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

CrazyKitties

I have to say that if any of you can stand chlorine for an hour, then swimming really is the best exercise for fibro. I can't wait to get back in the pool, but i am still recovering from surgery. With my chemical sensitivites, an hour is all I can take.

jessamine

I wish I could swim!! There's a saline pool not too far from my house, but until I get my reconstruction fixed up- no swimming. I have trouble with the cold sometimes too, my muscles seize up a bit getting out. It's still the best though, I agree. Although I love riding my bike when I'm able, also, but it's not often. But for now - treadmill. So boring it's hard to make myself do the amount I know I need to, even with books on tape.

Anonymous

barbe- Hope your tests went well!

jessamine- I squeezed my treadmill in the corner of our rec room so I can watch t.v. while I walk.  I TIVO Dr. Oz.  If I fast forward through the commercials I get about a 40 minute walk in and I'm learning things about health.  Prior to that, after about 15 minutes of walking I was so bored I just couldn't take another step!  If you don't have a t.v. nearby how about some good dance music on your MP3 if you have one? 

jessamine

I go to a gym and can't stand the stuff they usually have on the tv, plus don't like squinting at the captions- the book-on-tape on MP3 seems like the best thing yet. But I still get restless after 20 min or so, even with the most thriller-y stuff I can find at the library. I need to find good online stuff to download I think- audio versions of something like dr Oz maybe, or- well I don't know. Everything you can imagine is out there, I just have to figure out what I want!

barbe1958

Thanks Kate. Testing started at 6:30 am with an MRI. Then x-rays and bloodwork (8 vials!!!!) the technician was amazed at how much the doctor was testing.

Then my injection for a bone scan, lunch, a walk to find a new purse (always cheers me up!) and then back for the bone scan. Scanned for 1 hour and 15 minutes!!! When the scan completed my body she said she had to take additional pictures and hang on, she had to go to the waiting room to tell the 2 people waiting that she'd be even longer! I am worried, but am able to put it in a box and shut it away. My husband was right outside the open door of the exam room and heard her telling me she needed the extra shots of my chest and......get this....my FEET!!!!

Now I have to wait until Feb 3rd to get the results if they're normal, or dread the message from the doctor to come in and discuss the results. Don't know what is worse....sigh.

suz3

jessamine, just read through all the post.  I also have chronic joint and muscle pain, the Dr. gave a vague dx of fibro, but said I was too healthy.  Sound familiar.  So I went to a naturalpath (some supplements helped)  and an allergist (allergic to mold and sensitive to chemicals).  In the mean time I am down to just walking and driving myself no more than an hour (use to be a college athlete).  Anyway, I was just dx 3 weeks ago and I am worried about all the chemicals involved in getting better, my allergist said I should also be worried about implants, they may bother me.  I just don't know what treatment options I should pick.  First lumpectomy with rads or mastectomy.   Looks like I'll probably have chemo.  Any ideas.  What did others do when they had a choice.  I could use some input.

P.S.  my family use to call me the "princess and the pea". 

barbe1958

Suz, I didn't do reconstruction at all. I didn't want to put my body through more surgeries and chance something going wrong. So I just stay flat all the time. No one really notices. I wear all the nice business clothes I did before.

You can't be "too healthy" to have fibro. I don't know what your doctor meant by that....hmm.

Let your cancer team know you have FM so they can be aware of any contraindications.  Good luck!

Anonymous

barbe- Wow!  That's a lot of tests!  I think they put astronauts through less testing!  I guess it'll all be worth it if they can come up with some solutions but Feb 3rd is a long time to wait!

Suz- I think when trying to decide what treatment to go with it has to be about the cancer not the chronic pain.  You need to decide which way (lumpectomy or MX) is best for you to get rid of your cancer and give yourself peace of mind.  However, reconstruction is another story.  I do have pain with my implants which my PS said can happen in women with fibro.  (Of course, she didn't tell me until after I got my implants.)  But there are other options if you do want reconstruction or you can choose no reconstruction at all like barbe did.   And, BTW, I think those who don't have chronic pain do think we are "princesses" and are very delicate.  If they only knew how strong we really are to put up with this pain day after day.

jessamine

Suz- there's no question that we are in a tough position. There's no getting around it though- the treatments might be worse for us, but you still have to do them! I will tell you, however, that despite having pretty serious chemical sensitivities, I did not react that way to chemo. I had a hard time, a lot of fatigue, but not abnormally I don't think- just on the hard end of the regualr spectrum. And I haven't had any pain/reaction to my silicone implants. But how to know? If you feel okay, treatment-wise, about the lumpectomy option, it seems like a good way to bypass that worry. And you can always change your mind later and have the bigger surgery- many women do it that way. I think it's fabulous that you have an allergenist that acknowledges that you might react to the implants- it's so common to just have those (legitimate) fears brushed off and discredited!

