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Old 02-06-2013, 12:19 AM   #1636
mommasita
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Originally Posted by SeaSpray View Post
I will probably end up getting fired from my new job. I had to call in sick again tonight. I worked all last week, but the week before I only worked 2 days. They have a strict attendance policy.

I have my rheumatologist appt tomorrow morning. Yesterday was actually a pretty decent day so I thought that I was going to start feeling better, but today is the worst day in a very long time; IBS, fibromyalgia, arthritis, headache, etc. *Everything* hurts. BLAH. Shoot me now.

I hope everyone is feeling ok.
It is so hard especially with a new job. Sorry you are having such rough times. It seems winter plays such havoc, and make things so much worse. Good luck with your appointment. I was happy I was at my worst when I saw him (if that makes sense) because this way I actually said what needed to be said, as I usually am not all that good at that part.. Hugs to you
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Seaspray hang in there. I remember the day that I got a note from my boss saying I needed to plan my time better because I missed a deadline....I was in the ER! Not sure how you pencil that in in advance That was the day my Dr put me out of work. It was financially very hard. We lost all my income at a time when DH had to take a 30pecent cut for new job he needed to get his social work licence. It was a crazy sad time but I really feel that working so hard for so long was what landed me bedridden for more than two years...Is it time to take a break from work even if its temporary disability?

Your not the only one all over the place. I had an hr last Saturday I felt so good I was dancing. That lasted only until the next weather front came in an hr or so later. This week has been complete up/down. Getting lots of shopping/errands done then CRASH by 4pm Still better than 15 days of migraine!

Pain free vibes and Pixie dust to all!
The weather really does suck, and make this soo much worse. I am with you on the crashing. I had pysio today, and did a load of laundry, ending up on the couch for 2 hours and picking up supper. Had it all out to make and everything.. Couldn't do it. Up now with the monthly usual nightmare lately, and go in Tuesday to see the Dr about a decision on this.

I see the Neuro on Thursday of this week. I am just about seen by every Dr in the city it is starting to feel like.

Can't do this pysio, and it was my goal. It is just kicking my butt royally.

Hugs,, and energy to all.
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Old 02-06-2013, 09:23 AM   #1637
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Quote:
Originally Posted by mommasita

It is so hard especially with a new job. Sorry you are having such rough times. It seems winter plays such havoc, and make things so much worse. Good luck with your appointment. I was happy I was at my worst when I saw him (if that makes sense) because this way I actually said what needed to be said, as I usually am not all that good at that part.. Hugs to you

The weather really does suck, and make this soo much worse. I am with you on the crashing. I had pysio today, and did a load of laundry, ending up on the couch for 2 hours and picking up supper. Had it all out to make and everything.. Couldn't do it. Up now with the monthly usual nightmare lately, and go in Tuesday to see the Dr about a decision on this.

I see the Neuro on Thursday of this week. I am just about seen by every Dr in the city it is starting to feel like.

Can't do this pysio, and it was my goal. It is just kicking my butt royally.

Hugs,, and energy to all.
I'm so glad my Dr 20 yrs ago told me flat out that physical therapy would make me worse. That the purpose is to make progress weekly and therapists just couldn't help but push us Fms pts too hard. I still bought a treadmill and tried for a yr to improve weekly..Of course that didn't work.

Dh's new Dr had a great explanation.... of course right now I cant remember everything she said What I do remember is that she said when they were running the FMS clinic they found during sleep studies pts never got to full rem sleep even when they thought they slept well.( I haven't dreampt in nearly 20yrs..used to have very active dreams). When that happens your body cannot complete the vital functions to repair cells. This means we heal slower (I know breakouts take weeks to heal instead of days). This effects exercise in that we create small tears in muscle etc, we deplete energy within the cells when we exercise and if we don't heal at night we get worse. She also explained that while many of us have normal thyroid levels Drs rarely ever test for the hormone that regulates the t level that enters the cell. Apparently there is a hormone that acts as a gate keeper. When present it stops T levels from entering the cells many of us have high levels of this thyroid hormone makeing the normal thyroid level irrelevant and us tired and unable to recover.

