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

ICanDoThis--Thanks for that information, my mother-in-laws doctor told her this several years ago after one of many outbreaks and she has not asked again for it. Even at 91 I am sure she will want to get it rather than have another outbreak. I am however baffled that my doctor didn't mention this to me yesterday. I had said that I knew I needed to get the vaccine before I had an outbreak and he said yes, however, we were talking about so much at once he may have just misunderstood me in conversation. My mother-in-law thanks you for the information and I am sure it will be totally paid for under her medicare and insurance.

grannydukes- All I can tell you is my Mom is currently experiencing her 2nd shingles episode (because no one told her about the vaccine after the first one or that she needed to get on medication within 72 hours after an outbreak) and she says it is the worst pain she has ever felt in her life.  It is now 3 weeks after starting the medication and the pain has still not subsided.  Her doctor told her it could be permanent even after the blisters are healed. If it were me I think I would risk the vaccine rather than face all that.

Grannydukes!

You go girl!

Tori

grannydukes - Kate 33 is right about risking it.  I got shingles about 3 weeks after I was dignosed with BC.  It was a total shock since I have never had chicken pox and had even had a titer test which indicated I had not had them.  I was scheduled for presurgical testing on a Monday & on the Saturday before I went to the doctor for what seemed like an infected pimple on my forehead.  He told me he thought I had shingles and of course I proceeded to tell him that was impossible since I had never had chick pox.  He prescribed an antibiotic.  By 5a.m. Monday I was in the emergency room because the pain was so bad.  It was definetly shingles.  If a vaccine would save me from ever having them again I would take it in a minute.  It went to the corner of my eye, but luckily did not go in it.  I do however have a few scars on my eyebrow and residual numbness and pain.  I can honestly say that it was the most pain I have ever experienced and I don't think I am any wimp.  I can remember thinking that if I feel this bad at 45 with shingles how bad must older people feel.  My sympathy goes out to anyone who has ever had to experience that and now I am going to have to ask my doctor about this vaccine.  Also, I never have gotten a flu shot.

Sue

I have been soooooooo sensitive to perfumes/chemicals my whole life, no telling what they have done to me...Smells/scents chemicals will attach to my tongue and I actually taste them, even if the person wearing this is not even close to me....I have changed to no chemicals in my whole body products and cleaning items..I truly believe that a lot of people are putting these nasty chemicals on thier bodies and it is the cause of headaches, skin problems and who knows what else....

when ever i changed my sheets which was once a weeek i would spray the entire bed with Lysol including the pillows.EVERY WEEK..i always dyed my hair,used hair spray,cleaned with lestoil windex,paper towels....and the list goes on....are you tryin to tell me ALL this comes into play with bc????? bleach,oven cleaner etc.did anyone ever hear of walking in front of a microwave when its on can give you bc????and this is all supposed to be connected to auto-immune disease????? i must be missing somethingor missing a lot.

Just wondering if anyone out there has had implant pain who has fibromyalgia.  I had my exchange back in June and have had continued pain ever since.  My implants just ache all the time.  My PS said this sometimes happens with fibro patients, even those who just have augmentation, but she doesn't know why.  (Nice to just be hearing about this now.)  She said the pain may be permanent.  I already have pain just about everywhere else in my body and now this.  Anyone have a similar experience?

Barbe- Your post brought tears to my eyes just to know that someone "gets it".  And I understand what you mean by the suicidal thoughts.  You just want the pain to stop.  I think about an animal caught in a trap that gnaws their limb off- that's how I feel sometimes.  Just want to be free of it.

Has anyone ever given people close in their life the clothes pin test?  Have them clip a clothes pin to the end of their finger and see how long they can stand to have it on there.  When they finally can't take it, and they remove it, tell them how it would feel if they could never remove the clothes pin and they had them all over their body.  When I had my DH do it I think he finally (almost) got it.

Thanks, again, for the understanding and the hug.  I needed it today. 

My Dad and his wife (along with everyone else) didn't understand me at all until 20 years later they had a neighbour who had it. THEN they believed me! I was SO angry......

I liken the pain to having all the skin peeled off your body leaving the nerve endings exposed. Even air can cause pain. Cold/hot, dry/wet, pressure, none....I think y'all get it.

One time my sister called me and asked me how bad it was. I said if I could get myself down the stairs to the kitchen I'd get a knife and slit my wrists. Can't get much more desperate than that!

Squid, I got all excited and Googled RSD. I don't seem to have it as it talks particularily of "one sided" issues where, with my FM I have pain and weakness on both sides. I am always looking for another diagnosis...perhaps one that has a cure!....sigh.

jessamine- I didn't have this same pain with the TE's which is kind of odd.  I was taking a muscle relaxant for most of my fills so maybe that was helping with the fibro overall?  I have been googling like crazy the past few days trying to figure out what is going on.  I did read that if the PS makes the pocket too small you can get a squeezing feeling on the implants which it kind of feels like.  Wondering if it is just the weight of the implants themselves?  Do you suppose silicone weighs more than saline?  Just feels like there is this weight on my chest all the time.  Have been wondering if smaller implants would help but I had NSM and am so afraid another surgery will screw up my results there.  Just seems to be a lose-lose situation either way.  Anyone have any good results with meds for fibro?  Feel like I've tried just about everything.

Barbe- I can definitely sympathize with the pain and sensitivity issues you are having.  And I understand how the ones around us just will never really understand.  Seems hard enough dealing with fibro without throwing BC into the mix.  Ever feel like we have a cosmic "Kick Me" sign on our backs or something?  I sometimes feel like I want to give up, too, but I keep hoping the answers, and pain relief, are just around the corner.  Sending (((hugs))) to you today, too.

Does anyone know if there is a BCO kind of site for fibro sufferers? 

barbe- OMG, I think I'd be eyeing the kitchen knives, too.  All of that and in your photo you still have a smile on your face.  I think you have an amazing spirit with all the crap that has been thrown your way.  Seems way too much for one lifetime.  

Barb,

 as it is hard too infer emotions on the internet, I just hope you aren't being tough on yourself for having to take pain meds.  are you seeing a pain specialist? While pain free may be unrealistic for those of us with chronic pain issues, your pain med needs should be less about dosage and more about what gets you out of pain crisis. I hope my post comes through as supportive, b/c that's my intention.

I hope you have a good day today!

traci