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

I know of at least one other person who also has fibromyalgia on these boards. Personally, I've had issues with chronic inflammation - infections and rashes. When I finished chemo I had huge issues with joint and muscle pain. The only time it eased up was when I was put back on steroids for an issue that came up with my heart. They ran extensive tests and came up with some things that pointed towards lupus -but then somethings that didn't confirm it. I saw 5 doctors and the best they could come up with was "it's something auto-immune but we can't put a name to it". I'd like an answer, but since it doesn't look like I'm going to get one I'm just working around it as best as I can. 

many people who think they may have had fibromyalsia, could actually have this

From NIH.gov

hat are Paraneoplastic Syndromes?

Paraneoplastic syndromes are a group of rare disorders that are triggered by an abnormal immune system response to a cancerous tumor known as a "neoplasm." Paraneoplastic syndromes are thought to happen when cancer-fighting antibodies or white blood cells (known as T cells) mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older people and are most common in individuals with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to the tumor being discovered. These symptoms may include difficulty in walking or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo or dizziness. Paraneoplastic syndromes include Lambert-Eaton myasthenic syndrome, stiff-person syndrome, encephalomyelitis, myasthenia gravis, cerebellar degeneration, limbic or brainstem encephalitis, neuromyotonia, opsoclonus, and sensory neuropathy.
Is there any treatment?

When present, the tumor and cancer are treated first, followed by efforts to decrease the autoimmune response -- either through steroids such as cortisone or prednisone, high-dose intravenous immunoglobulin, or irradiation. Plasmapheresis, a process that cleanses antibodies from the blood, may ease symptoms in people with paraneoplastic disorders that affect the peripheral nervous system. Speech and physical therapy may help individuals regain some functions.
What is the prognosis?

There are no cures for paraneoplastic syndromes. There are no available treatments to stop progressive neurological damage. Generally, the stage of cancer at diagnosis determines the outcome.

Hi. I have Fibromyalgia.

Was about 4 or 5 years complaining about pain before I was referred to specialist, he said quite quickly it was Fibro, then said there's nothing much we can do for it !! I took some muscle relaxing drug, but it didn't even register, so after a few months I gave it up.

I have tried various group, and one to one activities, but all were a waste of time, and had just nicely gotten used to living with it when bc hit ! My Fibro specialist was leaning towards Fibro being caused by chemicals I used to handle, well before we were told to wear protective clothing, and we were just getting into doing some investigations when I started bc treatment, and all these investigations went out of the window ! I have never really bothered going back and starting up investigations, have had a belly full of hospitals, and now try and avoid them if I can.

There are a handful of other girls who have Fibro on these boards.

Isabella.

I have Type 1 Diabetes, which is auto-immune.  Also Hashimoto's.

I have been looking all over bc sites and Diabetes sites to try to find someone else with both Type 1 Diabetes and bc.  No luck yet, though.

It's not for me to know if they are related, but my experience with studying FMS, CFS, Chronic Pain info for about 7 years, brought me to alot of cell changing studies that included cancer in some research. [due to my chronic Epstein Barr/mono problems which is viral related, and reoccurs during constant fatigue and stress. The whole organ dysfunction thing, that so many with FMS understand.]

Not only does constant duress trigger some of these illnesses, but the malfunction of all the organs can make you totally ill, and organs incuding the brain will malfunction, causing widespread health problems including alot of pain and fatigue, loss of memory. When I had my worse case of FMS/CFS I had bladder, bowel, brain, IBS, and disturbing pain and fatigue. I worry about this too, while I'm smack in the middle of my 3rd breast Margin surgery soon.

 So it may be understandible that the unending stress of breast cancer and it's treatments throws us back into the syndrome of pain + stress= fatigue and inflamed nervous system, exaggerating the pain, which contributes to the extreme fatigue and body dysfunctions, including the immune system. I also get flare ups of Mono [EBV] during these times, which BTW research has shown linked to numerous cancers.

At one point, I felt I knew too much, and the stress of that made me worse. I had a forum filled with CFS/FMS/LYME Disease/Spione problems, where I helped people through numerous pain syndromes including spine surgeries, FMS and CFS, and finally I had to leave it all. I discovered my personality wore everyone elses stress too, which I had to get away from. I needed to devote more time to my own health recovery. Considering I also had Melanoma twice 10 years ago, I have had 10 good years until now, the new battle. 10 good years. Hoping to get another decade in.

 But I have learned to pace myself, take each day and replace the worries with positive things to distract me, and just get through that day. I worry about medications and treatments, and how the heck to get back on track to healthy fun living. The more stress I can pass away, the better I feel, although it's not always gone, but I try to meditate most of it away, let me enjoy my depressing moments, let go of things I can't change and that has helped me cope. [along with this great website, thanks to all of you]. Forcing myslef to move and walk helps also, alot, or I stiffen up like I'm 90, which makes all my ailments worse! I've had that 'iron bra' syndrome for years due to spine spasms.

Unfortunately coping skills don't always come through for me, as I tend to block out too much when I should be taking more action to insure I have enough knowledge to make good decisions. I'm not as actively involved as I used to be with my recovery. Which can be a negative sometimes. I also have 4 herniated disks, and a failed fusion, but have managed a great life these past 10 years.Maybe I am too overconfident, that this, too, shall pass. I don't know.

 Yes, my back and neck are worse, I am stiff and old feeling and constant fatigue, from the surgeries, and thats not with any chemo! But I think because I managed in the past, and recovered, I am not as worried. I mostly worry about the cancer returning, and feel I have aged 10 years, but I think if I just let go and let this all take place, I will find my life again. I won't waste effort fighting what I can't change, but I do know it will be alot of work to get my life back, and hoping to gather strength through all this. I feel for all of you who have multiple pain challenges.

