anyone out there with auto-immune/chronic pain issues before dx?
Comments
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My fibromyalgia has gotten so flared up today - I think it's from stress. I guess the chemo makes it worse than usual.
listmaker - glad to hear you had no problems with radiation. That is next on my list - ha, like your name! I was so worried I would end up with a shrunken, deformed, tight-skinned breast. Boy, my imagination can take me anywhere! I wish it would take me to Hawaii!
Also, my father had a rare autoimmune disease, called relapsing polychondritis. He also had prostate cancer and a melanoma. The three sure do seem to go together. I happened to go to my dermatologist's office just before I started chemo to have them remove an annoying skin tag, and they were adamant about me having a body check as soon as I'm through with chemo. I've only had one in my life before - ugh!
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heartnsoul7- as my name says I make lots of lists, I started reading these boards as soon as I was diagnosed and began my lists. For radiation I learned about 100% Aloe Vera Gel from Fruit of the Earth, got it at Wal-mart. It's clear and says no alcohol. Took that with me to every treatment and put it on in the changing room after. Also used it at night after my shower. It was very cooling and as I said I didn't burn at all. You will stick to your bra though if you don't let it dry before dressing - ha. The yearly body check is a piece of cake, sign in-donate your co-pay and you're out in 15 min. Stress is definitely our enemy but staying calm is so hard to do. Aloha!
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Listmaker,
I love your name..I bet you are fabulous at deriving commonalities and trends. I would greatly appreciate any info you get...and so glad you have an MD that cares so much!
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heartnsoul- I'm sorry you're flared up.
Chemo makes everything worse. Chemo is the worst. The only good thing about chemo is that it ends, and I, at least, can barely remember it already, I was so out of it the whole time. It seems like a fuzzy dream. You'll get there. Get some walking in even if it's just in your house, back and forth- it helps SOOO MUCH. And drink that water! -
Radiation was a piece of cake for me, too. Not even a trace of pink. I wonder if this is common with autoimmune/connective tissue disease? Also - No shrinking tissue or anything like that. Just the opposite happened. I had swelling on the radiation side, and it's still there after six months. My onc said it was "classic connective tissue disease reaction." It would be interesting to hear how you all did with rads.
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MAGOB,
I did really well too...on the outside. I am very fair skinned, red hair/freckles. We were all surprised. Some redness and pain, but no blistering, and only a faint shadow underneath the breast. My lung however is bothering me (I think..hard to localize) I had pleural thickening all throughout, and am going to talk to my rad onc on Tuesday. This was seen on PET scan.
heartnsoul...sorry about the flair, I know, but it just seems to come with the chemo. I had to take much pain meds than before the chemo. Are you on neurontin or taking L glutamine? I am also curious if you have had your Vitamin D levels taken? I think it's imperative to get those levels way up for immune system function and muscle aches/pains. Hang in there and let us know, K?
traci
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bumping for Nancy
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DX 1996 CFS w Fibro...
post chemo 3 years, and off arimidex 6 mo. ...and I still hurt~
elevated ANA no Lyme,no MS,no Lupus etc
"polyarticular arthritis" DX (rather vague)
sigh...
Marcia
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Hi Marcia. Sorry to hear you are still hurting after being off arimidex for 6 months. My onc swears that none of the side efects from Tamoxifen will be permanent. When I quit taking it, she says it will get better. It's a little hard to trust that after everything I've been through.
Are you taking anything to help with your symptoms? And could you help me out a little - what is CFS?
Mary
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I'm trying to play catch up on all my threads! Jessamine you had mentioned that they keep testing your thyroid. Me, too! I have all the symptoms of hypothyroidism but my levels read as normal. Then I read that the parameters of normal were determined by a very small test group about 50 years ago. Some doctors are recommending a baseline test early in life because what is normal or abnormal for you may be different for someone else. Some doctors are even prescribing thyroid meds, even with patients who are within the so called normal range, to see if their symptoms improve. Unfortunately, my doctor is not one of them. I wish she would try it. You have to wonder- if it walks like a duck, and quacks like a duck.....
