweddy widdle kittie! "

More to come as thought of, I'm sure.

[Guest guest]

Hi Peri,

You are doing well with this. I have many of these also.

Jeanette

Re: HOW ABOUT OUR OWN SYMPTOM LIST???

The difficulty, of course, is to try to determine WHICH symptoms got

with WHICH disease! I'm becoming more and more convinced that what we

are dealing with is different faces of the SAME disease rather than a

host of related ones.

For me ...

[Guest guest]

Ok question

" Lack of focus and " wandering focus "

Does your doctor give you anything for that.. Like adult ADD?

-- Re: HOW ABOUT OUR OWN SYMPTOM LIST???

[Guest guest]

Peri,

OMG, are you me????? The list you made sounds exactly like me, except for

maybe 1 or 2 things. For the longest time I thought I was going crazy. I have

all these WEIRD symptoms that don't seem to make any sense together, yet they

don't seem to be something everyone can relate to (they think I'm crazy). It's

so good to find a place that I can go to hear others LIKE ME that really

understand what it's like to have this frustrating disease. Thanks for being

here everyone!!

Peri wrote:

The difficulty, of course, is to try to determine WHICH symptoms got

with WHICH disease! I'm becoming more and more convinced that what we

are dealing with is different faces of the SAME disease rather than a

host of related ones.

For me ...

[Guest guest]

LOL- I hear ya!!!!

Peri wrote:

AH!

Night sweats and chills (sometimes NOT associcated wit hthe sweats,

but occuring all on their own)

Frequent low-grade fever (or sub-normal ... most all the time)

Slurring and uneven gait (even when not cramping of " bone spurring).

Intermittant feeling of dizziness, nausea, etc ... like inner-ear

issue ... feels like a RABID hangover (without the party beforehand)

.... motion sickness medication does help.

Lack of focus and " wandering focus " ... ever see " Finding Nemo? " I am

Dorie on the wandering days. Middle of SERIOUS business discussion,

and going along just fine, like my old " command self, " and then in the

middle of it ... " Awww, look at the pweddy widdle kittie! "

More to come as thought of, I'm sure.

[Guest guest]

I agree that it affects each of us differently, it is such a multifaceted

disease affecting, pretty much, every part of our bodies I think it would be

hard to get a list to fit everyone although I think it is an interesting idea.

Do our own research, it would be interesting to see how we compare if there

are certain symptoms in common as well as on set symptoms.

I am going to try to save all the ones I see and make a graft. I think it

would be an interesting experiment.\

If you would all put in the subject line att: Kate I will know to copy

them.

Thanks for the idea Jane.

Kate

[Guest guest]

I have kept a brief list so that when I go to my doctor, lawyer, whatever and

they ask what my symptoms are, I just hand it to them (along with my med list -

very handy and saves me the time of trying to remember everything - Like THAT " s

gonna happen LOL) Here Goes:

Exhaustion

Sweats, during the day only

Sleep Disturbances (either too much or Insomnia)

Muscle Aches and Weakness

Joint Pain

Mild to Severe Tremors (hands, head and legs)

Inabilty to sit, stand or walk for any length of time

Jaw Jerks Open with Incoherent Speech

Slurred Speech / Stutter

Word finding difficulty

Brain Fog

Lack of Concentration

Impaired Memory

Difficulty making simple decisions

Vertigo

Imparied Coordination (Hands and Gait)

Extreme Headaches (I almost miss my old Migraines)

Sharp, stabbing pain in my ears

Loss of Appetite

Weight Gain

Swollen Lymph Nodes

Sore Throat

DIfficulty Swallowing

Mild Fevers (99-101)

Depression

Mood Swings

Nausea/Bloating/Belching

Diarrhea

Thrush

And that's about it! Other than that, I'm just fine! LOL

Jane 1450