Hope this explanation makes sense

Sending pain free vibes and pixie dust to all!
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Old 02-06-2013, 10:21 AM   #1638
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Ok my explaination was bugging me so I went digging. The hormone the Dr refered to is Reverse T3.Look at the symptoms....does this look like all of us or what? Here are two explainations the first from a thyroid web page the other from a discussion board. Why I was never tested for this I dont know. I saw "the best" endocrinologist in Pittsburgh several years back but never got this. Our hospitals rate in the top 10 in the country so you think I would have gotten a more thourough exam since it had been going on for 15 yrs and on my Dads side of the family there are 4 siblings 2 had hypothyroidism requiring removal of their thryroid and a 3rd had thyroid cancer. Can you say family history???!!!!


http://www.stopthethyroidmadness.com/reverse-t3/

http://forums.webmd.com/3/thyroid-di...ange/forum/290





I have lots of energy right now BUT......getting a migraine I have all this laundry housework I am eager to do but DO NOT want to trigger major Migraine episode. Excedrine, ice and Coke better work soon. My eyesite is getting more blurry which in not a good sign GRRRR
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Old 02-06-2013, 10:43 AM   #1639
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I'm so glad my Dr 20 yrs ago told me flat out that physical therapy would make me worse. That the purpose is to make progress weekly and therapists just couldn't help but push us Fms pts too hard. I still bought a treadmill and tried for a yr to improve weekly..Of course that didn't work. !
Physical therapy and exercise does work, and it's the only thing that keeps me going. The physical therapist *must* be trained in how to massage a person with fibro and also how long. Both are *very* important. Also, my dr. has me exercising 5-7 days a week. I use a elliptical machine or I go for a walk or bike ride. Does my body want me to? No, it doesn't, but I sure feel better in the long run to be able to function and stay as limber as possible.

I have NO intention to giving in to fibro, and will stay as active and productive as possible for as long as I can. I'm thankful to have an understanding dr. that encourages us to not give in, but to push back as much as possible and stay positive.
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Old 02-06-2013, 10:59 AM   #1640
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Physical therapy and exercise does work, and it's the only thing that keeps me going. The physical therapist *must* be trained in how to massage a person with fibro and also how long. Both are *very* important. Also, my dr. has me exercising 5-7 days a week. I use a elliptical machine or I go for a walk or bike ride. Does my body want me to? No, it doesn't, but I sure feel better in the long run to be able to function and stay as limber as possible.
It works only when I'm stable. Last year I was able to exersize 5 days a week for 4 months and it felt great. I have learned what my body feels like when my body can do that... usually in 6 month cycles evey once in awhile. I was an athlete when I got sick. Power walking 5 miles a day, playing volley ball and bowling in legues. I lettered in HS sports which was a big deal as girls just got the right to play as I was entering middle school. I know how to play hurt and figh through pain. So I MISS exersizing and my size 8 body. The problem is many of us are not stable or in flares and then it doesnt work. My migraines are frequently triggerd by exhersiton and when you have them 2-4 times a week that is a big deal. I really think it depends on how severe your FMS/CFIDS is and how stable you are in the moment. Exersizing in the begining for me added to my time I was bedridden and literally crawling to get to the bathroom. When I started considering daily activities a form of exersize I started to get better. The fact is after 20 yrs I've learned that when I push I crash period.

I'm glad that it works for you thats great!

Everything is worth trying at least once in fighting this disease.
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Old 02-06-2013, 11:35 AM   #1641
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North of Mouse forgot to say

I think this is the first time you have posted here.

If you look back I think you will find all the posters here are fantiasitc. I never joined a FMS board before because they seemed to be a cosntant pitty party. I think the pixie dust makes all the defference Here I hope you will find us very positive and supportive. There are alot of posts re new treatments, possible causes like XMRV and the thyroid post above. Most of us use this a a sounding board so we can get better treatment and get the frustration out of our system here so we can stay positive and focused at home/work. Everyone needs a place to vent and here everyone GETS IT

Well the weather just changed and my head has cleared Off to get laundry done
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Old 02-06-2013, 11:49 AM   #1642
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Thats for that Tigg. It does make sense, but I will read fully once the fog clears. It is that type of day. I need some huge glasses..LOL.

Going to the movies tonigiht, my gf has a free pass for some new one which I forget the name..LOL...Haven't been doing a thing with a soul for months, so hope My head stays as small as it is now, and at least I get out of the house for some type of social activity.

Glad yours has cleared, and hope you have a great day.

North of Mouse. I understand what you are saying. I have never once given in, even on the advise of my surgeon's and phys. We are a resilient bunch as Tigg stated. I had to wait this long for an attempt at physio, and my dr wished me luck, admiring my courage. ... I am about 2 months in, and will wait another month giving it a go, and then I think I am really throwing that flag in, and trying something else. Glad to hear about you though. I love positive stories. I also have Sjrogen's, and it really wipes out your immune system daily.

