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From Our Readers: Comments & Suggestions – 2/11/2014

  [ 10 votes ]   [ 1 Comment ]
www.ProHealth.com • February 11, 2014


From Our Readers: Comments & Suggestions – 2/11/2014
Metal Allergies and FM: Cause & Effect?

Re: “Metal Allergy Can Trigger Fibromyalgia

My FM began soon after a total hip replacement. The hip is ceramic, but held by metal bolts. I have also noticed that my FM has gotten progressively worse since I broke my ankle and had a plate and pins put in. I thought it was from the trauma. I wonder if anyone has thought to test for metal allergies before joint replacements? – Boodie
_________________________

Energetics

Re: “PQQ Reduces Inflammation, Improves Mitochondrial-Related Metabolism in Humans

Anything which helps the function and integrity of mitochondria and oxidative phosphorylation will help both Fibromyalgia and M.E.  These illnesses are cellular energetics diseases. Almost all symptoms can be explained by energetics (low ATP synthesis). – IanH
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Your Study vs. My Reality

Re: “Long-Term Evaluation of Opioid Treatment in Fibromyalgia

...I have been on disability and narcotic pain medication for more than a decade because of fibromyalgia. My doctor has had me try numerous other therapies and medications which I will not take the time to list here. The point I'd like to make is this: these scientists can do a hundred studies. It doesn't change the fact that for many of us – very many of us – narcotic medications are the only medications that have been able to address the pain sufficiently to enable us to function in any capacity. That's reality. Please respect it and don't start making "protocols" and policy for treating fibro based on your studies. – sweetiesmom
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Does She or Doesn't She?

Re: “Living with Fibromyalgia: What Helps Me

I can't believe ProHealth still has no idea what fibro/cfs is all about. This article has nothing to offer, does not cover the fact that fibro/cfs is far more serious than this woman's problems. She works full time? Impossible. Treats her problem with over the counter meds? Impossible, and dangerous. Articles like this only serve to trivialize the absolute horror and disability of this illness. No wonder the public has such a wrong opinion of this disease. I wish the author of the article well, but she does not have the illness that my wife and I have had for over 25 years. Please get serious and print stories about the extreme disability, the agony, the pain, the cancers and heart disease, the loss of careers, the divorce....I could go on and on but the point is that this illness is far worse than what this woman suffers. – scottyojai

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I cannot believe this lady. Her fibromyalgia is a walk in the woods on a sunny day. The terrible pain and other problems I have been going through are the real thing. Going to pain doctors and centers today to get pain medication to keep me able to function at all is getting more difficult every day. The government does not want doctors to prescribe pain meds that they have been using for over 30 to 40 years. Get alternative pain relief and I would be the first in line if it really got rid of the intense pain of screaming on the inside and wanting to rip out my entire nerve center or whatever is causing all the misery. Plus put out info that helps us. Ms. Sunshine is just a daydream for someone. Not me. – annmc

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While I agree that she should not be taking most of those medications as they really are not good for you, I find that those of you who have written with the disbelief that she could still work etc. with Fibromyalgia need to do a little more research.

I have suffered with Fibromyalgia since the early 80's and also have Chronic Fatigue. I worked with handicapped children for 22 years since being diagnosed. I deteriorated slowly due to watching what I was involved in, what I ate, how I slept, stress levels etc. etc. You all know what we each had to go through to try and feel better. The specialists I saw who believed that Fibromyalgia was in fact what I had, told me that those with Fibromyalgia did not all suffer the same and that I could find that I could continue to work as long as I didn't over do it. With the understanding of my boss I was able to continue working. I retired at the age of 62, as I could no longer do my job without being in extreme pain in my back. During the years I worked, I was told I did the job of a healthy 20 year old.

I know some of you would not be able to do the things that some people with Fibromyalgia do but the symptoms of your condition are not the same as everyone else with Fibromyalgia. I am now where you are at as I'm not able to work and my ability to put in a days work at home are few and far between. So you see, if you understand that there are levels of illness it will help you understand why some people can continue to work where others can't.

I have also invested in a variety of supplements which help me tremendously. One of the ones that I can't do without is MSM. I also have upped my Vitamin D3 to 4000 IU. There is so much the doctors don't know with regards to what you should take and you will find you have to do research on your own. Find out what others take that helps them (natural supplements). Regular doctors will prescribe drugs which really aren't good for anyone to take but that is all that they know about. Hopefully in the future, all doctors will take courses in Natural Medicine and cut back on prescribing prescription drugs.

