jackiemxoxo Posted April 2, 2015 Report Share Posted April 2, 2015 Within the last few months, I have noticed that I am getting pain in both legs that are similar to body aches when you have the flu. I don't know what is causing this symptom and I am still having some GI issues. Does anyone else get these? Do you know if it is dysautonomia related? Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 3, 2015 Report Share Posted April 3, 2015 I get those body aches/pains all over (arms,legs, back) a lot of the time. They are miserable, so I can truly feel your pain. Sorry to hear that you are having to endure this as well. Not sure if it is technically dysautonomia related and it gets confusing because there is so much overlap with this condition and ME/CFS/SEID which also overlaps a lot with fibromyalgia. Now that IOM has made dysautonomia one of the "hallmark" symptoms for ME/CFS/SEID it gets even more confusing. Hopefully they will soon determine subgroups for both dysautonomia and ME/CFS and then, I suspect, we will see that there are a lot of us with the same thing....whatever that thing is called. GI issues are also very common both with dysautonomia and ME/CFS. Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted April 3, 2015 Author Report Share Posted April 3, 2015 Hey chaos, what does IOM, ME, and SEID stand for? I guess I need to do more research, was doing well for awhile and then bam was hit with another relapse. Thanks! Quote Link to comment Share on other sites More sharing options...
MarkA Posted April 3, 2015 Report Share Posted April 3, 2015 I have chronically tight muscles and do not get relaxation during sleep. I also expereience cramping and spasms. Yoga and stretching helps as well as periodic massage therapy sessions. I feel it is POTS related but can not find a definative link. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 3, 2015 Report Share Posted April 3, 2015 Yes, sometimes when my GI issues are bad and my back is bad I get a painful deep aching that goes right down my legs from my waist to my toes. I don't know what causes it though. Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 4, 2015 Report Share Posted April 4, 2015 Sorry...IOM= Institute of Medicine...a nationally recognized independent body that has considerable clout in the medical community.ME=Myalgic Encephalomyolitis- the name most people with "CFS" prefer be used as it better defines their symptom set. It's the name that has/had been used in Europe for decades until the CDC changed it in the 1980's in the US and other places started picking up the terrible name of "chronic fatigue syndrome."SEID= Systemic Exertion Intolerance Disease- the new name that IOM is recommending be used rather than ME/CFS as they feel that intolerance to activity, and in fact worsening of symptoms after any type of exertion, is one of the hallmark symptoms of the disease. Here is a link to the brief version of the IOM report that was released Feb 10, 2015https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdfHere is a link to the site where you can get the full version of the report.http://www.iom.edu/Reports/2015/ME-CFS.aspxHere is a link to the Canadian Consensus Criteria, which some patients still think is the better diagnostic criteria for the disease.http://sacfs.asn.au/download/consensus_overview_me_cfs.pdfHope this helps. Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted April 4, 2015 Author Report Share Posted April 4, 2015 Thanks Chaos! Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted April 4, 2015 Author Report Share Posted April 4, 2015 After researching some, I realize that I may be getting these aches as a side effect of taking methylfolate which I just started about a month or so ago. Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 4, 2015 Report Share Posted April 4, 2015 I had bad side effects from taking methylfolate the first time it was prescribed for me. I am taking it again after being on a lot of various supplements for awhile first and now am tolerating it much better with good results. Personally I've found I need to take fairly large doses of potassium along with it to help reduce some of the muscle pain that occurs with it. When my muscles are having that "burning" pain, I find potassium citrate (which ironically is akaline apparently) to be most helpful. When I don't have the muscle pain, then I find potassium gluconate to be most helpful. Have you by any chance done 23 & Me to explore the various SNPs associated with this issue? Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted April 4, 2015 Author Report Share Posted April 4, 2015 No but I had a cardiac profile done that shows I have the MTHFR defect and I have had 2 miscarriages so a hematologist told me to take it. I am on a very low dose of 2.5mg but apparently not low enough for me! Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 9, 2015 Report Share Posted April 9, 2015 I definitely had bad side effects when I did just methylfolate by itself or when I added in Methyl B 12. I've found I also needed to add a bunch of other supplements that help support the function of those two things. Those other items include things like L-Carnitine Fumurate, Sam-e, Acetyl L Carnitine, Potassium, Vitamins A, C, D, E, minerals, and active B12 (called dibencozide). Which mutation do you have? C677T or the A1298T gene? The C677T seems to be the bigger problem for most people although the A1298T seems to be involved in a lot of mitochondrial/energy production issues. Quote Link to comment Share on other sites More sharing options...
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