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Dieting with Obstacles Those with special health concerns such as diabetes, fibromyalgia, pregnancy, etc can post here for extra support and help.

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Old 10-19-2016, 05:28 PM   #121
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Hi all you other FM'ers! I haven't checked in here for awhile, mainly spending my time on other threads. I think I sometimes forget about this one since it is kind of hidden inside the Dieting With Obstacles forum.

Tomorrow is my appointment at the lab for all my updated thyroid tests (it will be 6 months now). I'm kind of nervous, but certainly hopeful that my antibodies will be down to normal. that the selenium supplementation works.

I've been doing Intermittent Fasting and eating a Very Low Carb <25 net grams, High Fat 100g, moderate protein 70g diet these past couple weeks and although my weight hasn't dropped much I am seeing puffiness and poochbelly diminished. My size 4's are fitting better, and I'm looking forward to getting back into my 2's. Really, I have maintained pretty close to my goal weight for almost 3 yrs now, so I can't complain at 52 and peri-menopausal. I've been getting some really good info from a leading nephrologist in Toronto who works with diabetic and insulin resistant obese patients. Although I am not obese, my folks are overweight and dealing with pre-diabetes and my mom has dementia so I'm looking into some effective strategies for this. I'm taking medium chain triglycerides for my brain and healing the ATP energy pathways in the mitochondria (an FM problem). They are taking it too because it helps with dementia and changing your body from a sugar burning machine into a fat burning machine.

For anyone interested in more info - real doctors and real scholarly published studies.
https://intensivedietarymanagement.com/
http://paleoleap.com/mct-oil-need-know/

Liana
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Old 11-22-2016, 03:16 PM   #122
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Hi anyone out there, just checking in to see if there are any other FM'ers active on the forums right now. I'm hanging out waiting for complete healing on an ankle surgery to take out metal support from a previous injury.
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Old 01-27-2017, 08:53 AM   #123
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Hiya, I have fibro and ME/CFS. The ME is really bad at the moment, I'm almost entirely bedbound, and while my pain levels aren't the worst they've been, they're getting set off by more things than usual: not only massage, but lying on the Miracle Ball. Does anyone else get this with fibro pain?
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Old 01-31-2017, 01:41 AM   #124
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Hi Esofia: here's a helpful site with links to support groups. http://patient.info/health/myalgic-e...-mecfs-leaflet
ME/CFS is a separate entity from FM. Do you know which condition is causing the main pain problem this round? If you read back in this thread you will see some links to published medical studies linking FM and autoimmune thyroid disease. It sounds like pressure is your main issue right now, perhaps you need to soothe pain with heat or cold (cold actually works better for me) or guided imagery, music therapy, other 'offbeat' but soothing redirection of sensitivities.
Although you cannot do much right now, is it possible to do gentle stretching while lying in bed (hamstring, knee tucks, lat stretches with arms above head holding on to the headboard, ankle and wrist circles, etc)? I like to start my day (whatever time it is that I manage to 'get up') with soothing music, and gentle stretches. I sleep with earplugs to make sure I don't wake more than necessary (my husband gets up a few times a night). On very painful days I have a soft faux-mink blanket that I stroke over my skin lightly in the painful areas. Sounds weird but it is very soothing pain relief too. Sometimes a piece of rabbit pelt will work if you don't want a blanket. (Or if you have a very calm willing pet, you can stroke them for therapeutic healing touch)

More on my thyroid tests: My thyroid antibodies at the first test were at 1100 U/ml and normal is under 60 U/ml, so that shows that my immune system was working on killing my thyroid. Hashimoto's Thyroiditis. After the Selenium and L-Tyrosine supplementation my retest 6 months later showed a drop of 63% to 407 U/ml!! So it WORKS with no other change in lifestyle. I will be getting another 6 month retest at the end of April - I am continuing supplementation from the October retest as studies show continued improvement long after the first 6 months. I'll have more to report then, but I hope to see lower antibody numbers. The other markers T3 & 4 and Free T3 & 4 showed slight improvements as well, although technically they were all still in the so-called 'normal' range originally (but not the optimal range). Maybe continued improvement there as well. Here's hoping! And, ankle is all healed up now.

