Replied By Debra (Brisbane, Australia) on 05/25/2010
HELP, STILL DESPERATE trying all the recommendations on this site. Can anyone take a guess - on dark all symptoms x 10, its horrifying, pain!!!!!!!!!!!!!!, gasping for air, almost in a coma but ears ringing so loud and pain so great Im definately conscious - unfortunately. If I change time zones or countries it still does the same thing - on dark. Its been doing it for years. In summer in a daylight saving area not so bad, dark at nearly 9 pm. Take some sleeping pills and sleep it off but its winter here now, dark at 5 pm. I have fms, cfs, mcs, menopausal, asthma, allergies out of control, stomach is bad, my liver must be struggling. Please help, I cant bear it.Replied By Gtcharlie (Los Angeles, Calif Usa) on 05/26/2010
May I suggest that you "cheat your body with a fake indoor light" by placing a desktop flourescent lamp next to your bed? Change the light bulb to an ultra-violet one, the ones being used to grow plants indoor. Or purchase a flourescent light bulb that is closest to sunlight or natural light. Leave it on for the whole night or after dark, do not wear any eye shade when going to sleep for your problems could be due to the reaction of your eyes to daylight, or lack of it. Just a thought when I remembered we spend millions of dollars trying to develope a ball pen that can write in space while the Russians only use pencils!
Hope it will help! Regards!
Replied By Connie (Slc, Ut) on 05/26/2010
Hello Debra,I hope this anectotal information is helpful for you. I have been taking cortisol for 5 years now for severe adrenal and pituitary insufficiency. The standard dosage for this condition should be 20mgs of cortisol daily in divided amounts. I have not been able to take less than 30mgs daily for 3yrs without severe symptoms. However; I have learned that most of these symptoms are the result of other causes as well as the side effects of the cortisol. Most people with this condition have a litany of imbalances, and blood tests, however limited, can reveal some of them. Electrolytes are usually a big issue. Usually, those with an insufficiency of an adrenal origin experience a low sodium/high potassium imbalance. People with an insufficient pituitary can experience a low sodium/low potassium imbalance. This is very generalized information. Chlorides and Co2 can also be abnormal or nearly such. Some of the symptoms you describe, Debra, could possibly be low potassium. I write this with great reserve because I only know so little of healing after a lifetime of research and experimentation. Low C02 can indicate low oxygen and low bicarbonates. Low chlorides can indicate low hydrochloric acid. In my own experience, low bicarbonates and low potassium have been the main sources of pain. Generally, cortisol supports the retention of sodium and the "wasting" of potassium. For my own case, I take potassium bicarbonate in larger amounts, and only occasionally take sodium bicarbonate,because the cortisol causes me to retain the sodium.(I also take potassium gluconate so as not to take too much bicarbonate.) As for the amounts you may need for now,Debra, Your instincts will be critical. Ted's recomendations are an excellent beginning, but you may need to adjust to your own condition and medication. Finally; I'm currently trying to approach the Origin of this condition and negotiate healing. It is hereditary, viral, microbial, etc., and I'm having great progress following numerous recomendations that you all suggest here at Earth Clinic. This is a very emotional Thank You to you all. ConnieReplied By Carly (Seattle, Wa) on 05/26/2010
Debra - I liked the other ideas I have seen recommended to you and would like to add one more. If your symptoms are related to when there is little sunlight it may be a vitamin D deficeincy. Please do a web search on "low vitamin D symptoms".
I would also look in to magnesium supplementation as well.
I hope you find the answer you need and feel better.
Best,
Carly
Replied By Connie (Slc, Ut) on 05/26/2010
Hello again Debra; After writing to you earlier,and then realizing your dire need for pain relief, I also realized that potassium bicarbonate is usually not in everyones' pantry. But as so many people have here suggested, there are numerous foods and herbs that contain potassium and bicarbonate (precursors). Seaweeds such as dulse and kelp are excellent sources. Leafy greens juiced or simmered and drunk with their broth are great: beet greens, kale, collards, dandelion greens,etc. If tolerated by your body, soaked nuts such as almonds, tomato products(low sodium no additives), certain mushrooms, are high in potassium(first two),(one source indicated that cremini mushrooms are an excellent source of bicarbonate precursors). If you need help with digestion of these foods, try digestive enzymes such as pancreatin and bromelain. HCL is great if you have a need, but test first.(I've taken it for years but took too much in my supplements, and worsened my pain.) Essential oils are a great help. I use many and switch around.(now its peppermint oil,but ginger oregano,clove,etc. have been great. Most people dilute for internal and external use.) To source a supplier of supplements,you may want to look up those that Ted and others have mentioned. They are more pure and are sold in bulk. I hope for your relief, Connie.Replied By Debra (Brisbane, Australia) on 05/28/2010
thank you so much. You brought something to my attention. When they did the blood tests 4 yrs ago (when I got so allergic I started living in a car, just couldnt bear the increased pain inside) I had low sodium, high potassium, now I have the opposite, very high sodium, very low potassium. am sick sorry, talk soon.Replied By Debra (Brisbane, Australia) on 05/28/2010
thank you again, you've been helpful. Unable to eat any of these foods. Finally I've discovered myself - doctors just arent interested in anyone with a diagnosis of fms, cfs or mcs, you can almost see the eyes roll around in their head - I have very advanced calcified arteries for my age and am at extreme danger of having a heart attack or stroke - also ca lying in my tissues, with mg adding to indescribable fatigue. I'm sure you have an idea of what I'm talking about. Since I now have high sodium and low potassium I got some potassium but is potassium chloride.....not what I need is it? I go into meltdown with anything that has a smell so that is part of my problem with food, cant go anywhere near essential oils. Spent 000s of $ on supplements but apart from digestive enzymes could not tell any difference. I can only imagine as Ted suggests the magnesium stearate and fillers stop you from absorbing them. As you suggest quality?? Ill let you know if I discover anything useful.Replied By Connie (Slc, Ut) on 05/30/2010