One thing my doctor did say, for those fibro sufferers, is that she feels it is wrong that we are being treated by rheumatologists as it is not a disease of the joints. She believes it is a neurological disorder and should be treated as such. The Mayo Clinic agrees-
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
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I've had pain in hands and feet (some other joints now and then, too) for over five years. I'm calling it Fibromyalgia, but my PCP was reluctant to put that label on it because there is no actual Dx lab. test for that. Let's just say I do not have RA, Lupus or Sjogren's. I have stumped half a dozen doctors as I always come up "healthy on paper."
If I could identify something in my life that triggered the pain, I'd cut that out immediately, but I don't have a clue what has brought it on. I thought it might be hormonal. I have been on Tamox. for a year. I also am supplementing with Vit. D now. I would say that the pain might be slightly less, but it is never gone.
Another thing that did block the pain response of the nerves was when I took Cymbalta for four months, but again it did not take away the pain away 100%...more like 85% Cymbalta gave me a few headaches too, then I found out that it reduces the effectiveness of Tamoxifen, so that was the end of that.
NSAID's don't make a bit of difference to the pain I feel. I can't help thinking if Fibromyalgia was more prevalent among men, there would be a lot more answers on it by now. I don't know if there is any connection between chronic pain issues and B/C, but it sure does feel like the double whammy to have both things going on.
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kate- I totally believe that fibro is neurological (are we going in circles? did i say this before? if so, sorry...). I believe that I experience, basically, phantom pain in the nerves in my muscles (among other things). My fibro pain tends to be unrelated to actual muscle or joint stress, and be triggered by less obvious things, of which I can't think of a good example right now for some reason, but I'm sure you all can relate to the pain for no apparent reason experience. My thyroid was tested extensively, and I too questioned the tests when they came back neg b/c it seemed so clear- my PCP finally said (and she had been pretty convinced it was hypo-thyroidism too) that I was actually testing HYPER thyroid (not enough to matter, but enough to convince her that that was not what was going on). And the fibro dx makes more sense anyway- I have so many symptoms that are more CFS than anything, and I have the chemical sensitivities (common w/ the fibro and CFS). I think a common thread between the two, though is ADRENAL FATIGUE which is also such a huge problem for us BC patients (causing long time post chemo fatigue, for example).
MAGOB- CFS= chronic fatigue syndrome- sort of a sister complex, in my opinion,(as someone who suffers from what seems to be a hybrid of the 2) to fibromyalgia. They share a lot of common ground, but manifest differently.
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One thing that really made a difference for me was a magnesium test. I was way low, and something as easy as magnesium pills really helped with the muscle weakness and poor coordination. It was a miracle. You might consider asking your doc about this.
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Totally! Well not the test, I never got one, but I do take lots of magnesium and I believe it's one of the things that has helped me a lot. I take a lot of supplements and herbs, so it's hard to separate, but it has helped me SO MUCH!
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jessamine - You mention you have suffered from chemial sensitivities for 5 years. I posted a thread called "Itching and Cancer" awhile back. I was itching from head to toe and could tell something was wrong. It started about 8 months before my cancer diagnosis. After 2 years of this I was diagnosed with an allergy to 5 different chemicals found in everyday products and 2 rubber accelerators found in latex. I think to some degree I always had the latex allergy, but the chemical allergies were new. I definitely believe the itching was related to the cancer and in fact 1 of the dermatologists I saw was in agreement and said that cancer can throw your whole immune system off.
Sue
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While it's tempting to blame a lot of the stuff I've been struggling with for years on the cancer, my BS says she feels I had the cancer for a pretty short time before dx. In fact, she thinks (and is doing research around the idea) that this whole concept of "by the time you find it it's been there for 6, 8, whatever #, years already" is wrong, especially with the faster growing cancers such as mine. Is she right? I don't know. I definitely spent some time hoping I could "cure" the cancer and see everything else go away too...but I don't know. I'm only a couple months out of main treatment, true, but of everything the chemical sensitivies are the least improved. I'd be interested in other peoples' experiences though....Have you found you are less allergic now?
