April 16, 2007
Thank You, Dr. Holtorf
I am overjoyed to see the article by Dr. Kent Holtorf.* He is a fantastic doctor and is responsible for diagnosing many of my medical problems. Dr. Holtorf helped me to be on my way to recovery from Fibromyalgia, Chronic Fatigue Immune Dysfunction, endocrine dysfunction, coagulation defect, and chronic Lyme disease. I spent five years bouncing around from doctor to doctor who only treated my symptoms with pain medication, antidepressants, and sleep medication. Dr. Holtorf found out the cause of my problems to be underlying chronic Lyme disease. I am currently being treated with the help of a Lyme disease specialist. I see the pain and brain dysfunction disappearing. Thank you so much, Dr. Holtorf! – Michelle
* See “Kent Holtorf, MD, on Treating Chronic Fatigue Syndrome & Fibromyalgia - An Update.”
________________________________ You Bring Me Hope and Friends
Having FM, ME/CFS, arthritis and degenerative disc disease, I am much in need of support from those who understand. The people on this site have become my friends. I look forward to reading about their daily lives - the pain and joy. You are always here as a constant in our lives to bring hope and help. Thank you for that. Without hope, our future would indeed be bleak. Please keep helping us inform the world of our pain and suffering and to find a cure! We want this to end and our families to be safe. – Mary
________________________________ Opposed to Special College Accommodations
I've been reading about the “Symposium on Making College an Option for Chronically Ill Students” , [May 23, 2007 in Chicago] and to be honest, I'm not sure having a place like that is a real great idea. It gives the impression that college will be horrible to you - unless you go to this special college at which they're used to dealing with sick students…
And who's to say that chronically ill students can't go to a normal college? I, for one, have been sick with both Fibromyalgia and Chronic Fatigue Syndrome for a little over a year. I got sick with it at 15 and I'm 17 now. I've been going to high school; given, I have some accommodations, like for attendance, but I'm doing great…It's a struggle, but I've heard that college is easier, because it's more flexible. I'm on a full day schedule. I'm not there every day; in fact, I'm out at least one out of three days in the semester, but I'm still doing it. The point is, I think it's wrong to automatically label the young adults who suffer with this illness as people who can't live up to society, because we can. It's definitely not easy, but if it was, it wouldn't be life.
This new college gives the impression that if you go there, everything will be okay; you won't struggle anymore. But we will because we're still sick nearly every day. Sure, it's enticing to think of a place that wouldn't reprimand you for being out, or for not being able to keep up the usual pace if you're in a flare, but college is supposed to get you ready for the real world. And if we go to that college and then get sent into the real world, we'd all fail. The real world doesn't slow down; it doesn't wait for you to get yourself back together. If you fall behind, you won't catch up. And getting into the habit of letting yourself fall behind and thinking it's okay won't get anyone ready for a career. - Anon
Note: You are indeed fortunate that you are able to go to school on a regular schedule. And you are to be admired for your determination and good work ethic. It’s important, however, to understand that the degree of disability from illnesses like FM and CFS can vary significantly. Some people are only mildly affected and are able to cope by making a number of adjustments to their lifestyle, while others are so severely affected that they are virtually bedridden. DePaul University’s program is designed for those whose level of disability is much greater than yours, for whom college would be impossible without significant accommodations.
________________________________ Benefits From Specific Chiropractic
As a sufferer of lupus and Fibromyalgia for many years, I do appreciate all that you are doing. After reading the article today on disrespectful healthcare and FM sufferers [http://www.immunesupport.com/library/showarticle.cfm/id/7878 ], I felt the need to write. The article is right on, and I do hope that many will take it to heart. It mentions taking responsibility for your healthcare and working with a provider who treats you respectfully and has your best interests at heart.
It is with that in mind that I feel I must mention the treatment that I have found helpful for me and my daughter, who also has suffered from FM. Now I am not sure how you all feel about chiropractic care, but as someone who has greatly benefited and whose health has improved considerably due to a specific method, I feel the need to speak. We both visit a chiropractor who does not twist crunch or jerk our bodies, but uses a gentle manipulation of the C1 and C2 vertebra. It is a specific method of ‘upper cervical’ chiropractic care [called 'Specific Chiropractic']…My doctor has helped many people back to better health. My family and I are several of the many. – Diane
________________________________ Nutrients Beneficial for Me
Last year my left arm was so sore, my range of movement was drastically reduced. I had to figure out how to put on my clothes, etc. Now I am taking lots of antioxidants, grape seed extract, and magnesium malate, and my pain is gone, except for some residual range of movement problems. And it hasn't popped up somewhere else like it used to. I can pick up my 30 lb grandson and lift him shoulder high to put him on their slide! – Paula
________________________________ Tips On Helpful Things I Have Tried
I want to first of all thank you for being there, for giving out information and for, well, believing that FM/CFS is REAL.
After finally being diagnosed with FM (it only took 40 years) I have been researching and trying different things. I became a Reiki master years ago to help people with chronic pain and illness and teach them to relax. I also became a hypnotherapist, studied basic acupressure and massage, and got my yoga teacher diploma. I didn't realize how much all of these things had actually helped me as well. I stopped doing all of those things and noticed the difference very quickly…
So I wanted to write with few suggestions of things I have tried and have had success with:
1. I purchased a sound machine. It plays different sounds and can be used continuously throughout the night, or has time increments. This is a fabulous product and I highly recommend it for sleep inducement! There are several options (even progressive relaxation audio), so one can experiment and discover the best option.
2. We have purchased a memory foam pad for our bed, it works wonders on the soreness and stiffness. I have found it to be a bit warm but I am told that one can get used to it…
3. Exercise can be difficult to start, but just do some gentle stretches and a leisurely walk - even 10 minutes is a good start. I have a walking buddy which really helps because it is easy to be alone and say, “Oh I'll walk tomorrow!” Your walking buddy can be a real motivator. And I can say I am the worst procrastinator. If I can do it you can, too!
4. Have someone give you a nice backrub. It doesn't need to be a fancy massage, just gentle strokes. I use some nice warm olive or grapeseed oil. Put a tablespoon or two on a heat-safe plate and you can warm it by placing it carefully on your toaster and pushing the lever down for a minute or so. Check it to make sure it's not too warm before using! – Nancy
________________________________ Walkman Reduces Sensory Overload
I have trouble focusing and concentrating when shopping in stores, including grocery stores, where there are a lot of people and where music of the "teenage" variety (non-melodic) is being played. My brain gets short-circuited from the plethora of stimuli. I get confused, can't think, get panicky, and frequently have to leave without completing my shopping.
I've found that if I take my own Walkman and play a soothing, melodic tape at a volume that shuts out the other music, I'm able to be "in my own world" and focus on what I'm doing. I don't get "thrown out of my space" by the presence of other people nor by the store's distracting music. I may look a little strange with my headphones on while wandering around a store, but my success in accomplishing the shopping I need to do to take care of myself is well worth it. – Esther
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Note: This information has not been evaluated by the FDA. It is for general information purposes only and is not intended to be construed as medical advice, or to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you never make a change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.
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