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From Our Readers - Comments & Suggestions 05-20-09

  [ 10 votes ]   [ Discuss This Article ] • May 19, 2009

Do You Apologize for Your Illness a Lot?

When I first started going with my husband it seemed as if I apologized all the time...until he called me on doing this! He sat me down and tactfully explained that if I did something wrong and it was intentional then by all means an apology was in order. For instance, being cross, rude, taking advantage of situations or others. Let's just admit it, these are sometimes common practices when we don't feel well, but we do not have the right to do these things to others just because we feel bad.

On the other side of the coin, he explained, if I did something that pertained to my illness and it was something I could not control (being forgetful, calling in to work because I'm sick, begging off a scheduled appointment or activity), THEN an apology certainly should not be expected or warranted. Especially if the people involved are aware of your diagnosis and they know these things sometimes happen.

No one should have to apologize for having an illness, and if others do not understand this then it is THEIR problem, not ours. We bear enough burden and have enough to deal with without feeling guilty for our "shortcomings" and we should not have to tell everyone we are sorry all of the time. (BTW - Can you tell my husband's career is in law enforcement?)

Of course most of us want to be considerate of others and we don't want them to be offended or "put off" or "put out." That's why we feel the need to apologize all the time. It has taken me a long time, but I am finally getting out of this habit of always apologizing.

The plain and simple fact is that I feel much better when I refuse to apologize for not feeling well! And I have told my fellow co-workers that from now on I refuse to say: "I'm sorry - I'm not feeling well"! Also, if you are at a store and feel like you can not take another step or lift another finger; when the clerk asks if you need assistance please allow yourself to say: "Yes, thank you, that would be very nice today."…

Hope this makes sense. We are all creatures of habit, right? Well it's time to break some habits! - R


Back Pain and Vitamin D – 30 to 80 is Normal, Mine was 13

Re: Mayo Clinic pain study suggests ‘Many patients who have been labeled with Fibromyalgia are, in fact, suffering from symptomatic vitamin D inadequacy.’

I have been complaining of severe back pain for 7 years; I was put on a narcotic and my usual muscle relaxants. (I have a 12-vertebrae spinal fusion from scoliosis 41 years ago without hardware)… I started losing height quickly, and told my doctors. Not much reaction there. Recently I had a blood panel run at a different doctor and came back with an extremely low thyroid number… I was referred to an Endocrinologist who sent me for more tests. Everything came normal except the vitamin D. I looked up on this website about the symptoms of lack of D - I have almost all the classic symptoms.

Then I went to the pain department here and find out vitamin D deficiency can be a major factor in chronic pain. WOW, it appears that a simple blood test could help pain patients and rule out a vitamin D inadequacy. Today I took my 1st of four 50,000 IU pills of D [to be taken] within a month. I hope it helps. This can soften the bones, which may have caused my fusion to have some failure. I lost 1-3/4 inches in height; parathyroid not working correctly, and complete pain all over, among other things.

This is a correctable situation and I hope more people find out about this depending on their particular symptoms. Fifteen minutes of sunlight will keep this condition from happening. An easy fix! Pass this info on to anyone with the symptoms I have, although there are many things lack of "D" can cause. – C


Flector® Patches Helped My Pain

I just got a prescription for Flector Patches [an NSAID] this week and WOW are they helping. I have a swollen area on my spine that hurts so much... This patch has made a noticeable difference and freed up the area for more movement, more circulation, and so in turn, faster healing, I hope…

They are anti-inflamatory patches… They are supposed to be better than orally administered anti-inflammatory drugs because they go straight to the affected area and skip the stomach and thereby avoid all those terrible things you read about NSAIDs. They have a pretty good adhesive and are about 3x5 inches. I can wear two at once, for example one on my shoulder blade and one on my lower back. I have big swollen areas there, noticeable through my clothes on my shoulder.