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jessamine - After seeing several doctors about the itch I finally was referred to a contact dermatitis specialist in NYC. He patch tested me for 100 different things. He pinpointed which chemicals I had developed allergies to (there were 7 of them!) and was able to give me a list of products I could use. I am about 90% better; however; it is a constant battle because people around me use products I am allergic to. With regards to thinking once the cancer was cured everything else would clear up, I hoped the same thing, but I think once your immune system has a reaction to something it remembers and you continue to react.
Sue
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Sadly, yes. Oh, can I ever relate to the "people around me problem"- as a person with severe allergies to fragrance it's...well, limiting. Maybe someday they'll come up with something- but given that these are toxic products, I wonder if they really will or if our bodies are the rational ones here in rejecting all that.
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jessamine - well, now I'm not so sure it was my fibro flaring up! About 2 days later, I went to see my doctor because of an itchy rash on my back - shingles! Bad shingles! For the first time in my life! They started on my back, went around under my arm and onto my chest. I know it's the old revived chicken pox that reappears as shingles when you're immune system is compromised - I'm just leary of all these connections. I have also been diagnosed with adrenal fatigue a few years ago, just before chemo my onco found an adenoma on my left adrenal gland, and I do have fibro and CFS. What else? Oh right, 5 cysts were diagnosed on my thyroid gland about 5 years ago - went to endocrinologist, of course "nothing to see here, folks". They just can't get their noggins together and make a CONNECTION! Drives me nuts! I'm hoping my excellent onco can put the pieces together.
Squidwitch - I've only recently upped my intake of Vitamin D on my own, because nobody has ever tested it. That's one thing I'm going to take care of when my chemo starts winding down in the next 2 weeks. I just want one person - nurse practitioner or whatever - to monitor all those things including estradiol, progesterone, testosterone, thyroid, vitamin levels, all of it in one place - then send it to my onco for review and recommendation. I can't run all over town any more and expect these guys to coordinate anything!
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heartnsoul,
I was going to write bless you heart before I saw your name....so let's bless it twice. Shingles are very painful, so I hope they are taking care of the pain for you. So sorry to you have them added on top of everything else. How are you holding up?
Traci
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Jessamine,
Very interesting thread!!! I was suffering from Interstitial Cystitis (IC) and was diagnosed just 3 months before my bc was discovered. IC is thought to be an autoimmune disease. It took 2+ years after my initial flare (bladder) to settle down. In many respects, the IC was worse than BC.
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squidwitch - thanks for asking! It's so nice to vent sometimes when you're miserable...
Oooh...they are kind of flaring up again. My onco was hesitant to give me my 3rd TC the other day because she was afraid it might kick them into high gear again - she refilled my antivirals and prednisone-like pills to keep them at bay. I'm just praying it works! Right now they are itching a little bit which worries me a tad - hope they're not sprouting some new ones! As far as the pain, I'm in so much pain at the moment from my Neulasta shot that I finally had to take something for that, so the pain from the shingles are taking a back seat. It's hard to imagine that there will actually be a day when the chemo is over and I don't spend my days managing side effects!
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heartnsoul,
when is it ever over? sometimes I'm like, REALLY? REALLY? but very glad you have something to address the pain of shingles...and neulasta. the first time the Neulasta hit me, I felt like I was on a rack and someone was cranking it. Get lots of rest and keep those fluids going, K?
traci
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Chron's Dz / Inflammatory Bowel Disease, diagnosed in 1988, then 1998 with stage 2 BC.
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An interesting new study about the possible retrovirus link to CFS/Fibro...(the fibro link is mentioned in other articles)
http://www.prohealth.com/library/showarticle.cfm?libid=15576
edited repeatedly because I can't get the link to work. huh. here's the text, then. Sorry it's so long!
Anti-HIV Drugs Inhibit Emerging Virus Linked to
Prostate Cancer, Chronic Fatigue SyndromeFour drugs used to treat HIV infection can inhibit a retrovirus recently linked to prostate cancer and chronic fatigue syndrome, researchers at Emory University/Atlanta Veterans Affairs Medical Center and the University of Utah have shown.
The results were published on April 1, 2010 by the journal PLoS One.
