I always think that we really don’t need all these supplement as long as:
1) Having healthy eating habits
2) Having variety of healthy foods
3) Eating more nuts and cutting down animal fats.
4) More exercises.

Cheers!

El Perro, I think perhaps you’re looking for something that butyoudontlooksick.com was never intended to be. To me the primary purpose of this online community remains today what it always was and is clear in it’s name: a website to provide those struggling with chronic invisible illness with a place to go and socialise where others will not judge them, where the fact that others cannot see evidence of what is making them sick doesn’t lead to them being doubted or treated unkindly.

Invisible illnesses are not solely those which are physically identifiable. The whole point is that being invisible doesn’t make an illness not real – or not genuine. Mental illnesses, such as bipolar disorder, are very real, but invisible; they can’t be tested for, but are diagnosed by very specific criterion. To have a somatoform disorder is to have an invisible illness and therefore I personally can’t see why it is wrong for bydls.com to cater for people with mental health problems. As it happens though, to my knowledge, none of the illnesses you name are classed as somatoform disorders.

I can’t speak for any other illness than ME as I have no experience of them, but ME is a neurological disease which can actually be tested for – there is no single definitive test (which I believe is the case for many chronic illnesses including a couple of the ones you name as “genuine”), but a combination of tests can confirm a diagnosis very clearly. However these tests are generally expensive and for many the technology required isn’t widely available; doctors therefore tend to use clinical criteria to make the diagnosis. If the diagnosis is made in the correct manner then it is not merely a diagnosis of exclusion (though, as with the diagnostic process for all chronic illnesses, other conditions will routinely be checked for – including somatoform disorder – before confirmation of diagnosis is given). Over 5000 high quality research papers have shown consistent multi system abnormalities in ME patients, some of which have similarities with MS, AIDS, Lupus and Polio. (There is good information about testing for ME available from the Nightingale (?)Centre in Canada and the Hummingbirds Foundation for ME in Australia if you would like to read more on this.)

ME is a very serious disease which for about a quarter of patients is severely disabling and in a minority of patients is fatal.

You will have guessed that I myself have the disease – I have nearly died on more than one occasion (once of heart failure, twice of renal failure, once of pneumonia… organ failure and infectious complications are, I think I’m right to say, the leading causes of natural death in ME patients) and need extensive medical intervention to live.

The horrors which ME has the potential to wreak on a person’s body are rarely spoken about. For the sake of ME sufferers on bydls.com I want to give some insight into what the reality of ME is for some of us.

A well known British journalist wrote of a patient, Lynn, with Grade 4 ME (the most extreme form) “Before meeting this remarkable mother [carer] and daughter [patient] I had seen African children suffering from starvation, met people dying of Aids, patients paralysed from the neck down, others in the last stages of terminal cancer. But I had never seen a living person as desperately ill as Lynn”.

She spoke of visiting Lynn, “In the gloom I made out a small, ethereal figure lying completely flat and motionless, her skin so pale it was almost translucent, the only sign of life her large, beautiful brown eyes… Desperately ill Lynn was hypersensitive to light and noise, she lay on a sheepskin to prevent bedsores, with her head resting on a towel. There was a tube down her nose delivering liquid food and a Hickman line pumping drugs straight into her chest. Her legs were paralysed and without feeling, she was unable to sit up without passing out and her neck was too weak to support her head. She had lost more than half the bone density in her spine and had gone through the menopause at the age of 20. She was in constant pain. She was on drugs to prevent sickness and spasms, was unable to swallow and had not spoken since August 1992, three months after she had been diagnosed with ME at the age of 14… In my 35 years as a journalist, the story of Lynn was one of the most affecting cases I had come across. I felt shocked, chastened and humbled as I talked to them and the memory of Lynn’s haunting brown eyes, set in an exquisitely beautiful face, has stayed with me ever since.”

She also spoke a little about how Lynn was kept alive in the 17 years of terrible illness before her death in 2008 “At the time I didn’t know how she could sustain life in such a state but the answer, of course, was Kay. She took such pains with Lynn, slept with an intercom, reacted to every whimper, saved her fragile life on so many occasions [Lynn had been so sick that she required life support machines at one point and her bedroom at home at times resembled an ICU]. Nine months after she fell ill, Lynn could move no part of her body except her little finger… Kay and Richard made the courageous decision to take her home… She had a carer [it actually had to be a RN] in twice a week so she could go shopping, and her former husband, Richard, and son, Steven, were involved in caring for Lynn too… But in the main the relentless, 24-hour burden of keeping Lynn alive lay with Kay.”

