anyone out there with auto-immune/chronic pain issues before dx?
Comments
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Hey, I'm on an every YEAR schedule!! I saw my onc yesterday, but it wasn't her. She was off so I saw a stand-in. Stand in wondered why I had blood work done and I said because the doc ordered it and she said "or you did". Now how can I order bloodwork????? Any way, she told me to take a copy to my PCP as some of my levels are too high. My Lymphocytes, Monocytes and Total CO2 are over the top, and White Cell Count and Platelet Count are flagged.
So what does that mean?
Luan, are you coming to the Canadian Get Together in NOTL??
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Kira, I don't believe the doctor I'm being referred to is an LE specialist or maybe she is...anyhow, she deals with all of the SEs, chemo, drugs, rads, etc...did not even know she existed !
Hey Barb, those stand-in young ones can be insupportable
Jesus, I hope you don't have to wait one year to find out. Don't know, wouldn't it be a good thing if your white counts were up. Mine are flagged below normal, don't know that's a good thing...Wowwwwww, first time I read your post I read are you coming to the Canadian Tire Get ....had to reread, did not understand....and I'm not taking anything !!!! I still don't know what that is.. is that on the Canadian Women's thread, have not even made my way there yet !! NOTL ?? Sorry, my brain is mush besides being reaaaaaal dizzy
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Niagara on the Lake - NOTL. Check out the Canadian thread.
The onc was annoyed that I'd had bloodwork done!!! She said 'we don't go looking for trouble'. Really? I felt like asking her if she'd had her mammogram lately.....
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Barb - good golly. No kidding - what was she thinking?!
A question for all of you: Do you get sick after a vaccination? I knew about the shingles vaccine, but chose not to get it because I almost always feel crummy for a few days after a vaccination. And in the wake of chemo/rads, I was in no mood. Please chime in and tell your opinion/experience.
Mary
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The onco said that ????? wow, it beats my donkey onco !
Barb, oh.... thanks for the invite, but I would neverrrr get there, are you kidding me. I don't drive beyond a few blocks just to do groceries these days. I get lost going to my doctors' appointments
besides energy wise, I can't even begin to imagine. I really hope things get better for me, coz it ain't fun. I hope you have fun and enjoy yourself, maybe next year, yeah ?Magob, I've not been vaccinated since I had the double or triple hepatitis vaccine approx. 20 years ago, and I swear it has made me feel worse ever since, if that's possible. I don't trust vaccines full of formaldehyde marinated in monkey tissue. Wuckkkkk
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MAGOB- I have to admit I haven't had a vaccination in years. They used to recommend the shingles vaccine for those over 60 but just lowered it to 50. After watching my Mom go through so much pain I think I'm going to get it. Guess we'll see what happens!
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Hi there,
To everyone having problems such as fibromyalgia and chronic pain I would suggest you have your vitamin D level checked. I had chronic lower back, neck, muscle and joint pain, along with some peripheral neuropathy for about 2 years. I had numerous blood tests, scans, and saw numerous doctors including specialists. I also went to physical therapy for 6 months. Nothing helped including the muscle relaxers. The doctors made me feel like the pain was made up. I was told to go to meditation class. I had zero health problems prior to this and only went in for regular checkups. I felt like it was something simple the doctors were missing so I persisted in finding the problem myself. I was watching a medical show on PBS and saw an episode in which a woman was diagnosed with fibromyalgia and on meds for over a year. The meds didn't seem to be helping so she encouraged her doc to dig deeper. Turns out she was severely deficient in Vitamin D. That clicked for me and I called my doctor to request a test. Sure enough I was very deficient. After 1 month on a very large dose...50,000 units a week all my pain started to clear up. I was on the large dose for 3 months and then tapered down to 2000 units a day. I have been spending more time in the sun as well. I finally felt the best I had in 2 years and was pain free when I got the breast cancer diagnosis. I have zero history of cancer anywhere in the family and no other risk factors. I am convinced the Vitamin D deficiency played a role in the breast cancer. My Oncologist did say that there are many studies on the role of Vitamin D and cancer currently underway and that they are discovering there may be a link. Breast cancer cells have vitamin d receptors that may help stop cell proliferation. Vitamin D is considered a pre-hormone and plays many different important roles in the body. Every one should have their levels checked. I wish doctors would do a better job educating their patients about the basics. I hate to think that taking a vitamin could have saved me from cancer. Now all I can do is put the word out there. Even MS is now linked to a Vitamin D deficiency. We are all in this together and all we can do is educate and support one another.
