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Old 01-24-2013, 06:01 AM   #1621
tiggspring
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Quote:
Originally Posted by mommasita
Tried to find the pixie dust symbol, but can't. Rest assured it is sent to you and yours.

Ugg, on all the rest. I tried some anti seizure meds, hopefully it works better for you than me.

I cried ALLL day. The worst pain of my life combined with -43 weather, makes a body much worse. I faxed a paper to my dr for an imm appointment. THrowing in the white flag. I am done. Going to see about permanent disability, I just can't do it.

Tomorrow I see the psych before physio, and I am going to tell them I can't do the physio. I just can't. I am 0/10, so you can't take energy you dont have. Last weeks session left me with a 3 hour nap, and 2 days in bed. Now it feels like my legs are tree trunks. I know this is repetitive, but I just can't fathom keeping it going. I am the one who wanted to try, but I am fried.

Well, that was a long vent.. Thanks for reading if you did.

Gentle hugs to all.
So sorry you are having rough time, Physio a complete waste of energy in a flare. Wish more Drs would get that. Exercise when good daily activities AS exercise when in flair. Well walked around town in sun glasses last night LOL. Yep I'm so cool gotta wear shades at night. Feel hung over and have sore throat but no major headache just low hum. Hopefully yesterday was the end! This cold is a killer here too 20below w chill here 47 below well thats crazy.

If you can get disability take it we all wait too long to make that step IMHO.

Thanks for pixie dust! Will let you know what we find out.
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Old 01-24-2013, 11:38 AM   #1622
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Quote:
Originally Posted by mommasita View Post
I am sorry you have this on top of everything else.

You are in my thoughts and prayers.
Thank you so much

Quote:
Originally Posted by tiggspring View Post
Well I thought today might be the first migraine free day then bent over to pick up some clothes and WAM!! Now back on migraine train day 12 . Hope you are all feeling better and getting good news.


Pain free vibes and pixie dust to all.
Sorry about the migraines, that is not fun at all. Hopefully they will find something that works for you.

Quote:
Originally Posted by mommasita View Post
Tomorrow I see the psych before physio, and I am going to tell them I can't do the physio. I just can't. I am 0/10, so you can't take energy you dont have. Last weeks session left me with a 3 hour nap, and 2 days in bed. Now it feels like my legs are tree trunks. I know this is repetitive, but I just can't fathom keeping it going. I am the one who wanted to try, but I am fried.

Well, that was a long vent.. Thanks for reading if you did.

Gentle hugs to all.
I never understood how they can say how wonderful PT is when you don't have the energy for anything. And the cold, for me anyway, just makes it all worse. My back and shoulders have felt broken for the past few days. The doctor put me on a muscle relaxer temporarily hoping that will help.
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Old 01-24-2013, 06:52 PM   #1623
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Hi everyone

I've been reading a bit these last couple of weeks but the thought of typing everything that I *want* to type, to properly respond to everyone, is exhausting before I even begin. But, I'm going to give it a shot because all of you are worth the effort.

For me, in a nutshell, the last few months, and the last few weeks especially, have been the worst that I've ever felt in my entire life. I have an appt with the rheumatologist in a week and a half. I barely do anything these days. I had been using all of my daily energy for work, but last night I called in sick, and tonight is my day off. I actually went food shopping today and that was a huge accomplishment. lol

*hugs* and pixie dust to everyone. I've been thinking of all of you, and I apologise if I miss replying to anyone specifically.




Quote:
Originally Posted by ashmarie06 View Post
Hi! I'm Ashley! I'm 25 and I was diagnosed with fibro by my rheumatologist last Friday. I was diagnosed with Lupus almost a year ago. She has given me Flexaril to take before going to bed. Does anyone have any experience with this?

I'm glad I found this thread!
Hi Ashley, and

My doctor thinks I may have lupus. I'll find out more when I see my rheumatologist on Feb 5th.

