Chronic Fatigue and Fibromyalgia

[_e_]

just curious how many people out there know about these illness's, whether they take them seriously, whether they know anyone suffering from them, or know people who may be suffering from them ?

FIBROMYALGIA

CFS

Edited August 6, 2006 by min(E)rval

[Pelinster]

Hey Man,

Yeah, a good school friend of mine contracted Glandular Fever whilst studying at University. He never really recovered from the GF and was later diagnosed with Post Viral Fatigue Syndrome. He ended up taking a year off at Uni which he spent mostly at his parents home in bed. He now works as a Radiographer and frequently has to take days of due to returning bouts of the PVFS/CFS.

Sometimes I have doubted his condition through frustration, but he believes it's real so that's good enough for me. The poor guy has had a real bad run and suffers a lot of other problems stemming from his illness. A FOAF gave him some subs once to see how he would respond and he ended up suffering Chronic Fatigue again for about a week following the dose.

I would be happy to pass on any questions you might have. This guy reads a lot of books and is a self proclaimed expert on many things. He has lived with CFS for at least 11 years now.

*EDIT* Just reading the Fibromyalgia page and realised that what my Dad has is similar. He has been diagnosed with Polymyalgia Rheumatica and gets these random bouts of pain in his legs. He can't move when it happens and spends days in bed. The worst thing is though he claims he gets absolutely no sleep. He says it's a combination of the pain and worrying about 'what will happen if he doesn't work' - that keeps him up all night. He often tells people that it's Ross River Fever, I think he does this because it is more accepted and people are more aware of it's symptoms. When he first started getting it he was diagnosed by many of his friends as having RRF. So yeah, same goes, if you want any information from him either, just let me know.

Edited August 7, 2006 by Pelinster

[Tripitaka]

Explains alot mate!

Espacially the bodyache, fatigue and sleep disorders.

Would explain why the ****pines had such a positive effect for your condition.

Interesting to note that Medications that boost your body's level of serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses.

Perhaps this would prove a better option as opposed to long term ****pine usage. I have never looked indepth into pain mitigation/management though so am none to sure of the options.

Im thinking stability, as elusive as it may sound to be a pretty potent medication.

[devance]

Fibromyalgia might be not so much a bone or joint deterioration, but a neuromuscular desease.

That inflammes the muscles or tendons to the the joints, in movement a constant popping sound is heard, similular to cracking joint fingers.

No known treament is known------------

---------------------------

muscle relaxant, who knows?

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[devance]

I got all that.

[mycomorphosis]

My uh, ex-mother-in-law (for want of a better term) suffers from chronic fatigue syndrome. Initially I wasn't really sure what to think of it, because it seemed that the slightest emotional upset could trigger a week long bout of illness, with symptoms ranging from migraine, stomach pain and fever, to depression, confusion, exhaustion and even speech difficulties. To the uninformed person (such as myself), it sometimes looked a lot like hypochondria or some other primarily psychological problem. However, I came to understand that those symptoms and many more were all included in the diagnosis of chronic fatigue syndrome. I have to admit that I don't fully understand how an emotional problem can manifest into very real physical ailments (and I understand this is not necessarily typical of CFS), but I have seen enough evidence of the effects of CFS to appreciate that it can be a serious and truly debilitating affliction. Very nasty stuff.

Can't say I have any personal experience with fibromyalgia, but from what I've just read it sounds equally horrible.

[devance]

Espacially the bodyache, fatigue and sleep disorders.

-------------------------------------

I got all that.

Profound degree but other debilitating problems as well.

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[spiders]

I know a bit about CFS. I have a cousin and a friend who have it.

My interest stems from the fact that I suffer a different condition that also seems to just arrive miraculously after a serious viral infection. The recently found out that what I have is caused by viruses somehow making the body hypermethylate a gene.

Although there is no evidence that CFS is caused by hypermethylation of certain gene promoters, recent studies in teh UK found gene changes in CFS patients - the genes that control a certain type of white cell and a mitocondrial issues as well.

Id reckon that the hardest part of CFS would be the fact that its impossible to diagnose with a test or something.

ive heard licorice tea can help.

[Prophet]

Someone i know has chronic fatigue after contracting glandular fever and barmah forest virus. Symptoms that they describe include tiredness and weakness for no explainable reason. Aching muscles and joints, headaches on a daily basis, difficulty doing physical activities. Takes days for them to recover after doing anything very physical. Difficulty sleeping and getting to sleep. Feeling physically "down" or depressed. He also found stimulants can be helpful in combatting some simptoms as well and pain killers in combination.