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frmgrl- Thanks for the information on vitamin D. I think the subject came up somewhere in this thread. I was tested and found to be extremely low, too, so now take 2000 units a day as well. I do find it helps with my fibro pain, and if I forget to take it I know it later, but it never erases all my symptoms. Just a word of warning to others- don't just start taking mega doses without having your levels tested first. If you take large amounts without being deficient you can actually do organ damage.
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Vit. D is supposed to have some pain controlling properties. I'm not sure why (as that knowledge went straight to the forgetful area of my brain.) It also seems to help me sleep better which, in turn, also eases the FM pain off a little but, like Kate33 said, it never seems to manage the pain fully.
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I've been taking 35,000 Ui a week for about 2 1/2 years now and can't get pain free.
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I agree about not taking mega doses of anything without being tested by a doctor or talking to your doctor first. My doctor put me on 50,000 units a month and my vitamin d level went from 17 to 30 in 4 months. It is very hard to increase your vitamin d level in a short period of time without taking a higher dose. I try to get out in the sun every day for short periods of time as I would much rather get any nutrient or vitamin naturally. You can not get toxic amounts of vitamin d from sun exposure and it is very difficult to get toxic amounts from supplements unless the supplement dose and the actual amount in the pill are mislabeled. Having said that, you should always check with your doctor on dosing and get the supplements from a reputable place. If anyone is supplementing Vitamin D, please be sure to be getting enough magnesium, phosphorous, and calcium. They all work together. I think a lot of people hear about one vitamin and don't pay attention to the other factors that influence it. I don't propose Vitamin D to be a miracle cure for pain or breast cancer but I do know that it helped me tremendously with the pain so I wanted to put it out there just in case it could help someone else dealing with chronic pain. I had a hell of a time convincing my own parents that my pain was completely gone because of the vitamin d. Just seemed too simple. I do hope your pain improves over time Kate33. I appreciate all the great information I have been getting on this site. Thank you to everyone.
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frmgrl- Thanks for reminding everyone about needing the other supplements with the D. I don't think a lot of people realize they go hand in hand!
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But you all need to be tested - don't blindly take huge amounts as they can be toxic. I was taking a large amount and was tested and they told me to only take half of what I was taking or I'd really get my self into trouble. this was all pre-BC and such so didn't help me I'm afraid but I think all doctor's are catching on how important vit D is - just don't expect miracles from it.
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Asking this of fibromyalgia sufferers...
1) Was the onset of your FM around the time of perimenopause (like when hormones levels would start to fluctuate and drop?)
2) How many with FM are also troubled by migraines? Did the migraines begin or worsen once you had your FM symptoms?
Just curious.
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elimar, I had migraines in my 20's so bad that I burst blood vessels in my eyes and the white part would be all red. Tried SO many different drugs to get rid of them. Finally left my husband and slowly got rid of the headaches!!!
FM usually starts with a trauma of some sort; an accident, a virus, something like that. I got a cold sore (Herpes Simplex I) for the first time in my life as an adult. It almost killed me. I was hours away from being put in isolation. I believe that is what started my FM.
I was officially diagnosed around 40 years old.
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Barbe, that is pretty severe! I had migraines at puberty, then hardly ever until perimenopause. I like to blame hormones for everything. Wondered if it was a factor in FM? Don't know what has been studied and what hasn't. FM does seem to have middle-age onset for some reason (even to women without husbands, heh-heh!)