Liana
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Old 01-31-2017, 01:55 PM   #125
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Thanks, but I'm not actually looking for ME-specific support groups. I've found the forums to be fairly awful places, to be honest, especially with regard to snake oil. I've had this condition twenty years, I'm used to it by now.

Whether you get diagnosed with CFS, ME or fibro depends on where you live and what the local politics are. In the US you are most likely to be diagnosed with fibro. In the UK you are most likely to be diagnosed with CFS, though there's a move towards calling it ME, especially from the patient side of things. Prof Julia Newton who runs a leading ME clinic in England has found that the misdiagnosis rate is about 50%, so it's all pretty hit or miss. One of these days there will be better and internationally agreed on diagnostic criteria, not to mention effective treatment! Meanwhile, apart from the location and politics, it seems to be either two related and heavily overlapping conditions, or subsets of the same condition, and which you are diagnosed with may come down to whether your fatigue is more of a problem or your pain is more of a problem. Most of the people I know who've had ME for many years also have a fibro diagnosis by now as well.

This is the first I've heard of ME pain being different from fibro pain: could you explain more? I'm already using cold, heat, a TENS machine and stretches, yep. Weirdly, heat is one of the things that can set off a pain flare at the moment if I overdo it, so when I use my heat lamp I have to be careful to keep the session short. My primary pain hotshot is in my left hip/gluteal area, and my secondary hotshot is in my left shoulder. Even massage that goes no higher than my knees can set them off, it's very strange. I took a break from playing the harp for a few months due to harp rental shenanigans, and no matter how I set up the new lever harp, it's setting off the pain too. I wish I knew more about how fibro pain works. I've tried courses of massage, but increasingly had the problem that it set off the pain. One of my support workers is a massage therapist and the home care agency was meant to be organising her doing very gentle massages for me, only they're messing us around about it and I think it's about to get cancelled.

The faux-mink thing reminds me of something I read in the Trigger Point Therapy Workbook, which is that when people with fibro are too sensitive for massage, you can start by using a skin brush on the painful areas. I never managed to keep up with that, I should find a way to try it out. I do have a lovely cat, who sat on me and insisted on an extended face-petting session this afternoon, but I don't think she'd be very lovely if I tried to rub her over my back!

Also I'm using one of the Chicks up for a Challenge threads to try to keep me motivated with the stretches and meditation.

My thyroid's checked regularly and is absolutely fine, but thanks for asking. We've got the hypermobility spectrum stuff running in my family, I've got a cousin with EDS and am slightly hypermobility myself.

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Old 01-31-2017, 01:58 PM   #126
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Also please don't send me to "what is ME?" pages that are pushing dangerous treatments which have been repeatedly debunked. It's as inappropriate as citing Andrew Wakefield on the topic of autism, and the studies were as scandalously badly done.
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Old 03-23-2017, 02:13 AM   #127
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Quote:
Originally Posted by Esofia View Post
Also please don't send me to "what is ME?" pages that are pushing dangerous treatments which have been repeatedly debunked. It's as inappropriate as citing Andrew Wakefield on the topic of autism, and the studies were as scandalously badly done.
Sorry Esofia, I didn't propose to link you to fake sites... the studies shown were from 2015, but I've just read that the PACE study has been debunked now.
Here's the MedScape latest from Jan 13/2017 verbatim:

Possible Mechanism Identified for 'Chronic Fatigue Syndrome'

Blockage of a key metabolic enzyme could explain the profound lack of energy and other symptoms experienced by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new research suggests.

The findings were published December 22, 2016, in the Journal of Clinical Investigation Insight by Řystein Fluge, MD, from the Department of Oncology and Medical Physics at Haukeland University Hospital, Bergen, Norway, and colleagues.

The study included 200 patients with ME/CFS, as defined by the 2003 Canadian Consensus Criteria, which requires the hallmark symptom of postexertional malaise, among others, to make the diagnosis of ME/CFS. The authors compared serum concentrations of 20 standard amino acids from the 200 patients with ME/CFS and 102 healthy control patients.

In the patients with ME/CFS, there was a specific reduction of amino acids that fuel oxidative metabolism, pointing to functional impairment of pyruvate dehydrogenase (PDH), a key enzyme for the conversion of carbohydrates to energy. Impairment of PDH could result in the cells switching to consumption of alternative fuels, causing a sudden shortage of energy in the muscles and a buildup of lactate, experienced by patients as a burning sensation in their muscles after even minor exertion.