During chemo I took A LOT of supplements and herbs and I think it really helped- I'm still on a lot of what I started then and my fibro is actually less bad now than it has been in years. I went to a place called the Pine Street Clinic-   http://pinestreetclinic.com/?page_id=17 - it is in my area but they did everything by fax anyway, so maybe anyone can go through them. They specialize in complementary care for people going through conventional cancer treatment and have really researched this stuff, ie what you can and can't do during chemo for best results. I would recommend it to anyone trying to figure this stuff out. It is sort of expensive, but they have a sliding scale.

And I agree with Barbe- let your onc and whoever else know about your fibro/any symptoms- who knows- they might be really sensitive and helpful! I know my onc is good about that stuff- because he sees so many of us . And as for being "too healthy"- perhaps you should let your dr know that FM appears to be caused be a virus and can hapen to anyone!!

suz3

Thank you ladies for the information.  It is just nice to have others that understand where I been and where I am going.  I have to say my allergist has been great.  He helped me a few years ago when I was beening exposed to mold at work, because of his diagnosis the school I was working had to close the door to my classroom.  It was tested and found not to habitable by man nor beast (many schools are moldy and putting our children at risk, anyway that is a whole differnt important topic).  Kate33, barbe1958 and jessamine, thanks for the input on reconstruction and chemo, it gives me some peace of mine.  Has anyone with fibro or chemical sensitivity had radiation. I think I read a couple of post who said that went okay.  Please keep the advice coming, can use all the information I can get.

Loves and hugs to all.

suz3 

jessamine

I didn't do rads, but someone must have... I can't really think why it would be different with the FM though... Good for you getting the school tested!

MAGOB

Hi Friends!  Hope you are doing well today.  I'm keeping up with each of you, and it's good to read about your experiences.  Please keep it up - it really helps to know what may be worth a try.

I can chime in on rads - did 33 rounds.  It was a really tough decision between rads and BMX.  However, I feared a reaction to implants more than rads, so that's what I went with.  My reaction to the radiation was THE EXACT OPPOSITE of "normal" women.  (They burn and then as the months go by, the breast tissue shrinks and can draw up.)  I have swelling, which seems permanent.  Connective tissue disease, it seems, will cause this.  My onc said it's a classic response.  I also developed a mild case of lymphedema before rads were over.  Not an easy choice, Suz3.  Mull it over and go with your gut.  The heart knows what's best if we can just calm down and listen - not easy to do with a gun pointed at your head!   Also - talk to your rad onc about the position of the field of radiation.  Will your heart be close to the beam?  How much of your lung?  What will the long term effect of this be?  My heart was far enough away from the field that I was able to proceed.  I actually did not commit to rads and would not sign the release until I saw my imaging on the screen with a map of the radiation field over my body.  It helps - maybe you can ask for this, Suz.  

Determined to get my tired carcass into the pool this week.  It really does help - reading your posts provides some motivation, too.  Hope you all get out and move it, too.  

XO, Mary  

I'm really wrestling with Tamoxifen right now.  I have a rash on my arms and legs, fatigue, and swollen glands in my neck and underarm - which is scary.  One of the worst things is a kind of palsy that happens when I try to work out.  Poor muscle control and weakness.  I find I do no exercise like I should because it's just awful.  Truly, I think these drugs can bring on  some tough manifestations that may not go away when we stop taking the stuff.  Just don't know what's worth it.  Will talk to the onc at my next appt.  Any advice you ladies have is most appreciated.   

Anonymous

MAGOB- I had DCIS so my BS thought there wasn't much benefit for Tamox.  I was relieved as it's hard to balance what to take and what not to take knowing it might make some of our symptoms worse.  I'm sorry that's the case for you with all the other ca-ca we have to put up with.  Hope the pool gives you some relief this week!  (((hugs)))

suz3

I just read through all the post again to see what I may of missed.  The funny thing is the Vit D connection.  Both my BS and allergist have me upping my Vit D.  My allergist was impressed that my BS actually tested for it, but said she gave me to low of a dose (2000) to catch up, he said (10,000).  He wanted me to get to at least 70 from 26. Both are going to keep track, I guess.

