Sallysblooms Posted February 28, 2011 Report Share Posted February 28, 2011 If you find a good doctor, they can help with supplements for your immune system so you lessen the viral load. Not all doctors know which is shameful.Every doctor should be able to help with good supplements and take good blood tests to check B12, Vit D, etc. This forum will help you understand. http://forums.aboutmecfs.org/forum.php Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted February 28, 2011 Report Share Posted February 28, 2011 I just got my lexapro, i was going to do the celexa, but i have already had lexapro in the past so i know how ill react to it. They do have the lines, so i can break them in halfs, then fourths thank gosh. last time i started on 10MG! omg i thought i was going to die! i didnt know it was POTS at the time LOL but after a couple weeks the stuff was a miracle drug for my fatigue and dizziness. I started driving again. If you can put up with a couple weeks of loopy and crazy feelings, it will all go away and really help you with the CFS.I am just REALLY not looking forward to starting it, even at a low dose. I think its the phobia of meds, but i just remember last time and it makes me exhausted thinking about it haha Quote Link to comment Share on other sites More sharing options...
Lovebug Posted March 2, 2011 Report Share Posted March 2, 2011 I just got my lexapro, i was going to do the celexa, but i have already had lexapro in the past so i know how ill react to it. They do have the lines, so i can break them in halfs, then fourths thank gosh. last time i started on 10MG! omg i thought i was going to die! i didnt know it was POTS at the time LOL but after a couple weeks the stuff was a miracle drug for my fatigue and dizziness. I started driving again. If you can put up with a couple weeks of loopy and crazy feelings, it will all go away and really help you with the CFS.I am just REALLY not looking forward to starting it, even at a low dose. I think its the phobia of meds, but i just remember last time and it makes me exhausted thinking about it hahaI took Lexapro a few years ago (before I got sick) and got off after 6 months b/c I wasn't "depressed" anymore. I took it b/c my dad passed away. Well, it didn't take long to realize I needed it again so I got back on it and it never did the same for me as it did the first time. I eventually got numb to life...quit taking it. Fast foward a few years and my cardiologist put me on Celexa. Since I'm so sensitive to meds I got the liquid form and took 2mg of the 10mg prescribed. That was 4 months ago and I've already worked myself up to a whooping 2.5mg! LOL!! My advice...just go slow and increase it little by little. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 28, 2011 Report Share Posted November 28, 2011 Hi there! Are you talking about the symptom or the syndrome? The syndrome itself has a lot more symptoms than just chronic fatigue and is a seperate diagnosis. I got mine about three years after pOTS.Mine is from chronic EBV. I have used anti vitals and coq10. Also use LDN. Just need to work up to a theraputic dose. Also anti depressants have helped my fatigue and dizziness in the past.Sorry if you already knew the differences, there are many people who don't. good luck hope you find relief soon!What's LDN? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 28, 2011 Report Share Posted November 28, 2011 Low Dose Naltrexone Quote Link to comment Share on other sites More sharing options...
targs66 Posted November 29, 2011 Report Share Posted November 29, 2011 I've been told I have CFS for years. I was always quite "high-functioning" (or so I was told) so doctors wouldn't believe me - there was this attitude of "of course you're tired" because I had such a high pressure job. The fatigue has always been devastating, and the only thing that got me going was real stress - a lifestyle that, I'm sure, has put me in the position I'm in today.I feel like I have tried every supplement available to mankind to no avail, but the biggest problem is that I am so intolerant of just about everything. I wonder if it's an allergic/mast cell kind of reaction: I end up feeling so much worse after I take things that I just can't force myself to do it anymore. I tried the regime prescribed by Dr. Sarah Myhill (in Wales) which is based on a large number of supplements (vitamins and minerals), and unfortunately, it made me worse. That's not to say anything against her - I know she has helped many patients, and she was one of the most caring doctors I've ever met - but it did not work for me.I hope you can find some help for your CFS; I do think that addressing it early with whatever works for you makes a big difference. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 30, 2011 Report Share Posted November 30, 2011 A new study suggests that CFS patients with POTS and general POTS patients are identical in clinical presentations and that most POTS patients and POTS-CFS patients were interchangable:http://www.ncbi.nlm.nih.gov/pubmed/21906029 Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 1, 2011 Report Share Posted December 1, 2011 Leigh, i too got POTS through pregnancy but before i was pregnant i had a bit of chronic fatigue going on plus IBS. My initial BP was high standing and low lying but now after a year my BP wont go high anymore. I think i have adrenal fatigue. Id be very interested to talk with you more if youre available? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 1, 2011 Report Share Posted December 1, 2011 A new study suggests that CFS patients with POTS and general POTS patients are identical in clinical presentations and that most POTS patients and POTS-CFS patients were interchangable:http://www.ncbi.nlm....pubmed/21906029I have heard that too but also heard that with the CFS, it was actually more autoimmune issues going on, hence the swollen glands and fatigue. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 1, 2011 Report Share Posted December 1, 2011 In CFS there is also tests that demonstrate impaired immune function and there inflammatory markers in the spinal fluid. But what is important here is that the study above demonstrated that all POTS patients viewed had similar clinical presentation including swollen glans and fatigue. Fatigue ofcourse is a cardinal symptom of POTS. Both POTS patients and CFS patients have reduced blood flow to the brain and increased cerebral lactate. The autonomic profiles in CFS can be indentical to POTS or NMH. The autoimmune hypothesis is actually quite new (norwegian study). Quote Link to comment Share on other sites More sharing options...