The findings suggest that if XMRV (xenotropic murine leukemia virus-related virus) is proven to be a cause for prostate cancer or chronic fatigue syndrome, those illnesses may be treatable with drugs already approved for treating HIV.
Discovered in 2006, XMRV has been detected in some prostate cancer patients' tumor biopsies by several investigators. However, its precise role in driving prostate cancer is unclear. A recent report (from the Whittemore Peterson Institute in Nevada) detected XMRV in a majority of chronic fatigue syndrome patients, but these results have not been confirmed by other laboratories.
"Not all studies that have looked for XMRV have been able to detect it in prostate cancers or in samples from chronic fatigue syndrome," says Ila Singh, MD, PhD, associate professor of pathology at the University of Utah School of Medicine. "We will need to see the results of clinical trials before these drugs can be used in a clinical setting."
Singh and Raymond Schinazi, PhD, DSc, professor of pediatrics and chemistry at Emory's Center for AIDS Research and the Atlanta VAMC, and colleagues teamed up to test 45 anti-HIV compounds, some of these discovered by Emory researchers, and other antiviral compounds against XMRV in cell culture.
The most potent drug against XMRV was raltegravir, produced by Merck and sold under the commercial name Isentress. The FDA initially approved raltegravir in 2007 only for persons whose HIV infection was resistant to other drugs, but in 2009 its approval was expanded to all HIV infected persons.
Raltegravir represents a new class of antiretroviral drugs because it inhibits the integrase enzyme, preventing the virus from invading a cell's DNA. Other drugs against HIV inhibit either the reverse transcriptase enzyme, which copies the virus' genetic information, or the protease enzyme, which carves up newly produced viral proteins so that viruses can be assembled. However, none of the protease inhibitors inhibited XMRV in culture.
Besides raltegravir, three other compounds -- another integrase inhibitor and AZT and tenofovir DF, two reverse transcriptase inhibitors -- also inhibit XMRV replication. This suggests that these drugs could be used together in combination therapy, a particularly effective tactic against HIV that helps prevent the emergence of drug-resistant forms of the virus.
"Our study showed that these drugs inhibited XMRV at lower concentrations when two of them were used together, suggesting that highly potent 'cocktail' therapies might inhibit the virus from replicating and spreading," Schinazi says. "This combination of therapies might also have the added benefit of delaying or even preventing the virus from mutating into forms that are drug-resistant."
Although both XMRV and HIV are retroviruses, there is little similarity between HIV and XMRV at the protein level. Scientists have been able to show that several retroviruses cause cancer in animals, but only a few retroviruses are known to infect humans: human T-lymphotropic viruses 1 and 2, HIV, and now XMRV. Singh and Schinazi are now investigating the development of resistance in XMRV to raltegravir and other drugs.
Singh led a recently published study that demonstrated the presence of XMRV in 27 percent of prostate cancers examined, with the virus more likely to be found in the most-aggressive tumors. XMRV may promote cancer by integrating into the host cell DNA and warping the cell's regulation of its own genes.
Anti-HIV Drugs Show Activity against XMRV Retrovirus Linked to Prostate Cancer and Chronic Fatigue Syndrome
SUMMARY: The integrase inhibitor raltegravir (Isentress) and certain other antiretroviral drugs used to treat HIV are also active against xenotropic murine leukemia virus-related virus (XMRV), a distantly related retrovirus thought to play a role in prostate cancer and chronic fatigue syndrome, according to a study described in the April 1 2010? issue of the open-access journal PLoS One.By Liz Highleyman
XMRV is is classified as a gammaretrovirus, belonging to the same broad family as HIV, but more closely related to a group of viruses that cause cancers such as leukemia. Identified in 2006, XMRV has been linked to prostate cancer, and last fall researchers reported in Science magazine that more than 60% of individuals with chronic fatigue syndrome carried XMRV in peripheral blood cells. XMRV was the subject of a plenary presentation and an oral abstract session at the recent 17th Conference on Retroviruses and Opportunistic Infections (CROI 2010).
