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

hopefortomorrow

Hi I just thought I would pop my head in here tonight to offer support. I was diagnosed with Fibro in the middle nineties. Of course the first people you tell are family members, I have a large family, but they knew something was wrong- however my brother-in-law immediately snipped "oh you have lazy housewives disease". (He himself is in the sportsmed type field) Well from that day on, I rarely shared that I have fibro with anyone except those I feel I can help.

Since then, one of my sisters has been diagnosed with fibro. In recent years I do find there is more acceptance in the medical community. It can be very lonely when you have pain and can hardly walk. I seem like a very strong healthy woman,( 5'10 and a well proportioned plus sized gal) and half the time I get a look like-what do you mean you can't? You were fine yesterday?

When I was first dx'd my sister and I cried together on the phone because she understood my worry that the Chemo might intensify my pain. I have only had one treatment, so far, so good. Nothing out of the ordinary happening. It is a day to day uphill battle for me. (As I am sure it is here for all of you)

I appreciate all the suggestions people have been posting for helping with pain.

I find it interesting to hear it is related to trauma of the spine- both my sister and I have had chronic back issues.

Anonymous

suz- What great co-workers and such a thoughtful gesture.  When is your surgery scheduled?

hopefortomorrow- As much as no one would ever want another family member to have this disease it must be nice to have someone close who understands what you have been going through.  I hope your chemo continues to go so well. 

MAGOB

Hopefortomorrow - nice to know you.  You have friends here who understand.

Suz - thinking about you.  You're going to do just great.  One of the things I remember about chemo is that the steroids really made me feel good.  Less pain.  Hang in there.

Went in for my 3-month with the onc yesterday.  Tamoxifen was the main topic.  I am only able to take half the recommended dose - 10 mg daily.  Its all I can handle.  Even at this dose, I have flare ups.  I find they keep me from exercising like I should - and we know how important that is.  

I'm happy with the solution - when I start a downward spiral with rashes, swollen glands, and muscle weakness, I can stop taking Tamoxifen for a few days until things get better.  Then I go back on again.  The goal is to take as much of this medication as I possibly can.  I'm happy with this plan and relieved, too.  It would have been hard to hear that I had to stop taking the drug, and hard to hear that I had to go on like I had been while on the drug.  It's all good.

Barbe - I hear you. Its damn hard to be in a room with senior citizens and have them blow past you when it comes to health.  But you are up and moving, girl.  This group of ladies knows how hard that can be.  Wish we could all be together for appointments and workouts - wouldn't that be nice?  For now, you're going to have to take us with you in thought.  Go, sister!  

XO, Mary 

barbe1958

Workouts?!?!?! I've just spent a WEEK in bed with a blown knee! Of all the stupid things to happen, I woke up a week ago with my knee the size of a football...sigh. Had to get a ton of it drained at the ER and was put on bedrest. Did I already mention all this? I've been very good and it's almost normal now. Back to work tomorrow but I'm having my DH drive me in and hang out as I don't know how well I'll do and it's my driving knee and I don't want to compromise my driving reacitons. Wish me luck!

jessamine

Hopefortomorrow- I'm so sorry you got such an awful response when you were first diagnosed! What a nightmare! I wouldn't want to talk about it either.

The onset of fibro is generally caused by an injury of some kind- it's not necessarily the spine (though it can be, obviously). In my case it was tendonitis in my arms.

I went to the PS again today- looks like I'll be getting in for a revision just before Xmas. Here I go again with the anesthesia and all! I had a really hard time last time- I hope it's better this time around. But this might really be the last surgery (for now) which would be so so great.

CrazyKitties

Wow, you are just recently diagnosed Suz3? How are you feeling about everything? Do you have a lot of support? I wish you the best and lots of love through this journey.

CrazyKitties

I too am very sensitive, but I had silicone implants, and even though it was hell for awhile, they have settled down. If you want to go this route, make sure your PS uses Alloderm---it makes ALL the difference.

Annabella58

Hi, I had undiagnosed thyroid (hashimotos) for years....finally went to a dr. who said "you have a goiter" tested me and said he'd never seen a thyroid so low....got fixed, acquired fibromyalgia, and also an autoimmune response to pregnancy due to a late miscarriage....caused me to have my son stillborn at 6 months. 

So I am very auto immune ; allergic to many drugs, can't get flu shots.....I think (and always have) that bc is auto immune related.  Wish they'd investigate this alot more.

