anyone out there with auto-immune/chronic pain issues before dx?
Comments
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For those that have fibro here's a link to a survey about how fibro has impacted your relationships. I think this is something that should be studied because I don't think our doctors truly understand the ripple effect that some auto-immune issues can cause. Being in chronic pain and the accompanying fatigue greatly affects my time with my DH and DS. I also think friends don't always understand. If you're interested in taking the survey I'll try to post a link-
http://www.prohealth.com/library/showarticle.cfm?libid=16914
On a different note, I was dx with LE last month which has been causing additional pain. I've never considered pushing for pain meds before but as each pain-causing issue gets piled on it's been very challenging. And my fibro symptoms seem to be escalating, lately. I'm starting with a new physical therapist this week. Hoping she can help.
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I was diagnosed with CFIDS -- chronic fatigue and immune dysfunction syndrome -- almost 20 years ago... unfortunately back then, considered by some to be an imaginary illness
After the initial episode that kept me out of work for several months, it would only reappear during periods of major stress and I was always able to manage it by dialing down by intense lifestyle. I found that regular exercise helped keep it away. Last year, I had some weird incidents of rare skin infections. Other than that, right before my cancer diagnosis, I was said to be in "perfect health" during my anual exam. Anyway, I suspect that the CFIDS might have played a role in my breast cancer. -
Just found this thread and have been reading all morning. I have had pain issues for the past three years. Diagnosed with degenerative dics desease. Had a spinal fusion in Oct 2009, dics collapsed and were pinching nerves. Had no feeling in my left arm. Fast forward, bc in 2011. Since, have had mri of lumbar spine, herniated dics. Mri of shoulder, tendinitis. Would not be able to get through the day without pain meds. I have to wonder, is this pain related to bc. I have not had any scans, lymphe nodes were neg. I am so convinced this cancer is in my bones. I just thought how could someone my age 48, have so many pain issues. Now that I have found this thread, I know I am not alone. Also, just found my vit D was a 10. Started taking 5000 iu a day. Hopefully, this will help with the pain. Some days it is just so hard to get through. It sucks to just have to push to get through the day, looking forward to my bed and a heating pad at the end of the day.
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There is a growing school of thought that links inflammation with cancer. I was diagnosed with interstitial cystitis just a few months before my cancer diagnosis. This has been shown to be an autoimmune disease inflammatory in nature. Recently on the national news (late March or early April 2012) there were major news stories that aspirin (an anti-inflammatory) had a significant impact on cancer re-occurrance. That is, taking aspirin was shown to significantly reduce the risk of cancer or re-occurrance of cancer. I called my onc and he said there is suggestive evidence to support this theory and that I could take aspirin (low dose) with his permission. I now take a baby aspirin (81mgs)/day. You could probably go online to msnbc, I think to find the link to these medical reports. Many people are finding a link to inflammation and cancer. Good luck.
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jenlee- I believe my fibro contributed to my BC as well. I think when anyone is suffering from an auto-immune disease their body is being constantly stressed. We can only go so long in that state before something starts breaking down. I can also relate to the "imaginary disease" thing. I've gotten that attitude from many doctors.
suebak- The vitamin D makes a big difference for me. I can really tell when I forget to take it or don't get outside much. The symptoms of vitamin d deficiency are very similar to the symptoms of fibro and other auto immune. I always wondered if the auto immune is brought on by the lack of d or is the lack of d brought on by the auto immune? (Chicken or the egg?) I wanted to add, too, that many women following MX end up with shoulder and spine issues. If you were already dealing with that it's no wonder you're symptoms have gotten worse. There's been studies showing that our posture can change after MX where we become more hunched as though in a "protect position" over our chests. Even a small adjustment like that can throw everything out of whack. I've just started PT and am hoping that can help with some of my pain. I understand the fear of bone mets, though, and I would definitely ask your BS or onco if some tests can be done for your peace of mind if it is truly worrying you.
every8th- I've been reading about the inflammation/cancer link as well. I, too, have started the baby aspirin regime. I figured it couldn't hurt and it's very inexpensive. I didn't find the msnbc but thought this article was interesting-
http://www.scientificamerican.com/article.cfm?id=chronic-inflammation-cancer
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I am a 59 year old postmenopausal woman with an unidentified chronic inflammatory autoimmune disease since 1988. I was diagnosed with BC, stage 1b, node negative, E-P positive in Oct. of 2011. I have finished chemo with TC-6 two weeks ago. During chemo most of the joint pain from the inflammatory condition left. I had a harder time with the chemo than many people I know.