All the sharing is really helping me figure out things.  Wed. I am actually going to look at prostetic bra, just to keep my options open.  I also meet with an onco, I will relate all your info so he can help give me the right treatment.   

MAGOB, thank you for sharing, I hope you feel better soon.  I don't have any advice yet since I'm a newbee, but I hope next year I'll beable share and help others, like you wonderful ladies.  

Lots of hugs.

suz3 

barbe1958

Well, here's my latest crap! Had to wear my neoprene knee brace on Saturday as my knee felt arthriticky. Was really tight so I didn't bother on Sunday (I worked both days). Got home on Sunday and my knee was swollen! I mean HUGE. Got into bed and crossed my fingers.

In the morning it was just as bad after lying flat all night. In fact, the watery parts felt firmer. Off to the hospital I went....sigh.

The ER doc did not want to aspirate as she said it would hurt so bad. I told her I had to get the fluid out as I couldn't walk, sit on a toilet or certainly drive and I had to get back to work! She said I had to be off for at LEAST a week. I said I'd need a letter for my work if that was the case. She said she didn't like doing the letter for a week as I might need even longer!!! She finally did one though.

Anyway, I broke her down and she finally came back to drain my knee. Holy CRAP!!! The pain as she worked the needle between my knee cap and the other joint bones was excruiating. Good thing she froze me first and I'm already on so many pain meds! You should have seen the crap that came out!!! She had to use a larger bore needle as the fluid was viscous (thicker). She got 55 cc's out and said that was enough to send off to test.

So here I am at home waiting to hear if I have to go on an antibiotic or maybe it's worse...sigh.

It's funny, because after all I got done on Friday with the MRI and other things, I said to my DH that the only pictures they missed were my knees!!! I think I jinxed myself!!!!

KansasKay

Hi - I have FMS and had radiation 2 years ago.  I had read a posting on a Fibro discussion board, saying women with FMS can have more pain during radiation.  The radiation oncologist blew this off.  I did not have any flaries while at the radiation center but I did have a type of reaction that they said is rare.  I broke out in hives  (in the breast where I was receiving treatment) the first few days of radiation.  They hadn't mentioned anything about it and it was kind of alarming when it happened.  I didn't know how I would stand 6 weeks of that feeling.  The rad. oncologist said he didn't tell me about this rare side effect because I had mentioned the thing about Fibro.  So what exactly did that mean?  That people with Fibro are whiners?  I guess he was one of those doctors who views it as a "waste basket" diagnosis.  When he told me that the hives were a histomene reaction, I took some Benydryl and that calmed it down.  I hated being treated as a thing during radiation and the techs drawing on me with Sharpies.  I did not have any severe skin reactions and just looked like I had a sun burn in the radiated area.  I have had continuing pain for 2 years in the surgery/radiation site.  Don't know if that is from anything botched, nerves cut, or FMS but none of the doctors pay any attention to my mention of pain and that is really frustrating.  They always ask if I have any new pain in any area of my body, which I haven't but I doubt I would tell them if I did!  I know what that would start and I'm not up for any more treatment.  You can keep your PET scans, CTs, and needless biopsies as I'm done with being tortured!

MAGOB

Barbe - crappers!  Sorry you had to go to the ER.  Those needles must have been awful.  Hope the knee will be fixed easily with no more owie stuff.  Does your work require you to be on your feet all day?  

barbe1958

Thanks Magob, I can be in my office or on my feet. It's a nice combo and I'm pretty much in control...but I have to drive a half hour to get there. I'm in 100% commission sales. I don't work, I don't get paid...Yikes!!! Not a good feeling being laid up, I'll tell you.

Kay, I'm finding that a lot of doctors are taking FM more seriously. It's only been an acceptable diagnosis since 1992. You have the right to be acknowledged with dignity. I hate hearing that you feel like a whiner, but I must admit, when I went to the ER yesterday I was glad my HUGE knee was the proof of my pain!

