Author Topic: Stanima Low Still After More Than 15 Years.  (Read 8388 times)

thecakes

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Re: Stanima Low Still After More Than 15 Years.
« Reply #15 on: April 04, 2006, 02:52:13 pm »
  My stanima?  I feel 20 years older.  I went through this operation and menapause at the same time.  Thats no picnic.  Double wamy.

Captain Deb

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Re: Stanima Low Still After More Than 15 Years.
« Reply #16 on: April 04, 2006, 04:30:11 pm »
WoW!--me, too!  Menopause and AN surgery at the same time--totally double whammy!
I'm wiped out today--went to the gym for 45 min work-out, then to Lowe's for paint stuff, then to grocery store.  Major wonkyhead.  What stamina?  It takes me all day to do what I used to do before lunch!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
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Larry

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Re: Stanima Low Still After More Than 15 Years.
« Reply #17 on: April 04, 2006, 07:20:14 pm »
hey guys, speaking right outa tune here coz I don't know much about the menapause except when my wife gets it, I'm outa here!!!!!!

It might just be the fact that more women seem to identify with stamina isssues than guys so wondering if there is a link to ye old hormones and whether a top up / change in level is needed. I'm talking about the blokes hormone now not the female one.

But hey, I'm just a mere male mortal but sounds logical to me.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Battyp

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Re: Stanima Low Still After More Than 15 Years.
« Reply #18 on: April 04, 2006, 10:48:52 pm »
Deb I really love the "wonky head" description.  Do you think they'll understand it on my disability form?   :D

I think I'm on the heels of you two with the menopause thing.  Will find out more next week.  Hormone imbalances suck!

Kathleen_Mc

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Re: Stanima Low Still After More Than 15 Years.
« Reply #19 on: April 12, 2006, 07:22:05 am »
Laz: I don't have the hormone issue though and I still have the low stanima. I am only 38 now, I was 23 when I had the surgery and really my energy never really got back to what it was before the orginal surgery. I have lived my life forcing myself to do a lot of "what has to be done" and some days I get really agnry that I feel this way. I have two wonderful children and a great husband but when it gets to dinner time, if I've been home and up all day, I just want to go to bed!
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: Stanima Low Still After More Than 15 Years.
« Reply #20 on: April 12, 2006, 11:54:38 am »
Kathleed do you find on the days you want to go to bed by dinner time that the next day is a bear too?  I was completely wiped out yesterday and had my jammies on and was in bed by 7:00 today I'm so tired and my speeck is horrible even after just waking up from a 2 hour nap.  One day I think I can handle going back to work and the next day there's no way...of course today would be the day the benefits department calls to check on me and ask when I'm coming back full time..>UGH

Kathleen_Mc

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Re: Stanima Low Still After More Than 15 Years.
« Reply #21 on: April 13, 2006, 04:07:08 pm »
I essentially feel exhausted everyday all day and there is very few days that I don't. I get the rare day when I feel O.K. just about 7 pm and then it hits. My poor children, I haven't the energy to do the things they need to do....like go to the park (I do it but not near enough and they have to leave on my terms not thiers). There's many an evening that my son has to watch his shows on my bed after I put my daughter to be around 8 pm and he's awake until the end of his shows and tells me good night and turns off the tv around 10! I am irritable because I am so tired and I just want to sleep all the time. It's not my mood, that is to say the depression is well under control, I just don't have the energy to do anything I don't have to do. Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Larry

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Re: Stanima Low Still After More Than 15 Years.
« Reply #22 on: April 14, 2006, 05:41:01 am »
Kathleen,

Have you had a blood test recently - like checking your iron levels?

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Kathleen_Mc

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Re: Stanima Low Still After More Than 15 Years.
« Reply #23 on: April 14, 2006, 06:13:58 am »
Laz: Iron is fine and so is all the other obvious things, I have been thinking of getting more blood work done for things that aren't so obvious (like B12 etc.). I have been like this for so long though I'm almost too tired to be bothered (wsad ain't it?). I have addressed this with my doctor's before and they all seem to feel it's just the way it is now (since the orginal surgery). I always tell myself if I didn't have to work full time I'd be better off and have more energy for all the other things is life but I really think that's just fooling myself, I have things I must do and that is what keeps me doing them, if I didn't have to do something I wouldn't have the energy to do it.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Cheryl R

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Re: Stanima Low Still After More Than 15 Years.
« Reply #24 on: April 14, 2006, 07:54:08 am »
Have you had a thyroid  test done also?          Any possibility of even it being chronic fatigue syndrome also?                Are you on  an anti-depressant and if so tried changing to a new med to see if works better?          Will keep thinking of other remote possibilties.         
                                      Cheryl R.
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

luv2teachsped

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Re: Stanima Low Still After More Than 15 Years.
« Reply #25 on: April 14, 2006, 07:16:11 pm »
Kathleen- 15 years!   Oh I feel for you!  I am coming upon 1 year and am still exhausted.  I have been sick with everything under the sun this past year and am hoping to feel better soon.  I could sleep my life away.. I work full time also, but do not have kids at home anymore, and I am on anti-depressants! I wish the best for you! Luv2teachsped
3cmx3cm/translab 5/05
University of Michigan
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ppearl214

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Re: Stanima Low Still After More Than 15 Years.
« Reply #26 on: April 14, 2006, 07:24:23 pm »
been lurking this thread.. have no clue what to say, but send hugs to you all.
xoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kathleen_Mc

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Re: Stanima Low Still After More Than 15 Years.
« Reply #27 on: April 16, 2006, 07:16:24 am »
My thyroid has been checked a few times and is OK. I have been on and off antidepressants for a majority of the years and the one I'm on is just fine....when that's out of wack I actually can't sleep at all and have major anxiety and panic attacks. I don't know how a doctor comes to the diagnoses of Chronic fatigue syndrome and I believe that is only after nothing else can be found wrong and the feel they need to give the person a diagnoses, no treatment for that either.( at least that I have seen effective). I was really just wondering if there is anyone else out there that has had this happen and what ended up being the problem (to help me make suggestions to my GP). Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Larry

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Re: Stanima Low Still After More Than 15 Years.
« Reply #28 on: April 16, 2006, 07:25:35 am »
Kathleen,

If you have Chronic Fatigue Syndrome then there is hope. I'm not sure if there is a cure but there was (retired now) a footballer here who was diagnosed with it. He trained and played pretty vigorously so I think he was "managed". I do know that he didn't train 5 days a week like the other players and he didn't always fly coz that seemed to drain him but he did manage it pretty well. It knocked him around for around a year until they (the teams medico's) actually worked out what to do.

Maybe, you need to research it a little so you can manage the problem. By managing, I guess that means doing the right things and not the wrong ones. Got nothing to lose as I see it but if this guy who played till 36 could play professional footbal with it, then there is hope. The footbal is Aussie Rules and in case you are unfamiliar with it, its very different to gridiron. This guy would have run around 6-8 kilometres a game and be bumped and tackled a number of times. You got to be really fit to play this game.

cheers


Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

ppearl214

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Re: Stanima Low Still After More Than 15 Years.
« Reply #29 on: April 16, 2006, 08:54:37 am »
Hey Kathleen,

I was diagnosed with Fibromyalgia (sister syndrome to CFS) a few years back.  Physcial energy a total wash on me... I have some info if you want to help with rest, diet and exercise.  I'm more than happy to share if of interest to you.  Sending you hugs and wishes for a terrific holiday today!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"