Chronic Fatigue Syndrome and Fibromyalgia

kenvj · Posted: Mon Oct 06, 2008 2:26 pm Post subject: Multiple Chemical Sensitivity

Anyone out there have a problem with this? I seem to be developing this rather nasty problem and I understand it is quite common among people with CFS/Fibromyalgia.
Any info, particularly how to combat it, would be appreciated.
Ken

tlexie12 · Posted: Tue Oct 07, 2008 11:36 am Post subject:

Hi ken, i personally dont have a problem with that, but i have heard that it i really common with CFS. Do you just feel worse fatigue when you are around harsh chemicals?
I think the guy who runs the cfs phoenix site had a similar thing. He didnt have it for a long time, then it just developed after years of being sick.

blueboy · Posted: Fri Oct 17, 2008 6:02 pm Post subject:

hi ken , mcs seems to develop either after a massive exposure or after having me for many years ,i have had me for 15 + years and now have mcs too.

kenvj · Posted: Sat Oct 18, 2008 2:18 pm Post subject:

Well I've had CFS/ME for over 20 years so I suppose it is a possibility.
Thanks Ken

cfs_since_1998 · Posted: Sat Oct 18, 2008 7:54 pm Post subject:

I am very sensitive to chemicals, although I wouldn't say I have "MCS" since CFS is probably the underlying illness. I certainly wasn't sensitive before I had CFS. Basically I get an instant sore throat and headache. If exposed long enough I will develop symptoms of an upper respiratory infection.

Chronicfatiguetreatments · Site Admin

i dont have MCS, but i developed some allergies that i never had before.

I had one of the prick tests, where they prick the skin on your back and test to see if you are allergic to a certain allergan.
I was allergic to almost every one at +4 which is the highest, the dr said it was the worst he had ever seen. My entire back was swollen.

But, I think it might just be a probelm with inflammation, i dont really have that bad of allergy symtpoms. I only notice sneezing and headaches around my dog and dust, but other than that i dont notice a ton of allegic symtpoms.

IAnH · Posted: Thu Oct 23, 2008 3:20 pm Post subject: MCS as a consequence of CFS

I have had CFS for 12 years (at least) and my wife and daughter came down with it just over 2 years ago but our daughter probably had it for many years. As the illness progressed the sensitivity symptoms became worse. Our daughter suffered mcs severely after a long exposure to turpentine (as an artist), but it would not be true to say the turps caused it because she already suffered from it in a small way. I am very sensitive to some things but its not as widespread or severe as my daughter. We all feel nauseous after eating but I have not found any particular foods which we can attribute this to. For the past year I have assisted patients with this condition and it varies a lot. but the symptoms of cfs are always present and usually a precursor.

IAnH · Posted: Fri Oct 24, 2008 3:03 am Post subject:

Further to this MCS issue. I believe it is a consequence of chronic fatigue syndrome and is consistent with the viral cause theory such as HHV-6 - HERV K16 interaction which codes for a superantigen and plith-1 neurotoxin. Some of the brain chemicals which are in abnormal amounts in cfs sufferers will exaggerate nausea, pain, vertigo, fatigue and disorientation. I believe CFS is a condition which exaggerates normal discomforts and if sleep is poor then its even worse. In fibromyalgia, there is a strong relationship between pain and sleep loss. (The fewer hours slept the more pain is felt and I think the level of pain is inversely proportional to the hours slept, not just that more pain interrupts sleep). In many cases fibromyalgia is indistinguishable from cfs and I think many people with the diagnosis of fms have cfs with a lot of pain, partly because they have pain sources in their body, such as whiplash injury, rotator cuff injury, lower back damage and postural discomforts which are exaggerated by the cfs into unbearable pain. Similarly the mcs sufferer experiences exaggerated nausea in the presence of voc's which make most people feel "woosy" anyway. With MCS its important to avoid triggers and be conscious of diet.

TheLegend · Posted: Mon Nov 03, 2008 2:29 pm Post subject:

The question of MCS is a thorny one, even more so in relation to CFS.

I look it like this (as someone who is hypersensitive rather than such MCS). . .IMO it's a mixture of the neurological dysfunction, most probably limbic system and a psychological one (or possibly neurosomatic as Goldstein coined).

Dr Adrian Morris puts it like this. . .

http://www.allergy-clinic.co.uk/chemical_sensitivity.htm

[quote]The underlying cause for the IEI symptom complex is unlikely to be a direct reaction to everyday chemicals, but rather a masked stress disorder with heightened olfactory awareness (hyperosmia) and associated behavioural conditioning.
[/quote]

Personally, I don't think he's far off although he doesn't acknowledge any specific neurological aspects in the above link.

My CFS started following a mixture of severe emotional and then physical stressors. These were re-impacted some years ago and that's when my hypersensitivity started.