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myra- It's so interesting that your pain left during chemo. I would have thought the opposite would happen. I can relate to your unidentified chronic inflammatory auto-immune.
I had always thought I had fibro but now I'm not sure. Rhuematologist said I don't fit with enough parameters. Neurologist ruled out MS (which I thought I had because of plaques in the brain). GP ruled out hypothyroidism with blood tests and is now recommending I see an endocrinologist. Has anyone been seen by one? Not sure exactly what they do- check hormones and stuff? I did see a show on chronic inflammation and they recommended aspirin once a day so am now taking that to see if it helps. I told my GP I am so frustrated by feeling like crud every day- achy, tired and just worn out. On top of all that just got dx with LE. Ugh!
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kate: i've been on baby asprin for a long time.. 1st neuro said DEF inflamatory disease affects the ms.. and, my vit d was 5 when 1st tested, so obvy, take 5,00 a day now. last blood test showed b 12 was low, so we;ve added that, too. the neuro tried symmetryl on me, hoping id "perk " up. with the fatique.. made no difference whatsoever..
when we 1st started testing, they said fibo; then, they found my brain was full of lesions, and "black holes" def. ms.. but, HE said you can have both.. gee, thanks...
why did they rule out ms for you?? although i must say here, my neuro doesn't belive ANY of the tx for ms are appropriate. they're immune suppressants.. obvy.. so, although there's plenty of women here taking some tx i don't.it stands to make sense the pain would recede.. during chemo, since they're all immno supressants.. unfortunately, it comes back.. ( and als don't help, eitherain got much better with chemo, but, with dense dose, i almost died in the beg.. they gave me smaller doses, more of them 65 to be precise.. took a whole year!!!
so, even if it is ms, you wouldn't (probably) want to take tx for it. and, you already are taking the precautions you have to; hydrating, staying out of the sun...
the way they tried to dx the ms was with a spinal tap. i did it.. later, i found out that if its in the spinal fluid, you're way beyond most help anyway..
so, i just keep trucking, when i can.. the dr nixed the other drug, for off side tx.. it won't help if it is the ms attacking the thyroid darn it..3jays
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3jays- They did a brain MRI several years ago when I had sudden hearing loss. When they saw the brain plaques the first neuro said it was MS. Went to the Mayo Clinic for a 2nd opinion and they gave me every test known to man (blood, spinal tap, nerve conduction tests, etc.) and they said based on the negative spinal and the location of the plaques they didn't believe it was MS but to have the MRI repeated every few years to check for progression. Just had another MRI done last fall and no new plaques. New neuro said he believes I did have MS but that it is remission. Doesn't explain why my symptoms are getting progressively worse, though.
As far as fatigue have you tried Provigil? I've taken it in the past and it's worked pretty well. I think it just went generic because now they're pushing something called Nuvigil. Don't let them give you that. It's basically the same thing as Provigil but they can charge a lot more. I read that as soon as a drug is going generic they come up with a new formula that might have one tiny thing changed about it so they can charge a ton more for the same drug.
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thanks for the suggestion on the providgil, Kate.. im gonna ask next drs appt...
as far as the ms, thats' what i have.. relapse -remitting ms.. i did well for years, but the plaque has progressed, as time went on..
there's levels of remission, so you could be Clincally "in remission" and still have symptoms.. if your leasions/plaques have not spread, your'e on the good side, if it IS ms..
from reading how you live, there's nothing you're doing to make the ms worse, so you just follow it. i would have an mri every year, if possible. my ins always paid for the rule outs.. and, now, they pay yearly for one.
since the hypothyroid, though, i don't want too much of the dye.. i have to use gatalinium, as (of course) im allergic to ivp dye.. i have to research if the gattalinium is also bad for the thyroid.. i know i go overboard, but i've learned to measure twice, and cut once, as far as meds go...
have a good Mothers Day Ya'll 3jays
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for all of us working so hard to feel have better... happy mothers day 3jays -
I am new here and going through the forums and came across this one. I have not been diagnosed with BC yet still in testing process, and praying that it reveals nothing bad :(I wrote about it in the newbe forum. But to add to this topic, i have lupus, fibro, sjogrens, and Reynolds. I thought the bad news for me was last year, when i was told my main aorta heart valve was leaking. But I don't thing anything I have been through this far has scared me more then being told I have a solid 5 cm mass in my left breast. My thought go out to all of you ladies here. I will be adding all of you to my prayers. So glad I found this site!!