Talk to a Naturopath about supplements that could help you. Not all supplements help everyone as our bodies are different and react differently but they will know what has helped other people. Hopefully one day they will find out what the cause is and find a cure. Peace be with you all. – Dollyonline

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I agree with the previous post that people with FM &/or CFS (I happen to have both) all suffer in various ways and at various levels of severity. We even tend to differ ourselves individually over time.

In addition, our own treatment plan must include more than just pain medication: That is simply covering up one symptom. There are ways we can help ourselves feel better from so many different angles, and it all takes trial and error, for the most part. We can improve our diets, our movement, our rest/pacing and sleep hygiene. We can further our education and knowledge about our condition(s) through reading and networking. We can try alternative therapies such as massage, cranio-sacral, yoga, acupuncture, supplements, cognitive behavioral therapy or just plain counseling, to name a few of the more commonly successful ones. (Remember, what is helpful now may change over time, so stay in tune with your body!)

All of these strategies fall on us patients --as far as the responsibility to initiate, follow through, and adjust. More importantly, we're responsible for the cost. Maybe that is why several do not pursue some therapies. Perhaps someday people with our diagnoses will be allowed to have the variety of services required to treat our conditions covered by our health insurance. For now, it is up to each of us. So for now, try to complain less and instead, start figuring out what you CAN do that helps. You are investing in your quality of life. – serenebeth

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I went to the doctor today and a new nurse was imputing info into the new system so I was like a new patient.

Q: Do you have days where you feel blue?
A: More like deep purple.

Q do you ever have days of depression?
A: I have depression as a side effect of my disease.

Q: Do you ever have moments of loosing thought or process of thought and how often?
A: Yes my brain will have a word but my mouth can't comprehend it so I stutter around giving the impression of being drunk and my family finally finishes my sentence, thankfully.

Q: Do you have periods of memory loss?
A: Yes the coffee pot. I couldn't remember if I turned it off, so family bought me a Keurrig.

Q: Have you fallen in the last three months?
A: Yes

Q: How often?
A. Often

Q: What do you do to eliminate falls?
A: Eventually I hit the ground and that brings an end to it.

Q: Really do you get a trigger that you are about to fall?
A: Sometimes. I notice I am shaky inside and stumble off balance like I am intoxicated.

Q on a scale from 1-10 what is your pain level?
A: Resting pain level is about a 5. Active pain level 8-9 – like grocery shopping longer than 30 minutes. And residual pain for three days after shopping, trying to straighten the house and doctor visit. I will be down for the count for at minimum 2-3 days.

Q: Are you able to do your own house work?
A. No

Q: Do you need help with your daily living i.e., mild cleaning, bathing, dressing, etc.
A: Yes, that would be a miracle.

Q: Do you receive help and why or why not?
A. I am a disabled Respiratory Therapist that now gets SSI. I do not have any money for extras.

Q: Do you ever feel so depressed or sad that you could hurt yourself or others or think of death as options?
A: Yes- today actually. My septic tank is backed up, my oven stopped working, one burner on my stove stopped also, my laptop crashed so this one is a loaner because this is my outside life. There are days I do not even step outside my front door. I chipped my tooth chewing gum and a sweet little dog walked up to me while sitting outside and pissed on the blanket I was wrapped up in. And all that happened from Friday to Saturday. So yeah I think I am in pain, I have no money, my kitchen is falling apart and I have poop in my bathtub. I think I qualify.

SSSSooo obviously you can tell I have had this disease that does progress for 21 years and articles like this leave my give-a-darn busted. I say do a rewrite in 5 years and see if you, the writer, agree with your own article. – JuliusCaesare



Join the Discussion Post a Comment 


Fibromyalgia Meds
Posted by: whoopingcrane
Feb 12, 2014
I was diagnosed with chronic fatigue syndrome/fibromyalgia about 30 years ago. As it turns out, I don't have either. What I and many of you have is Chronic Lyme Disease with co-infections.

The standard testing for Lyme is the main reason most of us are told we don't have it and then don't get treated for an illness that will destroy our lives.

Please seek out Lyme literate physicians and get tested for Lyme Disease and co-infections with the Igenex test.

I hope this will help someone.
Reply Reply
 
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