Posted on: Jun 21, 2010 05:23 AM, edited Dec 15, 2010 01:01 AM by jessamine
I feel like I see a lot of people besides myself talking about having these kind of health problems prior to diagnosis, many more than would make sense statistically. What's going on?
I've been dealing with fibromyalgia and chemical sensitivities for 5 years now, was dx with BC less than 1 year ago.
We could share info about the special challenges of dealing with treatments when already debilitated, and things we've found to help, as well as advances in research that might shed light on our special challenges, and our ideas about what might be happening.
Sorry, all other ladies, for putting this in the stage l and ll section- it didn't seem to fit anywhere.
Posts 451 - 480 (576 total)
Aug 6, 2011 11:28 AM mybee333 wrote:
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.
Aug 6, 2011 01:55 PM Kate33 wrote:
mybee- Wyoming, MI is just outside Grand Rapids. It's a very small town but great place to grow up. I agree with the morning thing. It's definitely the hardest time of the day for me followed by my 3:00 p.m. "crash". I've never been much of a morning person so am not looking forward to school starting next week. My DS is starting high school (!!!) and with the budget cuts they have a school bus shortage. School starts at 8:00 a.m. but if he rides the bus he'll be dropped off at school at 7:00 a.m. Crazy! So guess we'll be getting up and driving him. I'd rather have the extra hour of sleep! :)
Aug 6, 2011 04:19 PM mybee333 wrote:
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!!
Aug 7, 2011 03:39 AM 3jaysmom wrote:
i was glad to hear they can tell if its' Hashimotos with one blood test, much like MS.. it either is, or it isn't . since there's a mass there, its something! thanks for sharing your experience, mybee. one can only hope. i want to feel well enought o go to Mecca in sept. but that may be too optimistic. i haven't given up hoping, yet..
Bare, i can't believe they removed your thyroid and didn't give you anything!! no wonder your so tired, and hurt!! i hope you get it straightened out........3jays
Aug 7, 2011 11:02 AM barbe1958 wrote:
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!!!!!!
Aug 7, 2011 10:22 PM 3jaysmom wrote:
yep, you're right, Barbe.. i must've siad it wrong. there's no definitive test for MS; Lupus, yes MS, no.. and, there's suppossed to be one for Hashimotos' also.. im glad youre gonna get cked out soon.. i CANNOT believe they didn't rx you something!!!
now, i'm hoping this will be the breakthru you've needed, and a little synthyroid will get you more energy, and less pain.. im hoping my hair will return, also, but we'll have to wait and see...
i've been having allergic reaction to the name brand, as well as the generic.. or maybe NOT.. i remembered today i started a oral Vit D the same day as my eye symptoms started. gonna stop it; hopefully, all will recede. then, i'll take another form, and we'll see.. hope springs eternal!!!! be well ladies..........3jays
Aug 8, 2011 05:04 AM cydsong wrote:
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!
Aug 9, 2011 02:44 AM 3jaysmom wrote:
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
Aug 9, 2011 10:19 PM jessamine wrote:
Cydsong- hi there neighbor! there are a lot of us here, (and everywhere) -but it does seem especially bad here. On the other hand, we also have access to some of the best BC care in the country! So that's something.
The dose dense seems totally scary-- it came up for me and I said, no thanks. And switched oncs. I'm not saying you need to do that- but you should certainly get a 2nd opinion. Everyone should anyway! Insurance will pay, and all oncs are different- the more information we have, the better to make decisions with. I personally can't see why you should need the DD with your dx, but if there is a reason, a 2nd dr would say the same, and then you'd know. I did regular doses, couldn't tolerate it and had to cut it almost in half, and had a terrific response to chemo- so more isn't everything. your body has to work hard too, and keeping it able to do so isn't trivial.
By the long term pill, I assume you mean the tamoxifen or aromatase inhibitors? People do have SE issues with those- I am on them (femara) and have had a hard time with SEs off and on (am currently on, again, a reduced dose) but oddly not the increased pain that I had expected, despite having the fibro. So, it's unpredictable- you may not have problems at all. I'd say, hope for the best, and if it doesn't happen that way, deal with it then. Just do what you can to get through chemo for now- it's miserable and stupid, and the other stuff won't seem as bad after you've dealt with that. This board is so helpful for chemo tips though, you'll see. you can cut your SEs in half just by getting the benefit of everyone's experiences and tips.