Anonymous

jessamine- A week or so ago you posted that you were taking a lot of supplements and they seemed to help with fibro.  Just wondering what you are taking as I'm thinking about upping my supplements.  So far others have recommended taking higher doses of Vit C, Vit E and Iodoral (iodine).  Just wondered what you, and anyone else on here, is taking in regards to supplements.  Thanks!

jessamine

Kate- I take a lot of stuff- some targeted for the fibro, some other things. I think the things that have helped with the pain/fatigue the most have been- fish oil pills, siberian ginseng, vit E (for adrenal function), magnesium cirate,and glutamine powder, which I took for neuropathy during chemo but then when I tried to stop I kept having increased pain, so even though it isn't supposed to help, I kept taking it (1 tbsp/day) and it really seems to help. I also take vit c, and iodoral (under supervision) as well as DIM and some other stuff for the BC. And I think any of us who have had systemic therapy or take prescription drugs can benefit from milk thistle, which has no counter-indications or dangers and isn't expensive, but is fabulous for the liver.

barbe1958

Holy crap! I take 13 pills a day now...all prescription. Where do I add in the supplements? Thank goodness my Vit D is liquid.....

Anonymous

jessamine- Thanks for all the suggestions.  Do you usually order all that mail order or can you buy it in town (like GNC or HiHealth)?

barbe- 13 meds!  Yikes!  Hope you have good insurance!  I'm going to try the supplements and see if I can wean off my Rx.  My body seems to be ultra sensitive to all chemicals.  I'll probably stay on the Wellbutrin, though, and maybe try the Zoloft like you suggested.  Going to have to do some research on that!  

kjbrown92

I think I am even more convinced now that the prophylactic bilateral I got a month ago was the right thing to do with the track record here. I've been to numerous doctors over the last 10 years (I'm 42). Chronic pain. The rheumatologist said I had all the symptoms of fibromyalgia but I didn't have it but she'd put me on the meds for it, but it didn't help at all. Turned out a lot of my muscle spasms were actually from food intolerances. Yet I still had chronic nerve pain. Finally found a good osteopath. I had low Vitamin D and I was just diagnosed 2 months ago with low thyroid, even though I've had symptoms for 4 years, which my regular doctor had poo-poo'd. I've been on a lot of anti-inflammatories (Pure Encapsulations makes a good one), and Magnesium is good for relaxing the muscles. I tried Tamoxifen and I could barely walk because of the hip pain. And with my 70% risk factor, I decided to go prophylactic. And now seeing all these theories tied together" low thyroid, chronic pain, inflammation, and low vitamin D (and after 3 years of supplementation, they still haven't gotten me to the 50 target), I'm glad I didn't wait.

jessamine

Barbe- yeah, I take a little bowlfull of pills each day. I'm pretty used to it, and at least the supplements aren't as fussy as meds with timing and all- I just take a bunch with breakfast and a bunch with dinner mostly. But it's a lot!

Kate- I get all my stuff in town, but I live in san francisco- probably the easiest place on earth for this kind of stuff! They even have natural medicine pharmacies here, where you can get your supplements AND perescriptions! But if you have a whole foods or something, try that maybe?

I had a consultation this week with an exercise specialist at the hospital here- they're piloting a program for cancer patients and survivors. She was fabulous and it was great, but left me pretty down. I just can't do what we're supposed to! But with the potential extra risk, I feel like I need to even more than people who it would be easier for! I just feel overwhelmed. She was kind of stumped by my special problems (too much fatigue and pain to do what she wanted to recommend). I feel better than I have in years these days and I'm so proud of myself for being able to do so much- I can walk fast on the treadmill, almost every day, and even run some, and go on bike rides sometimes!!- it's depressing to be reminded how messed up I really am, still. I'll see her again and she's thinking on it, but I feel discouraged. I thought I was doing so well!

barbe1958

Jessamine, I know what you mean! I took a course at the hospital on arthritis and they were trying to access our boundaries. I was the youngest by 10 years in the class and I was the most handicapped! It looked like I was trying to not do things. Like I was trying to be the worst. Like I didn't want to try! It made me feel very, very bad.....

suz3

 Hi ladies, I was following this thread about supplements, I have been seeing a naturopath for about 3 years and she has put me on some supplements.  I was looking for her to help me with my sleep (which didn't helped) and my chronic inflammation.  She did help me with some of my pain especially (ear ringing/hand tingling).  She put me on green tea, b12, fish oil, taurine, probiotics, multiple, mag and D when the sun goes down starting in the Fall (with cancer probably needed it sooner).  A couple of years ago I was on other things I can't remember.  My allergist gave me a regiment of supplements for pre-operation and post operation.  I got them, took them for 3 days but ended to be to much for me, so I've cut them down to the ones I think might help me the most, but I'll share just in case someone else may want to try this before their operation ( mine is Dec. 9).  Its called Supplements for Surgery:

