Meditation, EFT, Stress Reduction, Changing Behavior/ Belief Patterns, Magnesium, Safe Removal of Amalgam Fillings, Diet Changes- removal of wheat, sugar, dairy, as many organic fresh fruit and vegetables and possible, organic protein shakes along with countless forms of detoxing of the body (far infrared sauna, fresh water...) and being outside, barefoot and much as possible are some of the things that have contributed to my healing of the symptoms of chronic fatigue, FMS , Irritable Bowel Syndrome and Non-Restorative Sleep Pattern.
Re: Concentration problems — i was diagnosed with multiple scleosis last week of 1987. my mind is ? at all times. thanj-you for any help! fona
Re: Headache — My headache is a constant swollen brain feeling. I can't lay on a regular pillow. I have to take half of the feathers out of a feather down pillow. Also have achiness and some times severe pounding along with deep ear pain. I have lived with this for 26 years with no help no test proving anything. I am severely intolerant to any sleep meds and can get severe headache and vominting from taking a tiny crumb of those drugs. Gee guess what doctors want to do. Give me drugs!!!
Re: Unrefreshing sleep — my sleep is a nightmare! I cannot take any meds for sleep. I mean not anything! They give me a severe alcohol like hangover and severe headache and vomintig! I wake up 4-6 times a night. If I don't get at least 7 hours I am in much more pain, nausea, weakness, faintlike, severe flu feeling. My head is constantly swollen in the brain feeling, severe ear aches. It's my nightmare with many more symptoms. But the sleep disorder is my nightmare.
Re: Fatigue — Life Altering
Re: Fatigue — Life Altering........
Re: Mild/ moderate exercise — I agree with JustinReilly because I have tried mild to moderate exercise and ended up being able to push myself for a little while to keep up the same routine but my post-exertional illness often kicks in as a severe illness for months so I am never sure of just how badly I am going to react to exercise until I have waited at least three days to assess myself.
There is also the problem of tachycardia which is so common amoung chronic fatigue syndrome patients. It is temporary and lasts as long as the relapse and if an exercise therapist were to note the heart rate of someone in relapse was elevated alarmingly while making a cup of tea, they would certainly not add insult to injury be suggesting they use the treadmill next.
The bottom line is that unless you are in a stable baseline phase of your illness then exercise can be down right dangerous to your heart and it most probably will cause a relapse unless you keep your exercise limited to those that can be done lying down or none if you can barely even hold your own head up.
auntie alice Re: D-Ribose — I had no side effects from ribose and found it gently helped my energy levels. However a relative with more severe symptoms found it caused hyper stimulation and couldn't sleep.See Dr Jacob Teitelbaum on web for more info.
auntie alice Re: Perrin Technique — I think the theory makes sense. Tried it for about a year and still do some of the techniques from time to time. Don't know how much it helped my recovery (80%), as I was doing so many things but feel it was part of it. I thought it was expensive.
Re: Acupuncture — This has kept me going. Good to helpwith physical symptoms and emotional complications. Need to find good practioner (word of mouth).
Re: Gingko Biloba — I haven't had any side effects. When I go off the Gingko I experience significant increases in short-term memory loss and trouble finding words.
Re: Fatigue — flu on steroids
Re: Meditation — AFTER SUFFERING BADLY FOR 10 YEARS... THE SINGLE BEST TREATMENT...FOR THE LAST 3 YEARS....7 DAYS A WEEK...FROM 4 TO 7 HOURS A DAY....CLEARED UP HEAVY BRAIN FOG AND TERRIBLE MUSCEL PAIN & ABOUT 50% 0F EXTREM FATIGUE...
Re: Fatigue — Very complicated symptom.
Re: Gallbladder pain — I get it
Re: Provigil (modafinil) — My experience with Provigil/modafinil was very, very good: I now have more energy than I had in the 10 year before! I can now finally not only make it through the day, but I'm also not tired at the end of the day! I only take 50-100 mg a day, and only 4-5 days a week. This stuff has turned my life around, completely.
