Fibromyalgia worse,elevated BP..anyone else?

GointoCarolina

I had fibro before diagnosis,but it was only bad when I was stressed or during very wet weather.I finished chemo 1/2009 and herceptin 10/2009 and my fibro has gradually worsened.My hands never bothered me before,now they are so stiff during the night and in the morning.As I am up and about,they loosen up. I take melatonin and theanine at night.Fish oil(which is upsetting my stomach so I am going to try the Fisol brand) zinc, magnesium, Vitamin B.I know that being thrown into menopause so abruptly can affect this,plus I have gained weight,but none of my doctors think it is enough to be concerned.I always had normal blood pressure,since treatment it is elevated.Before breast cancer I had not seen a doctor in over 15 years and I have found that natural treatments work best for me.I was taking one aspirin at night,which really helped,but started affecting my stomach which was damaged by chemo,so I still have to be careful.I am going to get a treadmill so I can exercise when the snow gets deep and I plan to do my best to cut way back on sugar.I all ready eat lots of fruit and vegs, whole grains,very little salt.Can you please share with me what you all take and how long it took before you saw relief? Any help will be appreciated.Oh,I am 57.Thanks!!

KansasKay

Hi - I also have Fibromyalgia and it wasn't that bad until I started on Tamoxifen.  I wish I had more encouragement for you but I'm pretty discouraged myself.  I walk at least a mile each day and force myself to do stretching before I even try to get out of bed.  I have joined a Fibro support group and it helps as a place to vent my feelings.  A lot of frustration voiced by other members of the group, especially related to doctors dismissing our symptoms of continuing pain.  As I sat in the most recent meeting and members were talking about searching for a kind, understanding doctor, I thought (but didn't say), "You should meet some of the horrible, paternal oncologists I've had to deal with in the last 2 years!"  People either seem to think you get cancer and get "all better" after treatment or they thoughtlessly say, "you know, they got cancer and then they died."  I also joined a Gilda's Club in my area and that has helped as they have informative programs about a range of things from meditation to journaling.  I too had depended on very few pharmaceuticals until these two illnesses hit me in a one-two punch in 2008.  Now I take Lyrica for Fibromyalgia plus Tramadol (PRN).  I am 56 yrs. so am in your age group.  Take care, Kay

dlb823

panda & Kay ~ I think there's a lot more to the auto-immune & bc connection than currently understood.  I don't have fibromyalgia, but I have dealt with another auto-immune condition in the past, and there have been several threads here talking about potential connections.

I also read a lot of health journals, etc., and am wondering if either of you are familiar with the suggested link between gluten and fibromyalgia?  If you aren't, just Google fibromyalgia + terms like gluten-free or wheat-free, and you'll see what I mean.

Just wanted to pass this along in the hope that it might help you. The joint pain I have now from low estrogen (I'm post menopause & using a natural aromatese inhibitor) is noticeably better when I avoid wheat and other gluten products.     Deanna

KansasKay

To Deanna - thank you for your response.  I had read about that possible connection and went to a Gastroenterologist last year to see if I had Celiac Disease.  I came up negative on all the lab tests.  I did not have the biopsy.  I still wonder about it as I have so many of the symtoms.  Thankfully our local grocery store has added a health food section so it is easier to find the gluten free items, but haven't gone on the complete gluten free diet.  What is the natural aromatase inhibitor?  I could not take Femara or Arimidex.  I feel crappy on Tamoxifen but not as bad.  Some times I get overwhelmed when I think of being on this drug for 3 more years.  - Kay

mollyann

Hey Kay,

This organization is great with state of the art info. http://www.fibromyalgiarecovery.com/

I think they have a slide presenation on the site somewhere.

dlb823

Kay, I'm no expert, but I think there are many people (like me) who are sensitive to gluten and wheat, yet would probably not test postive for celiac disease.  You might still try eliminating gluten products for a month or two, and see if you notice a difference.

The natural aromatese inhibitor I use is Indole-3-Carbinol, or I3C.  It's one of several, including DIM, Myomin and Grape Seed Extract that some women choose over Tamoxifen or an A/I, and usually as part of a much more comprehensive diet & lifestyle plan.  I am post-menopausal though, and I also had a serious problem with the A/I I tried (beyond the usual aches & pains, which I have even with I3C), so my choice is completely individual, and I am not sharing it to recommend it to you.  What to do about estrogen inhibitors or modulators is something those of us who are ER+ each have to decide for ourselves based on our own, personal stats and beliefs.    Deanna

GointoCarolina

Would I have become gluten sensitive from chemo?My fibromyalgia was very bearable before chemo and herceptin.

soulswithin

Pandaz, I have a feeling those with fibromyalgia [including myself], have to deal with the body's 'over-response' to everything including chemo. We have over-responding nerves also which cause the pain to be worse than normal people. So it stands to reason that our auto-immune type response will cause SEs to be worse.

I used to have a website for FMS and CFS, and did reearch for 7 years, until I burned out big time from too much work on the PC which made my spine problems worse also. I did manage to get a handle on the FMS and my spine/nerve mess and have 10 great years. But the chemo and stress has taken it's toll on me and I can say I am dealing with FMS again, along with neuropathy right now. My guess is that Femara will be a problem for me also. I previously thought that because I was used to pain, that I would handle this well. But so far it's been the opposite. Everything is exaggerated.

As far as FMS having a connection to BC. The only true evidence I came across in my studies was more serious than a wheat free diet. It was totally different type of connection about viruses and the cancers they cause, and some of the viruses were linked to Chronic Fatigue Syndrome and some FMS patients. Mainly EBV and CMV viruses, and now more are found to be linked to certain cancers. Of course standard doctors do not study these issues and very few know about this connection. I doubt whether you'd get any answers other than the top 4 research docs in the world.

Stress also plays a role in our cancer and our immune system [as you well know] And having BC is a stressful ongoing event that takes its toll on FMS and CFS people. I try to stay away from things that make me more stressed and fearful. Distraction is helpful too. Anything the body can do to calm the over-responses. Even my spine pain has come back. It's all related to the nervous system and of course the chemo does a number on that.

Best wishes for you! Hang in there.

dreaming

I was healthy till I got B.C. I was diagnosed with Fibro 4 years after, since then I had PMR.

Because I was dizzy and when I stood in line or waking the dog, I felt I was going to fall, I went to a new Neurologist, I also see a Rheumatologist for the PMR and OA, not to mention my onco, and family doctor.

To make it short, my neuro told me that I have neuropathy from the chemo I had ages ago and can not feel where I am standing and my brain gives signals that I am falling, need a cane now.

I like you take only over the counter medicines, I refused to take Cymbalta.

I use meditation and self hypnosis. It is horrible to have chronic pain, but I tell my self"At least it is not cancer again ".