Massages are a no no for me with my brain surgeries, and spine surgery. My Chiari is back in full swing, and there is such a list of DON'Ts, I need to find the DO List.. They don't know enough about this yet, and I hope and pray that will change in the future.

Have a great day everyone. SNOW this weekend.
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Old 02-06-2013, 04:09 PM   #1643
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North of Mouse forgot to say

I think this is the first time you have posted here.

If you look back I think you will find all the posters here are fantiasitc. I never joined a FMS board before because they seemed to be a cosntant pitty party. I think the pixie dust makes all the defference Here I hope you will find us very positive and supportive. There are alot of posts re new treatments, possible causes like XMRV and the thyroid post above. Most of us use this a a sounding board so we can get better treatment and get the frustration out of our system here so we can stay positive and focused at home/work. Everyone needs a place to vent and here everyone GETS IT

Well the weather just changed and my head has cleared Off to get laundry done
Thanks! I guess I have been fortunate as my headaches are occasional, and not migraines. Sorry that you have them so often. I do have flares when I have to drag myself from place to place

I don't always *win the battle* to make myself do some form of exercise, but the days I can it is worth my while. All therapists are not understanding, and know how to handle fibro patients, but the one I used is gentle and very aware of *dos & don'ts*. She also stresses drinking lots of water after her sessions, also when I exercise - said toxins are released and need to be flushed from the body.

It took 10 years for dr.s to finally diagnose me. I really thought I was nuts, or a hypochondriac (think they did too). This was 19 years ago, and of course it's part of me, but at least I (and they) know it's not all in my head anymore.

The best to you, and mommasita also
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Old 02-06-2013, 06:10 PM   #1644
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hi everyone:

first off, please excuse any typos because im typing with splints on both hands. saw my rheumatologist this morning and he reminded me that he had diagnosed me with cdarpal tunnel a cpuple of years ago but i never went and got the braces/splints/. so this tim,e he fitted me with them right there in his office. he said towear them at bedtime and any other time tht my hands finders wrists and arms hurt. and they def. hurt when i'm on the ;laptop. so far so good, except for the ty[ping. lol

so regarding the RA/lupus: he put me on something called plaquenil to treat the pain and inflamation from RA/lupus. he said it should also help my pklantar fasciitis tpp. however, plaquenil takes 2-3 mionths before you feel any benefits so he also put me on prednisone to take for 3 months, then taper off. i'm feeling guardedly optimistic.

also, i'm taking some time off from work to see if this can get all sorted out so that i can stop taking days off here and there. not sure how long i'llbe out for, maybe a few days or a week or two.

have any of you taken plaquenil or prednisone? did it help?

hug and pixie dust to all.
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Old 02-06-2013, 09:38 PM   #1645
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Quote:
Originally Posted by North of Mouse View Post
Thanks! I guess I have been fortunate as my headaches are occasional, and not migraines. Sorry that you have them so often. I do have flares when I have to drag myself from place to place

I don't always *win the battle* to make myself do some form of exercise, but the days I can it is worth my while. All therapists are not understanding, and know how to handle fibro patients, but the one I used is gentle and very aware of *dos & don'ts*. She also stresses drinking lots of water after her sessions, also when I exercise - said toxins are released and need to be flushed from the body.

It took 10 years for dr.s to finally diagnose me. I really thought I was nuts, or a hypochondriac (think they did too). This was 19 years ago, and of course it's part of me, but at least I (and they) know it's not all in my head anymore.

The best to you, and mommasita also

Thank you! I certainly hear you on that. It is just sometimes what we need, to put a name to something. To know there is a cause, and we are not not hypo's... One Dr told me I was just lazy, and needed to lose weight, and wasting the Gov money on MRI's. A week later my brain malformation was found. I wasn't happy, but relieved to know it was not made up... I am at my smallest in years, and still have all the FIBRO, if not worse, so for me it honestly had nothing to do with size. Happy to hear your headaches are occasional. Good thoughts to you.
Quote:
Originally Posted by SeaSpray View Post
hi everyone:

first off, please excuse any typos because im typing with splints on both hands. saw my rheumatologist this morning and he reminded me that he had diagnosed me with cdarpal tunnel a cpuple of years ago but i never went and got the braces/splints/. so this tim,e he fitted me with them right there in his office. he said towear them at bedtime and any other time tht my hands finders wrists and arms hurt. and they def. hurt when i'm on the ;laptop. so far so good, except for the ty[ping. lol

so regarding the RA/lupus: he put me on something called plaquenil to treat the pain and inflamation from RA/lupus. he said it should also help my pklantar fasciitis tpp. however, plaquenil takes 2-3 mionths before you feel any benefits so he also put me on prednisone to take for 3 months, then taper off. i'm feeling guardedly optimistic.

