anyone out there with auto-immune/chronic pain issues before dx?

squidwitch- I like that expression, too.  Going to have to start using that!  I've done many a face plant on the couch!

barbe- I do the "one thing a day" thing, too.  My DH doesn't understand why I can't schedule more than one appointment/event per day.  I get so overwhelmed sometimes when I have a lot going on because I don't like having to do something every single day, either.  It's going to be a total shock to the system when I go back to work.  

yep, count me in the one thing a day club! and Barbe, i can't work anymore, and a- ** ing mazed that you do!!! i stay in my jammies all day, many days, not even going out. try not to do that too much, though, cause then the depression kicks in.. its' a fine line. after one of my strokes, i realized i can't stand too much stimulation..ahh.. emotional that is.. anyway, i dip out of events like you did with the hotel. i can't talk long on the phone too much, or have dinner with too many friends at once... just a weirdness thats' developed.. just too much stimulation for my brain to handle.. any of you guys get that, too?? its' much worse since chemo, for me..     3jays

stanzie- I would look at my neighbors who all work full time, do their kid's activities, even volunteer and think "How the heck do they get all that done?"  I used to think there was something wrong with me mentally that I couldn't accomplish more in a day- that I was lazy or something.  Now I know I'm not but always feel like a lot of other people think so.  I know I shouldn't care but do you ever wish this disease was something that showed up on the outside like a big "A-I" on our foreheads or something.  Then people would see it and say, "Oh, you have an auto-immune disease.  You poor thing.  No wonder you're so tired!"

3jaysmom- Everything you described is me, too.  Lots of jammie days (though my son calls them achey days).  I definitely feel my depression ratchet up a notch if I isolate too long, too, though.  It's definitely a fine line, as you say.  (((hugs)))

So I've got my revision scheduled for May 13th.  Really want the results but am so dreading the whole surgery/pain/hospital/recovery thing.  My brain feels overwhelmed already.  To make matters worse I'm having it done in Miami (I live in Phoenix) and am doing 5 days of my post-op in a hotel room.  My DH will be with me the whole time and that is the only thing that is keeping me going as he always figures out ways to make it easier.   (Like bringing tons of movies so I can zone out.)  The worst part will be the long flight home afterwards.  Oh well, no pain, no gain, right?

Mary- You summed it up when you said thousands of dollars and it's still you trying to figure out what is wrong.  I feel that way also.  Tired of being my own medical detective.  I just got diagnosed with uterine fibroids, too, and have an appointment with an ob/gyn tomorrow to discuss treatment options.  I feel so much like you do that they're taking a piece of me at a time.  Just am feeling so betrayed by my body right now.  Hypothyroidsim, fibroids, recon revision scheduled, hearing loss in one ear (which required a hearing aid), fibro is worse, brain fog at an all time high and then throw in bifocals and menopause for good measure.  TOO MUCH!  I joke with my DH that he got a lemon.  Just feel like such a mess right now and trying to deal with one thing at a time.  Sorry about your bladder issues.  I didn't realize that fibro can cause cystitis.  It seems never ending, doesn't it?  So glad we have each other.  I can't imagine ever giving up this site now that I have found it.  You guys keep me sane.!

barbe- ((((HUGS))))  I am so sorry that happened.  WTF is wrong with people that they can't show more sensitivity...especially other women.  Did you call your doctor's office to see what the deal was?  My pet peeve is doctors who tell you that you need tests but no one tells you ahead of time what those tests will cost.  And I don't understand why they are charging you in the first place.  Unbelievable!  I was out shopping the other day and joking with the cashier about my old driver's license that looks nothing like me.  (It's not expired but the photo was taken 16 years ago.)  She said she had a customer whose photo showed her bald after chemo.  The customer said when she went to get her new license the clerk realized she had a wig on and made her remove it for the photo saying wigs weren't allowed.  Now this poor woman has to walk around with a driver's license showing her bald.  Someone at the DMV should have been fired for that.  And those clerks at the testing place need to take some sensitivity training.  Hope you shocked the s*** out of them!!!  Don't blow off the test, though.  We need you here!!!  See if your doctor can help in anyway.  Good luck!  (((more hugs))))

My revision is scheduled for next Friday and am still fighting with the insurance company over coverage.  It's just adding insult to injury when BC patients have to deal with all this crap.  They are telling me they will pay to have the old implants taken out, and the new smaller ones put in but they won't pay for the new implants themselves.  Even though the PS is swapping them out because I am in PAIN!  I am just so frustrated!  I have been back and forth on the phone for the past 3 days trying to fight this.  If I can't get it resolved the PS's office wants an additional $1500 on top of the $3600 they have already collected.  Never imagined it would be so expensive to put "Humpty Dumpty" back together again!

