• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Trying CoQ10 again

    The doctor said to take 30 mg of Coq10 and 5 mg of NADH daily, and I don't remember how many mg of OH Tryptophan at night. I haven't taken the tryptophan because I read it increases serotonin, and SSRI antidepressants are very bad for me (make me depressed, sobbing) so I am wary. I have noticed...
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    Yoga

    This may have already been posted elsewhere on the forum. A new study found that tai chi can improve fibromyalgia symptoms by as much as 90%. Since many people have both CFS and fibro, it could be a significant finding. http://www.nytimes.com/2010/08/19/health/19taichi.html I've been to tired...
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    Trying CoQ10 again

    I've been taking 30 mg a day for about two months on the advice of my CFS doctor. I haven't noticed any difference, good or bad.
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    Who has got worse as the years roll on?

    I have had CFS for over 25 years and it has gotten steadily worse over the years. I have had no up and down periods at all, just gradual and constant worsening.
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    CFS doctors in NY/NJ that take Aetna

    Dr. Levine's first visit is $350 and follow up visits are $100. The bloodwork was ordered through my PCP so it was free. I don't know your financial situation, but for me that was very affordable, and I am on Medicaid.
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    Sensitivity to Meds & Anesthesia: Dental Question

    I tend to be sensitive to meds, like antidepressants for instance, but I have never had any problems with the medications used in a dental office. I recently had a root canal and crown, and I have also had "sleep dentistry" where you are essentially out, and the dentist can to many fillings at...
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    Does anyone NOT have flu-like malaise?

    I'm often slightly confused by the symptoms that others describe. I just feel utterly exhausted all the time (sometimes a little better, sometimes a little worse, but it never goes away.) It's so bad I have given up almost any normal activities. I also have constant aches and pains, but compared...
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    Sensory Overload Problems

    There's another thread (the need for quietness and solitude thread) that also brings up the issue that some CFS symptoms seem similar to autism spectrum symptoms. I was diagnosed with Asperger's Syndrome recently, which I have had my whole life (it's not possible as far as I know to suddenly...
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    Energy saving tips for the moderately severe patient

    I find it very hard to try to do things that help me rest if I am out. I don't have a car, because i can't afford one, and even if I could it would be too difficult to concentrate to drive. If I want to go into the city, I have to take a bus, then a ferry, then the subway or another bus. It...
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    1st "Disability Doctor" Visit - AWFUL!!!

    When I went through this process 10 years ago (and was turned down), it was the judge who asked for the psych evaluation, after I had already had the hearing with him. He actually did that because he was looking for a reason to approve me, and if I could have come up with a psych diagnosis it...
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    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Victoria, I find it very hard to follow the forum threads too, for what it's worth. It makes me feel overwhelmed.
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    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    I don't think it's possible to generalize about a condition that is as diverse from person to person as Asperger's Syndrome is. In addition, women with Asperger's are less likely to fit the stereotypical symptom profile. I posted in this thread a couple of months ago, and I have since been...
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    Possible money-makers for chronics

    I think that making any money with Google ads is very difficult. I had a website for a few years that got about 500 to 600 visitors a day, and the revenue I made from Google ads was less than the $5 a month hosting fee for the website. Plus they only pay once you have accumulated $100 of...
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    1st "Disability Doctor" Visit - AWFUL!!!

    I'm sorry it was so awful. But I think that as far as proving your case goes, you can be heartened by the fact that he talked to you at length about your pain, and then actually tested for it, and since you visibly experienced so much pain, it sounds like you passed with flying colors as far as...
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    Dr. Lerner patient update..

    Thank you for your clarification and input. I had a discussion about this scale on another website where I was told I was a 4 because I can sit for six hours. But that's the problem: the scale makes no sense. I can't walk for 1 - 2 hours a day, so I don't qualify as a 2, so that would put me at...
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    Dr. Lerner patient update..