She relayed her time talking to Kay, “To Kay it was utter cruelty for people to imagine that Lynn would willingly choose her limbo existence. She lovingly pored over photographs of her pretty daughter enjoying the active life she led before she fell ill – receiving a trophy for ballet at the age of nine, as captain of the netball team at ten, going surfing, horseriding and windsurfing with her brother. Lynn also played the piano and clarinet and loved going to the youth club with her friends. Handling the precious images with infinite care, Kay said wistfully: ‘We didn’t realise how happy we were, until we lost it.’ That loss came with shocking suddenness in November 1991, when Lynn felt unwell after a vaccination against tuberculosis. By May, 1992, ME had been diagnosed. Lynn was bedridden, had difficulty swallowing, couldn’t recognise people and her voice had reduced to a whisper. ‘Sometimes she was in such pain, she would ask us, “What is going to happen to me?”… I didn’t know how she’d [Kay, Lynn’s mother] had the strength to bear it, year after year. She could only have kept going by clinging to a belief, however tenuous, that Lynn might one day recover. Sadly, to me it seemed a false belief”

And spoke of her communication with Lynn, “She could move her arms and had developed a sign language to communicate with her family. I asked her if she was fed up with being like this and she held up her thumb and forefinger emphatically an inch apart, meaning: ‘Just a bit!’ Lynn still had yearnings to have a baby. As I looked at her, without the strength even to lift her head from the pillow, I found such a pathetic hope heartbreaking.”

Finally she told what her own reaction had been to learning of Lynn’s death, ” I felt infinitely and bitterly sad, not so much that Lynn had died because I felt that at last she was released from what was a terrible living death, but because fate had inflicted such cruelty during her life. [I] salute the courage, strength and love which had kept… [her going] through such appalling agony.”

This site has gone from being a valuable support forum for people with genuine invisible illnesses (like MS, cancer, PTC, lupus etc. not somatization disorders like so-called FMS, CFS, ME, ‘Chronic’ Lyme, Morgellons and so on) into a hive of quackery and product placement.

The last few months of front page articles have been non-stop “Buy X Brand Vitamins/cookies/breaded eggplant/crackers” or “How to cope with tie-tie disease” crap.

Does anyone out there know of any decent, real support groups that only allow DIAGNOSED illnesses (not diagnoses of exclusion) as topics of discussion?

I agree with Sunnie. I have Lupus and MS and I take “high” doses of Vit D as well. Like you said, it doesn’t make me feel any better only helps with the symptoms. Thanks for sharing. Good article Christine. 🙂

I have fibromyalgia (diagnosed 15 yrs) and, as we all have, tried many different routes, but had resisted the nutritional one as I already had so many restrictions in my life, and felt I ate very healthy (organic, no red meat, etc.)

About a year ago I started dating a naturopathic doctor (lucky me!) and he tested me for any food sensitivities or allergies I had. I was sensitive to a lot, which was causing inflammation in my body. He then recommended supplements and herbs to take to support my particular bodies issues, and foods to not eat or avoid. (I am 50 and am also in perim-menopause)

I dropped 40 lbs! Not because I wasn’t eating, I just wasn’t eating things my body reacted to . And because I have IBS, a lot of the nutrients in foods don’t get absorbed.

I highly recommend seeing a Naturopathic Dr. or Clinical Nutritionist!

Because of the amount of oills I take, perscription and OTC supplements swallowing them could sometimes be difficult. My remedy is first separate floaters from sinkers. All pills do one or the other. Drink a little water first so nothing sticks. Tip head back for sinkers & forward for floaters.

My Vitamin D level was down to 8 (whatever the unit of measurement is…). I started taking Vitamin D3 drops which I read, after quite a bit of research, are better for whatever reason. My primary care doctor said I could take up to 150,000 mg per WEEK without taxing my liver, but my rheumatologist said stick to 50,000 per week. So I take about 40,000-50,000 per week, have been doing that for 6 months now and just got my blood work done again. Vitamin D is up to 30 now, aiming for 50 in the next 6 months. I do feel more energy, for sure.

Just wanted to say that both my primary care doctor and my rheumatologist told me that if I don’t feel a difference within 3 months of taking a specific supplement, that I shouldn’t waste my money on it. So, when I add something new to my morning pill ritual, I only add one thing at a time. Have NOT found any difference after starting Alpha Lipoic Acid and Chromium, so after the bottles are empty, I won’t be buying those again…. I also take a multi, a calcium citrate, and fish oil. Will certainly be happy to get rid of Alpha Lipoic/Chromium to cut back on the number of pills! Yuck!!

I was recently diagnosed (in June) with low Vit. D. levels and the doctor told me to take 1,000 IU. [I’d previously been taking 400 IU as a supplement] At the 1,000 IU level of Vit. D. supplementation, I experience some side effects that make me think I’m getting too much (despite being low) –it’s kinda ironic. Since I have fibromyalgia I am sensitive to a lot of supplements, vitamins, meds, etc. It’s hard to know what to do sometimes.

Christine…

I’m starting to listen too. Vitamin D has helped a lot. Not significant, but a difference…for the good. I’m reading more on the supplmentental/vitamin route more. I know I have iron issues with my D3, add more too it. Now, I’m on arava, I need to increase my potassium…so check that one off too. It’s important for daily wellness care.

Gentle hugs sweetie!!