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

Isn't it funny how hard mornings can be?  Between the stiffness, aches, (my own pain from the TE), recovering from bad dreams, and my own silly thoughts, mornings are the hardest time!  In the summer it is easier, but during the school year, when I am working, those early mornings only mean sleep deprivation for me.  I believe my most productive time of the day is well after 10 a.m.!!

Good luck ladies with your thyroid issues.  I did 'outgrow' mine, which may be unusual, but it resolved after about 7 years.  I needed less and less of the Synthroid and felt better and better over time.  And yes - it was a relief when I was finally diagnosed.  Funny, my thyroid issues I believe caused my FM.  It was so out of whack that it was the trauma that triggered the fibro. That was following the birth of my 3rd child @ age 40.  Too  much happened I think for my body to handle.

Sounds like a nice place to grow up!  Funny, I have a real wave of fatique that hits around 3-4 in the afternoon as well.  that's probably why i'm on the laptop right now!  I agree with you - that extra hour of sleep would be the deciding factor for me too!!

3jays, when did they come up with a definitive blood test for MS? I thought when they'd tried everything else, and it was negative, then you were diagnosed with MS. The ANA panel used to be used for Lupus and stuff like that, but it turned out to have negative positives and positive negatives....

I saw a line on a Hashimoto data page that said "thyroid removed with no follow-up treatment with Thyroxine" and I thought ME!! That's ME!!!!!!

Jessamine:  I am new to this site, but was so glad to find this forum about chronic health issues & breast cancer. I, too, live in the SF Bay Area (Alameda & Contra Costa Co.), and it makes me so angry that our b.c. numbers are so high!  I am sort of freaking out about having to go through chemo.  I had a bi-lateral mast. on 6/29/11, and am doing well as far as that goes; but, I was totally freaked out when my onco recommended a chemo protocol called Dose Dense (DD), which is given in 2 week cycles instead of the usual 3.  The drugs are AC-T; nasty stuff! 

According to very reputable resources, DD can be harder on the patient and can have more profound short and long-term side effects, including a chance of getting a fatal leukemia anywhere from 5-30 years after treatment!  Also, it has a high probability of giving patients neuropathy, something I already suffer from with my FMS and other chronic health/pain issues.

Needless to say, I told my doctor I wanted some alternatives to DD.  One she gave me is CMF, the more standard 3 week treatment.  I have to let her know by Aug. 15.  I will start treatment sometime beginning of Sept.

I have considered using medical marijuana in the past for my chronic pain issues.  All of my doctors (Kaiser) agree that it is certainly an option, but my psychiatrist (see him for meds.) and therapist have concerns about anxiety, because I have a history of anxiety disorder & agoraphobia, which I've had under control for years.  I dont' think my Kasier doctors can authorize me getting the card for using med. marijuana, but I am nevertheless looking into it.  I've been told that if I get anxiety, it will lessen over time, and (believe it or not!) that if I feel anxious when using it, to smell a peach!  (Yep, that's right ... a peach!)  So I think I am going to go ahead and get my card, just to have it in case the chemo hits me hard.  I even know someone who knows distributors who will deliver to the house, which will probably be necessary if I'm feeling lousy from the chemo.

The other thing is that pill that I will have to take for 5-10 years; it is known to have a very common side effect of joint and muscle pain.  Just what I need, more FMS symptoms!  That is another reason why I'm considering the med. mariuana. 

Like you, I would like to hear from other FMS patients re: their experiences with b.c. treatments.  I notiice your post is from some time ago; I hope you are hanging in there and doing well.  If you can, I'd like to hear how things are going for you.  Nice to meet you!

Cydsong: my exp. with D?D chemo wasn't a good one. my body couldn't handle it. i had one tx and got very sick, not immed., but after the shot.. i continued with chem; but at a much slower rate.. the only problem i had then was having to go back to be hydrated, as i couldn't keep it to normal levels. i DID end up with some nueropathy . Hand/ Foot syndrome , which could 've been the taxotere, but im diabetic, and my number fluctuated wildly during chemo. that also could be what cause it. either way; i've been NED not otherwise detected for almost 3 years, and know i made the right decisions. except, they didn't consider either my MS; not FM; when rxing DD. i wouldn't have done even one of those, if i;d known...

   of course, thats' just 1 persons story... other ple may have done well. wait and see what others have to say... either way; i wish you well.. it gets to be ok; after the first one, or two.. your'e always scared to death in the beg.. it'll be allright. come back here, and let us know.... 3jays

It's been a month since anyone has posted.  Does that mean we're feeling better or too lousy to crawl to the computer?  I've been having a rough week or so with the FM.  The hardest part about FM is it affects so many things that you come across as some kind of hypochondriac.  My DH, who is normally very empathetic, said the other night, "There always seems to be something going on with you body that isn't right or that you're complaining about."  I said, "Yes, it's called fibromyalgia.  Hello?  Have we just met?"  I feel like once again I need to print out the list of varying symptoms so he can see it's not in my head.  (Or maybe it is because I think FM is a neurological disorder.)  Unless you deal with chronic pain and fatigue every day I don't think you can truly understand.  

