Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 THis suggests to me that more hydrating fluids and electrolytes are needed. SUnlight is critically important. mjh From: " netsukeme " kcapel@... Date: Sun May 21, 2006 11:50am(PDT) Subject: Re: sunshine <...eyes have always been very sensitive to light but being out in the sun doing physical stuff wasn't a problem until I got sick...I get red-faced and overheated doing nothing...although 2 years ago I always had a low-grade temp around 99.7...> Yup. Me too. Don't have the mouth thrush stuff or the vaginal yeast anymore. Had that stuff when my thyroid quit working in the late 1980s. Now just a few fungal nails and a recurring scalp infection that seems to be fungal. Before I realized the connection between " sun " and " sick, " I always wondered why I was having problems that felt like descriptions I had heard about " sun stroke. " Sun stroke? I felt like I was caught up in some 19th century western novel. Ladies dressed in bloomers and long sleeves fanning themselves and " swooning. " Me? Well, yup, me. Welcome to the vampires club, Teena. the one in Champaign IL mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 <...eyes have always been very sensitive to light but being out in the sun doing physical stuff wasn't a problem until I got sick...I get red-faced and overheated doing nothing...although 2 years ago I always had a low-grade temp around 99.7...> Yup. Me too. Don't have the mouth thrush stuff or the vaginal yeast anymore. Had that stuff when my thyroid quit working in the late 1980s. Now just a few fungal nails and a recurring scalp infection that seems to be fungal. Before I realized the connection between " sun " and " sick, " I always wondered why I was having problems that felt like descriptions I had heard about " sun stroke. " Sun stroke? I felt like I was caught up in some 19th century western novel. Ladies dressed in bloomers and long sleeves fanning themselves and " swooning. " Me? Well, yup, me. Welcome to the vampires club, Teena. the one in Champaign IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 I appreciate that sunlight is critically important, mjh. But if you go out in the sun and it makes you sick for days on end, you stop going out into the sun. It's a choice. And there's only one practical solution. I mean, if given the choice between a half a life periodically and a quarter of a life, which would you take? And...after every time I go out into the sunlight, I do indeed then need more hydrating and electrolytes, believe me. No mistaking that at all. If I do it before going outside, it adds to the nausea and stomach sensations and then diarrhea. I really get very ill and I don't like it. I don't want to experiment with it. It's not pleasant, but it's been a given and so I avoid high sun hours. > > > > THis suggests to me that more hydrating fluids and electrolytes are needed. > SUnlight is critically important. > > mjh > > From: " netsukeme " kcapel@... > Date: Sun May 21, 2006 11:50am(PDT) > Subject: Re: sunshine > > <...eyes have always been very sensitive to light but being out in > the sun doing physical stuff wasn't a problem until I got sick...I > get red-faced and overheated doing nothing...although 2 years ago I > always had a low-grade temp around 99.7...> > > Yup. Me too. Don't have the mouth thrush stuff or the vaginal yeast > anymore. Had that stuff when my thyroid quit working in the late > 1980s. Now just a few fungal nails and a recurring scalp infection > that seems to be fungal. > > Before I realized the connection between " sun " and " sick, " I always > wondered why I was having problems that felt like descriptions I had > heard about " sun stroke. " Sun stroke? I felt like I was caught up > in some 19th century western novel. Ladies dressed in bloomers and > long sleeves fanning themselves and " swooning. " Me? > > Well, yup, me. Welcome to the vampires club, Teena. > > > the one in Champaign IL > > > mjh > " The Basil Book " > http://foxhillfarm.us/FireBasil/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Hi, I think that sunlight is considered by some to be necessary for our bodies to produce our own vitamin D; so if you dont get enough sunlight; and you dont get enough vitamin D in your diet either, then you will get rickets. I am not sure how strong the sunlight has to be, if normal daylight is enough or if you have to be in direct sunlight. But I think that most people in the western world get plenty of vitamin D in their diets nowadays, I am not sure cos of the brainfog but I think its in cheese, milk, fish and eggs amongst other things; and lots of foods have it added: like margarine and cereals. So I think that we probably get sufficient vitamin D in our diet providing we are able to eat normally; after all, if you didnt get enough D from your diet alone, then wouldnt we all get ricketts in the wintertime? I have also been led to understand that in a person with a normally functioning Hypothalamus, exposure to very bright sunlight can help to stimulate the bodies natural production of melatonin; which in turn regulates sleep patterns, and if we are lucky, switches us off to sleep. Unfortunately, I think that in quite a lot of people with CFS/ME type illnessess; the hypothalamus malfunctions, and exposure to sunlight will not have this desired effect. I think the most obvious symptoms of a hypothalamus malfunction are thermodysregulation (much too hot or much too cold) abnormal appetite fluctuations- not hungry-starving-; and chronic insomnia. So it is quite different for people whose hypothalamus is malfunctioning (like mine), because I dont think that sunlight can make the body produce melatonin at all; and therefore in this circumstance exposure to sunlight will not help you to get proper sleep at night. well, it doesnt do it for me, anyway. My occupational therapist told me that 'ordinary sleep hygiene methods' (that includes sunlight for melatonin production) will not normally help people with CFS/ME; because their sleep disorder is much too severe. Then, if you have CFS/ME and like me you find that exposure to strong sunlight and heat makes you ill and causes 'payback' (delayed flu- like symptoms and worse), I would say that the possible slight benefits of sunlight are vastly outweighed by my need to protect myself from it. If you find exposure to sunlight causes dairrheoa (sp) then you will need fluids and electrolytes anyway for the dehydration, I expect. Its a puzzle. I mean its not as if exposure to sunlight can correct the malfunction of the hypothalamus, or that exposure to sunlight is the only way of getting enough vitamin D. But I am not any kind of expert of course! I am not aware of any other particular benefits from exposure to sunlight, although I know of quite a few reasons to stay out of it, like heat stroke and skin cancer, for example. best wishes yvonne (member of the vampire club) > > > > > > > > THis suggests to me that more hydrating fluids and electrolytes > are needed. > > SUnlight is critically important. > > > > mjh > > > > From: " netsukeme " kcapel@ > > Date: Sun May 21, 2006 11:50am(PDT) > > Subject: Re: sunshine > > > > <...eyes have always been very sensitive to light but being out in > > the sun doing physical stuff wasn't a problem until I got sick...I > > get red-faced and overheated doing nothing...although 2 years ago > I > > always had a low-grade temp around 99.7...> > > > > Yup. Me too. Don't have the mouth thrush stuff or the vaginal > yeast > > anymore. Had that stuff when my thyroid quit working in the late > > 1980s. Now just a few fungal nails and a recurring scalp > infection > > that seems to be fungal. > > > > Before I realized the connection between " sun " and " sick, " I > always > > wondered why I was having problems that felt like descriptions I > had > > heard about " sun stroke. " Sun stroke? I felt like I was caught > up > > in some 19th century western novel. Ladies dressed in bloomers > and > > long sleeves fanning themselves and " swooning. " Me? > > > > Well, yup, me. Welcome to the vampires club, Teena. > > > > > > the one in Champaign IL > > > > > > mjh > > " The Basil Book " > > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Hi . In general, I agree with just about everything you've said. I guess you left out the other bone maladies, like osteoporosis. (But your mention of rickets reminded me of an old story in my family of how my father developed rickets as a child...so I wonder if there's any connection with " me. " ) All in all, I think I need to submerge myself in " all things hypothalamus, " so to learn what's gone so wrong in my body. > > Hi, > > I think that sunlight is considered by some to be necessary for our > bodies to produce our own vitamin D; > so if you dont get enough sunlight; and you dont get enough vitamin D > in your diet either, then you will get rickets. I am not sure how > strong the sunlight has to be, if normal daylight is enough or if you > have to be in direct sunlight. > But I think that most people in the western world get plenty of > vitamin D in their diets nowadays, I am not sure cos of the brainfog > but I think its in cheese, milk, fish and eggs amongst other things; > and lots of foods have it added: like margarine and cereals. > So I think that we probably get sufficient vitamin D in our diet > providing we are able to eat normally; after all, if you didnt get > enough D from your diet alone, then wouldnt we all get ricketts in > the wintertime? > > I have also been led to understand that in a person with a normally > functioning Hypothalamus, exposure to very bright sunlight can help > to stimulate the bodies natural production of melatonin; which in > turn regulates sleep patterns, and if we are lucky, switches us off > to sleep. > > Unfortunately, I think that in quite a lot of people with CFS/ME type > illnessess; the hypothalamus malfunctions, and exposure to sunlight > will not have this desired effect. > I think the most obvious symptoms of a hypothalamus malfunction are > thermodysregulation (much too hot or much too cold) abnormal > appetite fluctuations- not hungry-starving-; and chronic insomnia. > > So it is quite different for people whose hypothalamus is > malfunctioning (like mine), because I dont think that sunlight can > make the body produce melatonin at all; and therefore in this > circumstance exposure to sunlight will not help you to get proper > sleep at night. well, it doesnt do it for me, anyway. > > My occupational therapist told me that 'ordinary sleep hygiene > methods' (that includes sunlight for melatonin production) will not > normally help people with CFS/ME; because their sleep disorder is > much too severe. > > Then, if you have CFS/ME and like me you find that exposure to strong > sunlight and heat makes you ill and causes 'payback' (delayed