Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.
I take a lot of what you take and I too take D-ribose and it does help.
I am posting this because when I first got the symptoms of fibro forty years ago, I had no where to turn. No one even knew what it was and doctors had no clue. Sadly, not much has changed in all these years. No one knows what fibro "really" is and know one know "really" how to treat it. Sure there are drugs that doctors are more than happy to prescribe, but are they what we really need. I am sorry to say that I don't think so. I have been on Elavil, Ultram, Fluoxetine, Ambien, Trazodone, Kadian, Cytome, Ultracet, MS Cotin ER, MS Cotin IR, and Topamax.The last drug I was on was Cymbalta. None of these helped. I ended up almost bedridden and in a wheelchair. Cymbalta gave me painful, progressive nerve and muscle damage and pulmonary hypertension. That is when the blood vessels in your lungs shut down. It is incurable and fatal. When I was diagnosed with PH, my cardiologist told me that if I did not get off all meds for fibro that I would be dead within two years. My primary doctor told me the same thing. It still took me two months to comply. I was scared that I could not handle the pain. That was when I started to do some major research. I discovered that most of us have very low vitamin D levels. So I saw my doctor and was tested. Mine was 18. I was put on 50,000IUs a day for three months. I had subsequent blood tests until I found the dose that I needed to sustain my level at 80. I started to feel better. I did more research and found that we also need magnesium. I added that. I started other supplements and in time, I found that I was pain free 95% of the time. I could never say that when I was on meds. My friends noticed the difference. I was no longer that drugged out zombie that I had been for years. My husband no longer had to be a caregiver for me. He no longer had to cook and do laundry or drive me everywhere I needed to go. I got my life back. My withdrawal from Cymbalta was horrendous and my daughter found a site on facebook that was a godsend for me. After 18 months, I felt like a normal human being again. My memory is good. I want to go places and do things. Since I have gotten off drugs I have taken two 6000 mile trips to visit my family. I met my granddaughter for the first time when she was five. Yes, I still have fibro. I still have an occasional bad day, but for the most part I feel very well. I also have severe osteoarthritis and have been told three times that I need knee replacement, but because I cannot take pain meds or undergo surgery I have found alternatives. I also have degenerative disc disease in my neck and lower back. I have recently developed panic attacks due to my family living in a country undergoing a revolution. I cannot take meds for this so my cardiologist told me to walk every day for 45 minutes. I have started to do this and it helps. This isn't easy with bad knees, but I have also found out that this has helped my arthritis. So yes, I am very sympathetic and have empathy for all of you with fibro, for I am one of you. I just wish I had the information that I now have. I would have made very different choices. I only post my story, so that you can do your own research and make choices that are beneficial to you. I did not have access to all this information when I started out. I have learned that doctors don't know everything. We have choices and if something is not working, then maybe it is time to change something. You don't deserve to suffer. I wish you all well. Take care.
Thanks for your story Hugs.
Which facebook page were you saying was a godsend ??
I have had CFS/FMS for the last year and a half. Like most people with CFS and FMS, I have other complicating health problems (cervical dystonia and tourette's syndrome).
I have made many adjustments that are making me feel better, but I highly recommend subcutaneous vitamin B 12 injections. I have been administering them to myself (prescription) 3 times a week for the past month. The increase in my energy and stamina has been remarkable.
Additionally, when I was first diagnosed, my rheumotologist noticed that I was very vitamin D deficient. Addressing the deficiency was also alleviated a lot of my bone pain.
I hope that helps!
You're the first person I've found so far who reported improvement from Valtrex.
At age 54, in August 2005 I got Mono. Knocked me flat. By the following Feb, 2006 I was still fighting with fatigue in a very big way. I read an article on the use of Valtrex for Mono and my doctor agreed we could try it, in 3,000 mg/day doses. Immediately, I was full of energy and remained that way for the 10 day trial we had agreed on. Trial over, I was flat on my back again.
We tried lower dosages, but nothing under 3,000 mg/day worked. Eventually, I had to go to 4,000 mg/day (or 4 gms if you will). That kept me going till September 2006. Then I woke up one morning in early Sept and I was right back to square one again. The drug had stopped working for me and never did work again.
Was aweseome while it lasted though and it was at that point that the diagnosis became CFS/Mono.
Hi... much hope & wisdom here; I hope to be where you are in a couple decades. =) Be well!
