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I have a friend who has fibromyralgia, her symptoms are very similar to the long term effects of chemo.
Has anyone else noticed this?
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Fibromyralgia
- By PUPPYMOMMY
- Posted October 4, 2009 at 9:39 am · 16 replies
- In Side effects of treatment
- Shared with the public
Explore topics in this discussion:
Exercise Amitriptyline Cancer Chronic pain Ovarian cancer Chemotherapy Lupus Carboplatin Ambien Fibromyalgia Taxol Arthritis Physical therapy Pain Weakness Neurontin Depression Percocet
16 replies
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- By Shamrock2009
- Posted October 4, 2009 at 7:45 pm
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Chemo long term side effects do not meet the criteria of trigger points that are pain related. FIbromyalgia has no neuropathy type symptoms. Fatigue is a common symptom.
I found this on the Mayo site:
Tests and diagnosis
By Mayo Clinic staff
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
* Widespread pain lasting at least three months
* At least 11 positive tender points — out of a total possible of 18
Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
Blood tests
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
* Complete blood count
* Erythrocyte sedimentation rate
* Thyroid function tests
This the full link to Fibromyalgia link:
http://www.mayoclinic.com/health/fibromyalgia/DS00079
- By FavoriteAunt
- Posted October 5, 2009 at 9:37 am
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The one person I know with serious Fibromyalgia is in constant pain and very debilitated.
I really don't know anyone with long-term chemo effects that are as bad as that, but I guess it's possible.
- By traceysister
- Posted October 5, 2009 at 10:59 am
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Fibromyalgia is very often caused by fluoride poisoning.
I had fibro for over 30 years, but am 100% better since I eliminated all fluoride from my diet (including toothpaste and water). Since most chemo drugs have fluoride in them, this could be one reason why the symptoms are similar.
- By Shamrock2009
- Posted October 5, 2009 at 1:13 pm
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traceysister,
What chemotherapy drugs have fluoride in them?
- By traceysister
- Posted October 5, 2009 at 2:55 pm
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There are too many to list. I know Gemzar does. If you go to www.rxlist.com and enter fluorouracil, aprepitant and emend it should pull up the drugs that have fluoride.
- By Shamrock2009
- Posted October 6, 2009 at 10:28 am
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Hi Traceysister,
I was on Taxol, Carboplatin and Avastin/Placebo and found none of them have a fluoride base. Taxol and Carboplatin are the drugs that most women with ovarian cancer receive as first-line treatment. I have muscle weakness and discomfort post chemotherapy. I actually asked if Fibromyalgia could be the culprit at my last doctor visit in September. The PA examined me and per the criteria for fibromyalgia I do not have that diagnosis. Most chemotherapy causes fatigue but does not produce the trigger points of pain required for a Fibromyalgia diagnosis. The fatigue leaves within weeks or months unlike Fibromyalgia.
The side effects of chemotherapy are not the same as as the symptoms caused by Fibromyalgia as listed by the Mayo Clinic site:
"The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
* Widespread pain lasting at least three months
* At least 11 positive tender points — out of a total possible of 18
Tender points
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor's fingernail bed. These 18 tender points are a hallmark for fibromyalgia."
- By traceysister
- Posted October 6, 2009 at 12:19 pm
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Yes, it does not sound like you have fibromyalgia. However, if you do know of anyone who does... my suggestion would be that they stay away from tap water, toothpaste, and anything else that is fluorinated.
- By Shamrock2009
- Posted October 6, 2009 at 12:34 pm
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Not all tap water is fluorinated. We have well water.
- By traceysister
- Posted October 6, 2009 at 1:01 pm
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It can still have (natural) fluoride in it. Did you ever have it tested?
- By Shamrock2009
- Posted October 6, 2009 at 1:23 pm
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It was tested by our state EPA because there was a question of contamination by a nearby farm. Thankfully no contamination was found.
- By verlinda
- Posted October 6, 2009 at 3:17 pm
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I have fibromyalgia, and I had chemo. The main thing they have in common is the fatigue. You might find some of the pressure points coincide. However, most of my chemo pain was directly in a joint; my fibro pain is usually a little outside the joint itself. Example: chemo pain in the knee; fibro pressure point back of knee.