Using the patches for about 4 days has reduced the swelling by about 75%. The directions say to change it every 12 hours but my doc suggested they may last as long as 24 hrs, so to play around with them. They are lasting about 18 hrs. Hope… others get the same benefits I have. - V

Note: like all NSAIDs this product comes with warnings of cardiovascular, gastrointestinal, and other risks; and because it is applied to the skin users are advised to avoid exposure to direct sunlight and observe other precautions.


Misdiagnosed with FM & ME/CFS, etc. for 34.5 Years

I've had chronic Lyme for 39 years. Misdiagnosed for 34.5 years by 40 to 50 doctors with just a few of these being mentioned: mono/Epstein-Barr virus, chronic fatigue, fibromyalgia, TMJ, food allergies to gluten/wheat and casein/dairy food; extreme sensitivities to: lights, glare, & reflection; noise & sounds; and chemicals: perfume, after shave, hair spray, cigarettes & smoke on their clothing; diesel fumes, some food smells, cleaning & office supplies.

I had a Western Blot IgG and IgG blood test drawn and sent to Igenex Diagnostic Labs, Palo Alto, California. Both tests were positive. My treating primary doctor of 27 years clinically diagnosed me after that. – B (an Iowa activist)

PS: Last year, Andy A. Wilson released his 4 years-in-the-making DVD, “Under Our Skin” – a 104-minute Lyme documentary. You can view a brief trailer of the film and check out their dates of screenings being done across the USA, and the 'big screen' dates in NYC and California, beginning in June.


Thanks for the Easy-to-Understand Immune System Explanation

Re: "Your Immune System and How it Works," by William Collinge, PhD, MPH

Yesterday, after giving 30 vials of blood for testing, my results came back… my immune system is shot! This was a great website and article to understand the terms my doctor used, so I can advocate better for my health. - N

Note: Dr. Collinge's online Fibromyalgia Wellness Project, introduced in this issue, invites FM patients with Internet access to participate in a free wellness support program. The NIH-funded Project will recruit 200 individuals in June and another 2,000 this fall.


FM and ME/CFS are Different Illnesses - Living Proof

Re: “ME/CFS and FM: The Same, Related, or Different,” by Karen Lee Richards.

My personal experience is positive proof to me that these are two distinct illnesses, albeit with overlapping symptoms and often found together. I was diagnosed with FM 20 years ago. Amazingly (miraculously) I found a Dr. back then who actually knew about FM and how to properly diagnose it - via tender point evaluation and history. She told me I could not continue my very physically strenuous job, and that there was nothing more to help me with. I had had FM about a year before diagnosis.

Then 2 years later, while working long hours as a florist on Valentine’s Day, I came down with what I thought was a flu bug. Entirely NEW set of symptoms - nausea, vomiting, fever, sore throat, debilitating fatigue - worse than usual FM, and cognitive impairment greatly exacerbated. Pain also greatly increased.

My "flu" never went away. It was clear to me that I had had two very distinct separate onsets. With FM I had chronic widespread pain, sleep disturbance, and some cognitive dysfunction; tiredness but still working full time, but NO OTHER flu like symptoms. The ME/CFS "flu" hit me suddenly and severely 3 years later. No doubt in my mind about distinct illnesses. - S


Lyrica® and Multiple Sclerosis Symptoms

I just wanted to give you all a "heads up." I have been taking [the prescription drug] Lyrica for neuropathic pain and it was helping. However, I developed serious symptoms of MS - loss of balance, bladder problems, vision problems, numbness and tingling as well as other neurologic problems. Inability to stand with eyes closed, walk heel to toe, and difficulty walking, forget stairs!