Re: Low-Dose Naltrexone (LDN) — Very good experience! Takes a few months to show (external) results. It takes courage to get through the initial phase but it's worth it. Started up very very slowly (0,25 mg). Hardly anymore tingling fingers and feet, less dyslexia and significant less brainfog, shorter PEM, able to listen to music again, higher body temperature, ... It rewires the brain and puts the body back on track. Not healed yet but better quality of life!
Re: Gluten-free diet — Eliminating wheat (and dairy) seemed to be the factor(s) that got rid of the severe IBS associated with CFS early on.
Re: Low-Dose Naltrexone (LDN) — no help
Re: Gluten-free diet — helps a bit- stopped gaining wight when went gluten free
Re: Rest — have to
Re: Take frequent short rest breaks — collapse otherwise
Re: Graded Exercise Therapy (GET) — I done Grade Exercise Therapy and found it made my CFS/ ME worse. I also suffer from High Blood Pressure and the GET also made my blood pressure alot worse. My GP had to increase my hbp medication. I done the GET for my Private Insurance. Also the physio who done the GET reported back to the Insurance Company that my condition was improving and my Blood Pressure had stabilised. This was a complete lie and i did not even do the last 5 GET sessions as i insisted the Physio monitor my Blood Pressure and she said it was too high to do any exercise. So please be careful if you try this!!!
Re: Incapacitating exhaustion — inability to get out of bed without help
Re: Fatigue — excessive mental and physical fatigue following exertion, unrelieved by normal rest
Re: Post-exertional malaise/morbidity (PEM) — In the early days of my illness I didn't recognize the trigger point where doing more means a day or two unable to do anything. I do now. Because the reaction is delayed by a day or two, it was hard to connect the dots. Now I know that if I don't get a rest when I need it (after not very much exercise :'( ) it will mean payback pain and that 'flat battery and no charger' syndrome.
richvank Re: Methylation treatments — Information on the hypothesis that supports methylation treatments, as well as a simplified methylation protocol, can be found at www.cfsresearch.org until February 1, 2011. After that, please refer to the Phoenix Rising site or email me at richvank@aol.com Rich Van Konynenburg
Re: Stress — My condition drastically improved by 60% when I was removed from a 90% stress situation. I see now, walking away from all drama is the way to go, even if it means giving up your friends (Drama Queens).
Re: Clonazepam (Klonopin, Rivotril) — I have found this to be one of the most useful drugs for CFS symptom management
Re: Diet changes — Fructose malabsorption is common and can be tested for as well as lactose, casein (dairy). A level of gluten intolerance can be trialled by diet. I found these measures effective.
richvank Re: Methylation treatments — It's true that the methylation treatments initially produce detox symptoms in most people with CFS who try them. This appears to be due to the body's detoxication system being returned to more normal operation, so that it begins to work down the backlog of toxins that have been stored during the illness. The toxins are mobilized into the bloodstream. They are eventually extracted by the kidneys and liver and excreted in the urine and stools, but in the meantime, the cells of the body are exposed to these toxins, and this is apparently what produces the symptoms. It is important to adjust the dosages of the supplements in these treatments to levels at which the detox symptoms are tolerable.
Note that the essence of the methylation treatments is the combination of high-dose B12 (hydroxocobalamin, methylcobalamin or adenosylcobalamin) and RDA-level or higher dosages of chemically reduced forms of folate (5-methyltetrahydrofolate, aka Metafolin or FolaPro) and/or folinic acid.
B12 injections and B-vitamins are also shown as separate treatments on this site, but it is the combination of B12 and folate, in certain forms, that is the core of the methylation treatments.
Note also that Cerefolin (actually CerefolinNAC) is also listed separately on this site. It is a methylation treatment in the form of a prescription "medical food." -- Rich Van Konynenburg richvank@aol.com
Re: Methylation treatments — Improvement in labs (Hemoglobin normal first time in 9 years, Homocysteine normalised) but only mild symptom improvement. Can result in detox (worsening of symptoms) depending on dosage.
