Hi, I have just realised that physiotherapy that specifically addresses loosening the diaphragm is helping me quite a bit. Anyone else with diaphragm tightness who benefits from this?
Hi, been battling the above all my life and barely made it through pre-menopause. Lost tons of money as no one wanted to believe me and I wasted a lot of time and money on wrong paths. Anyway, I have found a few things that help surprisingly well, but looking for a supportive group or people who also battle this. The fear of a severe episode, not being believed, the consequences (Career, relationship etc), explaining this to people, management tools, and so on and so on. Thanks.
Hi, I have metabolic syndrome (the whole lot from blood pressure, hyperlipidemia, high sugar, insulin resistance, weight issues... I am looking for a supportive group or even a metabolic syndrome challenge type group. If anyone here has tips for me as it seems quite overwhelming. My trigs and cholesterol are well under control with Nustendi.
Explanation of visceral myopathy (smooth muscle myopathy): depending on severity can lead to intestinal malrotation, a neonatal manifestation of a microcolon, or severe hypoperistalsis (chronic intestinal pseudo-obstruction, CIPO),in less severe cases very prone to SIBO. Urinary tract involvement can manifest as recurrent urinary tract infections due to bladder dysfunction. I am currently getting diagnosed and have been struggling with SIBO (esp Methane dominant) and bladder issues all my life due to a what appears to be weak Bauhin valve functioning and weakness in bladder functioning. I think in men the bladder functioning would not manifest as such. Would love to hear from people who have been diagnosed.
Explanation of visceral myopathy (smooth muscle myopathy): depending on severity can lead to intestinal malrotation, a neonatal manifestation of a microcolon, or severe hypoperistalsis (chronic intestinal pseudo-obstruction, CIPO),in less severe cases very prone to SIBO. Urinary tract involvement can manifest as recurrent urinary tract infections due to bladder dysfunction. I am currently getting diagnosed and have been struggling with SIBO (esp Methane dominant) and bladder issues all my life due to a what appears to be weak Bauhin valve functioning and weakness in bladder functioning. I think in men the bladder functioning would not manifest as such. Would love to hear from people who have been diagnosed.
Anyone here who has this or suspecting this and has been able to improve their problems with treatment? Thank you.
Hi, I have been on this journey for a long time with genetic specialists involved and severe burnout (over 50), affected enough to be unable to work etc. I have recently become aware that my issues are (although both highly mask each other and therefore dont appear with classical symptoms) inattentive ADHD (ADRA2A) masked by MDD (also genetic) and the other way around. Regarding genetics... there seems to be a fault in noradrenaline clearance and whilst I thought I need a LOT of medication and likely a combo: this approach never worked. What works more to address the faulty noradrenaline handling is a tiny but steady 2x1 drops of Escitalopram. NOT MORE, because it triggers the MDD and just makes me spaced out and lethargic. Regarding MDD which shows more strongly then and might have many dismiss SSRI prematurely (mind you: escitalopram or citalopram are the only SSRI options because they don't interfere with dopamine and noradrenaline and other receptors (like Sertraline). It seems paradox to NOT address those, but rather go an indirect route and it may seem ineffective because it unmasks another problem - lethargy and MDD. Also with these tiny doses and it addressing the NE issues indirectly patience is required.
Re MDD it depends on what is causing this. MDD is often exacerbated by stress also (financial hardship, loosing a job, relationship breakup and lingers for a long time, so maybe avoidance of ending things is also an issue). Of course it depends where the depression is coming from. Mine seems to stem from a (NOS1) enzyme issue and makes me prone to methane SIBO which really is a type of SIBO that causes extreme brain fog and sluggish thinking. I have cleared this with a STATIN. This completely surprised me but a statin is highly effective for this and there is also research into how adding a statin to psychiatric treatment can be beneficial at times when antidepressants dont work alone. If you have high cholesterol or trigs dont hesitate to get the usually recommended statin treatment. Anyway, I hope this helps people. I am only sharing my journey, no medication advice.