flu- > like symptoms and worse), > I would say that the possible slight benefits of sunlight are vastly > outweighed by my need to protect myself from it. > > If you find exposure to sunlight causes dairrheoa (sp) then you will > need fluids and electrolytes anyway for the dehydration, I expect. > > Its a puzzle. I mean its not as if exposure to sunlight can correct > the malfunction of the hypothalamus, or that exposure to sunlight is > the only way of getting enough vitamin D. > > But I am not any kind of expert of course! > > I am not aware of any other particular benefits from exposure to > sunlight, although I know of quite a few reasons to stay out of it, > like heat stroke and skin cancer, for example. > > best wishes > yvonne (member of the vampire club) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Hi, . It's worth considering whether or not you have one of the porphyrias, such as acute intermittent porphyria, since a bad reaction to sunshine can be one of the symptoms of that. I've encountered only one other person who appeared to have it. It's fairly rare. Check this website and see if anything there sounds familiar to you: http://www.merck.com/mmhe/sec12/ch160/ch160c.html Rich P.S. Incidentally, porphyrias involve the synthesis of heme, which is related to the formation of red blood cells, which you were asking me about recently. Is this a coincidence, or what? > > I appreciate that sunlight is critically important, mjh. But if you > go out in the sun and it makes you sick for days on end, you stop > going out into the sun. It's a choice. And there's only one > practical solution. I mean, if given the choice between a half a > life periodically and a quarter of a life, which would you take? > > And...after every time I go out into the sunlight, I do indeed then > need more hydrating and electrolytes, believe me. No mistaking that > at all. If I do it before going outside, it adds to the nausea and > stomach sensations and then diarrhea. I really get very ill and I > don't like it. I don't want to experiment with it. It's not > pleasant, but it's been a given and so I avoid high sun hours. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 if you have CFS/ME and like me you find that exposure to strong sunlight and heat makes you ill and causes 'payback' (delayed flu- like symptoms and worse), I used to have symptoms like these, but reaction to sunlight went away several years ago. I have no idea what helped. The increasing heat of this season was beginning to wipe me out, but I increased my dosage of Excitaplus and that has helped. Too soon to say how much. Last summer I noticed that although, with the a/c running I didn't feel overly hot, I was still getting weak. Haven't a clue how that could be. Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Hi Adrienne, < I noticed that although, with the a/c running I didn't feel overly hot, I was still getting weak. Haven't a clue how that could be. > Yes...me too. What IS that? I don't know if I'd use the word " weak " for me in the same situation, but it's close enough. I can be sitting inside with the a/c on and if the sun is bright outside and it's hot, I am affected...while I'm inside in the cool a/c. I even had an artist friend about ten years ago who drew a cartoon of my outside freezer (little chest one in the garage) and with just my fingers creeping out of the freezer lid, advising the observer to " not disturb " until fall or some later time. I thought it was only " me " and that other people didn't notice my avoidance. In fact, this being affected while inside and in the cool air was one thing that helped me decide that maybe this WAS all " inside my head. " Now I know it's not...but I still don't understand how I/we can be affected by the sun and heat outside when we're not even out IN it. Thanks for noting this, Adrienne. Can you tell me what Excitaplus is? in Champaign IL > > if you have CFS/ME and like me you find that exposure to strong > sunlight and heat makes you ill and causes 'payback' (delayed flu- > like symptoms and worse), > > I used to have symptoms like these, but reaction to sunlight went away > several years ago. I have no idea what helped. The increasing heat of this > season was beginning to wipe me out, but I increased my dosage of Excitaplus > and that has helped. Too soon to say how much. > Last summer I noticed that although, with the a/c running I didn't feel > overly hot, I was still getting weak. Haven't a clue how that could be. > Adrienne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 Let me see if I understand this correctly. You're sitting in a cold house and you attribute the sun and the heat outdoors as affecting your condition? I'll try to explain what is happening, IMO. When a person w/CFS-FMS, remember lower than normal blood volume for which blood pressure is being maintained by vasoconstriction. When the person is outside they are most likely walking or upright. The heat from the sun is going to cause some vasodilation which is going to cause a slight drop in blood pressure, since BP is being maintained by vasoconstriction. The body responds by feeling nauseous, dizzy, weak in the legs. It wants to black out so that blood flow to the brain can be restored. The weakness that comes from being indoors with air conditioning is completely different, it is related to reduced circulation and lowered metabolism. An interesting phenomenon