also, i'm taking some time off from work to see if this can get all sorted out so that i can stop taking days off here and there. not sure how long i'llbe out for, maybe a few days or a week or two.

have any of you taken plaquenil or prednisone? did it help?

hug and pixie dust to all.
Ugh. Poor thing.. I was diagnosed with that, and also did nothing. Hope it helps you my dear.

Maybe time is what you need (off work I mean). That way you can not stress in regards to that. Just worry about you, and not the job.

I don't believe I have ever tried either of those. Hopefully someone else has some input..
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Old 02-07-2013, 12:43 PM   #1646
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Quote:
Originally Posted by SeaSpray
hi everyone:

first off, please excuse any typos because im typing with splints on both hands. saw my rheumatologist this morning and he reminded me that he had diagnosed me with cdarpal tunnel a cpuple of years ago but i never went and got the braces/splints/. so this tim,e he fitted me with them right there in his office. he said towear them at bedtime and any other time tht my hands finders wrists and arms hurt. and they def. hurt when i'm on the ;laptop. so far so good, except for the ty[ping. lol

so regarding the RA/lupus: he put me on something called plaquenil to treat the pain and inflamation from RA/lupus. he said it should also help my pklantar fasciitis tpp. however, plaquenil takes 2-3 mionths before you feel any benefits so he also put me on prednisone to take for 3 months, then taper off. i'm feeling guardedly optimistic.

also, i'm taking some time off from work to see if this can get all sorted out so that i can stop taking days off here and there. not sure how long i'llbe out for, maybe a few days or a week or two.

have any of you taken plaquenil or prednisone? did it help?

hug and pixie dust to all.
Seaspray

So glad you can take a break a try to get your bearings. I have never been on these drugs buy my mil was on pregnisone and it caused alot of water retention. Make sure you drink alot of fluids and watch your salt intake. Sassy water posted here awhile back can help with fluid, lemon water, lime water can all keep retention down.

Well i'm feeling better today! Think I have a new crazy symptom. Had dental appointment for a cavity today...cavity was nowhere to be found. Apparently the pain/cold i was feeling in my tooth every time i take a breath is a nerve sensitivity in my tooth...Great now I have fake out tooth aches


Hope you all are having a good day!
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Old 02-08-2013, 03:31 PM   #1647
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Tooth aches are just hard to deal. Happy you have no cavity, but totally get you on that other point.

Rough appointment yesterday due to the fact that I forgot what floor the Neuro was on THREE TIMES. I went down they told me, I tried again, and so on. They found me roaming around looking like an in patient... Time for some medical alert bracelets. Or a sticky saying, " HI, I AM MOMMA, IF FOUND PLEASE RETURN". . Just kidding today about it, yesterday I wasn't.

Hope you are all doing ok, and fairing as well as you can in the storm. Snowing here, but seems we are getting off easy for once..

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Old 02-08-2013, 04:24 PM   #1648
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Well my toothache had babies lol now I have a couple teeth that are sensitive. Kinda blah day mostly because we have been dealing with irs for our private business. That would make anyone feel sick!

We are just getting a dusting of ice.. no snowmageddon here! YEA!!!!!! To my NE friends stock up on those pain meds and get the shovels ready! Looks like blizzard of 1978 all over again ..that year the backside of house across from us had snow over the roof!! We were snowed in for a week.

Painfree vibes and Pixie dust to all!
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Old 02-08-2013, 07:29 PM   #1649
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Well my tooth ache has had babies! LOL. Now three teeth feel that zing. Meanwhile a tooth on other side with a real cavity feels fine . At least here in Western PA we are just getting a smattering of ice.

For my fibro friends in NE stock up on the pain killers and man the shovels! Snowmagedden is comming! Looks like one like we had up there in 1978. That year the house across from us had snow over the roof! Snowed in for more than a week.

Stay warm and pain free.

Pixie dust coming your way from pa and (((HUGS))) too
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Old 02-08-2013, 07:39 PM   #1650
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Sorry for dbl post. First time i posted said it dbl posted and nothing was here .this time it just wouldn't run through and here are two posts

My phone and the Dis dont like each other today
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