I don't know about marijauna. I meant to try it- even got some- but never did. I have always hated the feeling of it so much- it makes me anxious- that I'd be miserable with nausea but still not try it it because i'd get afraid of being more miserable. Not very encouraging; sorry. On the other hand, I know people who take it for anxiety and Fibro pain and swear by it so who knows? Maybe give it a test run before you need it?
Good luck! Have you found the local support groups and resources? There are lots! -- feel free to PM me anytime.....I don't check here every day, but I'm around....
Sep 8, 2011 11:44 AM Kate33 wrote:
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.
Sep 8, 2011 12:21 PM 3jaysmom wrote:
hi Kate: i absolutely agree with you. ive got a double dx: ms/fm and ple just think i'm some kinda drama queen. they have no idea what we go thru... i've been really sick with this new hypo thyroid.. so i haven't been cking in lately. i also have nothing to say about recon; and we were going there a lot in the near past..
i hope everyone is able to deal with whats' going on, with them. its a hard row to hoe, no matter what......too many things going on all the time. we have to find pain meds that work as well as they can, go from there, and just realize no one other than those that suffer with immune stuff understand. Good to see you all..............3jays
Sep 8, 2011 12:55 PM Kate33 wrote:
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)))
Sep 8, 2011 01:08 PM, edited Sep 18, 2011 08:41 PM by Denise2730
Was diagnosed with fibromyalgia in the mid 90's. Besides the pain, it's the lack of refreshing sleep that really keeps me from enjoying life fully.
It's also one of the reasons that I am refusing tamoxifen and most likely chemo. I don't need my fibro symptoms to get worse.
Although I wish none of us had to be on this thread, it's comforting to know we don't suffer alone.
Sep 8, 2011 06:12 PM Stanzie wrote:
3jays- I'm so sorry you are having a rough time with thyroid meds. Perhaps they just haven't figured out the correct dose yet since you have other issues and other meds it might be harder to tweak. I found once I was on a good dose I felt MUCH better all around. I hope you will find this as well. I do however remember they went too far at one point and ended up hyper -thyroid and had to change some supplements I was taking and it has been gosh 9 years and just have it checked once a year and it has been ok. Anyway, hope it works for you - certainly don't need more issues.
Kate - I really do NOT understand why that Doc would fail to mention FM patients can experience more pain... that is negligent as far as I'm concerned. I think my trainer/friend was saying more the doctor I went to first didn't want things not to turn out all right cause of MS and there fore discouraged me as a patient. MS is similar in many ways to FM but not sure if it also presents so differently in patients and can change from being all right one day and wake up unable to walk or see the next day... which then might come back to being all right. So, yes I can see why that would be worrisome for doctors but my neurologist gave me a clear to have the procedures done so you would think the responsibility would go back to him and not the PS. I just think this Doc was more concerned with his positive rating and didn't want me to put a mark on his record in case things didn't go well. Hope this makes sense...
Sep 8, 2011 06:50 PM Kate33 wrote:
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.
Sep 9, 2011 03:49 AM jessamine wrote:
Hi--- I have been dealing with an episode of-- ta-da! lymphedema! I sincerely hope it was a one time thing and I can now just be much more vigilant, because I just can't take it. The idea of another chronic, no cure condition...well you all understand, right? I kind of can't face the possibility. So I'm still in denial. The swelling has gone down, and maybe it will be okay....But yes, I am taking it seriously and dealing with it. But I just...my feelings about adding this to the list of things wrong with me....
Disabling tendonitis, both arms. Fibro. Chemical sensitivities. BC. BRCA+. PLUS lymphedema? I'm 37 years old, I should be, you know, young and healthy!
On the BC front- I might get switched from femara to tamox. I actually feel pretty excited about this. I might, could it be, maybe...want to have sex again?? It sounds too good to be true...
Sep 9, 2011 08:26 AM Eema wrote:
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.
Sep 9, 2011 12:21 PM Kate33 wrote:
jessamine- OH, BIG HUGS 'cuz that SUCKS! I totally get the "I do not want to deal with one more physical issue"! (I'm actually having an LE evaluation on Tuesday. I've been having issues since my revision in May.) It just seems incredibly unfair that you now have to deal with this, too. It sounds like they caught it early so hoping it will stay as just a mild case. Hoping the Tamox works out, too, for other obvious reasons!