Kate, hi!  I had GINORMOUS relief when I found out my D was low and began supplementing.  It's like my fibro went away.  I was told only to supplement up to 2,000 ius and oh, the relief!

Going to try magnesium also, as my GP tells me calcium needs it to bind to bone.

xoxo

Anonymous

Mary- I would love it if we could all work out together!!!  Wonder if they have special exercise classes for people with FM/CFS.  Then everyone would understand our limitations.

jessamine- Sorry you have to have another surgery so soon.  Hope the revision takes care of any issues you are having.  When is your surgery scheduled?

anniealso- I'm so sorry about your miscarriage and the loss of your son.  I can only imagine how traumatic that must have been for you and your DH.  With everything you have been through you still have such a positive spirit.

barbe1958

{{{{{{{{{{{{{{{{{{ anniealso }}}}}}}}}}}}}}}}}

jessamine

((anniealso)) wow. That is hard. I'm so glad you're feeling better at least, I hope it is long long term!!

Surgery for me again on the 20th. Soon! But it'll be good I hope. Though they just told me today they wanted me to stay overnight which surprised me- when I got my exchange I did not have to. I'm hoping it's the same as then, when they put overnight on the paperwork in case I needed/wanted to but actually I got to go home.

jessamine

Oh! Also! I went, this morning to a water exercise class for cancer patients/survivors and I feel great! I do not feel like I have to take a nap now (as I usually do after exercising) or in pain. I'm tired, but not out for the rest of the day tired. Good tired. So far, I feel I can strongly recommend this for fellow pain/fatigue sufferers! I'm just sad I'll have to stop so soon (for a while) because of the surgery.

Anonymous

jessamine- That water class sounds great!  How did you find out about it?  I wonder if they have anything like that in my area?  I'll add that to my internet research list!

jessamine

I found it through an exercise program they just started at my hospital, but it had already been going on. There must be others! If not for cancer patients specifically, maybe something similar.

suz3

Hi Ladies,

I was off the thread yesterday because I worked and then I had to drive 5 hours to get ready for my surgery tomorrow, Dec 9 ( my doctors are 5 hours away, I'm more confident in them than my rural drs.).  I've finally made a decision on my surgery which was the most difficult of my life.  I decided to go with a bmx with delayed reconstruction, until they can find out what is wrong with my neck.  I had an MRI on Monday but they still haven't told me anything.   I guess next week I'll find out if I need chemo, but with a bmx I probably won't need radiation yea.  

MAGOB- Thanks for the chemo info

Anniealso-welcome, its a great place to visit and get support.

Barb- thanks for giving me support on this decision lumpectomy vs mx it helped, I hope your knee is getting better.

Jessamine- the 20th wow, you need to take care of yourself, I hope you feel better. 

Crazykittie- Right now it is getting easier to deal with all the information (partly, because of you wonderful ladies) it is a relief to make a decision.  I'm very lucky I have a good support system, I'm staying with one daughter, and the other lives near me and has been helping me and my son has been good too.  Also my husband has been super supportive and little worried.  Today to take the edge off, I went Christmas shopping, with my husband and daughter, lots of fun.  I also bought a camisole which holds the drains for after my operation I'm having to fumble through figuring out what you need for delayed reconstruction there maybe a need for a new thread.  I'll keep you up dated on everything after my operation, probably Sat. or Sun.  Love to hear how all of you are doing.

Everyone take good care of yourself, lots of hugs

suz3

Annabella58

how very kind of all of you on the condolences...it's a long time ago (16 years for my son, my daughter would have been 18, same thing) but it still resonates.  It is extremely kind of all of you.  It's something that happened to me but it's not what I am about any more.  I do not feel that it is a coincidence that I had bc twice.  My "heart" broke twice.  We are what we feel.

I do have a daughter, a wonderful, 21 year old blessing, so I treasure her mightily.  And again, thank you all for your kindness.  It will never be OK but it is alright.  I focus on the positive.  Have to.  In my heart, I count every birthday they have and I will see them some day.  Right now, I have a job to do here.

Suz3, you must be done by now....I hope that you are feeling OK and will bounce back quickly!

I wish so much I'd done both now......I know everything will be lovely when you are finished.  Here's hoping they find out what's up with your neck very quickly and it's an easy fix.