This illness also prompted him to get interesting in medicinal plants to help him recover and he is trying to find what medicinal plants are best in helping relieve his symptoms. Prior to his illness he wasn't all that interested in medicinal plants.

[hebrew]

fibromyalgia my mother in law has and it gives her hell sometimes but i think she tends to exagerate sometimes.

also the mrs's friend suffers from it quite badly and she is a bad morphine addict as a result of the pain, the pain is very unbearable for her and there is no cure apparently, sometimes her pain is crippling. once a doctor told me i may have it but i have never been told this again, i often suffer from pain in my body and no doc can tell me why? i have also heard that doctors sometimes dont even recognise it since it is hard to diagnose and treat in thier eyes.

[spiders]

Yeha licorice extract can be beneficial.

[_e_]

Thank you for all your responses.. Im very interested in the public awareness of these conditions, and the sociology of 'unseen illness'

As i expected many of you have come into contact with these conditions, and have reported some similiar scenarios as the ones I’ve experienced first hand.

Recent statistics suggest that the condition/illness/disease's that fall into the CFS/FMS complex are widespread throughout the world.

I read somewhere that it is estimated that %3-5 of the worlds population suffers from these illness's and, in america alone, fibromyalgia has a %1-2 negative influence on gross national productivity per annum. In my reckoning that’s one heck of a lot of people and a bucket load of cash.

So in a world where numbers and money speak so loudly, it comes as much surprise that there is such little social awareness and acknowledgment of CFS/FMS, and a definite ignorance and failing within the western medical system.

There is a sense of scepticism and suspicion regarding these illness’s within the medical system that has supported and spread some social misconceptions, and made it harder for those suffering from cfs&fms and those whom care for them both personally and professionally.

There is evidently a lack of hard scientific facts and medical proof of how to diagnose and treat them, yet there is increasing amounts of information regarding the reality of their existence. A lack of any better diagnosis or qualified opinion seems to give certain credibility to the wealth of human experience.

If such an illness is so widespread and has such a radical and rapid impact on standard of living (for both sufferers and carers), why is so little known about how to treat it, or even how to live with it?. There really is quite a large information gap on this issue.

I have done a whole bunch of research over the past 3 years, and i would like to share some of my experiences and observations so that i may inspire an increase of awareness at least within this 'community' regarding the illness's and the people suffering them. (i wont atempt to put all of what ive found into this post, it would be a very long post, but the information is slowly collating together, so if ur interested keep an eye out)

My experience

Firstly, i dont want to tell you my story because i want sympathy or public attention, nor am i making any form of excuse for my personality or previous human interactions.

In fact the idea that this is what motivates people who suffer from chronic fatigue and fibromyalgia is one of the most important aspects of the psychological and emotional aspects of the illness.

I have been treated with suspicion and disbelief by doctors, welfare workers and even some friends and family over the last 3 years (to varying degrees) regarding my illness.

I believe it is due to a lack of awareness and information, rather then due to dis-respect. For someone who is really struggling to survive, and is in constant physical pain and discomfort physically, such interactions only add a heightened sense of frustration and anger.

In the last 3 years I have been given a multitude of diagnosis from the western medical system, including EBV(glandular fever), Ross river fever, post viral fatigue, viral encephalitis, sleep apnea, auto immune dysfunction, viral organ inflammation, chronic fatigue, auto immune dysfunction, chronic and acute pancreatitis, depression, and most recently fibromyalgia.

However there has been no real information or treatment, other then: ‘we don’t know why your so sick, but here’s some prozac and painkillers, they might help’

Of course I didn’t take the prozac, and painkillers have never done anything for me other then screw my guts up.

There seems to be an attitude predominating western society and the medical system that CFS and FMS suffer's are either hypocondriacs, emotionally/mentally unstable (ill tlk about depression later), are making excuses for lazyness/lack of motivation, or even that the illness is a result of a lack of a more accurate diagnosis.

I can only speak for myself here, but i can honest to god say that if u were going to fake FMS or CFS you would have to be a pretty good actor and really stick to the routine to get any results at all.. After 3 years of suffering , it took obvious organ impairment and quite serious complications before my family and doctors would take me seriously.

COMMON SYMPTOMS

My experience with CFS and FMS seems to correlate with many others in that there are many common diagnosis surrounding the one illness. Whilst no one case is identical in its symptoms or background, there seems to be some common patterns.

-Pre existing chronic back and neck problems, or other pre existing medical conditions involving chronic pain and Cerebro Spinal Fluid problems.

-Re occurring viral illness, in particular EBV and RRF.

-Hormonal problems

imbalances involving the adrenal complex and temperature regulation.

e.g thermal sensitivity, over activity of 'stress centres' and adrenal system.