Re: Methylation treatments — It has really been difficult. I have a horrible rash on my back, spine, shoulder blades, upper arms and thighs. I can not do it more than 2 or 3 days and then have to back off. I think it is die off or detoxing. Am committed to continuing through this difficult time.
richvank Re: Methylation treatments — Hi, as you know, I'm a proponent of methylation treatments for CFS. I see that they are now in 16th position for effectiveness, out of 95 treatments ranked. This is heartening! Thanks for including these treatments in your survey. Please note that Cerefolin is a prescription methylation treatment, and is listed separately in the rankings.
One thing I'm wondering about is that I don't see methylation treatments in your Infographic. Has it been updated lately?
Thanks.
Rich Van Konynenburg richvank@aol.com
Re: Hypnagogic hallucinations — Have CFS and have been using acetyl-L-carnitine which works well. However, I noticed that using higher dose of this supplement makes me have short duration visual disturbances upon sudden awaking. Sometimes these visual disturbances take the form of visual illussions or hallutinations (e.g. spiders on the bed). They only happen in the first seconds upon a night sudden awakening. Weird - I know.
Re: Ataxia (balance and proprioception problems) — I have celiac disease and type 1 diabetes and have noticed over the years although I walk almost every day, many times I still experience difficulties keeping my balance. It feels as if I am under the influence of a controlled substance, but I have nothing in my system. As a result of being on the gluten free diet for over 2 years, I am curious to know if there are permanent damages to my neurological condition? Is there a specific treatment or exercise that would benefit me?
Re: Difficulty finding the right word — Hi
It started sometime ago. I get mid way into a sentence and know what i want to say but dont know how to say it - like i am having to search for words. I also often cant think of the word i am looking for and have to just pause. Recently though it has turned into saying the wrong the words - not pronouncing them correctly. I am 36. I have tinitis which started sometime ago and am waiting for a hospital appoint to look into this but also have some stress in my life at the mo has my dad has terminal cancer. Not sure why i am struggling with communication? Anyone else having same probs?
Re: Post-exertional malaise/morbidity (PEM) — in the last year or so i noticed that after i really exerted myself i would not have that sense of extreme energy that i used to have and the next day i have extreme fatigue and all over muscle soreness and pain as if i were getting sick it seems to be taking longer and longer to go away kind of scary i belonged to a gym for years but gave up my membership because i thought i was getting sick from the gym, but i am experiencing the same thing at home i'm 46 and in good health besides
JustinReilly Re: Mild/ moderate exercise — A consesus panel of top CFIDS authorities noted (Journal of Chronic Fatigue Syndrome, vol. 11, No.1, 2003, pp.44-49) that the published studies do not support the use of Graded Exercise Therapy (GET) in CFIDS. They noted that many studies showed no effect or worsening of CFIDS in response to GET. The studies that supposedly showed GET as effective had clearly flawed methods. Exertion by People with CFIDS (PWC) causes Post Exertional Malaise. It may be that the least debilitated PWCs can benefit from GET, but that those with typical or extreme CFIDS are worsened. This was the case for me personally.
JustinReilly Re: Cognitive Behavioral Therapy (CBT) — A consesus panel of top CFIDS authorities noted (Journal of Chronic Fatigue Syndrome, vol. 11, No. 1, 2003, pp.44-49) that the published studies do not support the use of CBT in CFIDS. They noted that many studies showed no effect or worsening of CFIDS in response to CBT. The studies that supposedly showed CBT as effective had clearly flawed methods.
There are two CBT approaches commonly applied to patients with CFIDS. The first is attempting to get the PWC to change attitudes about his illness such as recognizing that a physical illness now limits activity and adjusting expectations rather than trying to "push through it", the latter resulting in Post Exertional Malaise. This CBT is helpful.