Hi, I have started with Rosuvastatin and ezetimib and was able to lower my trigs and cholesterol massively within weeks. I have had CFS like low motility systemic symptoms (with complete failure of peristalsis at one point) almost all my life and nothing worked to improve it (severe enough that I was unable to work). This is being completely reversed with treating my cholesterol issues.... Recently I had to switch to Nustendi, because I developed muscle pain and high creatinine kinase. The effect continues or has become even more beneficial. HOW can this be? Is it the effect on bile acids? I have Type IIB (Frederickson) cholesterol issues and genetic impairment of triglycerides (APOE). If anyone knows any connection to such an effect I would love to know. Thank you. It has also helped me think more clearly, like a complete metabolic reset almost.
Hi, I have started with Rosuvastatin and ezetimib and was able to lower my trigs and cholesterol massively within weeks. I have had CFS like low motility systemic symptoms for years and nothing worked to improve it (severe enough that I was unable to work). This is being completely reversed with treating my cholesterol and trig issues.... Recently I had to switch to Nustendi, because I developed muscle pain and high creatinine kinase. The effect continues or has become even more beneficial. HOW can this be? Is it the effect on bile acids? I have Type IIB (Frederickson) and genetic impairment of triglycerides (APOE). If anyone knows any connection to such an effect I would love to know. Thank you. It has also helped me think more clearly, like a complete metabolic reset almost.
Hi, I have started with Rosuvastatin and ezetimib and was able to lower my trigs and cholesterol massively within weeks. I have had CFS like low motility systemic symptoms for years and nothing worked to improve it (severe enough that I was unable to work). This is being completely reversed with treating my cholesterol issues.... Recently I had to switch to Nustendi, because I developed muscle pain and high creatinine kinase. The effect continues or has become even more beneficial. HOW can this be? Is it the effect on gut health? On bile acids? I have Type IIB (Frederickson) and genetic impairment of triglycerides (APOE). If anyone knows any connection to such an effect I would love to know. Thank you. It has also helped me think more clearly, like a complete metabolic reset almost.
I am asking because this medication seems to be doing way more for me than lower cholesterol. I had systemic issues with antibodies in my blood, blood clotting activated, digestive blockages etc and ezetimib has been improving all of it. I did some research and it could be my holy grail after trying years and years getting many health issues under control. Anyone on more than 10 mg? I am planning to discuss this with my lipidologist as well. Just looking for someone who has experience with a higher dose.
Hi again, I just got my new results and I have type II b hyperlipidemia (genetic). I was on Rosuva which worked really well in combo with Ezetimib, but got tired muscles. I personally did not find it too horrible, but my doctor put me on Pravastatin (same thing really re muscles fatigue... not sore as such just heavy fatigued (taking Ubiquinol 100 mg on top). His new suggestion is Bembedoic acid plus Ezetimib. Thoughts? I also have high trigs. Thanks.
Hey, I am on this combo and my digestion has changed from years of constant constipation to more regular but also not "fine". When you start these medications and already had some fatty liver issues etc: does the system clean up any cholesterol overload, bile thickening issues bit by bit and the digestion will after some hiccups (soft stools etc) eventually normalise? I am very happy on this combo and my labs are excellent. It has also improved systemic symptoms. Thank you.
I am angry. Because the most obvious things are often not checked for in CFS.
- antiphospholipid antibodies
- GPCR antibodies
- micro clotting markers
- prothrombin deficiency and antithrombin markers
- D-Dimere
I lost so many years because these basic tests were not done. Here in this country there is now CFS trials with plasmapheresis because so many have the sticky blood and antibodies. Why is this not one of the first things that is being tested for?
I have shared another post on here how the statin/blood thinning protocol is - after 15 years of agony - finally helping me. I already noticed huge improvements on statin/ezetimib and serrapeptase in terms of brain fog and symptoms other than fatigue. Now, since switching the statin to one that is more successful in trials for CFS (Pravastatin) even better and so looking forward to starting Clopidrogel (helps platelet aggregation) this week. I would love to hear from anyone else who is improving on this... It addresses micro clotting, blood vessel health, microbiome, bile flow in various ways. I am also on a small bit of L Thyroxin because my thyroid was a bit sluggish, too. I am so happy to finally see light at the end of the tunnel.
