You may want to get your vitamin D level checked... and a DEXA scan. I have a low vitamin D level and osteopenia. This is common in both CFS & fibro patients.
I don't know what my Vitamin D level is. I don't have problems with sleep. At night I sleep around 10-12 hours. I have from day i when I got CFS. I am not sleepy at all in the day. Just my fatigue level is severe.
Postie
btw... the treatment that I'm doing is targeting those pathogens that contribute and/or cause the immune dysfunction and/or autoimmune response. It is very similiar to treatment for lyme disease... and since the mycoplasmas in my body are dying off, I feel worse. This is what lyme patients go through as well. At least I know that means that this treatment is working and although it can make me feel worse... I have noticed some great progress. For one thing, I can eat wheat again !!! = )
You bet ! I added some additional info for those of you who may be interested. Dr. Nicholson is now working full-time. His wife, who also has CFS, is also working. This man's resume is one of the most impressive resumes you will ever read.
"Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), and Fibromyalgia Syndrome (FMS) patients suffer from complex overlapping signs and symptoms."
"Previously we examined patients with chronic illnesses for the presence of mycoplasmal infections. We found that about one half of patients with Gulf War Illness and two third of patients with CFS/ME and FMS were positive for mycoplasmal infections in their blood."
"Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses. For example, patients with Lyme Disease, caused by intracellular Borrelia infections, have been diagnosed with CFS/ME. Also, CFS/ME and FMS patients can have intracellular Chlamydia species infections. These patients can also have infections by other bacteria that enter their bodies through 'leaky gut' problems. Chronically ill patients often have inflammatory bowel syndrome and other gut problems, and this can allow pathogenic bacteria to enter their systems"
source: http://www.immed.org/illness/fatigue_illness_research.html
Dr. Nicholson's bio: http://www.immed.org/reachus.htm
Thanks for your response.
"PlatletGal, are you satified with the CFS diagnosis? Do you think you really have lupus instead?"
I am very satisfied with the CFS diagnosis. I had CFS symptoms after having a severe case of mono when I was only 18. It took many years for physicians to diagnose me. I remember reading about CFS and thinking, "this is me !". There is now a test to diagnose CFS. The test is still in the research phase.... for more info, google "Red Labs USA".
A low thyroid is sooo common in CFS and fibro patients and yes, some of us do have autoimmunity issues. My Endocrinologist told me that although I have pleurisy, a common symptom of lupus, that I did not have lupus. What is happening is many of us with these syndromes and autoimmune diseases, have symptoms of other illnesses. I believe Dr. Garth Nicholson, a CFS patient, explains this very well:
"Chronic infections are important in a variety of autoimmune and neurodegenerative diseases, such as MS, Lupus (SLE), among others, and neurodegenerative diseases, such as Amyotrophic Lateral Sclerosis (ALS). We previously proposed that many and perhaps a majority of these patients might be suffering from mycoplasmal and other infections that can cause, in part, their complex signs and symptoms. Systemic chronic infections (caused by bacteria such as Mycoplasma, Chlamydia, Borrelia, Brucella, etc. or viruses such as CMV, HHV6, EV or enterovirus, etc.) can invade virtually every human tissue and can compromise the immune system, permitting opportunistic infections by other bacteria, viruses, fungi and yeast. Mycoplasma, Chlamydia, Borrelia, Rickettsia and other pathogens can also directly damage and kill nerve cells in a process called apoptosis, resulting in nervous system degeneration.
>>>>>> When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate an autoimmune response. <<<<< This can occur by different mechanisms. One mechanism that has intrigued us is that when certain microorganisms, such as certain species of mycoplasmas, exit from invaded cells, they carry part of the host cell membrane on their surface. This may trigger the immune system to respond to the host antigens on the foreign microorganism. Alternatively, some microorganisms display surface antigens that mimic host cell surface antigens, and these may stimulate autoimmune responses."
source: http://www.immed.org/illness/autoimmune_illness_research.html
whats your VIT D level? my aches and pains and sensitive diminished so my therapy of synthroid50 mcg with normal levels and D 3 50000 unit is keeping me fairly lively however i have insomnia i'm not tired i'm not energetic i'm just busy doing nothing like now its 11 40 pm i have to go to work at 8 am and can't simmer down taking soma 350 mg to put me to rest so its weird but i have intercostal chondritis my collar bones and ribs hurt joints are sensitive if you touch me but dr says i have more of a myofacial pain ? tks
I have hypothryroid. I am on Synthroid. My thyroid bottomed out at 199 when I became sick with CFS. It took 3 years to get to where it's supposed to be. I don't feel any difference now from when I did at 199.
My CFS specialist said it's not related to thyroid problem. If I had just thyroid problem, the med would work. Mine is CFS.
