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

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.

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?

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

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.

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 Øystein 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.

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.

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

I am starting IP tomorrow, will I feel better on this? I have pain so bad, I am sure you all understand...

Not sure, is it quite processed? I suggest logging your main symptoms once a week, giving them a number out of ten, plus what meds and/or supplements you are in, if that changes.

I've just looked at my log and realised that I've had a surprisingly good two weeks of it in terms of fibro pain, even if the rest has been patchy due to being tried on various different meds. I changed two things a fortnight ago. One is that I started using powdered magnesium drinks, called Calmeze and Muscleze (one is kept at my flat, one at my partner's). I adjusted the rest of my supplememts so I should still be getting about the same amount of various nutrients, but maybe it absorbs better, plus they have a few extras.

The other thing is that I made up sixty little snack packs, generally just over an ounce. I did a big supermarket order and used various combinations of these:

Almonds (that was a bigger bag, so they turn up more)
Walnuts
Pecans
Hazelnuts
Cashews, dry roasted
Pumpkin seeds, dry roasted
Sunflower seeds, dry roasted
Raisins
Dates
Cranberries
Dried cherries
Cacao nibs
Salt (I have dysautonomia, I need loads of salt. Skip this bit if you need to avoid it)

I roasted the seeds and cashews in a pan, put them in a bowl to cool, then sat down at the dining table with lots of little resealable bags and the scales and had fun. There's usually three types of nuts or seeds, one or two types of fruit, and for most of then, a spoonful of cacao nibs. The fruit is a small amount.

It's turned out beautifully. Snacking tends to be my downfall, hence needing the portion sizes. Usually around 180 calories. They are really tasty and it's fun to see what combination I'm getting each day. It's a bit of protein, and more noticeably, it bumps up how much fat I'm getting. I'm wondering if the higher amount of fat in my diet is doing me good. Have other people found that makes a difference? Nuts and seeds are dead nutritious things, which I hope is helping.

For further batches, I have my eye on roasted chickpeas and such. Also I just bought a wee silicone popcorn thingy for snacking at my partner's.

Hi there Peakab00! I lost with IP but I made sure I used only the certified Gluten Free packet options and used my own certified GF vitamins/supplements. It worked well for me. I've been in maintenance now for just over 3.5 years and am up over my goal weight presently by 5 lbs but getting that off in the next few weeks. For a bit I got a little lazy about carbs, that's why I have to smarten up before things get out of hand.
If you want there are a few of us on the Ideal Protein 3FC threads and you are welcome to join in http://www.3fatchicks.com/forum/ideal-protein-diet-236/. Ignore the sponsored Jenny Craig threads in the list - I really don't know why 3FC allows that sort of targeting, it's just strange.

Hope to see you 'round there too!

Hi Esofia! Yep I agree magnesium is a huge help for many with FM! I take it too along with GABA at nighttime for more restful sleep. If you don't like the magnesium as a drink, the body absorbs it through the skin very well via an epsom salt bath or using magnesium oil spray on your joints & muscles. Hope this week is going well for you. I love nuts too, but mainly eat mine raw as if they are salted & roasted I will get 'carried away', lol. People on low carb ways of eating need more sodium too and I get mine by crunching down Himalayan Pink Salt - I like the taste.
Liana

Hi all, just an update... thanks to supplements of selenium and L-Tyrosine my thyroid antibodies are still dropping (I get tested every 6 months) - they are down to 244 U/ml now from 1108 less than two years ago. I'm hoping to prevent autoimmune thyroid disease (full blown Hashimoto's Thyroiditis). And I'm celebrating, I'm officially through menopause! Buh-bye birth control!! Woo Hoo!
I've been managing ok with the fibro, although the weather changes that come with fall & winter are not nice for pain near the joints. Hope you guys are all plugging along and finding a bit of joy every day to brighten your life.

Liana

Hi everyone I am new and have severe FM as well as RA and on prednisone 60 ml a day I can lost weight for the life of me I need help I am on ideal protein now never cheat and lost nothing and I am starving lol advice would be so wonderful. I live on Vancouver island bc Canada ✌️

Welcome Queenovharts! I have not been on the forum here for soooo long. I hope you are still around! I did Ideal Protein to lose weight too but needed to do the Alternative Plan with extra food to actually lose weight. There is an Ideal Protein forum here too, not sure if you've seen it, Prednisone is a b**ch! That alone will keep your weight up.
I see you are on Vancouver Is. Yaaay for a fellow BC'er. UVic has an amazing free 6 week Chronic Pain Self Management course that I took locally, they bring it around the province. I found it extremely helpful and there is a great workbook and resource book along with a guided imagery and stretching CD It is facilitated by others with Chronic Pain issues who have also taken the course. Here's the website link BCSM - Chronic Pain Self-Management Program . Also here is the link to a 38 page info site for doctors and other clinicians on FM that you might find helpful in understanding your disease. I know RA complicates things (I only have OA) and likely your rheumatologist knows a lot of this but it's always good to self advocate and it's easier to deal with things if we understand what is happening in our bodies. Here's the June 6 2018 version of the latest on RA in Medscape (Medical professionals' Continuing Ed site) Not sure if you can access this link but you can sign up for free and get info that way. https://emedicine.medscape.com/article/331715-treatment Maybe there is a better treatment for your RA now that doesn't cause the weight gain of steroids like Prednisone.

Oops sorry, forgot to add link to e-medicine site for docs re: Fibromyalgia (Pathophysiology, Associated Conditions, Present Treatments, Patient Education) http://www.aaaceus.com/courses/NL0309/ARTICLE%202.pdf
Good luck and hugs! I will try to check in here more often, but what with a busy life and fibro-fog as you know, sometimes it slips my mind.

Liana