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

Elimar......they are treating me for the fibromyalgia and the pain from the breast. Hopefully the neurontin and the savella will help with that.

I haven't had to take the loratab this evening. I had another spinal nerve block today and I can even cup my boob in my hand, rub it and IT DON'T HURT!!!!!!     This is the first time I haven't been in pain since my biopsy on 12/9/10!!!!! I have cried and cried today just because it has been such a RELIEF!!!!! 

I have heard that before Luan......wonder what it does now that the tamoxifen is taking all my estrogen away??????

barbe........yep, I read that.......and the tammy is already helping me put the weight on......and now this.  The thing I am having problems with is the nausea for about two hours after I take my meds. Then I am ok. I do get hungrier, but I am really trying not to eat any more than I did before. I can tell in my tummy, it has gotten bigger......but hopefully now with no pain, I can start exercising again I HOPE!!!!  

figures!!!!!! "(

Luann.........hello and welcome back.

NO you're not a basket case.......unless we all are!!! hehee

I had a partial hystorectomy and was on hormones off and on since I was 28, now 54.       Yeah, seems like it huh>?!! There are so many things going on in our bodies...... I really thought mine would be genetic because my mom had bc too, but it wasn't........was kinda weird to me...... 

Not much activity on here!  Does that mean everyone is feeling better these days?  Not sure why but it seems like my bad fibro days are farther and fewer between.  I had revision surgery about 4 weeks ago and had my implants swapped out for much smaller ones with fat grafting.  I'm wondering if having my "foreign object" reduced is somehow having a positive effect on the pain?  Whatever the reason I'll take it!  Hope everyone is doing good as well.

Hi Everyone!  I have been fighting with pain issues since last September.  I went camping, came home with an enlarged lymph node in my neck and slowly over the next few months the pains came on.  I have been tested for Lyme's twice and other tick related diseases but that ain't it.  The Rheumy says he doesn't think it's Fibro, though I still wonder.  Once I was diagnosed with BC, he thought maybe the two are related, but surgery was over one month ago and no change yet .   I hate when all the pains come on and all I can think about is the cancer spreading.  I go from shooting pains to burning pain to cramps (legs are the worst, back, arms and hips also ache), I definitely have sore points (like fibro), but I sleep well and I'm not stiff in the morning so he won't give me that diagnosis.  Bleh.  Not looking forward to radiation and tamox. and how it will affect my pain.

Jessamine:  Thank you for your insight.  It is so hard to move forward without a diagnosis, isn't it?  It is much easier knowing what you have and how to deal with it.  I especially appreciate your last sentence, since of course, cancer is all I think about these past couple of months!  So far I can get along 95% of the time without meds, as I have a pretty high pain tolerance.  I was convinced it was Lymes but I don't have the progression of symptoms for that either and both the neurologist and rheumatologist say it doesn't fit.  I may go there again once this whole BC thing has settled down.  It makes me so mad that 1 year ago I was a healthy 45 yo and now I feel like I'm older than my mom!  Thanks for the support!

Kate 33--------read multiple of last pages. I was dx' with firbro caused by Arimidex then femara refused further tx ---then changed onc's . he was so strong about me being on something(oncotype dx score30) I went on Aromasin---------the drug that has no s.e's--------well mininmal at first then started the same pattern of arimidex except i don't have long bone pain. Sledgehammarer for both hit in the fifth month. New developing nodules on phalanges.  All joint pain---- went back on Fentanyl 25 mcg last week. Have been on Savella 25 mg bid since arimidex fiasco dec 09. .Post Polio all my life ------original infection 1952 as a 2 y/o. Post polio syndrome kicked in in the 70's and took off in the 80's. -------------Difference with PPs is I could tolerate it without drugs.  Now ---not with the Aromasin. But I use one Fentanyl patch a week vs changing every 72 hrs. Fentanyl has serotonergic effect like the ssri's and ssnri's, but has the pain relieving effect that they don't. Problem is if you aren't real carefull with it , it can be highly addicting. That's why I change it only once a week. Everyone would tell you it can't be done this way. It can. I went through it when I was on it before. Didn't want to go back on it again . If I think I have to do it more than once a week -------it will not happen. I'm also , on Savella 25 mg bid.could go to 50 mg bid , but am afraid to do it.  So, I get the antifibro effect from savella and fentanyl ,the pain relief from fentanyl and am able to tolerate the Aromasin. AND am able to function. OXYcodone is not an answer. Nsaids for me causes Blood pressure problems. I saw someone earlier mention Savella. That's why I went back several pages. Savella was approved herein the USA in Late 08 Or early 09. It was avaialable in Europe for 10 years. FDA gave them proprietary rights vs genaric----------duh ----money.  Typical to our government---------suck the money out of us.

