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Zachary Pottle posted in the group Invisible illness
Does anyone know anyone or have any experience with chronic fatigue syndrome? I feel like it just has such a negative connotation from everyone I’ve mentioned it to. People will be like, “I’m always tired too,” or “we all get tired,” which I think is so wrong. Curious to hear what you all think.
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@zachary-pottle @dori-smith Fellow ME sufferer here! The name CFS is such a damaging term. A great site, though no longer updated (unfortunately the woman who ran it passed away from ME quite a few years ago) – is HFME.org. Even though it was written a decade ago, there are so many helpful & educational articles and I could relate to so much of…Read More
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Yes it’s on my far too lengthy list of issues, usually goes hand in hand with Fibromyalgia- mess on paper..gah! It is wrong, those who are not true spoonies likely will never get it. Between the Fibro, EDS, CFS, AG, and a small child I keep the coffee industry booming LOL That, you don’t look sick and.. try yoga grrr I used to keep The Spoon…Read More
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I was diagnosed with Pots disease 2 years ago and I have a feeling I also have CFS. But I don’t know how to go about being diagnosed.
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@brynsmommy38 Do you by any chance have a hypermobility syndrome of sorts? POTS and CFS typically goes along with Marfans, EDS etc.. As far as I know there is no specific testing for CFS, just the totality of other testing, diagnostic criteria, sleep studies etc. I’d simply ask my doctor flat out if it’s a possibility because of.. XYZ…Read More
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Zachary Pottle wrote a new post
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Zachary Pottle wrote a new post
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Zachary Pottle wrote a new post
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@emilyxlc Exactly! What’s next?
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Zachary Pottle wrote a new post
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Zachary Pottle wrote a new post
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Outstanding approach. Does anybody in the community have experience with neurostimulation? It’d be great to hear anything, as there are versions of this currently used. I use a primitive version on myself for acute pain, like a cut or sting. I bite or pinch the area around the injury, sending a seconary pain signal to the brain from the same area. It seems to confuse the brain and “cancels” out some of the pain. Needless to say, it stops once I stop the biting!
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Outstanding approach. Does anybody in the community have experience with neurostimulation? It’d be great to hear anything, as there are versions of this currently used. I use a primitive version on myself for acute pain, like a cut or sting. I bite or pinch the area around the injury, sending a secondary pain signal to the brain from the same area. It seems to confuse the brain and “cancels” out some of the pain. Needless to say, it stops once I stop the biting!
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Zachary Pottle wrote a new post
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Zachary Pottle wrote a new post
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This is helpful but I fear it may be an oversimplification. I have a background of being a clinical scientist and worked for many years in nuclear medicine and learned from the get-go that it was important to get an accurate history from the patient to work out what is going on. When I became ill with arthritis and talked to the rheumatologists for the first time as a patient I was taken aback when I reported how my arthritis switched on over about a week (ten days after volunteering for an experimental Pneumococcal vaccine). I was told I was wrong and had been suffering from arthritis for years as I was suffering from Osteo Arthritis! I am fed up with junior doctors telling me the history I and my wife (a midwife with years of experience) report is wrong. From my point of view, I have an Arthritis that flares up whenever my immunity is working overtime and clearly has other autoimmune aspects even if I don’t have an antibody signature consistent with classical Rheumatoid Arthritis. We are very familiar with Rheumatoid Arthritis – my father-in-law died from the treatments of it – and I am sure I don’t have simple Rheumatoid Arthritis but what I do have mimics it in a number of ways. I am sure there are many more than two types of arthritis.
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I’ve had (been diagnosed with it) since 2009, so I get this a LOT. It’s really frustrating, because people hear “fatigue” and associate it with “tired” when in reality they’re two very different things. Just like you can be “tired” and not want to sleep, you can still be tired and not fatigued.
ETA: because I thought hitting enter would take me…Read More