Routine Supplements

1. one multi,  2. Vit. C 2000,  3. Anti Ox (Nutrieology, one or two daily,  4.  Co-Enzyme Q-10 100mg, one twice daily

Pre- and Post Operative Supplements

1.  Beta-carotene 9a form of Vit. A) 50,000 I.U. daily,  2. Zinc mg. daily,  3.  High potency B-complex, one daily,  4.  VIt E as mixed tocopherols, including the gamma form, 800 I.U (however some drs don't want you to take E before your operation.

Post Operative

1.  Increase dose of Vit. C to 2000mg. 4x daily as soon as tolerated after surgery.n If diarrhea occurs decrease to bowel tolerance.  2.  Bromelain 500mg daiy 

Homeopathic Remedies: Dissolve pellets under the tongue, nothing to eat or drink for at least 15 min. before and after a given dose.  No Coffee

1.  Arnica Montana 30 C, 4 pellets once a day beginning 3 days before surgery and continue 2 weeks after surgery.  2.  Hypericum prefolitatum 30 C, 4 pellets evening before surery, the morning of surgery, immediately post-oper. and then once a day until surgical pains resolves.  3.  Aconitum napellus 30 C 4 pellets the morning of surgery.  4.  Staphysagria 30 c sometimes given instead of Arnica starting the second week after surgery.  5. Other remedies as indicated for specific symptoms after surgery. 

I hope this might help someone.  I'm being staged on Thursday, I'll see where that takes me.  I've been thinking I had Fibro the past couple of years but the oncologist wants to send me to a Rhumi after my treatment to check for RA.  In the mean time I have a neck injury and the neck dr is sending me to have an MRI tomorrow, just one test after another, however if I get answers it will be worth it.  I really find this the most helpful thread, thanks.

Lots of Hugs Suz3 

CrazyKitties

Fibro is really a reaction to trauma, most often involving the spine, or PTSD. It sucks. Oddly enough, my stupid family thinks that I have NOTHING to worry about since my cancer was stage 1; they do not understand the pain I am in recovering with implants and fake nips; they do not understand that Tamoxifen is making me crazy and suicidal, and yes, I am taking an anti-depressant; they would show me more sympathy if were in fibro pain than BC pain.

The mind/body/spirit shit is what I need to tackle next.

jessamine

Suz- wow thanks! This looks pretty similar to what I took around my surgeries. The only thing that jumps out is the Vit A, which I was told to avoid, as some studies show the supplement form being dangerous with the BC.

CrazyKittties-  People don't get it. I'm sorry your family isn't more sympathetic, that has to be hard.

Anonymous

kjbrown- I also exhibit all the symptoms of hypothyroidism but my GP keeps telling me I'm in the "normal" range.  Just want to say- whose normal?  Maybe it's not my normal.  I wish they'd just put me on the meds to see what happens.  

jessamine/barbe- Definitely been there.....where people think you're not really trying, that you're just being a baby, that you're lazy.....makes me so frickin' mad.  When you do what you know your body is capable of it's not enough.  And when you try extra hard you always pay for it the next day.

suz3- What great info!  Thanks for sharing!  That would be great to post on the thread "Exchange City" for women who have their exchanges coming up.  If you don't want to post I could copy and paste- with your permission!

CrazyKitties- Your family may not understand, but we do!!!  ((((((((hugs)))))))) 

suz3

Kate33, wow it would be great to cut and paste the surgery info, however jessamine does mention that Vit. A may not be good for bc, so we should post that, to give everybody knowledge to make sure it is right for them.  Thanks for doing that, I'm terrible at all the computer stuff.  In fact this is my first experience with chatting or anything like this.

jessamine, Thanks for the in put on Vit. A., I see the allergist tomorrow, I'll ask.

CrazyKitties, hang in there we know how tough it is and people just don't understand.  I think that's what so great about this thread, our sisters understand us and we can cry, laugh, support, give information and it can be fun.  Take care of yourself.  

Today my work gave me a basket of goodies for my operation, it was only the second time I cried, a very emotional moment, maybe it is just sinking in and it is reality now.  Anyway it was very thoughtful of the ladies I work with, I'm a early special education teacher.

Lots of hugs bc sisters.

suz3