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Did anyone have paraneoplastic syndrome prior to Breast Cancer. I believe I did and when the tumors were removed and after chemo, I was better...but left with neuropathy in my feet, not from the chemo..it is permanent and it is now getting worse after 8 years...hmmmm
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SoCalLisa, I didn't have it before diagnosis but I did develop it after my Stage IV diagnosis. I've had 7 plasma exchange treatments to remove the antibody and I am now doing much better. Did get some of my mobility back.
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cspiritl- So sorry for what you're dealing with on top of everything else. I know how hard that time is while waiting for test results. We're all hoping you get some great news. No matter what, though, you've found a great site for information and support. This place was a lifeline for me as I was going through everything and still is. I know it's easy to say but try not to get too far ahead of yourself with your diagnosis. I started googling everything I could find about breast cancer and ended up scaring the h*** out of myself. Just realize that even if it's breast cancer there are many different kinds and most are easily treatable. Wishing you all the best. BTW, what part of Arizona are you? I'm out in Mesa!
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Kate I live in Oro Valley, Az
Yes you are right, i got right on my computer and started my research! There has been some things i have read that does scare me. I am so glad I found this site in searching the net. I thank all of you for your kind and encouraging words! Have a wonderful Mother's day ladies
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a big "welcome" to you c spiriti... these are great ladies!!!
everything i went thru BEFORE my dx with bc helped me cope with bc.. but, that didn't mean i didn't freak out, nonethe less!!!!3jays
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cspiritl- Wishing you good luck with your test results today! Please keep us posted.
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Hi Everyone! I'm new here was just dx with stage 1, grade 1 BC Jan. 25th. I'll be 63 next month and I've had fibromyalgia since at least 1996. Around 1993 or 94 docs were saying I had CFS. I always knew that dx wasn't right. I could tell that I just didn't fit enough of the criteria. I also have chronic hepatitis C which in itself is known to cause or be related to all sorts of autoimmune and other illnesses. I have Reynards and Sjorgens (sp? on both of these). I've been taking heavy meds for the severe chronic pain I have for yrs. Recently I've been trying to go down.
Oh, like many of you, this just goes on and on... I've have 2 major back fusions, the last one 10 levels from T8-S1 that failed. Now I have Flat Back Syndrome which means my whole body from about the bra level in back up, leans forward. I'm getting more and more like those little old ladies who are bent over from the waist. In fact, I finally found an amazing surgeon who was going to attempt to fix this when I got the BC dx. I think I'm more depressed from that than the dx.
I just got results of the Oncotype DX test today. it is 20 which is inconclusive. I'll see the Oncologist tomorrow to see what he thinks. I think it means no chemo, but the relapse rate is higher than they'd like to see. Take care Everyone! I'm hoping to get to know many of you.
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Welcome mountain Gem!!!you've met a group of wonderful ladies, on this thread..
we all have had otherillnesses to deal with, along with bc.. and we're still here, talking about it!!!3jaysmom
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Somehow this thread got bumped off my favorites! Grrrr!
Mountain Gem- Hope you got some good news from your oncologist!
I have to have a little rant now....
Why is it when a doctor can't figure out what the heck is wrong with you they want to label you as depressed? This ticks me off! I think it is pure laziness on their part. After being tested for MS and fibro it was suggested I get my thyroid checked. Just had it done 6 months ago but figured, what the heck? Anyway, 6 months ago TSH was 2.710 and now it is 4.190 and I have about 18-20 symptoms of hypothyroidism but doctor says 4.190 is still within the normal range. (Normal for who?) He won't even consider treating me to see if symptoms improve. Then implies perhaps I'm depressed. I wanted to put a depression right in the middle of his head.
I agree that depression can mimic a lot of auto-immune diseases but swollen face, swollen tongue, low body temperature and even loss of eyebrows? How the h*** is that depression?!? ok....done with my rant now... -
Wow, Kate. I certainly understand your frustration. Hope it helped to rant a bit.
I was finally diagnosed correctly with the auto-immune disorder, Psoriatic Arthrits, the same month as my breast cancer diagnosis. The cancer occurred on a routine yearly mammogram, but I had been going to PCPs for about 40 years with pain that they could not diagnose.