I had had little physical trouble with fibro in the past several years and the fibro fog (like chemo brain fog) came and went. I do remember thinking when I learned about chemo side effects that if a fibro flare-up occurred during my chemo, I'd be in real trouble. Thankfully, that didn't happen.
Ironically, I did have a major flareup this summer, and tried to figure out whether I'd pulled a muscle or torn a tendon. Finally, my PA said, "You know, most of the pain is in several of your pressure points. Do you think you could be having a fibro flare-up?" I sat a few minutes and thought, then felt like an idiot. She'd nailed it.
Actually, having fibromyalgia helped me a little in chemo. I'd already figured out systems to help with brain fog and ways to work around pain, etc., so all I had to do was remember that I knew what to do about forgetting!
The fibro is better again, although I'm still having fairly severe shoulder pain. My new oncologist ordered an MRI and CT-scan of the shoulder and spine since the pain is on the same side where my portacath was. Bottom line, I do have inflamed tendons in my shoulder, but most of the other pain is simply a little arthritis from aging! I do think the chemo may have hastened the process a little.
What does your friend do about pain? In my early fibro days, I learned the most helpful thing to do is keep a diary of all the different meds you try and what effect they have on you. I eventually decided 95% of the time I'd rather put up with some pain than feel so sedated from the drugs. The other 5% of the time I was very, very grateful for the pharmaceutical assistance!
Sorry for the lengthy answer. Hope this helped.
Oh, by the way, it took me over four years to get the fibro diagnosis. At that time (1998), many a doctor told me I was depressed (and hinted or outright said neurotic). Fortunately, I realized I was also going through perimenopause and pushed my doctor (not my wonderful PA, this was years ago in Memphis) to do the hormone blood test. She said in great disgust, "Well, while we're at it, there's an arthritis marker we haven't run. We'll do it, too." It was very high, so she sent me to a rheumatologist who immediately diagnosed the fibromyalgia. She said, "I'm 99% sure now, but let's rule out lupus with another blood test."
I was thinking, "By all means, let's rule out lupus."
She was right. Interestingly, some of my other doctors really, really didn't like that diagnosis. They would much rather I'd had deep depression. Side note: the blood work didn't show perimenopause. It never did until I was totally through with it. My gyn in our new town tested every year for the next two years, and it always came back negative. The third year they said, "Well, you were right; the test came back positive."
"Oh, I'm finally showing perimenopause?" I asked.
"Oh, no, dear! You're long past that. You'll probably never have another period as long as you live."
The blood test evidently only works if it hits the days your hormones have fluctuated the "right" way, for those of you who may still have an ovary. Of course, in the past 10 years, the blood test may be more sensitive. It was kind of nice knowing I had recognized what my body was doing. The doctors kept saying I was too young for perimenopause. I kept telling them both my mother and sister had their last periods at 47. Oh, well!
- By verlinda
- Posted October 7, 2009 at 12:59 pm
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I would add one caution for any woman with fibromyalgia. Because so many of the symptoms of ovarian cancer are things we deal with on a daily basis or are part of aging (weight gain, aches and pains, etc.), I ignored them. I had become accustomed to having them and just going on anyway. I was so blessed that my PA included me in a longitudinal study trying to prove annual ultrasound for at-risk women (mother or sister with breast or ovarianc cancer were the criteria, I think. I had both.), my tumor was found early and I was diagnosed at Stage IIb. Otherwise, I would have continued to ignore the symptoms until it was too late.
At the least, I would advise women with fibromyalgia to push their gynocologists to come up with a plan that would check for ovca symptoms. Explain that we daily ignore many of the ovca symptoms just so we can approximate a normal life.
I don't know how you'd get a doctor to order a CA125 on a woman who isn't overtly exhibiting symptoms, especially since it isn't really a screening test and is only done in the presence of symptom which many fibro women always have, but it would be the easiest way to remain on the alert without driving yourself crazy. You would have to remember that many health issues can cause a rise above a normal reading. In my case, I'd had cysts two or three years earlier which had disappeared.