corina Posted December 1, 2011 Report Share Posted December 1, 2011 rama, i read the norwegian study just last weak. i think it's promising that studies keep coming, at leas they are looking for answers. thanks for sharing the links! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 28, 2012 Report Share Posted March 28, 2012 Hi there! Are you talking about the symptom or the syndrome? The syndrome itself has a lot more symptoms than just chronic fatigue and is a seperate diagnosis. I got mine about three years after pOTS.Mine is from chronic EBV. I have used anti vitals and coq10. Also use LDN. Just need to work up to a theraputic dose. Also anti depressants have helped my fatigue and dizziness in the past.Sorry if you already knew the differences, there are many people who don't. good luck hope you find relief soon!Hi Dani,How did you find a good CF specialist, I would like to try one? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 28, 2012 Report Share Posted March 28, 2012 However I might have pulmonary arterial hypertension so maybe that's why I am exhausted.Do you still think you have PAH? Quote Link to comment Share on other sites More sharing options...
martiz Posted March 28, 2012 Report Share Posted March 28, 2012 I believe that ME is the same as CFIDS but not the same as chronic fatigue. Many illnesses have chronic fatigue. Myalgic encephalomyelitis: International Consensus Criteria published 8/11 in Journal of Internal Medicine:"The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented."This is the short version. Then the link to the long version (from the original publication).MartiMyalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, cardiovascular abnormalities, impaired cellular energy metabolism and ion transport.A patient will meet the criteria for postexertional neuroimmune exhaustion -Category A,at least one symptom from three neurological impairment categories, -Category Bat least one symptom from three immune/gastro-intestinal/genitourinary impairment categories -Category Cand at least one symptom from energy metabolism/transport impairments -Category D.Myalgic encephalomyelitis: international consensus criteriaPostexertional neuroimmune exhaustion, Neurological impairments {pain, sleep disturbances,A. Postexertional neuroimmune exhaustion (PENE pen’-e)Marked, rapid physical and/or cognitive fatigability in response to exertionPostexertional symptom exacerbationPostexertional exhaustion -immediate or delayed by hours or daysRecovery period is prolongedLow threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity levelB. Neurological impairmentsNeurocognitive impairmentsPainSleep disturbanceNeurosensory, perceptual and motor disturbancesC. Immune, gastro-intestinal and genitourinary ImpairmentsFlu-like symptoms may be recurrent or chronic and activate or worsen with exertionSusceptibility to viral infections with prolonged recovery periodsGastro-intestinal tractGenitourinarySensitivities to food, medications, odours or chemicalsD. Energy production/transportation impairments:Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitation with or without arrhythmiasRespiratoryLoss of thermostatic stabilityIntolerance of extremes of temperatureLink to the original document:http://onlinelibrary...2428.x/abstract Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 28, 2012 Report Share Posted March 28, 2012 I was diagnosed with CFS 7 years ago. I have never been treated for it. The only comment I got from my doctor, was that he was surprised I graduated from College. I graduated 3 years after being diagnosed with CFS and Fibromyalgia. My symptoms are chronic fatigue, low grade fever, chronic sore throat, muscle weakness, hair loss, eye pain, tinnitus, alcohol intolerance, difficulty swallowing, parasthesias, propioception difficulties, emotional lability, brain fog/ memory problems, chronic muscoskeletal pain, sleep problems, gastrointestinal issues, sensitivities to medications, temperature dysregulation/intolerance, breathing issues, orthostatic intolerance, POTS, and chest pain.I do not know if the diagnosis of CFS is correct, as no other doctors, I have seen since then have even suggested it as a possible cause of my symptoms. I was diagnosed with Fibromyalgia with the trigger point test. I have also, never told any other doctors about the diagnosis of CFS and Fibromyalgia, due to not wanting to be dismissed about my symptoms. Most of my doctors nowadays seem to think most of my issues are neurological in nature, and are most likely caused by a neurotransmitter disorder similar to Parkinsons. Quote Link to comment Share on other sites More sharing options...
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