Test for Ehler's Danlos Disease, Type III
★★★★☆
I'm a 55 year old woman, with Fibromyalgia, Chronic Fatigue Syndrome; also multiple injuries (3 ruptures discs; ) history of endometriosis, etc. My medical history was long and extensive-including 8 surgeries; a visit to Mayo clinic, etc.
Eventually, I added an FMS specialist to my pain management physician, and PT. Interestingly enough, he found the cause of my CFS, FMS, etc. I have a genetic disease, Ehler's Danlos Disease, type III. This explained all my diagnoses. Then my rheumatologist suggested a clinical trial of Famciclovir 250 mg., three times a day.
By the way, my history includes Epstein Barr disease, several years before my symptoms started. The Famciclovir is supposed to bolster the immune system.
I was quite skeptical, but tried it. Three years late, I'm taking mostly Advil, instead of daily Rx pain meds. I use those only occasionally, now. Supplements helping include: Magnesium Malate; D3; and D-Ribose.
I am able to exercise now-without hat automatically throwing me into a flare. I haven't had a real flare in three years. Sleep better, less brain fog, also.
So, my comfort level is much better, and disability less. There is no genetic cure for EDS III at this time, but the : clinical trial; Advil (joint and back pain, ) and neuropathy meds. (Lyrics;) plus gentle PT have helped. My family has been supportive, as well as friends as church.
Overall, I'm much better compared to ten years ago. My FMS Rheumatologist (and the research) tell me that my disease is sometimes the cause of FMS and or CFS. Having the correct diagnosis is critical in determining treatment.
General information about EDSIII is available online. A Rheumatologist who specializes in FMS can make the diagnosis. He/she can then determine treatment, if you have it.
So, if there is a question that EDSIII might be the primary cause of CFS or FMS, I would strongly recommend seeing one. My life has improved a lot since I started seeing the rheumatologist, and continues to improve.
Thyroxine
★★★★★
EC: Thyroxine is a medication used for the treatment of hypothyroidism (under active thyroid gland). It is used as replacement therapy in people having a lower thyroid function than normal.
Unstable Pelvic Girdle Connection
EC: This post is a little confusing, but we've figured out from the screen name that the doctor is referring to the cause of fibromyalgia. Sending it to Jason Uttley for response.
(Springville, Ut)
10/18/2009
I'm not certain that just an unstable pelvic girdle could cause all the symptoms of fibromyalgia (such as brain fog and numbness in the arms and hands), but it is definitely a piece to my puzzle. It's also possible that an unstable pelvic girdle is caused by fibro rather than the other way around.
I've been experiencing fibro-like symptoms for 7 years and have also been diagnosed with PCOS, but even when managing PCOS, I have had muscle pains, brain fog, migraines, and extreme fatigue.
During the pregnancy of my first child, I had terrible hip pain that I was told would go away when the baby was born. The pain became worse and was quite debilitating. My lower back and right hip socket would slide around and pop in and out of place. I saw an orthopedic surgeon who X-rayed me and told me nothing was wrong, then I saw a GP who said I had bursitis and gave me a cortisone shot in the hip which helped immensely. He also prescribed physical therapy which I believe strengthened my weakened hip muscles to the point where they could support the other structures and weight of my body normally and took my hip pain away.
Now, I have had a second child 10 months ago and had hip pain during the pregnancy, although not as severe during the pregnancy. Two months ago I started to work out regularly and recently started a jogging program (I am quite a bit overweight). I was able to get up to jogging a mile without stopping faster than I suspected I would, but I'm afraid I am going to have to stop and try a different approach since the hip and back pain, along with the joints sliding in and out of place have returned. I am also experiencing a lot of fatigue and pain up through my back and shoulderblades. I am going to try the hip strengthening exercises again before I try heavy weightlifting or jogging again, and I'll try to come back and report on how much it helps. Like I said above, I am not convinced that my hip problems are the source of all fibromyalgia symptoms. I don't think I was clear on this point in my history so I will say it now: I have had most fibro symptoms for 7 years (some I have had as long as I can remember, but not the debilitating ones like fatigue), but the hip problems only really began just over three years ago during my first full-term pregnancy. I did have some slight weakness in my right hip going back at least 8 years, but it was not noticeable except in a kickboxing class I took.