I can find no evidence that I am allergic to chemicals, there's been no severe toxic exposure etc. I certainly have the stated hypersomia and some unresolved issues (although I no longer have depression).

I don't doubt that some people have suffered high level exposure but they seem to be in the minority.

Clearly the normal process of detox within the body goes out of whack with CFS, re-balancing that through whatever means is highly likely to be beneficial. That could be something like Perrin/MLD or Mind-Body approaches, but not total quackery overload such as chelation therapy (unless you've been ingesting lead! LOL)

IMO it's unhelpful that some enviromental doctors push an agenda that people are 'allergic' to everything around them. As it is more likely to negatively impact on any stresses that exist or even create new ones than help. I've never found any substantive evidence that treatments such as provocation neutralization or enzyme potentiated desensitization (EPD) work. Sadly a large hole in one's pocket is the most likely outcome.

Whatever one's situation, I'm convinced there's a way out of this and CFS. Many have proved it and I'm sure we'll do the same.

sunshine · Posted: Wed Nov 05, 2008 12:07 pm Post subject: Ken

I have various chemical sensitivities of varying intensity tho' I'm not comfortable with the label MCS. Then again I feel the same about most labels for diseases.

I deal with it the way I understand Ashok says to deal with the fatigue element if CFS. To me that's acknowledge it in a calm matter of fact way, and respect that your body is telling you it has had enough of a particular chemical stressor. So just as if you're body was saying it needed to physical or cognitive rest you quit doing what is tiring it so it is with MCS. IE avoid/limit exposures to perfumes, smoke or whatever.. Oops I've said the same thing twice. Since childhood I've naturally avoided some of this stuff, without really knowing why other than some of it made me feel a bit urgh. Nowadays sometimes my reactions are stronger and I understand why I did what I did- becuase my body has limited detox capacity.

AR worked well for your CFS, no? How about the MCS, does Askok's theory on the Amygdala and MCS/reduced detox function chime/work with you? Like you know anxiety makes most situations worse and I can't think of many benefits to it Smile

..I know for many it's a difficult emotion to manage...

TheLegend · Posted: Wed Nov 05, 2008 12:40 pm Post subject:

As I will be doing the Gupta Programme shortly, so it will be interesting to see what happens in all respects including hypersensitivity.

I'm not sure about total avoidance. While of course I certainly don't advocate putting oneself in a severe symptom inducing situation, I do believe (from my own experience) such level of avoidance in one respect can re-inforce the neurological/psychological dysfunction/mechanism that is at hand.

Like most things in life it's probably a balance. With these syndromes your mind and body goes completely out of equilibrium for whatever reason. As I mentioned in my previous post I've managed to identify what were the initial catalysts for me. Having horrendous sleep habits and 'unnatural' working hours also damaged my system. That started over a decade ago, and I've still to rectify the sleep issue despite no longer working.

That will be part of my own protocol which I will be starting soon.

efly · Posted: Wed Nov 05, 2008 5:44 pm Post subject: MCS

Hi Kenvj
Ive had MCS quite badly... but have noticed the more Im into the AR ... the better its become... all part of a hypersensitive Amygdala ! I would say as the body heals through the Ashok programme the less the MCS will bother you.
efly

sunshine · Posted: Thu Nov 06, 2008 8:47 am Post subject: The Legend

Hi, that's a great name you have there

You said:
'I do believe (from my own experience) such level of avoidance in one respect can re-inforce the neurological/psychological dysfunction/mechanism that is at hand.'

You're right it's not possible to avoid all triggers, or to seek to, but my take would be that I don't believe I have psychological dysfunction regarding sensitivites. Also if a person belives that some of their reactions are due to impaired detox ability then it's extremely easy to avoid many of these in your home, say perfumes or smoke. Perhaps it's not healthy for many people to me subjected to high levels of what I find difficult. It all adds to the toxic load, and some are more able to cope with that than others. Much of the troublesome stuff seems pretty pointless to me, also enviromentally unsustainable. Air freshners, when possible what's wrong with opening windows, else use a natural essential oil that's tolerated? Bounce/tumble dryer fragrance sheets, in suitable weather why not dry your washing outdoors, or again use a natural, tolerated oil? Many cosmetic products have less offensive alternatives to moisturise just use some olive oil, coco butter or similar. Loads more examples.

Of course people are different and I've been told that MCSers tend to be antsy but I don't know any and I'm not this way myself, so that's why it doesn't chime with me. Personally I think it's a waste of valuable living to be anxious about this, or to anticipate, seek out or check if triggers are present. (To me that's what you seem to be suggesting MCSers do?) Life is precious and short enough, why spend it worrying or doing other negative things when there is so much that is enriching, enjoyable or purposeful? I understand it's not always possible to see it that way, especially for very ill people.

Just my way of seeing things.

Chronic Fatigue Syndrome and Fibromyalgia

Multiple Chemical Sensitivity