From Our Readers – Comments & Suggestions 02-04-09

How I Made My Doctor Understand My Pain

I’ve been seeing my rheumy for 6 years, and only at my last appointment was I finally able to get something for the pain. Previously, he recommended I take Tylenol! Even when I tried to explain that Tylenol didn’t begin to touch the pain I was in.

What changed? At that last appointment I directly said, “We have to talk about pain.” And then I described to him how many days a month I was in severe pain, and exactly what that pain was like. “By late afternoon on those days, I become completely nonfunctional. I take my maximum dose of muscle relaxers and my maximum dose of Tylenol and I’m still in so much pain that all I can do is hunch over in my chair and try not to moan. Every muscle in my body is as tight as it can possibly go, and then I get sudden pains like being stabbed over and over with a knitting needle. I’ve had 2 children with no medication whatsoever, and this pain is worse. I need something to help me on those days because I cannot deal with that level of pain. I can’t take it anymore, and I shouldn’t have to.”

And surprisingly, he took out his prescription pad and wrote me a prescription. He even said that if that medicine didn’t work we’d try something else. Thankfully, it does help… – Janelle


Tai Chi Helps Me Keep Moving – Easy Does It

I have had FM for about 20 years. I have improved mostly by learning the appropriate exercises for my body (keep moving gently) and when to do them (listening to my body)… I have improved substantially by learning Tai Chi… I go to classes once a week and practice at home 4 or 5 times a week… Tai Chi is very gentle and you can go at your own pace and comfort. It helps with not “fighting it.” Tai Chi has lessened my FM pain and fatigue. It has helped me be more flexible and strong; have a better sense of balance; better mood; improved self-confidence; moving my body efficiently; calmer nervous system; more relaxed; and I have made new friends who practice Tai Chi. I have improved so much that I don’t have to see my Rheumatologist any more!

This is no small feat for me. It has taken lots of practice and listening to my body as to when and where and how often I do it – and accepting that my body is different from normies’ bodies. I practiced almost daily to get into the habit of doing Tai Chi, even if it meant only 10 minutes of practice in one day. – AlaskaKK


Doctors Don’t Always Tell Enough About Drugs

I’ve noticed over the years that doctors don’t always tell you all about the drugs they prescribe. I’ve learned the hard way to look up everything about any medications I’ve been prescribed. Most doctors are thorough in their explanations, but not ALL. When in doubt research the drugs, and call your doctors. We all need to know what we are putting into our bodies. Most doctors are caring people but… I feel get “comps” from the drug companies… Know what you’re takin’. – daylight


A Site That Offers Patients’ Comments on Meds

I can’t tell you how many times I’ve been prescribed something that I’ve been allergic to, even with documentation in my chart. I always check out meds when prescribed – for interaction, side effects etc. I also look up the meds on – it gives reviews from patients who have taken the medication, for what reason it was prescribed, and how it has either helped or hindered them. – Janalynn


Talk to a Pharmacist About New Med’s Side Effects

Most pharmacists are more knowledgeable about drug side effects and interactions, than many MDs. Or maybe it’s that the pharmacists will take more time to explain things. I’ve found I usually have to ASK about med side effects. I talk to both the doc & the pharmacist, and compare the info. – SnooZQ


Sugar’s ‘Up’ Turns to ‘Feeling Down’

Re: “Thirty Days Without Sugar (Why Would You Want to Do That?)”

Years ago, I wanted to lose about 15 pounds. A friend of mine suggested a weight control center in the area. I figured I would give it a try because my friend had lost 40 pounds on the system. When I got there, the counselor asked me what I struggled with the most. I said “sugar, I feel as if I have to eat a chocolate bar every day.”

She turned to me and said, “there is no sugar on this diet.” I was shocked. I had eaten sugar most of my life. I figured I would give the diet a try for two weeks since I signed up and paid for my membership. After two weeks, I could not believe how much better I felt and the energy that I had – for instance I was working 8-hour days and then going to the mall and walking around for another 3 hours.