I went 25 years symptomatic, after a known tick bite that I didn't know mattered, so I forgot about it. My neck and shoulders went sore 10 weeks later, and I had full-blown fibro symptoms a year and a half later. No one knew what fibro was. 25 years later, I was on a health chat board, begging for someone to clue me in as to what was happening, as I had now become profoundly chemical sensitive, and I had been born healthy. A nurse caught my symptoms, asked if I'd ever been bitten by a tick, I had, and she told me I had Lyme disease, a bacterial infection transmitted to me by that tick. It can also be transferred by 23 other insects and by human fluid and tissues too, including congenitally, via breastfeeding, blood transfusions, organ transplants, and sometimes via partnering, but not always. I tested positive through the IGeneX lab (www.IGeneX.com), went on clindamycin oral antibiotics, 150mg every 6 hours like I'd done for a finger infection, and in a week's time, my fibro symptoms went to NOTHING! I herxed after a month, meaning the antibiotics were successfully killing off the bacteria, and I dropped back to 2x/day. We're all different when it comes to what will work for treatment. Treatment for Lyme disease falls in three categories: kill/deter the organisms, detox, and fortify the body. I've done a lot in all those three categories by now, and I still have more to do. It's very important to go to a Lyme-treating doctor, since they are aware of the complexities of this illness, as well as any of the co-infections we could have, like babesia, bartonella, and ehrlichia. I always suggest that people google the symptoms of all of these infections, and if you think you're symptomatic, then go see a Lyme-treating specialist. You can get referrals for any area at www.lymenet.org, click on Flash Discussion and Seeking A Doctor. You can also study there what people are saying. You can use the Search function at the top of the page to type in any word, like say, fibromyalgia, and then read the archived posts for what people have to say.
Hi - my fibro of 25 years turned out to be Lyme disease, a bacterial infection that inflames nerves and tissues. I got mine from a known tick bite. 10 weeks later my neck and shoulders went sore, and 18 months later, I had full-blown fibro symptoms. I am now treating symptoms successfully - first, with antibiotics - I took oral clindamycin, 150mg, 4x/day, and in a week's time, my fibro pain went to zero!! After a month, I backed it down to 2xd/day, and it worked for 5 years. Now I take do teasel root tincture drops and turmeric capsules to keep joint and tissue pain down. Re how we get it - ticks are in vegetation and on wood and animals - they are really tiny and lots of people never see the tick or ticks that bit them. Second, the Lyme bacteria can be in 23 insects, as well as in human fluids and tissues, including transmitted congenitally, via breastfeeding, blood transfusions, organ transplants, and sometimes via partners, but not always. Why we're not being told about it - because insurance companies don't want to pay for all the treatment. My argument - if people could know in the first place what Lyme symptoms are, as well as symptoms for co-infections like babesia, bartonella and ehrlichia - yes, google for symptoms for all of those to see if you match any - then, it would be a lot cheaper to stop the infections in the first place! Let alone allow everyone to have their lives!! You can get more info and Lyme doctor referrals at www.lymenet.org - click on Flash Discussion, and any of the categories, including Seeking A Doctor if you want referrals for your area. Treatment happens in three areas: kill/deter the organisms, detox, and fortify the body, plus clean up the damage as much as possible that's been done to us. It's complicated, and that's why we're all on lymenet, discussing with each other what we try.
I agree vit D and B12 are prety beneficial especially with treatment related to fibro and other chronic illnesses. Also ,I think healthy eating is something that every person must adapt irrespective of whether they are suffering from illness or not. There are hell lot of options to explore and resources and articles on the internet.Chronic fatigue is a troublesome illness and one must find a good doctor and find out the root of the problem in order to take care of it. I checked a few videos. I would like to share one by a doctor regarding food and metabolims aspects with fibromyalgia
I hope this helps all who are looking for some info. Also you may explore various medical articles for more information., Wishing you all the best.
i have had fibromyalgia for many many years and then chronic fatigue for about 7 years (associated with hyper-parathyroidism and surgery for a benign parathyroid tumor). i have tried everything, with some gradual small improvements over the past 7 years. but the MOST significant thing that has utterly given me MY LIFE BACK is the lightning process by phil parker. i did the training in september and it absolutely worked for me. i cant encourage you enough to go online to the website, get the book, learn about it, do it. there is a practitioner in california, the rest are outside the u.s. while i still have some fm symptoms my debilitating fatigue is GONE. i continue to use the process to address other mild-moderate pain symptoms but i have completely recovered my energy and cognitive functioning. it is nothing short of extraordinary. it is NOT magic. it is a training process that helps change the way the brain works. it requires work and trust in yourself and the process. i was desperate enough to put aside my skepticism and my medical training (i am an md, i had to close my psychiatry practice due to disability) to just dive in. (i learned about it when i went online to look into the amygdala retraining process again. i had done this several years ago with some improvement.) i watched all the testimonials, read everything online, got the book, worked on the questions, worked with the practitioner to prepare for the training, then did the training. it is amazing. the training is only 3 days once you are ready to do it. PLEASE look into this. i only wish i had known about it sooner.