The problem was that the auto-immune disorder I have is in the family of diseases, headed by ankylosing spondylitis, that tests negative on the arthritis panels. It was an alert PCP who asked exactly where my low back pain was (the sacroiliac joint) and tested me for the gene. Fortunately, I tested positive and about two years later finally got the right diagnosis--from my second rheumatologist.
I was diagnosed with fibromyalgia in the 1980s, but many people do not see fibro as an auto-immune disorder. I also had a great PCP who said, "All of my fibro patients have sleep apnea. Inability to get restful, deep sleep creates the same symtoms as fibro." After a referral for a sleep study, I also had a sleep apnea diagnosis. Of course, I still met the criteria for a fibro diagnosis and so still had that, too.
Unfortunately, the rheumatologist who diagnosed me can't treat me but, she said, chemo will be stronger than what I could give you. Still waiting for my oncotype results and hoping they'll be definitive, not in the grey area.
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I got the "maybe you are depressed; you have every right to be" speech from my dr too. I pushed a little harder and I had a sleep study and found out I have severe sleep apnea. 45 stop breathing episodes every hour. That might explain my exhaustion. I am starting on a CPAP machine tonight and am hopeful that I will feel more rested soon.
Sometimes we have to push back...
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HealingDreams- Sounds like you've had your own frustrations, and for a longer time, so glad you're finally getting some answers. I'm not familiar with that type of arthritis but have great empathy for anyone in chronic pain. Good luck with your onco results.
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Ginger- Good for you for pushing back!
I finally did, too. I made an appointment with my old GP, who has known me for 20+ years, to have her go over my test results. I went in with all my test results, research on treating hypothyroidism based on symtoms not numbers, and even had photos of myself on my Ipad showing how much my face has swelled up over the past few months. I was ready for battle but she was in total agreement that it warranted treatment. She said that even though my levels are "normal" it's the fact that they've increased so dramatically in such a short period of time that she looks at. She is putting me on the thyroid meds to see if my symptoms improve. I was so relieved that someone was finally listening to me that I started bawling. I should have gone to her in the first place but she had moved her office and was now an hour away from me. Now I know she's worth the trip.
I wish doctors would realize that all of us, but particularly those of us with auto-immune, are so tuned into our bodies that we know when something isn't right. No one could see the facial swelling but me until I showed photos of myself from one month to another.
Now here's hoping the meds work and I can start feeling quasi-human again. Not expecting it to fix all my woes but really hoping it helps.
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Hey, just found this topic.
Another FM patient here, have had 'something' for about 25-28 years...was labelled ME, then Chronic Fatigue, then after ruling out Lyme disease and Lupus, had another batch of testing and was told it was FM about 12 or so years ago....was dx'd with BC 9 years ago. The medics have been terrible, very disbelieving, and generally unhelpful. After all there's not often anything to 'see,' just a whining woman going on and on about wanting some pain relief ! When I was dx'd with BC, after the first shock of things I almost felt some sort of relief that I would be believed, at long last,when I visited my GP.
Like you, barbe I sometimes have awful flares, and am ultra sensitive to touch....but what to do ?? We only have one life, one go at things, so we make the most of what we can when we can ! If anything I am a lot worse than I was 10 years ago, but can manage it a bit easier nowadays....realise it isn't going to kill me, well, not at the moment! so I live with it.
Isabella.
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thanks, isabella: i needed that.. a good boot in the rear, right now. im just reacting to so many emoions lately, all leftovers from bc.. but, im tryimng to get back to "fighting " stance. we've done the auto immune thing for so long, i thought i got passed this, but apparently not... good to see you all, Kate, got your pm , and am glad the GP is going to give you meds...
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Good morning ladies,
Last week I had two docs call me with dicey news. My PCP said I have high calcium that could be related to a parathyroid tumor, then the derm called to tell me she and my allergist think I have mastocytosis. I've been suffering from RSD since an accident at the gym in 2002, and the masto is another level of autoimmune disease. I have had a rash for years, am resistant to most meds and foods (lots of food allergies) and have to carry an epipen because I sometimes have bouts of angioedema that cause anaphylaxis. Anyone else? -
Eema- good to see you here but I am sorry for these latest developments. I don't have any advice but maybe someone else will. Just wants to say hi from an October sister.
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Eema- I'm sorry you're dealing with all these other medical issues on top of BC. It seems like we're all dealing with different types of auto-immune so don't have any medical advice but can offer you a whole lot of empathy. It's hard dealing with multiple issues and trying to figure out what is a symptom and what is a side effect from meds and what's a new thing all together. It can be really frustrating.
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