Most likely due to damage sustained during high fevers or long periods of fever and viral related illness.

-Unexplainable joint and body pain,

to the point of constant discomfort and waves of chronic pain and extreme discomfort.

i beleieve this to be linked to substance P and other Cerebro Spinal Fluid problems/imbalances

-Irritable bowel

probably linked to digestive defects surrounding viral illness and microbial imbalances, there is definately a low nutrient and vitamin uptake and also digestive enzyme imbalances, and there are many bowel and intestinal flora that are more common and more problamatic in sufferers

-migraine and constant headaches

involving sound and light sensitivity and unexplained jabbing headaches and deep set eye ache.

i believe there is strong link between the original viral protagonists and encephilatic inflammation of the brain and subsequent re-occuring migraine like symptoms

-Immuno dysfunction

this is a major factor in influencing WHO contracts these illness's in that people with an already weak immune system are exponentially shattered by constant viral illness and particularly nasty virus's.

-Major sleep dysfunction

including hyper-active alpha waves during sleep, insomnia, narcolepsy, total lack of deep sleep cycle e.t.c

- THE FOG

By far the most infuriating of the symptoms is the brain fog, whereby the constant nagging head aches and visual distortions and sleep deprevation culminate in a constant sense of confusion, lack of concentration, and lack of mental focus and stamina.

I believe that most depression suffered by CFS and FMS patients is POST ILLNESS and a result of the culminating psychological and emotional pressure.

-Chemical sensitivity

There seems to be a link between this illness and chemical sensitivity with people developing rapid sensitivity to chemicals that were normally tolerated. Also people seem to develop allergic reactions where previosu there was none.

I am now completely intolerent to lactose, gluten and most of all any kind of STIMULANT.

Im uber sensitive to stimulants to the point that i cant even drink yerba mate or strong licorice root tea without adverse effects.

TREATMENTS

The treatments seem to be few and far between and there is no known cure, although people often report miraculous recoveries.

From my experience there are a few key lifestyle choices that can help people survive on a day to day basis, and over a long term may lessen the effects of the illness and add to the possibility of recovery.

Diet-

Removal of gluten and lactose and heavy and hard to digest foods (i.e meat, fatty food and deep fried and processed foods).

This seems to help with the digestive problems, furthermore a 'nourishing' diet seems to help with the bodies inability to properly transfer nutrients and vitamins...

There is also much to be said about an 'alkaline diet' and many people are reporting some success in this way.

Exercise-

Exercise is incredibally hard when ur in so much pain and have such high fatigue and pain responses to even the lightest physical exertion. Thus weightless exercise and low impact exercise seems to be the best at fighting muscle wasting/atrophy and pain.

I have found swimming, and various hydro therapy techniques to be exceedingly beneficial. Also Yoga, stretching and breathing exercises such as pranayama, tai chi and meditation seems to be excellant. Although all require a certain focus that is beyond 'comfort and relaxation' that seems to be impeded by the BRAIN FOG.

Supplements/Herbs-

Ive done ltos of experimentation with different herbs and supplements, with varying results and success.

Most of the experimentation is ongoing and involves subtle changes that i will not be able to gauge immediately and require ongoing financial and energetic dedication.

#Licorice root is good for hormonal aspects and energy, as is ginseng

# other adaptogens such as Rhodiola rosea, seem to be beneficial on many fronts, however i have problems with most of them as they all have stimulating properties so i cant get right into them.

#I had some decent results from pregnenalone prior to opting for Licorice root.

#Any herbs or natural supplements that can help optimise vitamine and nutrient presence and maintain digestive enzyme function are a great start.

#Any immune boosters and blood/organ cleansing herbs are worthwhile on the long run.

#5HTP is one of the first things a naturopath will prescribe as there is a definite link to seritonin problems, whether this is post or pre viral is yet to be ascertained. (although i feel it is post viral)

#Ive been taking multi green/optimum greens/vital greens preperations and have noted a definite increase in strength and well being as a result.

#DHEA and Co Enzyme Q10 seem to be beneficial (theoretically) although im yet to try them.

DETOX

Detox/cleansing is vital to recovering from these illness's and for maintaining a quality of life or improving the overall quality of life.

There are a lot of toxins associated with these illness's and moreover living in the modern world. I feel that removing all unneccessary toxins and parasites is highly beneficial.

MEDICATIONS

The only time ive had any notable benefit from a pharmaceutical substance during the last three years it has been when i have ingested 2mg of Clonazepam.