I have felt the best I have felt in 7 years, since I finally quit work and went on disability. (I was diagnosed with CFS in 1999). The problem (?) is, I don't know what I have done recently that is working. There have been 4 major changes in my life since last fall.
1. I started taking 40 mg. of Omeprazole (generic Prilosec OTD) last fall for my sort of severe acid reflux. No more vomiting, no more acid reflux. Problem fixed!
2. I did not get a flu shot this year because of my fear that it would wreak havoc with my immune system. Naturally, then, I got the flu! I came down with the flu on December 16th and it didn't totally go away until January 13th. Anyway, since I got over the flu, I have felt much better.
3. I started doing jigsaw puzzles after I got over the flu, the big ones 500 to 100 pieces.
4. I quit eating Nutty Bars in December. I was so addicted to them, I finally told my husband to either quit buying them or to hide them where I couldn't find them. He quit buying them, and I switched to apples for my daily snack. I generally have 2-3 apples every day.
The changes I have felt:
1. My day is longer. I used to get up around 9 a.m. and was in bed by 4 p.m. Anyway, that was my goal, and often I was in bed earlier. Now, it's not uncommon for me to be up past 6 p.m.!
2. I feel more "normal", that is, I have more energy and less pain.
3. I actually get bored sitting around the house all day! When I am bored, it means I actually have energy I haven't used yet. Weird to feel this way after all this time.
Does anybody have any thoughts about this?
I was hospitalised last year with a sever virus, could not walk and had seizures. I now have been diagnoses with post vieral syndrome or chronic fatigue.
What has helped me enormously is ozone and filteration therapy. I live in Bali so I am not sure you have it elsewhere but I guess you do. In a session 4 litres of blood is taken via a tube from one arm and passes through a filtration tank similar to dialisis. It is pumped with ozone and then returned to your body through a tube in the other arm. It takes one house and is relatively painless. Each time I did it I felt fantastic for a couple to a few weeks after.The problem is the cost at $300 per treatment. I also did ozone only treatment without the filter which is half the cost but the results were not as marked.
I hear that alot of people with CFS are helped with this treatment but whether it can cure or not I am not sure.
I have a few months of being able to go out when I did it and could even exercise which without I cannot do.
Best of luck Saras
Things have helped me to this day:
For sleep: 5-HTP, L-Ornithine, Phosphatidylserine
For raising adrenal hormones (gives energy): Licorice root, Isocort.
To feeling less toxic and ill: Methyl Folate, B12 skin patches, Magnesium Flakes in baths
To reduce inflammation (makes me feel less ill/more clear headed): Bromelain
Gut health: digestive enzymes, L-glutamine
General Energy: full-spectrum amino acid supplement
Many of these at too high a dose affect my sleep and/or energy negatively. I have to introduce a small dose then see what happens as I increase.
For example 1/3 the normal dose of Bromelain is good for me. However the normal dose caused my energy to drop.
I had CFS since 1996, very slow improvement.
Then a breakthrough with the protocol of Dr. Myhill. Free book here:
In the last two years and this year again I had relapses in February/March. They scared me because I had been doing so well and I was afraid that the years of suffering would come back. I got out of them with the same procedure, but it took weeks.
Just now I have found that the following product by Dr. Shallenberger worked literally micracles for me. I have basically recovered from my relapse within 2 days!!!
I have been taking two times 6 tablets daily for the last two days of "Advanced Adrenal Factor". And I feel well! I was in terrible shape last Sunday and now I am fine. Quite incredible. Highly recommended to give it a try. (And no, I am not affilliated).
I have also been adhering to the things most people recommend in the past years:
- Good multivitamin
- loads of B12
- Vitamin C
- Special antioxidants (Res4 by Dr. Al Sears works great for me)
- healthy diet
- strength and HIIT training (within the limits I can tolerate, but pushing the envelope)
- complete abstinence from any chemical drugs, psycho pills etc.
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