Cut ties with those who feel unsafe for your nervous system aka prioritise your nervous system over any: but they are my parents, but I can't move out because ... Build a supportive strong network. If you have lost your ability to judge people properly: going with a reputable doctor, 1-2 best longstanding friends and/or a therapist and government support is sufficient.
Address any inflammation in the body and gut health (gut health determines how well you can "digest" matters. Inflammation is hugely upregulated in the body if the nervous system is stressed.
Find any underlying problems: ADHD, autism, CFS, lipid disorder, adrenal issues and make treating those properly your absolute priority (trauma and PTSD weigh even heavier when your parents ignored a limitation you had to battle alone).
a therapist, emotional support animal, best friend who is also healing and growing (or even a good AI model) help for dialoguing and to establish a safe close bond where you unlearn that sharing vulnerabilities is dangerous.
From my own experience: Online courses, uncertified trauma healers, etc is something that delays proper healing.
Hi, I have had SCT and fatigue type symptoms (that could have at times be mistaken for autism and/or ADHD inattentive) all my life which later turned into severe CFS. Surprisingly (after all else failed) I am improving with statins (likely because they address endothelial dysfunction) and serrapeptase/lumbrokinase. From what I understand all three lower IL6 and inflammation, serrapeptase breaks fibrin and scar tissue and lumbrokinase addresses micro clotting. Just thought I share as I wish I wouldn't have wasted so much money on stuff that does not help anyway. Changing statin from Rosuva (Crestor) to Pravastatin now and my dosage for the enzymes is rather high. I am waiting for results from a hematologist and we have discussed switching the enzymes to blood thinning med (clopidrogel).
Improving daily on this protocol. If you suspect blood flow issues rather than neurotransmitter issues, might be worth looking into this. Either way, if cholesterol is high, don't shy away from statins as they do so much more than lower cholesterol. If nothing works and you are at your wits end it might be worth asking at the hematologist to look for antibodies (many neurodivergent people have antiphospholipid antibody show up) and endothelial inflammation markers. All the best.
Hi, after 15 years (but likely a lifelong predisposition) of CFS I am improving with statins (likely because they address endothelial dysfunction) and serrapeptase specifically and to a lesser extend lumbrokinase. From what I understand all three lower IL6, inflammation, serrapeptase breaks fibrin and scar tissue and lumbrokinase addresses micro clotting. Just thought I share as I wish I wouldn't have wasted so much money on stuff that does not help anyway. Changing statin from Rosuva (Crestor) to Pravastatin now and my dosage for the enzymes is rather high. I am waiting for results from a hematologist and we have discussed switching the enzymes to blood thinning med (clopidrogel). I was severe and bed bound (unable to work, do exercise or see friends). Improving daily on this protocol. PS: had a worsening of symptoms in the first few weeks on the enzymes but glad I pushed through.
Hi, after 15 years (but likely a lifelong predisposition) of CFS I am improving with statins (likely because they address endothelial dysfunction) and serrapeptase specifically and to a lesser extend lumbrokinase. From what I understand all three lower IL6, inflammation, serrapeptase breaks fibrin and scar tissue and lumbrokinase addresses micro clotting. Just thought I share as I wish I wouldn't have wasted so much money on stuff that does not help anyway. Changing statin from Rosuva (Crestor) to Pravastatin now and my dosage for the enzymes is rather high. I am waiting for results from a hematologist and we have discussed switching the enzymes to blood thinning med (clopidrogel). I was severe and bed bound (unable to work, do exercise or see friends). Improving daily on this protocol. PS: had a worsening of symptoms for a few weeks on the enzymes but it was worth pushing through
Hi, after 15 years (but likely a lifelong predisposition) of CFS I am improving with statins (likely because they address endothelial dysfunction) and serrapeptase specifically and to a lesser extend lumbrokinase. From what I understand all three lower IL6, inflammation, serrapeptase breaks fibrin and scar tissue and lumbrokinase addresses micro clotting. Just thought I share as I wish I wouldn't have wasted so much money on stuff that does not help anyway. Changing statin from Rosuva (Crestor) to Pravastatin now and my dosage for the enzymes is rather high. I am waiting for results from a hematologist and we have discussed switching the enzymes to blood thinning med (clopidrogel). I was severe and bed bound (unable to work, do exercise or see friends). Improving daily on this protocol.