I cannot think of a trauma that I had about 5-6 years ago. There was nothing big anyway. Not sure about virus. In some ways it doesn't matter when or why FM began, if only I could make it go away!
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My FM started when I was nowhere near menopause (early 30s), but since BC related hormone therapy, I have noticed a huge improvement in symptoms. I think in part this is because of the many many things I do (and even more that I don't do) for my health now that my life actually depends on it (not that it didn't always, but, you know...) but mostly I think it's the reduction of circulating estrogen. So it makes sense to me that peri-meno could be the onset trigger even though and injury is more common. Could be vitamin D heling out too though, for sure. Or iodine...really who cares! As long as it works...
I do not have migraines, never have. (Knock on wood!!)
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My fibro started shortly after the birth of my son (definitely a wild flux of hormones during pregnancy!) but did seem to get much worse with peri-meno. Lately, though, seems to come and go. I never have had migraines, though.
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I never thought of my FM as hormone related...hmmm. I had a hysterectomy about 9 (?) years ago and I wonder if that's why I'm worse??? But others got better!!
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Maybe every body is different regarding optimal levels of hormones? (Maybe some of us need AAA batteries and some need D's?) Mix in whatever different auto immune stuff we have going on and seems like what would work for one might not work for another. I know the absolute best I have ever felt in my life (as in- WOW! This is what my body is supposed to feel like!!!) was during the 2nd trimester of my one and only pregnancy. Whatever was going on them I wish I could have bottled it and taken it every day.
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Oh wasn't pregnancy wonderful Kate!!! I blossomed too!! I had men adoring me and touching my belly, I was one of those who 'glowed' through the bulky bits.
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barbe- It was wonderful all around! Just sorry I only did it once!
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Hi - just joined and wanted to indicate that I too have FMS. After the birth of my son at age 40 I developed a severe thyroid issue - Hashimoto's- one of the worst my Dr. had seen and I believe this triggered my FMS. I also developed allergies at that time and other issues. Younger I had interstitial cystitis, another odd chronic disorder. That improved during pregnancy. Lately, since diagnosis, surprisingly FMS has been better. I thought for certain I would flare. I am careful to keep my blood suger stable by eating every few hours and try to exercise daily (makes a HUGE difference, esp. outside with lots of oxygen). Those things help with my fibro. This is my second CA. I believe both were highy influenced by stress in my life. There has been a lot of trauma and I believe this 'weakened' me. Lots of hormonal stuff too though. Have been prone to headaches since adolescence. Have to work on the Vitamin D. Interesting thread.
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mybee333- Welcome to our little thread here. (Love the 333's by the way!) I, too, saw my fibro symptoms improve after DX and during treatment. So strange since stress usually intensifies it. I sometimes wonder if it was because I was getting such deep sleep with the pain meds I was taking but it persisted for months after those stopped. Unfortunately, it was short lived but I enjoyed it while it lasted. I do find the Vitamin D helps a lot with my pain levels, though. It might be worth it to get your levels checked and supplement if you need to. Again, welcome!
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elimar: my headaches HAVE gotten worse since taking away sources of estrogen..another bc joke on me....
mybee333..... they just casually told me i may have Hashimoto's also. started on synthroid, we'll see in Oct when drs. doing a big workuop...it was really bad till i started the thyroid meds. hoping i'll get improvement...
so glad you found us.. i might have to pick your brain some, as noone has had that dx........3jays
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Today was one of those days that within seconds of waking up you just know it is not going to be a good fibro day. Normally, I can push it away and still move through the day but as I was lying there I just got so mad. Why do I, and so many of us on here, have to wake up every single day in pain? And why can't we have a big "I feel like crap" meter on our foreheads so people can look at it and get it. They can see when your "meter" is high and say, "Wow, look how much pain she is in! I can't believe she's getting out of bed, making breakfast for her son, doing that load of laundry." Instead I feel like they think why doesn't she do more? Why does she sit around so much? I just can't help thinking that I am never going to have a single morning, for the rest of my life, where I don't wake up hurting everywhere. And that ticks me off!