Quote:
Originally Posted by ashmarie06 View Post
Sorry for the confusion! I was diagnosed with lupus last year, that is believed to have stemmed from a bad bad case of mono in 2006. I have been seeing a rheumy since then. Last Friday I went in because I'm flaring, and after doing some exams she believes that I also have the fm. This came as a total shock to me, but it does seem to make sense with my symptoms.

I feel like I have lost control of my body the last year. Even I don't know what is going on with it. :/


Thanks for the info about the flexiril. She gave it to me because I'm constantly exhausted. I could fall asleep and sleep 20 hours and go right back to sleep. She thinks that this is because I never get into a deep sleep, and that this could be causing more joint pain due to my muscles and joints not recovering at night? Who knows. I need to get my prescription filled tonight, maybe I will just stick with a 1/2 of one.
I take carisprodol (sp??) each night at bedtime. It's a muscle relaxer. I take it mainly to help with my teeth clenching during sleep which was causing me extreme pain, and caused several of my teeth to crack.

I've been sleeping almost continuously lately, with a couple of hours awake here and there. When I do fall asleep, the pain wakes me up and I have to move and change position, and try to fall back to sleep.

Quote:
Originally Posted by lilpig View Post
Hello ashmarie06! I am also on Flexeril I find that I only take it when I have a lot of "spine"and my ticking seems out of control. ( I have muscle spasm in my legs and face...well almost every where but they are the worst spots)

I do have migraines but ..most of the time I do not have pain I have other symptoms like flashing lights, vision issues, speech problems and confusion. I do get pain I can't really explain it.

My confusion though varies, its funny but not.. I have "normal" confusion now that I just have come to terms with. People say I have a look on my face that says "HUH?!" I just say its my thinking face. Then I have my migraine confusion and that looks more like y I hide from the world when I am like that. (Thankfully it doesnt happen that much.) Then have the I don't know what I am doing..how to use a key or putting things away.

I am on keppra for nocturnal seizures (sleep ones) and it does have the bonus of helping with migraines.

It is awesome to have people to talk to. I know I should take supplements but I dont know what lol.

Do you guys have food and other item sensitivities? I do! It seems like sometimes I know and then POOF!!!! something bothers me. I mostly have problems with food and smells. This "round" I am on right now (do you go between worse and betterish? I heard flare mentioned) I should have known was coming because I kept having issues with food.

Okay sorry to talk your ears off...Talk to you soon!!! Did I mention I am grateful!
I've had a lot of confusion issues lately, too. It's a bizarre feeling to be at work, talking to a customer over the phone, and while I'm talking to them I'm simultaneously thinking that I have no idea what I'm saying. LOL I guess the fact that the customers respond in a normal manner lets me know that my brain goes on auto-pilot or something. lol

Quote:
Originally Posted by TLSnell1981 View Post
My symptoms definitely worsened, first with peri menopause and then menopause.. No doubt, there IS a connection.

We were out of the country last month and my symptoms were drastically reduced. I know, stress plays an important role, but I noticed a big difference with my diet too. Our food is so full of chemicals. I firmly believe, the toxins cause more fatigue and pain.
There must be! I'm 51 and within the past year have started to miss periods for a couple of months, and at the same time my symptoms have worsened.

I agree with you regarding diet. I'm glad you felt better while you were away.

Quote:
Originally Posted by RNMOM View Post
Wow, I really ought to visit here more often, I learn so much. I can't imagine how many of you manage with young families. Mine are grown but still at home. At least they are helpful, for the most part. I'm sorry to hear of your diagnosis Carrie.

I just wanted to comment about the menopause issue. I began "falling apart" to a major degree when I was through early menopause. About 50. I remember in my 20's I had been taking birth control pills and started having migraines. I stopped them and didn't go back on them. In my early 40's I tried taking premarin and provera for my menopause sx and had a migraine for nearly 3 months. It didn't respond to anything. I also had elevated blood pressure from the hormones and the headache persisted after I stopped them. Antidepressants helped my menopause sx very well instead. A chiropractor got rid of the headaches. I went to him after PT couldn't fix my messed up shoulder upper back pain. He did it in one visit but I returned for followup for a few months. Headache gone, pain gone.