Eema- Welcome! Thanks for sharing your story. I think a lot of us have been treated as "drug seekers" at one time or another so can empathize. That specialist is an a$$. Sorry you've been dealing with so much on top of the BC.
Sep 10, 2011 02:06 PM barbe1958 wrote: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!
Sep 11, 2011 02:54 AM jessamine wrote:
Thanks Kate. Sorry Barbe. Borderline diabetic....I feel like we're all borderline everything-- I mean, once you have one of these things, it really just seems like we're more prone to everything else too. So unfair! If what doesn't kill us makes us stronger we are, at least, very very tough. I feel like it sometimes, when I don't feel like it's all too much and I can't take another thing.
Emma, what a horror story! I hope you can find someone who respects your condition to treat you! Maybe a pain management specialist?
Sep 12, 2011 03:30 PM 3jaysmom wrote:
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
Sep 17, 2011 01:17 PM soulswithin wrote:
Hello to everyone. I came back to bc.org because i wondered if there were others who are experiencing more extreme pain than before. I had fms, and even did research and a website for fm. I managed to get through the bed rest stage after years of pain and fatigue and have had ten great years learning ways to distract from pain, etc, walking.
That was about ten years ago. I then became very active and found physical strength to become a photographer and walk 3 miles a day with heavy equipment. Fast forward to now, after three bc surgeries, chemo, radiation and 4 months tamoxifen. I managed to be fairly active. But i had ovary pain, and joint pain plus a frozen shoulder, finally quitti g the tamoxifen, my biggest fear was being so disabled that i couldnt even walk, not alone lift my cameras anymore. It is happening unfortunately.
3weeks after quitting tamox, i felt so much better, even the ovary swelling and pain went away. My doctor is pushing me to get on one of the other drugs like femara. For five weeks now the pain has returned all over. Fms all over again. I am wondering if the hormonal changes fron stopping tamoxifen is causing a major flare up, along with the shoulder mess i am really discouraged.
Its like we have lost our tools to manage a normal life no matter what road we take! My doctors answer to everthing is "well i have never heard of that!" a rather uninterested attitude implying im a wimp or something. But i cant imagine Femara making me get through this! Any suggestions? Thnx
Sep 17, 2011 03:15 PM Kate33 wrote:
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.
Sep 17, 2011 07:32 PM, edited Sep 17, 2011 07:33 PM by 3jaysmom
i'm listing gals, and whole heartedly agree!... after getting so physically sick from all the als' i quit. i took grapeseed extract, and all on European protocol. of coourse, thre drs pushed tamoxifen.. i declined, i've had 4 strokes.. not taking that one, whos; se's are heart related.. now with the hypothyroid, they told me stop the protocol; so im going "naked" ... lol. have been ned for over 2 yrs.;so just hoping to stay in a "holding" pattern. the FM/MS pain is def. related to hormones.. even the thyroid hormone is now acting up.. hoping to change that soon, trying yet ANOTHER t4 drug.. what a pain!!!"normal is a setting in a dishwasher, as far as I'm concerned.. yes,souls within; if you can afford it at a "reduced" rate, GO for it!!i'll be watching and reading.. very tired these days, and have visitors./ 3jays
Sep 18, 2011 08:29 PM soulswithin wrote:
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!
Oct 28, 2011 11:49 AM Kate33 wrote:
Hey everyone! Hope you're all doing well. I'm still having ongoing pain and not sure what if anything can be done. I have 2 consults scheduled with 2 new PS's regarding my recon. Not sure if it's the pecs causing the pain, CC or my fibro just not liking those foreign objects i.e. implants. Anyone have any theories or experience like having your implants removed and having your auto-immune issues improve? Just not sure how to proceed. I find I've grown accustomed to a certain level of pain but, when new pain is introduced, it just about puts me over the edge.
Nov 6, 2011 11:12 PM jessamine wrote:
I have definitely read accounts of people having pain that went away when their implants were removed-- but it's not clear to me if those people had a simple reaction to the silicone that might differ from a pre existing condition... How awful! Do you mind if I ask what kind of pain it is? I don't know anything helpful but I'm curious about it-- I mean is it a localized thing, and that's why you think it's the implants, or more widespread (and if so how can you tell the difference from regular fibro pain?!). Is it maybe post mastectomy pain syndrome? I don't really know what that is (beyond the obvious), but I've heard the term tossed around some....
So so sorry. It must be really hard to have to think about losing the implants, not to mention more surgery.