Take care everyone. Hope to get walking soon, which was like pulling teeth in the past with all my health problems, but I did so much better. I figure it's hot outside, by the cool Fall weather I should be ready to resume my life, which included alot of hiking and photography, my inspiration.

Glad for this thread...also feeling we need to dig deeper for common health issues beyond the BC.

I have Thyroid disease, had severe endometriosis (hysterectomy and ongoing chronic pelvic pain secondary to pudendal nerve injury)

I hurt a lot, and this has been on  a constant basis for 6 years, intermittant before that. 

I do have some ongoing breast pain as well....post matectomy. 

But, I can still swim, and there lies my blessing  

(I need to look up this stiff man syndrome peri-neoplastic, my Neurosurgeon noted a hypersenstivity in all of my muscles and I have a stiff gait without meds.)

Thanks,

traci

I can definitely relate to those with chronic pain.  I began having symptoms over 12 years ago.  I was eventually diagnosed with fibromyalgia but back then most doctors didn't even believe such a thing existed.  I went from doctor to doctor trying to get some relief from the pain and fatigue.  I have been reading about some interesting research looking at the link between Vitamin D deficiency and breast cancer, chronic fatigue, fibromyalgia and other auto-immune diseases.  It is estimated that at least 25% of the population is lacking in D from poor diet, too many indoor activities and overuse of sunscreen.  D deficiencies symptoms are strangely similar to fibro and CF.  My GP ordered a blood test and my level was 12.  (It's supposed to be around 50.)  Since taking high doses of D3 I have seem a marked improvement in my fibro symptoms.  It may not work for everyone but may be worth having your levels checked.  (Don't start supplementing large amounts without having your levels checked, though, because having too much D can be harmful.)  It's also recommended that everyone get at least 30 minutes of sunshine a day if possible.  It's extremely difficult for your body to get all the D it needs through diet alone.

So glad this thread has been started.  I recognize some of you ladies from other threads.  I have fibromyalgia, possibly sjogren's syndrome.  I was JUST AT the rheumatologist this morning talking about vitamin D!  

It seems like we might have some synergy here - a good place to compare notes and share tips for a little relief.  

So - yep.  The vitamin D level was low, I started supplements, it got a little higher, and now we're increasing it again.  I also had very low magnesium levels.  I felt a noticeable change when I started taking supplements.  I take a lot, but it has made a big difference.  

Tamoxifen and Fossamax are making my symptoms flare up.  I can only take half the normal dose of Tamoxifen, but it's going to have to do for now.  There was a small study done in Brazil with women who only took 10mg - or half of what we take here in the US.  Although it was a small group, the findings were pretty good - the lower dose did seem to help quite a bit.   

Chemo was the final blow to the bones - I have osteoperosis now.  Still, with exercise and supplements, life is getting better, even though I've been through cancer tx. 

It's clear that women like us with autoimmune/connective tissue/inflammation/or other underlying issues have some real challenges during cancer tx.  But the good news is that we seem to make it through somehow. The more information we can share on this subject, the better.   

It was very hard to be the only one on the other threads who had a bad reaction to just about everything.  The other ladies seemed to have a few of the icky SEs, and I felt like Charlie Brown on Halloween - I got a bag of rocks every time.  It was hard to share the whole nine yards with everyone else.  It just sounded like excessive whining.  Hopefully, we'll be able to help some other kindred spirits during their tx.   

Thanks for starting this thread, Jessamine.   

Here's to feeling good soon!  XO, Mary 

I am so sick of endocrinologists! They have never accurately diagnosed my thyroid, according to their narrow parameters. I've been to some naturopath MDs who did, but I didn't think the hormone cream they gave me to rub on was helping. Skeptical about taking Synthroid anyway. Plus, I have fibromyalgia and CFS. Just tonight I saw a thread linking breast cancer and the thyroid, of course, but also thyroid and muscle pain and fatigue. Doesn't it figure - I can't get a doctor to help me with my thyroid for the last 20 years, 15 years ago I'm diagnosed with fibro & CFS and now bc. I've paid oodles to outside-the-box doctors and their ineffective treatments - just once I would like a mainstream doctor to connect the dots, and prescribe an accurate regimen of Iodoral and whatever else and monitor me! My onc has referred me to an endocrinologist she likes after I'm through with chemo, but if I get the same run-around, I'm going out of the mainstream again and insist someone coordinate the treatments and monitor them until I feel right again. Sheesh - these problems make you too tired to correct the problems! Expecially when you do it repeatedly and get nowhere.

Hi all, I just found this thread. I too have an auto immune disease, "mixed connective tissue disease", I think it's called that because they aren't really sure what I have but I have a positive ANA with a myriad of joint pain related symptoms. I have been seeing a rheumatologist for 10 years or so and "soulswithin" I had Melanoma in 1996, mole involvement only, no margins, no treatment other than surgery. I've been on Arimidex for 4 months and all the pain I've been treating with Plaquenil (200mg/day) has returned but worse. So I'm with you guys that there is an added concern for us because the medication we take to control the joint troubles and then we add in the BC meds and they have to conflict with the joint meds. I'm not due to see my rheumatologist for another couple of months but I think I'm going to make an appointment to discuss this with him. He's at a teaching hospital and is very open to my suggestions for certain blood tests or my needing to look deeper into something. "jessamine" thanks for starting the post. 

I am glad this thread is here...We can help to bring light to this probable connection.  Listmaker...what a wonderful MD you have...an open mind is crucial for the advancement of medicine! Any chance they are close to DC?