OF course all the drugs , I'm taking have an insomnia s.e. ............. DUH it's 3:50 am I'll close now simply b/c long reads are work. -------------sheila

Luan- I can only take a 1/2 Provigil and I take it in the morning.  It's so darn expensive so I only take it on days when I know I'm going to need some energy like lots of walking, a long day or cleaning the house.  

Luan, I had responded to you yesterday just as the system was shut down for maintenance at 4:17!! My post was lost. I get pretty much whatever I want. My doc in the last 5 years has been amazing. He's seen me on Oxycontin that he thought I'd have to be hospitalized to get off, just tapered myself down and off. Now I am on Oxy's again as well as Hydromorphone and Torredol. I need to function. He trusts me and I trust him. I have never lied to him and I see he knows it. Not saying that you have, of course, but now that he's seen me take myself off the Oxy's, he trusts me enough to put me back on when needed.

Hi Ladies - Jumping in to see how all of you are doing.  Kate, so glad to read about the relief!  Go, girl!  My sister and I think about you often, and I will be glad to tell her about your revision. That was a brave thing to do! (She often wonders if smaller implants would be less painful.)  

Found out I have shingles.  (So that's what this rash is!)  You know, with auto-immune disease, a rash is just one of many things we deal with.  Pain, too.  How the heck was I supposed to know?  If you catch it early there are meds you can take to cut down the severity and duration.  Well that horse is out of the barn.  I'm just so glad the swollen glands have nothing to do with cancer.  Texas heat (around 102 degrees,) shingles, and hot flashes.  Yowza.

Any of you know how long the fun will last?  Can this come back again?   

hey gals,, been "lurking " for awhile.. i wanted to tell you; i went to a "pain specialist" here in so. fla... he's a real dr.. not one of those clinics.. most of the hospitals here have them in their network. check it out. my GP isn't to be trusted; but i've been with this Dr. for over 10 yrs... we have an off/on system that keeps the addiction from happenning.. hope you find one near you; but go to the hosp system, there's just too many pill drs out there, otherwise....      hugs, gently.........3jays

I can understand some doctor's concern with addiction because you hear of people that keep needing more and more and then can't function because of it.  And our doctor's don't know if we're going to be one of those people.  I kind of look at it as the difference between a functioning alcoholic (yeah, they need it but they can hold a job and then drink when they get home) and a falling down drunk who ends up in an alley some day.  If you're taking them because you're in pain it's not an addiction.  It would be like saying a diabetic has an addiction because they take insulin every day.  There are some of us who can function while taking the necessary pain meds.  I'm, unfortunately, not one of those people.  Any pain med I've ever taken has mad me so loopy I cannot imagine getting in my car and driving or holding down a job.  So I don't take any unless I'm home and my DH is home.  (I also won't take them if I'm home alone with our son.)  I envy anyone who can get some relief from this never ending pain and still manage to be a contributing member of society!  

im so glad your onco listened to you, Luan....3jays

Luan, Glad you were referred to an LE specialist. I see my BS on the 8th. I wonder if he could suggest someone. For some reason my Onc. has decided I don't need to see hime every 3 months, he has put me on a 6Th month schedule already. I sort of thought they waited 2 years to do that. Oh well who knows.