"I think that at present our data are primarily telling us something about the ME/CFS disease. Our findings indicate an impaired function of the PDH enzyme complex, resulting in reduced flux of pyruvate to the [tricarboxylic acid (TCA)] cycle. Increased lactic acid accumulates upon limited exertion, and there is a compensatory use of alternative substrates to fuel the TCA cycle. So, the results indicate an impaired mitochondrial PDH complex function, we believe induced by the immune system," Dr Fluge told Medscape Medical News.

The model, if correct, has implications for prescribing exercise for patients with ME/CFS. "Based on the findings in the study, we can understand why patients need to stay at rest, minimizing the energy deficiency and reducing the symptoms caused by lactic acid accumulation.... The value of doing exercise should, however, not be underestimated, and the level of activity tolerated will depend on the severity of the disease," Dr Fluge said.

He added, "An ME/CFS patient's ability to handle exercise is very individual. Generally, I think the physicians should listen carefully to the patients, and find the optimal activity level through pacing, to avoid 'crashing' with the resulting major symptom increase that can last for weeks and months."

Asked to comment, Anthony L. Komaroff, MD, professor of medicine at Harvard University, Boston, Massachusetts, and editor-in-chief of the Harvard Health Letter, told Medscape Medical News, "This is the latest of many research studies that are pursuing a simple idea: That the human being who says 'I don't have enough energy' could have a problem with their cells producing enough energy.... It adds to a large literature indicating that cellular energy metabolism is abnormal in patients with ME/CFS."

However, he cautioned that the investigators inferred the abnormality in PDH, rather than directly measuring it, and that although "[t]heir argument seems plausible...I wouldn't be convinced until a second study by other investigators, studying other patients with ME/CFS, confirmed this."

Dr Komaroff also said, "What is urgently needed are some testable hypotheses that would explain the several different reported abnormalities in energy metabolism [in ME/CFS]."

Effect Seen Primarily in Women

Dr Fluge and colleagues found different results between women and men. Compared with control patients, the 162 women with ME/CFS in the sample had significantly reduced levels of six specific amino acids (isoleucine, leucine, lysine, phenylalanine, tryptophan, and tyrosine) that enter the oxidation pathway as acetyl-CoA, which fuels the TCA cycle directly and independently of PDH (P < .001 for isoleucine, leucine, phenylalanine, and tyrosine, and P = .001 and .009 for lysine and tryptophan, respectively). This finding suggests that the PDH enzyme is not functioning as it should, the authors suggest.

In contrast, the 38 men with ME/CFS had slight but insignificant reductions in serum tyrosine and phenylalanine compared with control patients, but also had significantly elevated concentrations of 3-methylhistidine, a marker of endogenous protein catabolism (P = .003 compared with healthy men). That difference was not seen in the women.

An explanation for this, Dr Fluge said, is that males use muscle tissue as a source of amino acids, whereas females, who have less muscle mass, preferentially use serum free amino acids as fuel.

Nevertheless, he added, "the PDH impairment seems to be the same in both sexes, with no gender difference in up-regulation of mRNA for the PDH inhibitors PDK1, PDK2, PDK4, and SIRT4 in peripheral blood mononuclear cells of the ME/CFS patients."

Accounting for Deconditioning

There are several reasons why the authors believe their findings are not a result of deconditioning resulting from inactivity, a factor that potentially confounds all ME/CFS studies. For one, the amino acid levels did not correspond to the number of steps the patients took in the 7 days or 24 hours before the study, as measured by activity monitors, nor to their overall illness severity.

Moreover, Dr Fluge said, the female/male differences argue against the deconditioning explanation, as their physical activity levels were similar. In addition, the specific amino acid changes found in the patients with ME/CFS "do not resemble data from other articles analyzing metabolism of inactivity."

Therefore, he told Medscape Medical News, "our conclusion is that the specific pattern observed is not primarily due to inactivity or deconditioning, but rather reflects an altered energy metabolism with alternative use of substrates to fuel the TCA cycle, due to the impaired oxidation of carbohydrates."