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Kate33 Thanks for the welcome. I know what it is like to have those days. In fact for the last 4-5 mornings I have been waking up dizzy, it seems from a sinus infection. I guess I didn't have enough going on
. But I've started an antibiotic and that should help. My family and even my BF forget I have fibro.This is good and bad but sometimes I do remind those closest to me, just casually in passing, because they do forget. Sometimes I just have a need to put it out there! I do miss the energy I once had though. I think that is the hardest. Recovering from surgery doesn't help right now.3jaysmom The Hashimoto's came on after the birth of my son, suddently and then s-l-o-w-l-y corrected itself over about 7 years or so. But the synthroid really helps a great deal and made me feel pretty normal. Also - I used to use HRT before dx, and while the dosage was being adjusted I experienced a lot of estrogen headaches-from either too much or too little. But I would find after I adjusted, the headaches would diminish. So...........hang in there. Things may get better!
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Addiction vs. Dependence on Pain Medications
Pain expert Dr. Scott Fishman answers questions about pain medication:
Q: What is the difference between being addicted and being dependent?
A: Fear of addiction has prevented many physicians from prescribing needed pain relief and many patients from controlling their pain and reclaiming their lives.
Pain doctors have known for years that taking opioids over long periods of time for medical reasons does not have to lead to addiction. More than a decade ago, neurologist Russell Portenoy, who was most recently President of the American Pain Society, reviewed studies of almost 25,000 cancer patients. Most of those patients had been on opioid therapy for many years. Of the whole group, very few showed any signs of drug abuse, drug craving, or drug-seeking behavior.
Every one of these cancer patients was dependent on their medication. However, their physical needs were worlds away from addiction. Addiction is a biological and psychological condition that compels a person to satisfy their need for a particular stimulus and to keep satisfying it, no matter what.
It is a compulsive behavior that demands more and more drugs, regardless of the consequences that lead to dysfunction. A person who is addicted to opioids has a disease that undermines optimal function and drives one to compulsively use a drug, despite the negative consequences.
The pain patient who is effectively treated with opioids finds life restored-even if he is dependent on them. With the pain muted by stable and steady controlled use of long-acting opioids, a patient can reclaim his life, go back to work, return to family life, and pursue favorite pastimes. Dependence is a physical state that occurs when the lack of a drug causes the body to have a reaction. Physical dependence is solely a physical state indicating that the body has grown so adapted to having the drug present that sudden removal of it will lead to negative consequences such as a withdrawal reaction. This can occur with almost any kind of drug.
A good example of dependence is a heavy coffee drinker's use of caffeine. If you are used to drinking several cups of coffee each day, you soon learn about physical dependence when you miss a day or two. This does not mean you are addicted to the caffeine; it only means your body is surprised not to see what it has come to expect.
In the case of opioids, a certain amount taken every day fills the glass, and no more may be needed or desired. If the medication is removed, the consequences are physical (sweating, running nose, diarrhea, racing heart, or nausea), not psychological.
Up Next As any diabetic will testify about insulin, or any heart patient will testify about blood pressure medication, dependence is not necessarily indicative of addiction or drug abuse. In fact, regular use of these medications may be essential for good health.
The difference between a patient with opioid addiction and a patient who is dependent on opioids for chronic pain is simple. The opioid-dependent patient with chronic pain has improved function with his use of the drugs and the patient with opioid addiction does not.
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I believe the final sentence is the most important one. Level of functioning and ability to function effectively are key.
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Kate33, The first few steps I take out of bed each morning are so painful, but like you said you just push thru', and so do I. Why should the feet feel so bad after being off them for 8 hours? Then, after a little walking, they are somethmes not too bad until the night when they get achy again.
I have used those first psinful steps in the morning to evaluate different medicines I have tried. It's a good barometer of how effective they are for me.
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