When i have eaten clonazepam i have had complete symptomatic relief for 2-3 days (tapering out in terms of effectiveness from ingestion to the three day mark when the symptoms return slowly but vigorously)

I feel there may be a link between the adrenal overactivity(resulting in anxiety/stress response problems) and nervous system problems. I think that there is an aspect of 'fitting' or 'mini mals' that plays a part in the illness, (supported by the reported effects of anti fitting drugs in treating some fibromyalgia patients) and that Clonazepam somehow works on both the nervous system and adrenal system in such a way that they are temporarily removed from the equation.

Although clonazepam works so well for me there are huge problems surrounding its use, and i discontinued using it early this year as i was taking it twice a week and sometimes even three times a week.

I dont mention my using it as a recommendation, moreover as an interesting observation.

There are far better ways to deal with illness then 'temporary relief from symptoms, with subsequent negative effects'.

Although doctors have given me antidepressents and anti biotics, i have not taken either of them, opting for natural alternatives which i believe to be much more effective and appropriate.

The painkillers that i have been prescribed have been largely ineffective and redundent, so i have again opted for more natural and effective methods of pain relief.

I will continue to edit and update this post as things fall into place.

[Prophet]

I have been treated with suspicion and disbelief by doctors, welfare workers and even some friends and family over the last 3 years (to varying degrees) regarding my illness.

this is so true, try getting centrelink to understand about your condition. It takes about three years of chronic illness until they will believe you and this is something they won't tell you. Apparently this is how they treat all young people with chronic conditions. I have even come across a doctor who didn't believe there is a condition called chronic fatigue. When i told my regular GP (who is very understanding about this particular condition and has a good idea on what the condition is) he was quite shocked and embarassed that this other doctor didn't believe in such a condition. Might i add that this particular doctor who didn't believe in the condition was very old and ready for retirement in my opinion and his opinions probably reflected his old school of thinking and diagnosis.

Trying to get family to understand can also be rather difficult when they are always asking what is wrong and why you cant do things etc.

However there has been no real information or treatment, other then: ‘we don’t know why your so sick, but here’s some prozac and painkillers, they might help’

Of course I didn’t take the prozac, and painkillers have never done anything for me other then screw my guts up.

yes anti-depressants, specifically prozac seems to be the standard treatment for CFS and the only thing they can prescribe to try and increase energy levels but its benefits are very limited and does nothing to easy joint and muscle pains and often interferes with your sleep even more. Painkillers such as panadeine forte seem to be the only thing to ease the headaches and muscle and joint pains.

Now i am looking into the more herbal side of things such as tonic herbs and things to speed convalescence.

The only comfort one can get is that in most cases the condition eventually improves, this is something to look forward to.

[spiders]

' THE FOG

By far the most infuriating of the symptoms is the brain fog, whereby the constant nagging head aches and visual distortions and sleep deprevation culminate in a constant sense of confusion, lack of concentration, and lack of mental focus and stamina.

I believe that most depression suffered by CFS and FMS patients is POST ILLNESS and a result of the culminating psychological and emotional pressure.'

Actually i think if you look at the Dr. Bell's website this symptom is now quite well understood - it relates to orthostatic intolerance/postural hypotension which is actually a cardinal and diagnostic sign of Chronic fatigue syndrome - as is hypovolumia - low blood volume. Both result in reduction in blood pressure or blood flow to the brain.

'Orthostatic Intolerance

In 1995, Johns Hopkins researchers reported that up to 95% of CFS patients have neurally mediated hypotension, a condition in which blood pressure falls when it should rise16. This has become a dynamic area of CFS research and scientists are actively debating the nature of this and other forms of orthostatic intolerance17. Studies in recent years have focused on three possible keys to understanding orthostatic intolerance in CFS: low blood volume, abnormal sympathetic tone and neurological dysfunction18,19,20'

http://www.ncf-net.org/library/Bell-StreetenJCFS1998.htm

http://www.immunesupport.com/library/showarticle.cfm/ID/3343

http://www.cfids.org/about-cfids/research.asp

Licorice root works not only on supporting or increasing adrenal function - it also increases blood volume, and pressure - increasing white blood cell counts so improving immunofunction, as well as decreasing the symptoms of orthostatic intolerance and postural hypotension. WHich are crippling.

[_e_]

some good links and information there bm.. thankyou muchly

[Zen Peddler]

I should also reiterate that there is a subset of patients of orthostatic intolerance/postural hypotension who have an overly active sympathetic response to dropping blood pressure causing flushing, anxiety, tremors, etc.

[devance]

I have given up on chemicals.

A possible way is to use:

http://healthlink.mcw.edu/article/1031002355.html

'metabolic diseases where the mitochondria is the area of tissue affected by the problem, serious burns, and then a whole host of neurologic injuries. These are all potential future areas."