Hello Debra; How I admire your survival instincts! It is phenomenal that you have made a home and dealt with such blows to your wellbeing while maintaining hope. I hope for success in trying to be helpful to you. Firstly; Cortisol's effects are many,one being that it raises hydrochloric acid in the stomach. Potassium chloride may be too acidic for you if you have enough chlorides and not enough bicarbonates, (buffers), to protect your tissues. Maybe green grasses could be more palatable for you. Wheatgrasses, barleygrasses, alfalfa, etc., whether fresh or dried,have a mild scent.(maybe capsules would be gentle.) There are many great foods that are high in potassium,(I'm still researching the bicarb. aspect);so if you have a liking for pumpkin, winter squash, avocadoes, apricots, etc., your instincts will help you find what is best. As for your calcification issues;there are many great suggestions here on EC. Maybe the ones that are more moderate would be a good beginning. (herbs:chanca piedra, alfalfa,etc.,rather than acids and compounds) Some supplements can be problematic at this time when you are having liver and or kidney problems.(I became hypercalcemic with moderate amounts of Vit.D, even with trials of different types. I also have a liver condition.) An imbalance in the liver can cause great pain. I've had good results with dandelion root, milk thistle, and I'm "testing" chanca piedra.(need to be more scientific) These herbs and potassium bicarbonate have been most helpful for my own situation.(I do try many foods,supplements,etc.) Licorice is a great herb in many ways, but it does have the side effect of "sodium retaining potassium wasting". People with primary or secondary adrenal insufficiency oftentimes have gonadal imbalances: excessive or insufficient production of sex hormones. This condition can be a challenge to treat because of all the glitches that can occur in their metabolism. I've tried herbs and transdermal creams for my hypogonadism,and had various results. Progesterone cream was helpful in moderate amounts because it raised my cortisol level. In high amounts, the side effects for me were edema,mildly high blood pressure, tiredness,(similar to low potassium). I also tried estrogen and testosterone,but could not metabolize them well. I do take 10mgs daily of DHEA with good results.(If I take any more,I get pounding heart palpitations and insomnia.) It may be that DHEA could be of benefit for you,Debra,as in this condition, there is that tendency towards low DHEA. Thank You all, ConnieReplied By Connie (Slc, Ut) on 07/07/2010
Hi Debra, I hope that by describing my own efforts to mitigate my conditions, you may also find possibilities. Much of my pain and fatigue appears to be from the disemination of the herpes zoster virus(shingles) to my liver. I've been having consecutive outbreaks for three years straight. Much of the neuropathy has been in the liver area, radiating to the groin, kidney, and hip. There is at least one lesion(unbiopsied) on the liver at this time. I only suspect that these conditions are related because the outbreaks and the pain are simultaneous. I've been trying the remedies posted here on EC, and I'm having excellent results with the lysine 2000-4000mgs, sodium ascorbat e(2000-4000mgs, BHT(250mgs) combination daily. I had an outbreak today, but Its been nearly 2 mths. (outbreak free), and I had tried to stop the BHT and lower the lysine, sodium ascorbate. This protocol has greatly reduced my pain. I continue to take liver supporting herbs(dandelion and milk thistle). I am a supporter in full of treating the liver together with all conditions. Debra, when my symptoms are such that I have to increase the cortisol dosage;nausea, extreme weakness, headaches, and infections;it seems that those same symptoms are also that of liver dysfunction. I hope for you that finding the cause(s) of your own liver dysfunction and treating them may also bring you great relief. As for fatigue relief, I try numerous suggestions here again on EC. I have to be careful because some are overstimulating, causing anxiety, but I take smaller amounts of HP, iodine, and tyrosine for fatigue. For pain, fatigue, palpitations, neuropathy(also left hand and foot), shortness of breath, etc., I take potassium bicarbonate and potassium gluconate in divided doses, often 5000mgs daily at this time. I'm concerned about the causeneed for such a high dosage, but I have no negative side effects. I'm hopeful that in treating the liver and kidneys, that I may better balance this electolyte problem. Everyone is quite different in their needs. This is my best to you, Debra and all at EC, ConnieReplied By Dleigh57 (Buckhannon, Wv, Usa) on 10/19/2010
Oh, my gosh! Start taking 20,000 IU's of Vitamin D3 a day - do this right away. I had so many of your symptoms plus numb toes, constant earaches, arthritis. You name it, I had it. I went to my doctor just in time because he had gone to a seminar on Chronic Fatigue Syndrome and Fibromyalgia. He says that they have linked Vitamin D as one of the leading causes for these illnesses. The lowest Vitamin D level that you should have in your body is 30. Mine was almost at 8. My doctor was so alarmed that he called me on the Saturday right after Thanksgiving. I can't tell you how much better I feel. No more numb toes, earaches, severe aches and pains at allllllll of my joints, no more feeling like I constantly have the flu. I am so surprised at how much better I feel. I actually had to start out with 50,000 IU's a day for a month. Now I am down to 20,000 a day. And, in the winter I use a Happy Light. I love it!!! Hope this helps.Replied By Vetta (Northeast, Usa) on 10/20/2010
Did you mean 20,000 IU of D2? I noticed you started with 50,000 units and this is the standard for D2, not D3. Personally I favor the D3, but I thought 5000 IU/day was the upper limit. Congrats on finding such an easy and cheap solution!Replied By Catherine (Wellington, New Zealand) on 04/28/2011
Hi Debra, just a little note.. You mentioned a strong reaction to smells and this can be an indication of celiacs.. Have you checked for this??