- By Shelter
- Posted October 7, 2009 at 1:19 pm
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I have battled with fibromyaligia, for about 20 years
and Chronic Fatique.
Last spring when I had chemotherpay-,, my fibro flared
prob the worst I have ever experienced it...
I was treated with nortrypline.. and guess what
things got even worse, for 2 months until i stopped taking the medication, under doctors advice
I think many post chemo paitients actually have fibromyaliga afterwards...
something like a side effect of the chemo itself.
just my opinion
and observations
- By PUPPYMOMMY
- Posted October 8, 2009 at 6:54 pm
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I have been sitting back since starting this discussion to see how it would develop. Thank you all for participating. My friend is feeling better, and like us she takes one day at a time. I agree with Shelter, the description of fibromyralgia sounds a lot like chemo after effects. And it makes sense especially if it is a chemically induced condition like exposure to floride that can cause fibro. The most common being that it comes and goes, there is no real "reason" for the symptoms, it is just pain for the sake of pain. The body just hurts all over.
A good pain management plan is effective in keeping active and not having "down" days. I include diet, exercise massage and accupressure as part of my treatment. Of course 1/2 Percocet can really give me the added strength and energy to go on. Sometimes you just really hurt!.
I wish you all well and pray you have more pain free days with energy than the other.
Puppymommy
- By Peacelily813
- Posted October 19, 2009 at 6:43 pm
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I was Diagnosed with Ovarian cancer at the age of 15 I received Chemo carboplaton and taxsole. I had 4 major and 3 minor surgeries to remove the ovaries and bowel obstruction due to scar tissue. I have been suffering from shoulder, neck,chest, arm, hand,hip and leg pains after Chemo and my surgeries.I am still having abdomen pains with a pulling sensation and irratable bowel. I have been to many doctors who sent me for CT and MRI scans and they said they are all negative. My neurologist told me it was fibromayaligia. I have been on many meds and now I am on Neurontin 100mg, Amitriptyline 25 mg, and Ambien for sleep. The pains are very painfull and the Medication side effect are horriable. I due feel chemo and my surgeries has caused this. My doctors do not feel this is a cause of Chemo side effects and told me they cannot do anything else for me but prescribe medication and physical therapy. IF anyone has had this same symtoms please let me know. I am 30 years old in remission every day has been hard with the fustration of doctors.
- By PUPPYMOMMY
- Posted October 20, 2009 at 7:56 am
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Peacelilly, your chronic pain is real and the doctors are just not sure what to do so they pump you full of drugs and send you away.
I really have had some good luck with my holistic massage therapist. I am 2 1/2 years in remission. Took Cisplatinum and taxol in my abdomen and vein every week for 6 months. I was really a broke down mess afterwards. Very skinny. As I regained my weight, I had what I reffer to as the Chemo growing pains. I think every part of the body is effected by the destruction of the chemo and truama of the surgury. As you heal, your body speaks to you and you have to be the advocate. Everyone is different. I am just now enjoying builing some muscle mass! The pain has been excruciating at times. I am blessed with a physician that listens to me and lets me take what I feel is best for me. I was offered all the newest drugs for arthritis, nerve damage etc. I turned them all down. I did not want to complicate things with more chemicals. I wanted my body to find itself again.
I feel more like my old self every day. The massage therapist comes to my home every other week and spends 90 minutes with a combination of soothing herbal ointments, a relaxation tape, hot packs, electric accupressure, and some really awsome massage and manipulation. My spine I feel is stronger and my shoulders and arms do not hurt as much. I have even begun an exercise program riding a stationary bike 4 miles a day and have cut back on the percocets and completely eliminated the ambien.
This is good news for me, but I do not know if it will help for you. One thing she does is massage the scar tissue in my belly caused by all the chemo in there. The weekly stretch and heal really built up a huge wall of scarring. It is no longer painful to touch.
I hope this helps you. Your pain is real. Talk to your doc about a combination of traditional and alternative medicine.
Puppymommy
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