I probably should consider chiropractic again to see if it could help.

BTW, all my allergy, skin irritations, sensitivities began when I had my kids. Prior to that I had no issues with my skin. I think hormones have played a big roll in my life and wellbeing.

I am still having fatigue and haven't had my folllow up blood tests yet for my low white blood cell count. I was off my methotrexate for 2 weeks and it was the worst pain/misery I can remember. All that discomfort just crashed on me and even moving my fingers was too much. I had my dose last week and tomorrow and have already had 75% improvement. Thank goodness.
Our hormones seem to effect us in so many ways, and this menopause garbage is worse than puberty! lol

Quote:
Originally Posted by ashmarie06 View Post
Crazy question. Did any of you guys or do you ladies experience irregular periods? If so, is it related to your fibro?
I had irregular periods before I had my DSs. I wasn't ovulating. I went through infertiliy treatments for a few years before I had my sons. After my younger DS was born (almost 22 years ago), my periods became more and more regular and I got to the point where they were exactly a month apart. Until last March, that is! I missed my period for the first time in 2 decades, and actually went out and bought a pregnancy test! After 3 months I got it again, and had it monthly until December, and I haven't had it since.

Quote:
Originally Posted by mommasita View Post
I also have had them, and have no clue if it is related.

Two weeks ago, I needed some blood I had lost so much.

Am awaiting a call, I have given in and am going to have everything out..
Sorry to hear this. I hope that you can get some relief after the surgery.

Quote:
Originally Posted by mommasita View Post
Tried to find the pixie dust symbol, but can't. Rest assured it is sent to you and yours.

Ugg, on all the rest. I tried some anti seizure meds, hopefully it works better for you than me.

I cried ALLL day. The worst pain of my life combined with -43 weather, makes a body much worse. I faxed a paper to my dr for an imm appointment. THrowing in the white flag. I am done. Going to see about permanent disability, I just can't do it.

Tomorrow I see the psych before physio, and I am going to tell them I can't do the physio. I just can't. I am 0/10, so you can't take energy you dont have. Last weeks session left me with a 3 hour nap, and 2 days in bed. Now it feels like my legs are tree trunks. I know this is repetitive, but I just can't fathom keeping it going. I am the one who wanted to try, but I am fried.

Well, that was a long vent.. Thanks for reading if you did.

Gentle hugs to all.
Amen! Why do they think that when we have NO energy, that getting up and doing things will help? Do they think that we haven't already tried that?! I know I have! When we'e in a flare, doing anything more than necessary makes it worse. They really don't understand this.

Quote:
Originally Posted by tiggspring View Post
So sorry you are having rough time, Physio a complete waste of energy in a flare. Wish more Drs would get that. Exercise when good daily activities AS exercise when in flair. Well walked around town in sun glasses last night LOL. Yep I'm so cool gotta wear shades at night. Feel hung over and have sore throat but no major headache just low hum. Hopefully yesterday was the end! This cold is a killer here too 20below w chill here 47 below well thats crazy.

If you can get disability take it we all wait too long to make that step IMHO.

Thanks for pixie dust! Will let you know what we find out.
Tigg I'm so sorry about all those days of migraine. I hope it doesn't come back. I'm starting to wonder how much longer I can go on like this, regarding work.

Quote:
Originally Posted by carrie6466 View Post
Thank you so much



Sorry about the migraines, that is not fun at all. Hopefully they will find something that works for you.



I never understood how they can say how wonderful PT is when you don't have the energy for anything. And the cold, for me anyway, just makes it all worse. My back and shoulders have felt broken for the past few days. The doctor put me on a muscle relaxer temporarily hoping that will help.
The cold weather feels like "death". It makes all of our symptoms so much worse.