is that when the body gets colder, the senses interpret the environment as being hotter. Something I observed when my father was ill and his temperature had dropped significantly. The heat from the overhead 100 watt light buld was detectable to him. And he would be very hot when I sat next to him due to the heat that was radiating from my body. Now in CFS-FMS people have a slightly lower than normal body temperature therefore the outside feels hotter to them and a cooler environment feels better. Many people with CFS-FMS are staying indoors w/ air condtioning to keep them cool and comfortable. I think that this is a poor environment for the person. There is a correlation to body temperature and metabolism. Metabolism is blocked, causing a reduced temperature and then sitting in a colder environment the person places greater demands on metabolism to maintian body temperature. When metabolism slows, it send a signal to the body that it does not need as much blood, so long term you are contributing to a further decrease in blood volume. Part of the solution to this condition, IMO, is to increase metabolism and one way to help do this is to raise body temperature. If you want to know how to accomplish that, visit my website http://www.xmission.com/~total/temple/index.html So those with CFS-FMS, using AC to keep cool, turn it off. Or at the least raise the temperature setting so it is not so frigid. You'll save on your energy bill too. All the best, Jim > > > > if you have CFS/ME and like me you find that exposure to strong > > sunlight and heat makes you ill and causes 'payback' (delayed flu- > > like symptoms and worse), > > > > I used to have symptoms like these, but reaction to sunlight went > away > > several years ago. I have no idea what helped. The increasing heat > of this > > season was beginning to wipe me out, but I increased my dosage of > Excitaplus > > and that has helped. Too soon to say how much. > > Last summer I noticed that although, with the a/c running I didn't > feel > > overly hot, I was still getting weak. Haven't a clue how that could > be. > > Adrienne > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 Hi. Let me see..... No. I think you really do not understand the situation correctly at all. We were discussing the common and frequently recorded neurological symptoms of thermal dysregulation. we were also talking about sun sensitivity and heat stroke. I dont have any air conditioning in my house, and when I wake up in the night with hypothermia whilst wrapped in a quilt in an ambient room temperature of 80 degrees farenheit, I dont think that it bears out your air conditioning theory very well at all. I also frequently experience hyperthermia whilst indoors, whilst seated as a result of eating a cooked meal. It is not a sensation of weakness, it is merely an acute rise in body temperature causing me to break out in hair drenching sweat brought on by simply the intake of food. My metabolism may well be slowed down, but your post has really put my back up, I dont even want to know if your website really has any clues on how to improve my metabolism, because I get the impression that if it does, somehow it is going to end up costing me money. > > > > > > if you have CFS/ME and like me you find that exposure to strong > > > sunlight and heat makes you ill and causes 'payback' (delayed flu- > > > like symptoms and worse), > > > > > > I used to have symptoms like these, but reaction to sunlight went > > away > > > several years ago. I have no idea what helped. The increasing heat > > of this > > > season was beginning to wipe me out, but I increased my dosage of > > Excitaplus > > > and that has helped. Too soon to say how much. > > > Last summer I noticed that although, with the a/c running I didn't > > feel > > > overly hot, I was still getting weak. Haven't a clue how that could > > be. > > > Adrienne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Hi, I'm no expert but a friend died of SLE back 13 yrs ago. Her very first symptom was severe itching of the scalp after a hot break in Tenerife after which she was diagnosed. Thereafter she had Roc total block products on prescription. Obviously SLE is a severe illness and not limited to the skin (as I believe Discoid Lupus is). I looked at Lupus as an alternative diagnosis at one time. The 2 conditions are fairly distinct however when one looks at the symptom picture fully, and obviously the appropriate tests can confirm or exclude a diagnosis of SLE. Rosie Subject: sunshine Hi I was just reading that sensitivity to the sun is one symptom of Lupus. I dont know what kind of sensitivity symptoms theya are talking about yet, though. all the best This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 Growing up we were required to get several hours of sunshine everyday by our parents. We were not allowed to wear sunglasses unless, as teens, we were driving the car. We process sunlight through our EYES...so if you are a frequent sunglass wearer, you are not processing vitamin D anyway. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 Growing up we were required to get several hours of sunshine everyday by our parents. We were not allowed to wear sunglasses unless, as teens, we were driving the car. We process sunlight through our EYES...so if you are a frequent sunglass wearer, you are not processing vitamin D anyway. Gloria Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.