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About Suzan Jackson
Expertise
I have had CFIDS since March 2002. My 12-year old son also has CFIDS, and my 8-year old son has begun to show symptoms as well. I have a scientific background (chemical engineering) and have read and researched extensively to try to help myself and my sons to improve our symptoms, with some success. I`ve also conferred with some of the top CFIDS doctors in the U.S. I have a lot of hard-won experience working with school systems to get appropriate support for my sons. This is a very debilitating and isolating illness, and I would be glad to help anyone else who is struggling with CFS themselves or with a family member. You can read about our experiences in learning to live with CFIDS at my blog: www.livewithcfs.blogspot.com.
Experience
Have had CFS/CFIDS since 2002.
Two young sons have CFS/CFIDS.
Organizations
CFIDS Association of America
Various listserves that provide up-to-date information on CFS research.
Publications
www.livewithcfs.blogspot.com
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You are here: Experts > Health/Fitness > Chronic Fatigue Syndrome/Fibromyalgia > Chronic Fatigue Syndrome > CFIDS and Beyond
Expert: Suzan Jackson
Date: 4/19/2008
Subject: CFIDS and Beyond
Question
I was diagnosed in 1987 with CFS this came after an extreme virus bout. I have since developed Fibro and MPS. I take almost all of the minerals and vitamins you list in your answer to the question preceding already plus mega doses of amino acids. I cannot take some of the herbs however due to HBP. I need to get my leg muscles back, it is getting critical due to the pain which is constant. Right now I am trying to find a natural beta blocker to get rid of my prescription one. It is making a big contribution to my pain problems. Naturopaths are very hard to find in this area, NC is not alternative friendly. I found the vitamins helped for a while but now I do not know if I need to up them again or try something different. I know this is complicated but I need an answer bigger than I have been finding. I shake sometimes so even trying to drive can be a challenge when it happens. Got any Ideas?
Answer
Hi, Mary -
I'm sorry to hear you're having such a rough time. I don't know how much I can help you because I only have CFS, not fibro, and I'm also not familiar with the other condition you mentioned, MPS. Pain has never been a problem for me, so I'm really not familiar with ways to treat it.
I am intrigued that you have high blood pressure. This is extremely rare in CFS. More than 90% of people with CFS develop a condition called Orthostatic Intolerance, where low blood volume causes sudden drops in blood pressure when upright or standing. So, most of us with CFS have trouble with low blood pressure. It might be worthwhile for you to see an Infectious Disease specialist (if you haven't recently) to thoroughly test for lingering infections that might be making your condition worse. In particular, make sure you've been tested for Lyme disease. Its symptoms are very similar to CFS, so it goes undiagnosed in many people with CFS, and it usually causes severe pain in one or more joints.
You also might try searching for relevant articles on your conditions and possible treatments at:
www.immunesupport.com
This website is an excellent resource for the latest information and research on both CFS and fibromyalgia. The site also has a very active message board where you could post your questions (you have to register to use the message boards, but it's free).
The only other thing I can suggest is that you might get some benefit from low-dose naltrexone (LDN), a medication that has helped me very much (more than anything else I've tried in the past 6 years). It's a relatively new use for an old medication, and it's being used for all sorts of immune system disorders, including both CFS and fibromyalgia. I understand from your question that you prefer natural approaches, but the great thing about LDN is that it's used in tiny doses, so there are almost no side effects or risks. For more on my experiences with LDN, plus resources for more information, you might want to take a look at my latest blog entry. It's all about LDN. You can read my blog at:
www.livewithcfs.blogspot.com
Sorry I couldn't answer your specific question, but I hope that these resources will be helpful to you. Good luck - I hope you get some relief soon.
Sue Jackson
www.livewithcfs.blogspot.com
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