Chronic Fatigue and Fibromyalgia

[Evil Genius]

Yes, depression is a very important symptom that belongs to some immune generated diseases and should be recognized as that by a skilled Rheumatologist. You know, most doctors simply arent skilled enough to recognize some certain immune generated dieseases and the patterns they come with. For example, if a patient has kidney problems in combination with depressions, it should make all alarm bells go crazy in a doctors head. I know its not easy for them so i will try not to rant about GP´s again but in most cases, they rule out diseases or put out unsure diagnoses way too early. Some of the disease arent even understood yet so how could they diagnose something that they dont even know the cause forf? I spent the past 10-15 years going from specialist to specialist till i finally got it diagnosed just two months ago. In this time, it almost killed me and ruined most of my live. But there are treatments and at the moment, im feeling a lot better so its really important for you to never give up no matter how bad the situation is. In just a few months, your life can completely turn around and dramatically change for the better. You know, Life isnt fair and sometimes, this also works out to your benefit. You know, standard time an auto-immune patient takes till he gets his diagnose is between 8-10 years. You can tremendeously shorten than period by going to a specialist right away. And if your not conviced with what he said, go see a second one. They make mistakes too. bye Eg

[amanito]

Today I tried an old bag of kratom I had and I must say it works better than the other I was using. I was using one from bikhuk, this old one comes from psychoactiveherbs. I think it's bali strain, 5 grams and pain is a bit reduced.

Who has experience with the following herbs when it comes to muscle pain?

- salvia Miltiorrhiza

- boswellia serrata

I'd like to know which herbs can be used during the day without fucking you up to much (otherwhise I'd just smoke ganja) and which ones are better for the night because they are strong. (like kava)

I'm looking for firsthand experiences, straightforward info: effect, dosage, etc ...

I have ordered the following extracts from MJB, btw:

- linden leaf/flower

- yellow horned poppy

- Scutellaria Baicalensis

- wood betony

And as said I'd like to buy try salvia miltiorrhiza and boswellia serrata, but also maybe corydalis and mulungu. I have some pedicularis extract here to, but I don't expect miracles ..

Best would be extracts which I can put in capsules, no smoking.

I know they're quite some topics on these kind of herbs, but it'd be nice to stick to this specific medical condition.

Edited January 4, 2012 by amanito

[Palma]

Hello

I would like to help with my experience. I also had to go abroad and in a dry warm place for living better. At the moment, I just suffer from tendons, like a tennis elbow, and this is great: it means I was able to do more than before!

Well, I have never been very much affected, but I reacted very early as I did not want to get worse.

I will keep for last but not least what was the best, because here is the origins of the fatigue that cannot be explained...

But anyway, I can still notice how important is the diet, and it took me a while to change it, though I have always eaten a pretty natural diet. First, eliminate gluten, dairies and then sugar. if you feel addicted to sugar, then know you are not, may be your worms are begging it! 80% of the population is affected. I used Dr Clark treatment, and I could feel the result: no more taste for sweet things, and I could no more finish my ordinary plate of food.

I have always been into herbs, but now I turn to a mainly raw diet, and especially nettles. The change was incredible in 1 week. I also use a lot of sprouts, and I love the gluten-free buckwheat! I also grind a lot of sunflower or sesame seeds, and chia. I am not completely vegetarian, but I just do not need meat any more. I usually cook what cannot be eaten raw, as potatoes, beans or sweet potatoes called boniatos here.

(tonigh, I have eaten some, with my now usual "GREEN SAUCE"! It is in fact a full bowl of processed green leaves, mainly nettles and parsley, with garlic, olive oil, ground sunflower seeds and spices such as curry.

My conclusion is that what we can usually call a health food diet may not be so healthy. I have always been surprised each time I discovered I was not accurate enough...

I am here mainly to increase my knowledge about plants, and maybe find new ones to introduce here...

If you have one meet to reject, I would say pork, especially for people with immunity problems, just because pork is genetically to close to us! I learned if from a shaman in Peru.

Then, you can do whatever you want to recover after viral diseases, clear off injections, I also had an homeopathic treatment for Lyme disease... this will not tell you what you are more sensitive than other persons who stay strong as a rock whatever happen !

Just inquire about the ANS (autonomous nervous system), and the second branch of the parasympathetic... and you will know what blocks your nervous system at the root. I learned it all in a somatic experiencing course.

We are ALL concerned about this, but some more than others. I remember a girl who was still forced to work part time and get a nap every afternoon 5 month after a mere fall from her bike. But she was still in shock, and not only for her still painful shoulder. Her emotional reaction was typical, but sometimes you can forget about it. BUT!

When you have a strong reaction, this has to do with the orthosympathetic system, the one that boosts you to act!

And it has been discovered quite lately that what is know as a freeze response (after the failure of flight or fight) is a second type of para reaction, and it acts as a powerful hand brake while the accelerator is still at its maximum. Imagine the strength and so the energy that is used for this!