The right low level spectrum red light gives energy to the cell cytochrome enzymes.

Similiair to how a plant does so.

But the question is why buy a expensive device when the Sun is avaliable.

Who knows, maybe why people buy Chihuahuas Dogs,

a infrared heat source.

[Zen Peddler]

cool link man,

[Alchemica]

Botanical_Therapies_in_Chronic_Fatigue.pdf

Botanical_Therapies_in_Chronic_Fatigue.pdf

Botanical_Therapies_in_Chronic_Fatigue.pdf

[Zen Peddler]

great link there alchemia.

[amanito]

I also suffer from this shit. Living in Venezuela helped a lot, here in W-Europe I'm very affected by the cold and the humidity. I used to be depressed and have CFS. That part seems to be over now because I just accepted myself the way I am and stopped feeling pitty for myself and do something with my life. I was in treatment in a special clinic based on aquatherapy and exercise, but also information and education. I was very lucky to be selected.

The pain is worsened by stress, tiredness and cold, but also comes unexplained. Haven't been feeling down for the last three years and I don't feel like my mind is creating this. nonetheless stress factors ofcourse make it worse. (with most diseases, no?) It really hurts me when people come up with this bullshit, I have been suffering from it since I was a little kid.

Have been having pain now for a month, I don't really complain. I smoke pot about 1 or 2 x a week in the night, don't wanna do more because it's too hard to function on it. I take bromazepam now and then and always leave breaks for a few weeks and then try to just stand the pain. This is necessary if you don't want to be addicted. Gabapentine doesn't seem to help, I should exercise more, but it's demotivating if you're in pain.

A strong and positive mind seems to be the most important thing imho.

Still looking for some helpful meds or herbs ... So far only weed has helped.

Edited January 3, 2012 by amanito

[Evil Genius]

Amanito, have you been seeing a specialist about immune generated diseases because of the Fibromyalgia? Its a very wide disease with many forms and there are plenty of differences between them. Also, its a name that some doctors use when they have a disease with rheumatic sympthoms but dont know what it exactly is. My mother was diagnosed with it few years ago and it turned out the diagnose was close but still wrong. Im suffering from a severe immune generated disease myself and i know what it means to live and function like that.

There are some herbs that help against it. Ephedra had a good reaction but the mental comedown was too heavy. It had a strenghtening effect on the body but made depressions so much worse. Would definately avoid benzos like the plague. I only took em for a short period of time and they almost fucked my life up completely. If i were you, i´d maybe look into cath if its legal where you live. Not sure how it affects you but it might be worth a try.

[amanito]

Nope, never been to sucha specialist, do you know the name of the basic tests for this condition? .

I've been to many housedoctors, specialists in rheuma, internists, cardiologists, neurologists and psychiatrists in the past and some said it could be FMS and CFT, ofcourse some are more careful with what they say. Since 2007 i've been granted an income from the government for people with a disability. I used to spend about 16 hours a day in bed, it took me a lot of aford to stay awake or to do small tasks Took a few years meds: bromazepam, clonazepam, amphetamines, moclobemide ... Needless to say I also became a benzo-addict, auto-medicating myself even more, super easy to get your things on the net.

My income and that special status will expire this year, I'm not sure if I'll apply again, I've had two jobs for a few months over the past few years and managed to finish my bachelor, almost finishing a second bachelor. Things I didn't see myself doing before 2008/2009, I made a lot of progress. It's good to fall back on and it definetely has financial benefits, but it also makes you lazy as you get an income from the government without having to work for it.

Actually since I've met my wife I started to believe in myself and I've finished my school, having a diploma gives me more options than just jobs that are too demanding for my body. I'm now doing a 3year bachelor in 1 year, after that I'll try to get a stable job. Step by step.

I'll look into that pdf for those herbs listed in the pdf. I'm very sensitive to ephedrine and amphetamines .. don't know how it would be with khat and don't know where to get a stable source for that. I ordered a few things from the net to try such as poppies, pedicularis, wild lettuce, skullcap isolates .. let's see. Kratom doesn't seem to work .

[Zen Peddler]

I have immune related illnesses and I can tell you that at tmes they are thoroughly depressing. The worst part is that mine dont seem to be controlled by the conventional meds and at the moment I can barely get out of bed let alone work. And I have a mortgage to pay so it stresses me out at times... I just kinda wish I could get things under control for five years or so just to get financial and then I could cut down hours or something...

[amanito]

Do people with auto-immune diseaeses easily get depressed, ... I mean really depressed? Friend of mine has is and is going through a rough depression right now .. I've thought they could be related maybe.