Quote:
Originally Posted by tiggspring View Post
Thanks for the support guys . My Dr and I were just talking about starting anti seizure meds for migraines this June. Need to wait til kids are out of school and do not need to be up everyday. (Thank god my kids are old enough to fend for themselves now) I tend to react badly to meds. Last med I took for migraines was a calcium channel blocker. I took half dose prescribed and blood pressure dropped so low prescribing Dr said I could have died if taken full dose (YIKES!). That was when I stopped treatment and decided natural was the way to go. Last new med in general was vioxx which made me crazy angry after taking for just a few times. I had never had an issue with pain meds so I thought it might not work but I wouldn't react.

My dh sees a FMS specialist we found while searching for lyme dr. She used to work at chronic fatigue clinic and uses their protocall. Problem is its expensive. More than $300 first visit and second visit and 125 for iv therapy. We might get reimbursed by insurance for some but not counting on it. She was recommended by student of dh who has FMS and got much better. Dh wants both of us to go but we can barely afford one. If it wasnt for student loans he wouldn't be going as we are looking at close to 1000 in the next few months. But he HAS to get better. We lose everything if he crashes like me . The fact is is I had lyme 20yrs ago the damage is done. Neurologically I'm toast. He can get better. No migraines, no real neurological issues and no PMS lol .

Well gotta go had a rough start this am. Woke up crying my head hurt so bad. DH offered to stay home but what can he do? Besides if I'm in for a 48 day run like in july/aug he cant stay home all that time. I find I have trouble contolling them after 7days...just want them to stop!!!! So tired of pain. Took lg does of excedrine. This am after stopping two days to be sure I wasnt on med rebound...Def not med rebound just crazy migraine run. Maybe when My cycle starts in a few days this will stop. One can hope!

Sorry for the long vent.

Sending pain free vibes and pixie dust to all.
I hope that your DH can get some relief. I feel the same way that you do, that I'm basically a lost cause at this point and age.
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Old 01-24-2013, 11:20 PM   #1624
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Seapray..I know what you mean. I felt like a louse because although I was reading and feeling for everyone, I just had no energy to respond. I would lie in bed feeling horrible about it all.

You are not a lost cause, none of us are. I think the winter just really throws us for a loop..My pain is tenfold. GIANT hugs to you.

Tigg: I hope your head got a little easier as the day went on. I wear shades ALL The time. With the Sjrogens I have photo sensitivity, plus it hides the exhasution and pain

Carrie. Exactly. Well, I didn't do the physio, they were actually when they saw me. I broke down crying.

I am SO sorry if I missed anyone else. It is not purposely done.

Well, my Rheumy got me in tomorrow at 1. Now I am a little freaked (like usual) because I can't sleep thinking of what I want to say. I faxed a request for this appointment, and then I get there and seriously look stupid. I just tense up. Today they Pysch told me she never saw me this way, and I did speak up A LOT. I hope I can tomorrow.

Gnight and hugs everyone.
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Old 01-25-2013, 05:24 AM   #1625
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Sea Spray,

Its soo good to see you! I have many days when I just lurk too. I might post something quick someplace else but here I want to make sure my post makes sense so I wait.

Well as of this am its day 15. Awoke with migraine. Last night DD13 argued with me then left the room. It got so bad I just cried and cried. I could not wrap myself around the pain. All the control techniques were useless. Its been tooo many days and I just couldn't hold it together. In someways it felt good. I don't realize how hard I have to concentrate to control all my pain until I lose control and cant get it back. Still it freaks the kids a bit because they never see me cry. They might see a day here or where I tear up or even and have a few stream down my face until I can catch my breath but full out sobbing well that hasn't happened in two years.