And some people do not go out of this stage as they should (for many reasons that would lengthen my post... and I am not English)

Then, a double energy is still like burning inside, forever and for nothing , and this takes all the energy from the person, who will feel tired, and week, and who will be less able to defend oneself from diseases, virus and mainly stress of the modern life. The SE technique is made to stop this loss of energy by finishing the cycle that was not finished when some shocks (physical, emotional) happened.

The girls were from Australia at this course, so I know this is not very well known. I have tested its effect, and this has nothing to do with psychotherapy. This is quick also, and acts on the nervous system, not on your story, that you do not have to tell completely. As the ANS is cleaned, this is as removing some sand in a pipe of water: you just clean a little, whatever comes, lets say the biggest parts, and then, the water will be strong enough to clean what is left. Well, same here, your system will do the rest of the job and the energy comes back. Well, it was still there, but now you can use it all. There can still be other things to do, and the diet is part of it, because your system has been tired and may be damage over time, but your body will have more strength to spend for repairing and enjoying life.

Sorry for being long, but this is my real experience and nothing of a mere theory. There are many more things, as knowing how the nervous system works now allows me to create a sense of joy and happiness that is not related to what happens to me. It is possible to generate it inward.

[Evil Genius]

Hi Palma, thanks for your input in this. I agree with some of your opinions about certain things and i always appreciate hearing stories about people who try alternative methods to treat diseases like this. However, i feel the need to add that the medical term fatigue is caused by a very wide range of diseases, like example cancer, vasculitis, sarcoidosis ms and and and. While i would agree that many people suffer from very bad worm infections, i also want to point out that they are not the cause for all immune generated diseases. In some cases, the opposite is the case. People who live on farms usually dont suffer from immune generated diseases, probably because they have worms that surpress reactions of the immune system. Nowadays, kids dont play in the dirt anymore like they did in the past. And it cant be a coincidence that just as this happens, people suddenly start getting sick from immune generated diseases. I totally agree about your view on sugar and carbohydrates and i think your experiences are worth taking a close look at. I mean, whoever has a disease like this has few to lose. While many immune generated diseases look similar, there can huge differences between what causes them so its possible that a treatment that prove to be extremely effective in your case might not be that helpful for another one. Many immune diseases are passed down from generation to generation so the answer lies in the genetical code of the people as well as the enviroment they live in and the food that they eat. We are what we eat and in times of low quality food, disease like this are on the advance. I like your post but i also feel the need to remind you that not all cases are the same and what helped in your mild case, might not be 100% true for another person who suffers from a hardcore immune disease like ms. I like homeopathic ideas and treatments but i dont think they should be presented as THE ultimate truth and answer for everything. Food is greatly important and what we eat has a large influence on our health, especially in regard to sugars. But especially in this field, its not all worms and food. Kidneys and the hormones they produce have a large influence on immune generated diseases and they play a very important part in understanding them and the problems they cause. bye Eg

Edited January 5, 2012 by Evil Genius

[amanito]

Just wanted to point out that I went to a school to study health therapy and I quit after a year because a lot of their theories are based on nothing but assumptions. Also when the word 'energy' is involved that says enough.

Don't get me started on homeopathy.

I advice everyone to read: trick or treatment (simon singh and edzard ernst). A lot of people think chosing herbal supplements is a way of combatting big evil pharmacy companies. But these 'lets call them herbal companies' are even worse by asking ridiculous prices for 'water' or herbs that just don't work. Super fruits that when they're analysed they don't contain more than an average fruit etc .. They even use the same methods like pharmaceutical companies of giving gifts to therapists for promoting.

In this book you can read about studies of 10 20 years on things like echinacea, ginko (big business) that haven't found any effect, other supplements and techniques that are even dangerous.

I remember how people with limited scientific background were just advicing things to fast and detox techniques with this that and this herb, saying these diets work and I found this to be so dangerous and most of it is not really proven, literature is mostly financed by the companies who sell.

So be cautious with these 'alternative methods' ... And I'm not close minded, otherwhise I wouldn't be on this board, growing ethno's, trip, etc. You just need to be careful with everything.

I agree on avoiding things like wheat, sugar, processed food and all that. When I use to much milk products for example, I feel bad. I also know that too much meat ain't good, but I guess am too addicted to it. I truly believe that salt, fat and sugar are drugs, very dangerous ones.

[indigo264nm]

There has been many promising studies being done testing Xyrem (sodium oxybate), which is just GHB, for fibromyalgia pain and sleep disturbances.