I had delayed....in fact, I'm still a work in progress.  I had TE put in, but then sprung a leak, I guess you could call it?  The previously irradiated skin from the first lumpectomy, broke thru and I had to do chemo (couldn't get rads) but first they had to patch the break thru.  I wasn't healed up til 3 months just at the cut off date for starting chemo when we had to start, to had to quit, wait, get chemo for six months, as it was CMF, then heal up from that, and begin again with expanding, etc.  Which by that time, I was so excited to do!  They did expand me just a teeny weeny bit in the OR as I did not want to wake up flat, and then it broke down, got necrosis, but they fixed it all up and now, I have a great foob.  However,,,,still no fipple, as my PS wants to wait until I get my prophy so that I can match.  That won't be until the late summer next year, as my daughter graduates college and I want to be there.  So I will be lopsided for awhile yet.  This is why I can so get on board with anyone who does both.  Waiting for this is a total drag, going thru it again is a drag, but I'll get there!  So will you, SueZ!!

I hope all of us with extra issues such as fibro can get some good relief.  I have had relief from vitamin D and also amitriptylline at night, a very lo dose .10 mg.  Lots and lots of stretching and keep moving!

xoxo to all in treatment!

annie

Anonymous

suz3- Just wanted to let you know you are in our thoughts today.  Hope all went well and you are resting comfortably and pain free.  I also chose MX over lumpectomy so I know what a difficult decision it is.  (We have to follow our hearts, though, and in the end I made the right decision as they found much more cancer than previously thought.)  Wishing you a good recovery.  Remember to hydrate, hydrate, hydrate as that will help flush out the anesthesia which will make you feel so much better.  There is a thread on here called "Exchange City" for women who are having their TE's swapped out for implants but it really seems to just be a lot of advice for women who are in transition between MX and finishing their reconstruction.  Lots of great info!  We'd also be happy to answer any questions we can and offer support!  (gentle) (((((HUGS)))))  

Anonymous

I was doing some research about fibro and came across an article about something called "Central Sensitivity Syndrome" which it said a lot of CF/FMS patients have.  They described it as an exaggerated response to stimuli such as odors, light, noise, temperatures, humidity and pressure changes which I definitely experience.  I'm one of those people that if I have a scratchy tag on a shirt it will drive me crazy.  I'm constantly aware of everything around me and seem unable to block out anything uncomfortable.  It's as though I am hyper aware of everything going on in my body at all times.  I am wondering if this is why my implants seem to bother me more than most people.  Because my brain is constantly saying, "Hey, there's something different here!  Something's wrong!"  Does anyone else have these same issues?

barbe1958

Oh yes!! I will  yank and fondled at a tag on my clothing or a button or seam or zipper!!! I just did that yesterday for a zipper on my skirt and finally pulled my underwear up and over the waistband to cover the zipper end!

Places like Disney Land would put me in the hospital! I can't stand crowds, lights, noise, it's just too overwhelming!!!! When I HAVE to do something, my DH and family know that I have to have a nap or quiet time before I have to do it; wedding, party, get together, you name it! I can't go from stimulus to stimulus.

I'm going to look into this, thanks Kate.

barbe1958

Wow, I just touched on one article and found that highly intelligent people tend to get CSC. I have a genius IQ....do you?

Anonymous

barbe- I still remember one time my DH took me to Santa Barbara for a beach concert.  The closer it got to the starting time the more people started crowding closer and closer.  Suddenly I was completely surrounded by loud, drunk people who kept brushing up against me.  It was all I could do to not run screaming through the crowd to get away.  The only thing that kept me there was knowing how much it meant to my DH but it was definitely mind over matter.  Luckily, once the concert started people kind of spread out and sat on the sand.  Don't think I could have endured it for hours.  

dlb823

Kate, I don't have fibro but have dealt with two other auto-immune issues and am much the way you describe re. hightened stimuli -- especially the need to flee reaction I get in crowds.  I had read in the past was that oversensitivity to pain and discomfort plays a role in Irritable Bowel Syndrome (one of the things I had for years pre-bc).  In other words, those with IBC are more sensitive to pain than others.  At first read, I took it as an "it's in your head" rationale, but from what you're saying, there may be more to it.

I've also found that since chemo my reaction to multiple sound stimuli is noticeably hightened, to the point of being overly frustrated when 2 people are trying to talk to me at the same time, or when someone tries to talk to me when I'm concentrating on something else.   So your and Barbe's comments have made me wonder if that reaction is even beyond chemobrain -- maybe tied into the auto-immune predisposition.   