Things look GREAT with new DR. My got she is the first one that actually gets it. I mean full out gets EVERYTHING and has good scientific reasons as to why. Since I worked in the medical field and have a good grasp of advanced bio I know when I'm being bs'd. Bad part is OMG its expensive. Yesterday 450 oop for visit (3hr alone w Dr.) couple of supplements and a IV vitamin/anti fungal IV. She only added two things to the cocktail of supplements I give DH (when he takes them and I can sort them out without brain fog. He will be on a. 3 stage antibiotic regimen unless his second visit in 4 weeks results in reassessment . Thank god the insurance picked up the first round of meds one antibiotic was $400 for 30 days! The antifungel for yeast was picked up for 10 days ..he needs 30 because she feels he has a yeast infection from all the antibiotics and because he is now on stronger ones to boot. We gotta call Insurance today to get that fixed. Hopefully we can get reimbured for some of visit. We will submit the forms and see how it goes. So I think treatment will be at least $3000 oop to start and then increased costs due to diet and supplement changes. Today he get full blood work up. Like 20 viles! I hate to see that co pay! But its to test for all possible hormone, infection, viral issues for all these unexplained issues. She doese them once instead oll all back and forth other drs do plus lots or hormone stuff that others just dont do. Well gotts get kids up or going to be late. Will explaine the specifics of treatment later. I think you guys
will find it intrersting.

Pain free vibes and pixie dust to all1
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Old 01-25-2013, 10:37 AM   #1626
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Ugh on the headache. Sometimes the good old cry is just necessary, and I agree it does feel good. I hope it released something for you. My daughter is the same age, and isn't always the easiest of times

I'm sorry about the migraine . Hoping it eases up somewhat, if not all, but I know the reality of that.. :hugs:

That is amazing about the new Dr. It is SOOO wonderful to have someone just get it. It sounds like you guys are on the right track.

Have a nice day everyone.
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Old 01-28-2013, 03:05 PM   #1627
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How is everyone feeling today?

My IBS has been acting up today. Blah.

After sleeping almost non-stop for the past week, I was able to go to work yesterday (2pm - 7pm), but I didn't really make dinner because I was exhausted and fell asleep after work. One of my DSs put frozen chicken in the oven, and DH heated up some clam chowder.

I feel a little accomplished today though. I went to the food store, then came home and put (fresh) chicken in the oven AND put a frozen pot roast into the crockpot for tomorrow's dinner.

It's snowing right now and I'm not looking forward to going to work in a couple of hours and having to deal with clearing off the car now, and at midnight when I get out of work.

I hope everyone is ok.
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Old 01-28-2013, 03:41 PM   #1628
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Thanks for all the support. looks like the worst is over. Sat almost go head ache twice but fended it off and made it out to dinner then a movie that we had been trying to see for several weeks. Sun felt bit hung over from weeks of headache and almost got a significant one but again managed to fend off with meds/ice. (YEA!) Today got out and did some much needed shopping. I havent done real grocery shopping since Christmas just pop in/out when I could manage it. So today it was odds/ends wed will be grocery because I have to focus on bills and getting list together because I'm out of everything. Thanks god for a pantry and upright freezer that store enough for couple months because there was no way I was shopping for 5 past two months. Isnt it amazing how good it feels to get somthing simple like groceries done?

On the DH front he seems to get better every day with the new antibiotics. His snoring is way down (maybe swelling in throat from infection) and he is generally more put together. We are definitely on right track! Now he starts yeast treatment because she thinks he has yeast infection which of course gets worse on antibiotics. He has to basically go on low carb diet and give up the booze lol. This might make him feel worse as toxins leave but I'm sure it will go fine. He is a strong guy.

So for the moment all good in Pa.

Hope warm front coming in makes you all feel better.

Sending pain free vibes and pixie dust to all.
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Old 01-29-2013, 01:29 AM   #1629
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HI all. Sorry about the IBS SeaSpray, that isn't fun at all.

Tigg: So glad to hear all this. A little bit at a time. I hear you on the little things getting done make a big difference.

Well, I am trying Celebrex AGAIN. So far it has helped. Saw the Dr for an emergency appt and he told me I looked quite bad. He is referring me to that neuro who specialized in rare muscular disease. I may have written this already . MEMORY..lol.. And that she wants to do an open muscle biopsy. She thinks along with this I have a rare muscle disease where it atrophies after effort, while most stop during effort due to pain or whatever. I do it, and then I a pay like a who know what.

But, the Celebrex has taken that horrible flare off, and I am left with soreness, but manageable. Actually made supper tonight, we ordered 5 days last week, and not only is that horrible, it is NOT in our budget. I also baked cookies, cleaned and vacuumed.