I am very interested in more information about what you have posted. Do you have a web link or any additional information about this?
Visualization
★★★★☆
Anyway, the posts here are helpful. I've one more thing to add though. Recently I tried visualization and imagery - imagining a bright white light over your body, esp. on areas where they ache - the results were quite good. Not 100 % cured but there was a considerable, or for me, great improvement. I also am doing some detoxification and reflexology for this and started to change a few things about my diet.
Here's some more info about visualization:
http://www.mothernature.com/Library/Bookshelf/Books/46/20.cfm
Hope this helps.
Vitamin D
(Anon, Usa)
02/17/2010
I'd like to second that. Symptoms of Vitamin D deficiency are similar to those of fibromyalgia- which I feel is a diagnosis often given when doctors just don't know what else it is. My sister presented these symptoms and was tested and found to be extremely deficient in Vitamin D. She is still working on recovering, since I believe this was one problem among others- but is worth looking into for anyone suffering. Especially since Vitamin D deficiency is more common than previously thought.
(Destin, Fl)
02/19/2010
Please note; thousands of "outdoor" people in Hawaii, Florida, Arizona, California (and other sunny places) have FM. I contracted it as a professional racing sailor in the South Seas (years under the sun daily).
(Buffalo, Ny)
06/16/2012
★☆☆☆☆
Vitamin D
★★★★☆
(Salyersville, Ky, USA)
09/20/2009
(Adelaide, South Australia, Australia)
10/25/2009
Is is necessary to have a test to establish the existing level of vitamin D3, (cholecalciferol). Dr.s Joseph Mercola, at www.mercola.com John Cannell, at http://vitaminDcouncil.org and Ben Kim at www.drbenkim.com all agree on the optimal range for vitamin D, which is 45 - 52 ng/ml, or 115 - 128 nmol/l.
I suggest that you check out those websites, and enter "vitamin D3; testing" in the searchbar at Mercola.com, then "vitamin D3; 1 hour lecture" and view it.
Good levels of magnesium, calcium, vitamin K2, and zinc are required for maximum utilisation of vitamin D3, so it is a good idea to have your levels of them checked, and supplemented, if necessary.
Google: "vitamin D3; natural sources; supplies" if not relying on sunlight, or appropriate artificial lights.
Vitamin D
(Brisbane, Australia)
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.
(Los Angeles, Calif Usa)
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!
(Slc, Ut)
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. Connie
(Seattle, Wa)
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
(Slc, Ut)
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.
(Brisbane, Australia)
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.
(Brisbane, Australia)
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.
(Slc, Ut)
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, Connie
(Slc, Ut)
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, Connie
(Buckhannon, Wv, Usa)
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.
(Northeast, Usa)
10/20/2010
(Wellington, New Zealand)
04/28/2011
Whey Protein
★★★★★
Fibromyalgia is a muscular problem and Protein Whey repairs muscles. A friend of mine told me to try it. I was totally shocked that it worked. I no longer felt the rain coming for the first time in 8 years. I no longer had any pain. After drinking it for 2 years they changed the product I was drinking. My pain returned. I called them in tears asking for more of the old supply, which they didn't have. I begged the lady to tell me the changes. She couldn't help but feel sorry for me and she sent me a list of all the changes so I could calculate what I needed to create the same thing I was drinking. After two weeks I figured out what I needed to do. I had to ADD more Amino Acids...
Once I did that my pain went away again permanently. So I was able to ween myself down to drinking it once every two weeks to keep the pain away. But that took a year to get to that point. I hope this helps you and anyone else reading this searching for relief.
(Somewhere, CA)
01/12/2023
Which amino acids did you add? Thanks