3jays- Sorry the thyroid meds are making you sick.  I think I had the same thing when I took them.  My GP told me to go off them until after my revision.  Then, when my Gyn retested she said everything was within normal ranges.  Now I need to find out what my levels were with the GP, and with the Gyn, and make sure they're both on the same page as to what is normal.  Are there other meds they can try?  I think anyone with auto-immune is just hypersensitive to any med.  They should start us all out on the child's dose.  Hope they can find something that works for you.  (((hugs)))

Interesting 3jays, I thought this seemed to be becoming a recon thread too!! I quietly backed off. Can't imagine being as brave as Kate to have recon with my FM!!!

Stanzie- It does make sense.  I think for a lot of PS's the whole recon thing is new to them.  I think they're used to doing simple little augmentations or something and don't want to deal with any complicated cases.  The second I started having issues outside of the norm my PS seemed to drop me like a hot potato.  I wish doctors like that would just stick to boob and nose jobs.  I feel like those of us who have auto-immune stuff almost need our own subset of specialists but don't think those exist.  

Can I jump in here without reading through all the pages? I've had reflex sympathetic dystrophy, also called chronic regional pain syndrome since I had a bad accident at a gym in 2001 or so. I have it in my knees and legs and in my left shoulder. I also have severe spinal stenosis in my neck that causes a lot of pain in my arm, neck and back. Last October through December I was hospitalized a total of a month for angioedema/anaphylaxis, basically, my face would swell to the point my throat would close. The doctors couldn't figure out what it was. Some said it was allergies, and there was an allergic component to it, but then I had reactions to water. It turned out to be related to estrogen. I swelled more around my period. When I was in the hospital, once for six days, I complained of pain in my left breast. The genius doctors told me to get a mammogram when I was out of the hospital and didn't see any relation between my breast pain and the swelling. After I was diagnosed with BC, my allergist wondered aloud if my swelling would go away once the cancer was gone. Guess what? It did, not completely, but much improved.



Being in the hospital was horrible. One "world renown" specialist said the problem was the narcotics I'd been taking for pain was activating my mast cells and made me stop taking all pain medication. I did and my face was still swollen, and he insinuated that I was taking drugs on the DL. Nothing like being treated like an addict when you have a legitimate pain syndrome.



Thanks for starting this thread.

HAH! My doc sent me to a dietician as I am 'border-line' diabetic. She went through all that I eat and actually said I didn't eat enough carbs!!! She suggested I get them as vegetables so I don't know if she was really saying to eat more veggies...hmmm... But, if you can friggin' believe it, I now have to do the blood-metre thing!!!!!!! Talk about always being aware of one's health!

emma: welcome, sorry for such a horror show your hosp stay was. glad your better, at least.. any auto immune thing screws with all the rest.. Barbe.. im sending you a pm re: borderline diabetes.. im also diabetic. but, haven't been too good with my diet with the hypo.. its making me feel like im starving!!! they def. have tried every low dose they can for the hypo.. noone will rx me for armour. its a liability issue , getting it from Canada. haven't found anyone doing it in the us. it may be my only chance...((((((sigh))))))) oh well, one foot in front of the other, as they say.........3jays

Linda- I've heard of lots of body aches with the different meds for women who don't have auto-immune so I definitely think it could be an extra factor for ones like us.  I don't take any of them so can't speak to that.  Just wondering, though, do you have implants?  I have heard that the introduction of anything foreign in our bodies can trigger auto-immune episodes that come and go with more frequency.  For me, I think having the pectoral muscles altered during recon has created lots of issues, too.  With FM, we have a decreased tolerance for exercise in general so stretching those pecs is like constant exercise as far as your body is concerned.  With FM we have so many different sensitivities going on it's really hard to pinpoint one particular thing but I do think all these different aspects of BC have a negative impact on auto-immune sufferers particularly FM.  You summed it up well when you said we've lost our tools for a normal life.

Thnsx kate and 3jays. It sure does seem like autoimmune to me. im bout ready to chuck it all too. But with these hormonal changes going on i am worried to ignore them, when we are supposed to be reducing them. Seems like a big hormone surge starting about 5 weeks after i stopped the tamoxifen. I guess i should present this problem in the hormone trtmnt. forum also. Its like im starting menopause and fms all over again!