By the way, not sure if I posted this earlier and don't want to take the time to look back now, but I had recently met someone in cancer research (who is also a bc-survivor) who made a comment about having a theory that bc is actually an auto-immune disease, at least for some of us.  And the more I read threads like this one, the more I wonder if there is more of a connection than currently understood or acknowledged -- at least for some of us.   Deanna

barbe1958

If our immune systems are already over-loaded it makes sense we'd be succeptible to cancer.

suz3

Hi Ladies,

I am at my daughters recovering from my dmx (delayed reconstruction), I'm not recovering as fast as I'd like to because I get overdosed easily even on the least amount of drugs.  So I feel weak and drugged out.  The good news is I have had very little pain.  My surgeon was amazing she got rid of my first biopsy scare made just one scare.  I got the final pathology report, not the report I wanted 1 node involvement, meaning I'll have to have chemo, with the way I react to drugs I'm not looking forward to that.  

Kate, jessamine, anniealso, and barbe, thanks for the kind words, thoughts and prayers, they were really felt.

Interesting subject on sensitive, I to am sensitive to especial smell.  I think my body is fighting off so much, now even cancer, so I can't fight off smells that bother me.  Everything goes together. 

Well I'm going to keep up with all the interesting subjects, I'll let you know if my drs give any interesting news.

Please take care, lots of hugs

suz3 

dlb823

Barbe, I guess I have trouble grasping how our immune systems are "overloaded" if they're on overdrive, which is how I visualized my autoimmune condition.  With the one I had (not IBC, which I'm not sure is considered totally autoimmune), I was told my body was basically attacking itself, which always sounded to me like my immune system was functioning, but out of control.  Maybe you can explain it to me better, but I have a hard time understanding how it was attacking me (normal healthy cells) if it wasn't working well.......... 

Anonymous

Deanna- I didn't have chemo, but even since all my surgeries, I have noticed those same issues with sound stimuli have gotten much worse than they used to be.  Even when my DH and I go out to dinner it is almost impossible to block out other people's conversations around me.  It is very frustrating.  I can't read or concentrate on something unless it is completely quiet.  Very interesting theory about BC being auto-immune.  It does make a lot of sense, though.

barbe1958

Deanna, not sure if I understand your question. If your system is over-loaded, it's not working properly, thus you are susceptible to disease, etc. As for attacking your body, yep, that's what it does when it goes out of control. Let's say you have a cut and all the white blood cells come to fix it. Perfect! BUT, what if they keep coming! And coming!! All of a sudden you'll have an infection or something. Your system broke down. Started off doing the right thing, then like a car that overheats it just went too far. And, like a car that overheats, it can settle down again and keep working.

Does that make more sense? If not, let me know and I'll try to describe it better, but that's how I think of it.

dlb823

Barbe, your analogy is how I understand it.  But I guess I've had a hard time equating a poorly functioning immune system, which is how I picture an immune system that does not have sufficient reserves to stop a disease process, with one that continually attacks and damages our bodies.  It seems like the latter is very strong, just misdirected for some reason.  Oh (light bulb moment!)... are you saying b'cuz it's misdirected to the autoimmune area it's attacking, it's ignoring other crisis's going on in our bodies???  That would make sense to me!

barbe1958

YES!!!!!!!!!!!!! You got it in one!! I was just making up the expanation in my head when I read it in your post. Your immune system isn't receiving proper signals and is busy doing bad stuff somewhere else when you really need it. It's like a child with ADD....

jessamine

I , too, suffer from the hyper-sensitivity- worse and worse for a long time now. I barely listen to music anymore, and can't stand crowds, etc. And I know I'm more pain sensitive than others- such a great thing to have in combination with chronic pain! Don't know how or where it ifts in, but I've found that my symptoms in this area line up perfectly with folks who have suffered a traumatic brain injury (such as a stroke)(except for the pain thing). I assumed for a long time it was because of the neurological component of FM,  but with auto-immune sufferers reporting the same thing, and the new virus news for FM/CFS, I really don't know. So many questions.

Suz- I hope you don't do too badly on chemo. It's scary, but you just don't know! Maybe it'll be ok! I'm so so sensitive too, but I made it through- I couldn't tolerate the steroids at all, but other than that, it wasn't as bad as I'd feared. It sucked. And I had some weird reactions to things that took a while to sort out. But I was able to tolerate the chemo despite my fears that that wouldn't be the case and it was very effective. I hope and wish the same for you!