Tomorrow we are expecting FREEZING rain, ice pellets, and some more wacky weather. I have changed my pysio from Tomorrow to the next day. NOT driving 2 hours in that.

Sending gentle hugs to all.xo
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Old 01-29-2013, 06:24 AM   #1630
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Quote:
Originally Posted by mommasita
HI all. Sorry about the IBS SeaSpray, that isn't fun at all.

Tigg: So glad to hear all this. A little bit at a time. I hear you on the little things getting done make a big difference.

Well, I am trying Celebrex AGAIN. So far it has helped. Saw the Dr for an emergency appt and he told me I looked quite bad. He is referring me to that neuro who specialized in rare muscular disease. I may have written this already . MEMORY..lol.. And that she wants to do an open muscle biopsy. She thinks along with this I have a rare muscle disease where it atrophies after effort, while most stop during effort due to pain or whatever. I do it, and then I a pay like a who know what.

But, the Celebrex has taken that horrible flare off, and I am left with soreness, but manageable. Actually made supper tonight, we ordered 5 days last week, and not only is that horrible, it is NOT in our budget. I also baked cookies, cleaned and vacuumed.

Tomorrow we are expecting FREEZING rain, ice pellets, and some more wacky weather. I have changed my pysio from Tomorrow to the next day. NOT driving 2 hours in that.

Sending gentle hugs to all.xo
Mommaista,

Glad you had functional day. This morning my whole body feels like it is vibrating in pain but no migraine . Keep feeling like I will get them but don't. I realized last night that that period where I
cant decide if I will get it IS a headache by most people standards. I usually get pressure behind eyes on side of head etc I just don't consider it one. Tell you how much we write off as normal most people would consider a reason to complain.

Why did you stop celebrex? My dh wants me to try it but I had a rough time with its cousin vioxx and its expensive!

On the weather front its 60 today! But in 30s tomorrow....Hope this doesn't take me for a spin.

Seaspray has your IBS improved?

Sending pain free vibes and Pixie dust to all.
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Old 01-29-2013, 01:44 PM   #1631
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I am right there with you on those headaches, and symptoms.
I am in it right now, but it is "just' a headache you know? Hope it stops there.


Surprise here, I don't remember why I stopped taking them..LOL. I have tried at least a dozen, and have had many different effects. Desperate beyond belief this time, I am trying. He gave me 10 packs with 3 pills in each, and to call his office for a prescription if I need it. So far so good. I think I will call at the end of these. I don't know the price, too bad I couldn't get them and mail them to you.

Well, off to Plan a Tan, as this is my new bone therapy. XO TO ALL
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Old 02-01-2013, 04:53 PM   #1632
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Well finally had a good day!!! YEA!

Got to sleep late as kids had 2hr delay then out to finish this months grocery shopping that I had to break up into 3 trips. Now feeling pretty good Maybe tomorrow I can CLEAN! That would make me sooooo happy. I see stuff all over and on floors and it drives me CRAZY but no bending over with headaches and kids get away with alot then too so house looks like it could be on the show hoarders! LOL

Oh it feels good to take a breath and not be in severe pain.

Momma how was your appt?

Carrie do you know anymore???

Sending pain free vibes and pixie dust to all!
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Old 02-01-2013, 06:51 PM   #1633
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SOOO happy to hear that! Don't overdo it now (in best mom voice )

I had a pretty good day also. Got all the housework done, bedding and all. Groceries done last night with my son's help..

My next appt is the 7th with the neuro, so this upcoming week. I am going to force myself to remember all that I have to ask.

Weird thing. I had a MIGRAINE of all migraines the other day, took my maxalt, and for the second time had a full out nose bleed. 2 hours, so going to ask about that. I took my pressure, and it was fine, so maybe the maxalt????

Thinking of everyone, and wishing you all a painfree and happy weekend.
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Old 02-05-2013, 06:11 PM   #1634
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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.
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Old 02-05-2013, 07:32 PM   #1635
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Quote:
Originally Posted by SeaSpray
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.
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!
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