I quit taking Lyrica about 7 days ago and the symptoms seem to be clearing up. When I looked a bit harder into the side effects of Lyrica, all of these problems were noted in the studies. I thought having fibromyalgia was bad (which it is) but I have to say, I would rather have it than MS! - A


Specialty Clinic’s Tests for Infections Saved My Life

I have been diagnosed with both ME/CFS and FM like many people. I had a life threatening case of CFS and went into chronic septic shock. Turned out that I had 6 infections – Epstein-Barr, CMV (cytomegalovirus), Chlamydia pneumoniae, Mycoplasa, HHV-6, and Candida - that no one ever found until I went to a fatigue center in LA [the Holtorf medical Group in Torrance, CA ]. They have a protocol to look for infections and treat them…

The ER doctors [had] said I had anxiety and looked no further when my life was hanging by a thread… The specialty clinics are a must. They know what to test for and how to treat the results. Look for one with a treatment protocol. It saved my life. - C


Lil’ Housework Tricks

Over the years I’ve picked up lil’ tricks like these that really help.

• Give everyone their own cup, just rinse it out and use it again next time. At the end of the day you don’t have lots of glasses and mugs.

• I have cloths lining the shelves in the fridge, that way it rarely needs cleaning, just change the cloth. I use white facecloths.

• I have mats that I put on the top of the fridge, entertainment centre, dressers and any other surfaces to save dusting.

• Before I get out of bed in the morning I pull all the blankets up so that it’s already made when I am up.

• Before I get out of the bath I wash the tub. I keep a terry towel robe right there for times that I am too tired to dry myself. I use lots of bubble bath so just soak clean.

• I have an extra tension shower rod installed just behind my other shower curtain rod. It holds all the towels or anything that needs drying, hidden behind the closed shower curtain.

• Perhaps a laundry basket stored in the tub would work for the kids’ dirty clothes? My aunt had a TINY bathroom; she had to use the bathtub for storage, and it always looked tidy and neat. - G


Try Kitty Prozac

I always tell people when you've had the worst day ever, and you come home and kitty climbs up in your lap, rubs his face against yours, and purrrrrrrs, that's Kitty Prozac. I try to take a dose of that every day! – C


Good Lawyers List?

Q: Is there a good lawyer list somewhere? I thought I’d seen one but can’t find it now. – K

A: One ‘good lawyers list’ is offered by the Disinissues website. They list info on US lawyers known to deal with ME/CFS and/or FM contributed by site users - but they only have listings in 22 states so far. For other states, they recommend “you can always call Trial Lawyers of America at 1-800-424-2725, or Trial Lawyers for Public Justice at 1-202-797-8000 and ask for a lawyer who deals with CFIDS and or FM in your area.”

In Canada there is the National ME/FM Action Network, which maintains a Legal Roster of lawyers familiar with ME/CFS and FM. Contact Lydia at 613-829-6667 or e-mail Other info is offered via Canada’s Legal Line®

And maybe best, post your question on one of ProHealth’s Community Message Boards, indicating where you live, and you will likely receive helpful info or suggestions from other posters who live in your area.


Levaquin® and Fibro

I was recently prescribed a 10 day course of Levaquin [a fluoroquinolone type antimicrobial] and could not believe how it made me feel. Within 5 or 6 days of starting treatment I could hardly get in and out of a car or my bed without help. My son said it looked like I was aging from 58 to 88 in a matter of days. I had excruciating hip pain, could not grip anything, was completely exhausted and needed to sleep all the time.

I work part time in a family care practice. I mentioned how bad a flare I was having to the chief practitioner. She asked what I had been prescribed for a sinus infection I had been battling. When I told her Levaquin, she told me to get off of it immediately. It apparently blocks all of a certain liver receptor, making all of my other medication unable to be metabolized. This in effect meant I was having a fibro flare and none of my medications could help me fight it. She told me to tell my doctor that I should never be prescribed any quinolone medication... a real shame, because it cleared up the sinus infection like no other antibiotic had ever done. - H

Note: It is particularly important for individuals taking potent and/or multiple drugs to understand potential effects. The FDA’s Index to Drug-Specific Information lists drugs alphabetically with red stars for those with active FDA safety alerts. You can search on it at

This information has not been reviewed by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any condition, illness, 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 collaboration with your professional healthcare team.

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