    I agree. I find that index absurd. Items 2, 3, and 4 make no distiction between sitting and walking! I can sit in a comfortable chair for six hours, but I would find it very difficult to walk for even 30 minutes, and certainly couldn't walk 30 minutes every day. Yet according to that scale I...
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    CBT and GET The patients have their say

    My experience is from a slightly different perspective. I have seen a number of psychiatrists, psychologists and social workers over the years, not for CFS, which I knew was clearly not a psychological condition, but for anxiety and depression. You'd think they'd be better at treating actual...
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    What do people do for health insurance?

    Medicaid eligibility varies by state. For instance, in New York State, there's a program called Family Health Plus (which is run by Medicaid), that is for people whose income is low but too high to qualify for Medicaid.
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    Seriouse sleep disurbance and ME / CFS nutrition value

    I was prescribed amitriptyline several years ago by a rheumatologist, not for depression but for fibromyalgia and CFS. I did not help me sleep but it made me feel extremely sluggish throughout the day, like I was carrying several wet blankets on my back. Since the last thing I needed was to feel...
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    laundry issues

    I don't have the same problem that you describe regarding sensitivity to fragrances, it's just very hard for me to do the laundry because I would have to push a cart on foot to the laundromat (about six blocks), and that's just no longer possible for me. What I do most of the time is just wash...
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    Depression

    I guess everyone has their own philosophies and personal narratives to try to explain how and why things happen the way they do. I wouldn't want to discourage anyone from believing whatever they find helpful. But for me personally, it's not helpful to look for some underlying intent or meaning...
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    Depression

    Thank you for all your kind replies. I have tried many antidepressants in the past. Most of them (mainly SSRIs) made me more depressed, in the same stark and sudden way that Tammie and Carrigon described, including St. John's Wort. Wellbutrin just made me feel uncomfortably strange, like I was...
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    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    I have never been diagnosed with Asperger's. I even told a therapist (clinical psychologist) about a year ago that I thougt I might have at least some mild aspie traits, but she insisted I had a schizotypal personality, which really made me feel discouraged because it doeasn't fit at all...
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    Depression

    I know that talking about depression and CFS/ME can be a touchy subject, because for so long so many of us were incorrectly and frustratingly told that what we had was not CFS but depression (and many "experts" still insist on it). But some of us do have both, and dealing with the isolation...
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    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    I think that's a very interesting issue. I wonder how many people here consider themselves to be slightly aspie? I've always found it very difficult to be around people; just their presence makes me anxious. I almost never look people in the eye when I talk to them because it feels overwhelming...
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    Blood Draws/Good tips for getting through them!

    I don't have the problems you describe, I'm just terrified of blood tests because I find them very painful. For the pain, you can ask the doc for a prescription of a numbing cream called Emla. (It's rather strong so maybe try a small amount first to see how it affects you.) It's usually only...
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    The Why We Don't Catch Colds Thread aka The George/Gerwyn Tag Team

    This is what Dr. Klimas said about this issue (I don't exactly understand it but I'm posting it thinking it could be a useful addition): Q: Do you believe there could be a connection between the effect of ME/CFS on the immune system and the fact that I and other patients I know don't seem to...
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    Do you look markedly younger than your age?

    Interesting that this is common to so many people here. I looked young for my age for a long time (have had CFS for 25 yrs), but not anymore. I am 46 and have gray hair and an ashen look and dark circles, so if anything I look older. I have never worn make up. But throughout my 30s people...
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    Meals when cooking is out of the question

    The meal I eat most often is pasta with cheese and peas. I throw in frozen peas with the pasta while it's cooking, then drain the pasta and peas and mix them with shredded cheddar cheese (the cheese melts with the heat of the pasta). It's one less pot to wash than making separate tomato sauce...
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    Baths and Showers

    I find it exhausting to take showers, and baths are out of the question. I only shower maybe once a week, or less (since I don't have a job to go to I don't have to be perfectly pristine...). About 10 years ago I had to cut my long hair because it was too much effort to wash. Since 1 1/2 years...