Postie
My Rheumy already said I have a connective tissue disease. He said the rash that I have on my face and neck is a conective tissue disease. He said it points toward Lupus and not Rosacea. He said he thinks have Lupus but not saying right now. I've been with him for three years now. I don't have enough symptoms for Lupus.
If you have CFS for less than 5 years, some people recover. But the longer you have it, then you really don't recover.
My specialist was CFS Dr. Bell up in Lyndonville, NY. He said I have it too severe and have had it too long and I will stay this way.
Postie
hi i cna't remember what numbers were but they were all way above the norm i wanna say 800 ana ? but the first endo said those are just markers that i have the antibodies or pre cursers to some sort of artheritis and or an autoimmune aks hashimoto thyroiditis
so i would again say those with CFS or FM JUMP on the VIT D and ask for synthyroid trial and after 3 days of synthryoid 50 mcg and vit D i almost feel normal now i would try taking digestive enzymes walmart has them look for amelyase lipase and protease these enzymes are part of our filtering system liver gallbladder spleen pancreasis now pomegranit juice is another big antioxident can't hurt to try if your organs are not making the right amount of enzymes aka thyroid we need a booster to balance out the levels now i was just reading on webmed or medicinenet.com lots of hypo thyroid things and so take a peek can't hurt
Does your doctor think you might have lupus or a connective tisuue disease?
Postie, 10 years is a long time to have CFS. I've read that CFS usually last only 5 years.
PlatletGal, are you satified with the CFS diagnosis? Do you think you really have lupus instead?
Add me to the list of people with either CFS or fibro who have a positive ANA titer. Mine is also very high ---- 1:640 (speckled pattern).
I have had CFS for 10 years and my ANA is 640 with patterns of always speckled and homogeneous. I have more CFS than I do fibro. I have the fatigue which is severe. I have secondary Raynauds related to my illness. Because of low blood volume my feet turn color when I'm sitting. But when I'm in the cold, my fingers don't turn blue and white. I have the rash on my face, neck and chest.
Ever since I got CFS my ANA was always positive. It used to always be either 160 or 320 and this year has went to 640.
The Rheumatologist thinks my rash is malar but don't have enough of lupus symptoms. He said I do have a connective tissue disease. My body attacks my white count so it's always low.
Postie
Thanks for your suggestions. I've been to a chiropractor for 3 months. My insurance has paid for all they are going to pay for that treatment. I am also low in Vit. D and am on 100,000 IU/week. I'm on my third month of that.
What does Pomegranet juice do for you? I am really into natural supplements, but whatever I have has kicked me good. I've been sick for over a year. First it was my gallbladder that quit working, then they discovered hydronephrosis and and obstruction in my ureter. Then the elevated ANA along with all of these crazy symptoms.
What was your ANA level, and what was the pattern?
KaraJo
i have been dealing with alot of the samo symptoms and you may have seen my posts first off i would also recommend seeing a chiropractor and make sure your spine is in proper aligment since you mention alot of nerve type pain i would see an endocrinologist my ANA was elevated and they suspected artheritis or an auto immune AKA Hashimoto thyroiditis i choked on bacon almost died and the ENT found the goitor soo i have all the sympptoms of hypo thyroid and the first endo said your normal thyroid and i said how is that i am growing goitors and feel so yucky getting fat freezing or sweating insomnia or the opposite so my new ENDO said i'm going to put your thyroid to sleep and its been 3 weeks and alot of my fibro and hypo symptoms are gone so the dr also did a VIT D 3 level and people with hypo symptoms like us have a very LOW d i'm on 50 000 iu if your D is high it means hyper thryoid soo i would ask your DR to do a VIT D test and ask to see an endocrinologist or try vit d3 at walmart also i am drinking 100 % Pomegranet juice 4 oz daily
Thanks for your comment.
I have done plenty of research on the subject. The only meds I'm on is Armour Thyroid and Vit. D. I do takes tons of vitamins and herbs trying to get well. But I've been sick with them and sicker without them. Trust me, I'm almost dead w/o them.
Thanks for the internet site. I'll check it out!!
God bless,
KaraJo
Thanks for you post. The Rheumatologist looked at the area on my cheeks and said it was not a dicoid, so I asked her about malar. She said I didn't have enough critiria to diagnosis me with Lupus. I'm aware that it takes sometimes years for a diagnosis. I've just been sick for a little over a year. I appreciate your expert advise.
God bless,
KaraJo
Well I'm sure you're searching the web, I found this site which appears to have some good information. Maybe research the drugs you're taking and make sure it's not drug induced. Otherwise, I would insist your doctor check you out further!!!
http://www.labtestsonline.org/understanding/analytes/ana/test.html
The high ANA pattern is probably due to the Raynard's, although 29% of fibromyalgia patients do have a positive ANA titer (normally not that high).
You say you have a red rash on your cheeks... have your physicians ruled out lupus ?