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

mybee333- I have fibro but never had any of the side effects you're describing.  Does your PS know about this arm pain?  I would definitely put a call into them if they don't just to make sure everything is fine.  Sorry you're having to deal with that!

I can believe that we are so in need of estrogen.  After my hysterectomy I was made very aware of that!  Going on estrogen replacement was certainly not something I 'wanted' to do but it was my wayof getting back to 'normal'.  Once we got the dosage right I felt like myself again.  I know I will soon have 5 years of an AI or poss. Tamoxifen and I am really nervous about how that will go.  Estrogen immpacts so many cells and organs in so many ways.

Bee, arm pain except at sides of elbows isn't an FM indicator. Perhaps your TE is sitting on a nerve or something. Have your doc check your neck too. Don't be too quick to blame FM as you may miss a real situation!!!

Estrogen....hmmmm. what's that!?!?! I had a hysterectomy years ago and don't recall missing ER. Then when my bc turned out ER+ I figured my fat is producing enough to keep me happy. My skin is in GREAT shape for my age so I'm lucky so far. Lucky??? Me lucky?? Did I just say that????????

Remember what I've said before Kate, when you are in pain, you don't get 'high'. Also, it's a QOL issue just as much as anything else. We have the right to be pain-free and we have the technology...now if I could only ever be painfree!!! It seems to be getting worse, not better being off work!

Vickilf- I agree with you- way over prescribed. Funny how they keep changing what is considered normal cholesterol too. Drug companies are trying to get as many people on it as possible. My mom was taking it and kept getting these horrible purple welts and bruises whenever she even slightly bumped into things. We thought it was the Lipitor but she said it wasn't listed as a symptom. So I googled it and found a lot of people who had the same issue. She went off it and within 2 weeks all her bruising went away. She's going to try diet and exercise instead!

I think all of us with auto-immune diseases just have to be extra careful and really pay attention to what our bodies and gut instincts are telling us. I think because of having the auto-immune problem that we are automatically at higher risk for cancer. I DO wish I had been told this when first diagnosed I would have have really questioned and researched going on HRT more had I really understood this.

I had a complete and total breakdown with DH last night from pain issues.  I find when I have a new issue that involves pain of any kind it's the straw, camel's back, blah, blah, blah. I told him how hard it was being in pain all the time.  I've been in pain for over 10 years and am thinking I'm going to be in pain for the next 10, too.  I said just once I want to wake up and not have any.  I felt so guilty with my meltdown seeing as he was just DX with Parkinson's.  Does it ever just get to be too much for all of you?  It's not the level of pain that's changed. It's more thinking it's going to be a permanent part of my life forever.

Kate I'm with you. This intense heat seems to be making it so bad for me lately. We have really humid heat and it knocks me down just like the cold does. There is a 2 week window, in September at some point, where I'm not in pain as the weather is just exactly what I need....sigh.

I've had many, many breakdowns. I have pity parties where my DH allows me to actually say 'poor me'. It does sometimes help to say it outloud!! The fact that he acknowledges my pain is so healthy for me. Otherwise I'd think I was going crazy!!!

Thanks for the validation everyone.  Sometimes I feel like the biggest baby.  

elimar- "It does not feel like the real me" sums it up perfectly.  I feel like this isn't the life I was supposed to live.  I can accept BC easier than FM.  I feel like FM has changed me so much.  Sometimes it just sucks the joy right out of you.  I always feel bad for my DH since I've changed so much.  I always think if I could just get rid of the pain, then the fatigue would go away, and I'd turn back into the woman he married.   

Jessamine - Again to go way back - I think you may be on to something with the tendenitis. I had a painful shoulder just recently which I believe was tendenitis but was told was arthritis.  But it came on so suddently I felt something else was up.  The cortizone inj. helped some, but I think the rest after my mastectomy helped the most.  This may be a 'nerve' issue.  It is getting better.  I do find most of my FM symptoms are better the more active I am.  I know this is not true for everyone and I know too that I don't have the stamina of many others (fatique can be a problem), but I did lots of yard work today and it's a nice kind of sore.  Maybe it's just increasing the oxygen to the muscles or just feeling some control, I don't know.  I found it hard to rest as much as the surgeons wanted me too!! But I do take breaks, watch more TV than before and pace some.  I took a 2 1/2 hr. bike ride several day ago and it was hard but I don't want my illnesses to control me. Yes - I hurt a lot.  However, I also know that I am lucky in many ways.  My biggest struggle is with the moods and the depression. I feel bad for my kids.  I'm just not that much fun anymore!!

You're right there!   I think that's it.  Earning it before it beats me.  Takes me a long time to get going in the morning!! I am lucky that I don't work summers.  I can get physical   During the school year I'm on the computer so much - that's when I think I hurt the most!  No time to be as active as I need/want to be.

mybee333- Hope everything settles down once your body becomes used to the medications.  Sometimes I find I have some SE's for a few weeks but then they go away.  Hope it's the same in your case.  It seems so many of these post BC meds are a toss up- lower risk of recurrence or QOL.  Wish they'd come up with some better alternatives.  Good luck with everything!

Oh yes - I can feel it working.  I already went through this before with my hysterectomy several years ago. Was a VERY difficult time.  Am hoping you are right Kate and things settle with time.  Thank you for your support! 

arrghh.. yesterday ANOTHER dr. told me he thinks this is hashimotos disease, and even though its 2 years away from chemo; haven taken nuelasta then, probably set it off... hormoans oooppsss  hormones, are such buggers for me. i failed all the als; drove me right to the nuthouse; and yes, when i had my hystectomy years ago; same thing.. i hope all calms down for you,mybee333............3jays

mybee, my hysterectomy brought me to my knees years ago when I had it!! I had the toughest recovery time of any surgery I'd had to date. I was very anxious about the mastectomy surgery and then pleasantly surprised with how well I did! Because there are no muscles, bones or organs involved, there is so much less pain! A recon surgery involves muscles, so those ladies have it a bit rougher.

3jays, I'm thinking I may have Hashimoto's too! I just had the doc do a blood panel including thyroid and cholesterol. I've been waking up with 'thick fingers' so swollen I can't close my hand into a fist. That is one of the signs!! Wouldn't it be great to go on a med that could bring me out of the HELL PIT I've been in all these years!?!?!?!?!?!??  I see the doc on Monday to get the results!! I'm always looking for the easy way out - a magic pill!!!!