"OBJECTIVE: Fibromyalgia (FM) is associated with the sleep phenomenon of alpha intrusion, and with low growth hormone secretion. Sodium oxybate has been shown to increase both slow-wave sleep and growth hormone levels. This double blind, randomized, placebo controlled crossover trial was conducted to evaluate the effects of sodium oxybate on the subjective symptoms of pain, fatigue, and sleep quality and the objective polysomnographic (PSG) sleep variables of alpha intrusion, slow-wave (stage 3/4) sleep, and sleep efficiency in patients with FM. METHODS: Patients received either 6.0 g/day sodium oxybate or placebo for 1 month, with an intervening 2 week washout period. Efficacy measures included PSG evaluations, tender point index (TPI), and subjective measurements from daily diary entries. Safety measures included clinical laboratory values, vital signs, and adverse events. RESULTS: Twenty-four female patients were included in the study; 18 completed the trial. TPI was decreased from baseline by 8.5, compared with an increase of 0.4 for placebo (p = 0.0079). Six of the 7 pain/fatigue scores (overall pain, pain at rest, pain during movement, end of day fatigue, overall fatigue, and morning fatigue) were relieved by 29% to 33% with sodium oxybate, compared with 6% to 10% relief with placebo (p < 0.005). Alpha intrusion, sleep latency, and rapid-eye-movement sleep were significantly decreased, while slow-wave (stage 3/4) sleep was significantly increased, compared with placebo (p < 0.005). Two of the 5 subjective sleep related variables were significantly different from placebo: morning alertness (improved by 18% with sodium oxybate, compared with 2% for placebo; p = 0.0033) and quality of sleep (improved by 33% and 10%, respectively; p = 0.0003). CONCLUSION: Sodium oxybate effectively reduced the symptoms of pain and fatigue in patients with FM, and dramatically reduced the sleep abnormalities (alpha intrusion and decreased slow-wave sleep) associated with the nonrestorative sleep characteristic of this disorder."

http://www.jrheum.org/content/30/5/1070.short............. very first article on the list for a google scholar search.

[amanito]

I've been hooked on GHB for a long period .. also fucked up my bioritm, it's very easy to get addicted to.

What's weird is that gabapentine doesn't work .. my doctor proposed pregabalin, but's it's very expensive and I don't want to import it, bad experiences with importing medicines and customs.

[indigo264nm]

I know it's addictive and people have had problems with it but to those who can use things safely and medicinally, like pain medicine or benzos etc, I definitely reckon it's worthwhile keeping eyes on the medicinal ghb research - especially for when first clinical trials are run in Australia.

The stuff has been found to be a wonder drug for narcolepsy and it is not toxic to any organs.

Re: gabapentin... For certain types of neurological pain it has obviously proven to be effective, but the problem with treating pain in general is that everybody is different - some will respond to certain treatments whilst other people show no results, and then some respond to nothing at all.

Now pregabiln, it is expensive unless on the PBS and then it's quite cheap as you're aware. Now your best bet is to find a GP that is willing to prescribe it to you as an authority script. The best way is to get a specialist to prescribe it, and then some GP's will be nice and give you an authority prescription for a disorder you do not have. The other way is just to go to a random GP on a weekday as a walk in, say that you have a neurological based pain disorder that it is on the PBS for and say you just need a repeat - telling them the dose and how often you take it. It's not a drug of abuse so most doctors won't think twice.

In regards to importation and customs - if you get a package that's not a drug of abuse seized they send you a letter and that's pretty well it. Most of the times it'll get through fine anyway.. Some online pharms will even have a postal insurance system where if a package is seized then they will automatically send the same order again for you free of charge. In the customs letter upon it being seized they say that if you can provide them with a current prescription then they will happily send you your package.

So basically if you can get it cheap from an IOP, go by that means. It's not a big deal if it gets seized and even less of a big deal if you have a prescription.

[Torsten]

Do people with auto-immune diseaeses easily get depressed, ... I mean really depressed?

Anything that dramatically limits your quality of life [eg pain or limited mobility] is quite likely to cause depression in a large number of people. The problem with autoimmune diseases is that there is often no cure, so it is an open ended symptomatic management. If the meds work well then depression is far less likely than when they don't. Depresison (and especially stress) often make autoimmune conditions worse, so it is important to be aware of this problem and to intervene via therapy or antidepressants.

[amanito]

I wanted to get a reduction for the pills and my doctor and me had a look at the papers, it's not for people with FMS/CFT and they ask too much info, .. So well ...

I never had problems receiving rc's, herbs and benzo's in the past. But the few times I wanted to get stuff like gabapentine and all that, it always got seized, one time came with a fine. This was because it always came from India, poor packaging, had even sometimes on the outside written what was in it. After that I never bothered searching other sources ..

[indigo264nm]

Anything that dramatically limits your quality of life [eg pain or limited mobility] is quite likely to cause depression in a large number of people. The problem with autoimmune diseases is that there is often no cure, so it is an open ended symptomatic management. If the meds work well then depression is far less likely than when they don't. Depresison (and especially stress) often make autoimmune conditions worse, so it is important to be aware of this problem and to intervene via therapy or antidepressants.

 

Definitely agree with this though there are some cases where certain autoimmune disorders can actually cause psychiatric problems (psychosis included), particularly when the nerves are involved - particularly SLE and MS. I've got a lovely history of autoimmune in my family on my dads side - Father and Grandmother with MS and uncle with aplastic anemia (not autoimmune but still horrible)... My father swears by B12 injections every couple of months to help, and I skimmed through a book in my mothers naturopathy collection that talks about B12 shots regularly and high amounts of antioxidants to cause improvements in rate of degradation of specific autoimmune disorders. Spose it couldn't hurt to try with NeoB12 ampoules at $11 for 3 of em.

[Zen Peddler]

I might give that a try. I think my current relapse was caused by work stress but my energy levels are terrible as are my autoimmune issues at present.