I have learned “for every action there is an equal and opposite reaction.” This is so true. The little “up” you get from the sugar you eat, is normally equaled out shortly with “feeling down.” It is not worth it. I try and stay away from sugar as much as I can now. – fm55


Pain in Toes & Fingers – It Was the Sugar

One of my “New Life Goals” for 2009 is to cut table sugar out of my diet. I have noticed over the past year or so that when I have a lot of sugar in my diet (especially pop, hot chocolate, and iced-tea) I start to get a lot of pain in my toes and fingers. I was also starting to feel over-heated whenever physically active. Within a week or so of stopping the sugar, the pain went away and the feeling of being overly hot lessened. I’m hoping to see some weight loss from this also.


Some of Us Have Mushroom Allergy

Re: “The Immune Enhancing Properties of Certain Mushrooms – Science & Latest Research”

This is all very interesting except that some of us have mushroom sensitivities and or allergies. I dare not buy Chinese take out. I no longer eat at Wendy’s. (Seems they cannot clean hands or utensils well enough to eliminate cross contamination.) I also cannot use Penicillin and must wear a medic alert for same. This should be a listed ingredient like nuts, but is not. – shartau


On the Benefit of Routinely Prescribing Probiotics with Antibiotics

Why Don’t Our Doctors Tell Us This? …My question is, why is the public not informed via radio or television regarding the proper use of probiotics in order to at least ward of some of these terrible side effects? I live in an over-62 community (I’m 67) and I know many count on the TV for most of their info. Also, why are primary care MD’s not verbally informing patients of the best counter-measures to take to protect themselves?

Probiotic was Lifesaver for Elderly Mother. My mother had C. difficile [a bacterium that most commonly affects older adults in hospitals or long term care facilities and typically occurs after use of antibiotic medications] and had a terrible time with it. Since the Flagyl [antibiotic] does its job well, the patient has to start replacing the good bacteria that they’ve lost as soon as possible. I was fortunate enough to learn from someone else that their doctor ordered them to take a probiotic… along with the Flagyl. I immediately ordered it online, and my mother felt better within days of taking it. As my mother is 80, this truly was a life saver for her. Now she won’t go a day without taking [it].


Thanks for the Supplement ‘Label Info’

I very much appreciate that purchasers can view the actual label info on your products [in the ProHealth Store]. This is essential for understanding potential interactions – including potential interactions with prescription medications. – Careful Customer


Acid Neutralizing Drugs & Low B-12

I am glad to see this subject addressed (“Could a Common B-12 Deficiency Be Causing Your Symptoms?” ). I have Fibromyalgia and have been getting B-12 shots once a month for several years. It keeps me from being fatigued and weak. I recently started taking B-12 supplements orally once a day between shots and it is helping me avoid the let down between shots.

I also have been taking medicine for acid reflux for a long time, and have never seen that related to B-12 deficiency. Thanks for this article. – franlea


Bacterial Overgrowth & Low B-12

As mentioned in the article (“Could a Common B-12 Deficiency Be Causing Your Symptoms?”), a bacterial overgrowth will contribute to a B-12 deficiency. Dr. Pimentel has shown that most people with fibromyalgia have a bacterial overgrowth in their small intestine. The more the overgrowth, the more the pain. – Phattemer

Note: Dr. Mark Pimentel, MD, is Director of the Gastrointestinal Motility Program at Cedars-Sinai Medical Center, Los Angeles. His interests include small intestinal bacterial overgrowth (SIBO), IBS & related conditions.


Fostering Animals is Helpful Work I Can Do At Home

Often with FM and CFS I have fought to keep myself from feeling purposeless.
There is nothing worse than feeling hopeless, helpless, and like you don’t exist.

So, I started fostering animals. If you can’t work, but if you have some strength, volunteer for a rescue group or shelter. You can help a wounded animal, an older animal, puppies, whatever you feel you can handle. I’ll tell you, it does tire you out but in a good way. It’s like you’ve done something, even if you can’t leave the house. Taking care of something can refresh you in a way.

It’s also like you’re helping each other get through a tough time. I hope this helps someone. 🙂 – Christina


A Video about Herpes Research

Please watch this – a video about potential cures and vaccines against the herpes simplex virus. – soclose

Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in consultation with your professional healthcare team.

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