Dr Komaroff commented, "They did not find that the level of physical activity of their ME/CFS patients affected their results, which suggests that deconditioning was not a factor. However, it does not appear that their healthy control subjects were matched to the cases by their level of physical activity. So it seems possible that deconditioning might confound the results."

Implications for Treatment?

Most of the 200 patients in this study are participants in one of two ongoing trials, RituxME and CycloME, that Dr Fluge, his colleague Olav Mella, MD, and their team are conducting to see whether the B-cell-depleting cancer drugs rituximab and cyclophosphamide can alleviate the symptoms of ME/CFS.

They came to this by accident: Both Dr Fluge and Dr Mella are oncologists, and they happened to notice that when they gave rituximab to patients with lymphoma with ME/CFS, their patients' fatigue symptoms diminished. They subsequently conducted a small, randomized, placebo-controlled trial that appeared to confirm the observation.

Dr Fluge told Medscape Medical News, "An important scientific question, if the RituxME trial shows a positive result, is to understand the link between the disturbed immune response and the impaired energy metabolism. We presently hypothesize that in a subgroup of patients, a signaling pathway is disturbed by an autoantibody."

Dr Komaroff adds, "If we understand the biochemistry of making energy molecules, then possibly supplements that restore levels of energy molecules that are measurably low are a theoretical way this research could point to treatments."

End of article.

Difference in FM and ME/CFS =
"2016, Reductions in circulating levels of IL-16, IL-7 and VEGF-A in myalgic encephalomyelitis/chronic fatigue syndrome" (another Medscape article)
ABSTRACT: "Recently, differences in the levels of various chemokines and cytokines were reported in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as compared with controls. Moreover, the analyte profile differed between chronic ME/CFS patients of long duration versus patients with disease of less than 3years. In the current study, we measured the plasma levels of 34 cytokines, chemokines and growth factors in 100 chronic ME/CFS patients of long duration and in 79 gender and age-matched controls. We observed highly significant reductions in the concentration of circulating interleukin (IL)-16, IL-7, and Vascular Endothelial Growth Factor A (VEGF-A) in ME/CFS patients...In combination with previous data, our work suggests that the clustered reduction of IL-7, IL-16 and VEGF-A may have physiological relevance to ME/CFS disease. This profile is ME/CFS-specific since measurement of the same analytes present in chronic infectious and autoimmune liver diseases, where persistent fatigue is also a major symptom, failed to demonstrate the same changes...[5]

Fibromyalgia: Cytokines IL-1beta, IL-6 and TNF-alpha are involved with central and peripheral neuropathic pain which is experienced by Fibromyalgia patients. (A search of http://www.medscape.com/viewarticle/470556_8 may be necessary to view article or a Medscape login)

Different cytokines involved means different diagnoses. So you can have one, or the other, or both.

Liana

Sorry I haven't been on the site for quite a while... life got a bit busy.
Hope you are getting some relief.
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Old 04-21-2017, 11:45 AM   #128
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Hello everyone!

I'm a newbie with Fibromyalgia and CFS. I started on Atkins this past Tuesday and have been trying to walk for exercise. I can't do too much too fast or I'll be out of commission for a while. I have a fitbit so I'm starting with 2,000 steps at least and hopefully can work myself up from there.

I look forward to chatting with you guys.
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Old 06-07-2017, 07:36 PM   #129
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Hi Tonya.az sorry I haven't been on here for a while. Work has been getting crazy and my senior parents have some pretty serious health issues I have been dealing with. Hope your walking plan is going well! You probably already know what to do - remembering not to get too carried away on your 'feeling better' days .
Atkins is a very useful diet in the health situation you are dealing with. I also lost my extra weight and maintain with low carb (preferably below 50 most days, on some below 100 net carbs). Many find going totally gluten free has helped as Celiac disease and fibromyalgia have been linked in newer peer reviewed and published studies.

Right now I am only doing about 7000 steps (mainly at work) and haven't hit my goal of 9500 for a while now, but I work nights and my sleep is not what it should be as I also have a 'day life' to take care of, lol. I want to get back to my Aquafit classes but the timing of the classes hasn't been the best for me.

Don't lose faith... a few of us check in here once in a while, but it isn't easy to find this thread in the forum list as one has to know where to look.

Cheers!
Liana
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