Luan- Welcome to our little group here.  It seems that so many of us, even though we have different DX, all have overlapping symptoms.  Still have to wonder if it's not just one big disease.  We're usually referred to a rheumatologist, too, for fibro and they are equally worthless down here.  I'm afraid I'm not much help as far as tips other than Vitamin D seems to make somewhat of a difference.  And if you can find something to get you into a deep sleep.  (So far I've had no luck with that one but on the few nights where I do manage to sleep through the night I feel SO much better the next day.)  I think we're all lacking in REM sleep.  Anyway, we're here to share your misery, so to speak, anytime!

Luan, Kate is right. Sleep and Vit D3 (liquid drops). I cannot live without either one. Plus I'm on narcotics...the big boys. My next step is Methadone. I sleep 10 hours + on a work night and 12-14 hours on a day off. My narcotics help me sleep which my body needs so badly. I don't do ANYTHING except work outside the home. Otherwise, my home is my nest and I stay very close to it.

I must add Magnesium when I have some extra $$.

Stanzie- Your body needs the magnesium to help absorb the Vitamin D.  If you just take the D alone not all of it is able to be absorbed so you're basically just flushing most of it right out.  There's a lot of supplements out there that combine calcium, magnesium and D together (though they're usually giant horse pills) that when taken all together prevent osteoporosis.  My GP just told me that I'm in the 2nd highest percentile of people who get osteoporosis- skinny, white women in menopause.  (I thanked him for the skinny part.)  He said the first highest are skinny, Asian women in menopause.  So now I'm trying to up my calcium along with the magnesium and D.

Thanks - I must be getting magnesium from somewhere then as I was put on vit D and they have been checking my levels and finally was told to lessen the dose as it was getting too high. Interesting... will have to figure that one out as I don't take magnesium by itself or with the D. Thanks.

Oh Barb, i know ! SLEEP !!!

MrsChorlton- My stepdaughter just got DX with Celiac's disease, too, after struggling with symptoms for years.  I'm happy they figured it out but sorry she now has to deal with it.  It would definitely be a total life style change!

I had my revision surgery yesterday and the PS did lots of fat grafting. Everyone said it wouldn't be too bad but I'm in a lot of pain. Not sure if my fiibro is making things worse. If I had known how bad I would feel I probably wouldn't have gone through with it. Can't imagine I would do this a second time. Maybe it's like childbirth, though, and you forget how bad it is! LOL!

Kate........so sorry you are in such pain......keeping you in my thoughts!

Barbe....hope things get worked out so you can have that done!!

It's been a wild crazy few weeks......lots of stabbing, jabbing, burning pain in my breast......three drs....(two said....oh it's normal and you have fibro so it's just amplified.....it will pass) HA!!!!!!   Went to pain clinic on May 6th They couldn't believe that they had let me go so long with such pain......my blood pressure was sky high!!!   They gave me loratabs, nuerontin, savella and a cream/gel for the pain, then last Monday did a nerve block on me......helped some. They are doing another one this next Monday. The dr there said I have severe nerve damage......why wouldn't the other drs. tell me that???????? I am soooooooooo sick of drs. I can't even see straight!!!!!

Anyway.......enough of my venting.........

Hope y'all have a good Sunday....I just got off work awhile ago so going to bed in a few.

HUGS 

Paula

Hello ladies, this would make a lot of sense....

"Many health care professionals are now beginning to recognize a link betwen hormone imbalances and fibromyalgia symptoms. Like hormone imbalances, fibromyalgia can be one of the most frustrating and elusive problems that conventional medicine is facing today.  Excess estrogen levels that lead to symptoms that are associated with estrogen dominance and fibromyalgia are, for example: 

• Joint and muscle pain
• Sleep disturbances
• Migraine headaches
• Memory loss
• Foggy thinking
• Depression