Researchers from the University of Utah and Emory University tested 45 compounds, including 28 drugs approved for human use, for activity against XMRV in a laboratory study. They found that 4 anti-HIV drugs -- raltegravir, tenofovir (Viread, also in the Truvada and Atripla coformulations), zidovudine (AZT; Retrovir), and the experimental integrase inhibitor L-000870812 -- also inhibited XMRV replication.
When used together, these agents exhibited synergistic effects, offering the potential for combination therapy to delay the emergence of drug resistance. However, the study authors noted, XMRV has limited genetic diversity compared with HIV, indicating less capacity to develop drug resistance mutations, and suggested that 2 drugs may be adequate; notably, they were unable to select for raltegravir-resistant XMRV after trying for several months.
"While it is not yet clear if any illnesses are directly caused by XMRV, our data indicates that XMRV infections might be prevented or treated with specific antiviral agents," they concluded. "In the presence of any evidence of causality of human disease, our findings should provide the basis for designing clinical trials to treat them."
Below is the text of a press release from Emory University that provides more details about the study and its findings.
RA Weiss. The discovery of endogenous retroviruses. Retrovirology. 3:67. October 3, 2006Research supported by: Emory Center for AIDS Research and the Department of Veterans Affairs.
Department of Pathology, University of Utah, Salt Lake City, UT; Center for AIDS Research, Laboratory of Biochemical Pharmacology, Department of Pediatrics, Emory University School of Medicine and Veterans Affairs Medical Center, Decatur, GA.
4/13/10
Reference
IR Singh, JW Gorzynski, D Drobysheva, and others. Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome. PLoS One 5(4):e9948 (Free full text). April 1, 2010.
Other Source
Q Eastman. HIV Drugs Inhibit Virus Linked To Prostate Cancer, Chronic Fatigue Syndrome. Emory University. Press release. April 7, 2010.
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I thought I posted....
anyhoo, wanted to say this is a fabulous article!
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it looks like a connection to me....i dont know too much about this but ...hey i too had shingles...bad..and raynauds disease.everyone in my family has some kind of auto immune disease.i am starting to worry about my grand children who also have asthma,epstein barr.im the only one with bs.although my mom died of ovarian...this crap is getting scary...day by day.thread by thread.and every day is a crude awakener.id like to go back to bed and put the covers over my head....
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I had my annual appointment yesterday with my rheumatologist. This was the first time I had seen him since my BC diagnosis. He is so great and talked to me for a half an hour. We are staying with my current medication, Plaquenil, which he feels strongly is helping me keep some of the SE's of A at bay rignt now. We also discussed the people of this forum who seem to have both and he was honestly surprised and said he is going to do some informal research and get back to me.
heartnsoul7: so sorry about your shingles but for the rest of us there is a vaccine that we need to take and it has to be taken before your first outbreak of shingles. It is a live virus which means that you will have to be off your auto-immune medication for enough time for it to get out of your system before taking the vaccination. For me with Plaquenil this would be around 3 months. I think I can do that so I'm planning now for when. Again heartnsoul7, so so sorry for your pain with this, my mother-in-law has had it many times over the last 30 years and it is awful pain for her.
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Listmaker - I'm concerned that you may not have the most up to date information on the shingles vaccine.
This is from the Centers for Disease Control web site:
Can the shingles vaccine be given to people who have already had shingles?
Yes. People who have had shingles can receive the shingles vaccine to help prevent future occurrences of the disease. This is true no matter when they first got shingles. Updated Oct 2008
This was very comforting information to me, because I got shingles right after treatment, and like, oh, my god, I never want to do this again.
The shots are expensive to those of us not yet on Medicare ($200), but I was willing to pay it to avoid that misery again! I wouldn't be surprised if your mother-in-law couldn't get it completely covered.
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heartnsoul- My Mom just had her first serious shingles outbreak. I can definitely empathize with your pain. Her doctor recommended she get the vaccine but has to wait until all the blisters have healed. She said she wasn't sure if Medicaid would pay for it but my Mom said she would pay anything. Just wondering why they don't give the vaccine sooner than age 60? Do most people not get shingles until after then?
jessamine- Interesting article! Thanks for sharing.
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