The harmful type of CBT is unfortunately more common. This is the reverse of the above. That is, trying to get the PWC to adopt the attitude that he thinks he is more limited by the illness than he really is and that he should push himself beyond his perceived limits. This type of CBT makes the illness worse by (1) causing Post Exertional Malaise and (2) making the patient feel frustrated, depressed and anxious that he is not able to "buck up" and just push through it.
snowgirl Re: Acupuncture — I've tried several long term courses of different kinds of acupuncture. It's relaxing, but had no effect on my symptoms.
chattycat Re: Anxiety — Longterm anxiety and PTSD have taken a toll on my physical health and lowered my immune system
howreb Re: Clonazepam (Klonopin, Rivotril) — I use it to be able to sleep, only take it in place of a sleeping pill and it calms my pounding heart episodes.
JoannaB Re: Headache — I believe that my CFS is related to my Chronic Daily Headache issue (diagnosed as New Daily Persistent Headache, NDPH).
bikerkitty Re: Lyme disease — It turned out some of the CF symptoms were actually lyme. Many of those are better after 3 years of antibiotics, 9 months of IV antibiotics. The joint and muscle pains in particular are much improved. Also I now get refreshing sleep, it was the first thing that got better when I started antibiotics. I still am having fatigue issues despite the sleep.
bikerkitty Re: Clonazepam (Klonopin, Rivotril) — This was the worst drug. It made me suicidal. It also made me really stupid and unable to think at all.
dpfra Re: Acetaminophen / Paracetamol (Tylenol, Panadol) — No doctor will treat. Insurance Companies are blocking all action by
physicans to treat or attempt to treat this condition. BC/BS of NC
major provider that will not allow treatment.
Meditation, EFT, Stress Reduction, Changing Behavior/ Belief Patterns, Magnesium, Safe Removal of Amalgam Fillings, Diet Changes- removal of wheat, sugar, dairy, as many organic fresh fruit and vegetables and possible, organic protein shakes along with countless forms of detoxing of the body (far infrared sauna, fresh water...) and being outside, barefoot and much as possible are some of the things that have contributed to my healing of the symptoms of chronic fatigue, FMS , Irritable Bowel Syndrome and Non-Restorative Sleep Pattern.
Re: Concentration problems — i was diagnosed with multiple scleosis last week of 1987. my mind is ? at all times. thanj-you for any help! fona
Re: Headache — My headache is a constant swollen brain feeling. I can't lay on a regular pillow. I have to take half of the feathers out of a feather down pillow. Also have achiness and some times severe pounding along with deep ear pain. I have lived with this for 26 years with no help no test proving anything. I am severely intolerant to any sleep meds and can get severe headache and vominting from taking a tiny crumb of those drugs. Gee guess what doctors want to do. Give me drugs!!!
Re: Unrefreshing sleep — my sleep is a nightmare! I cannot take any meds for sleep. I mean not anything! They give me a severe alcohol like hangover and severe headache and vomintig! I wake up 4-6 times a night. If I don't get at least 7 hours I am in much more pain, nausea, weakness, faintlike, severe flu feeling. My head is constantly swollen in the brain feeling, severe ear aches. It's my nightmare with many more symptoms. But the sleep disorder is my nightmare.
Re: Fatigue — Life Altering
Re: Fatigue — Life Altering........
Re: Mild/ moderate exercise — I agree with JustinReilly because I have tried mild to moderate exercise and ended up being able to push myself for a little while to keep up the same routine but my post-exertional illness often kicks in as a severe illness for months so I am never sure of just how badly I am going to react to exercise until I have waited at least three days to assess myself.
There is also the problem of tachycardia which is so common amoung chronic fatigue syndrome patients. It is temporary and lasts as long as the relapse and if an exercise therapist were to note the heart rate of someone in relapse was elevated alarmingly while making a cup of tea, they would certainly not add insult to injury be suggesting they use the treadmill next.
The bottom line is that unless you are in a stable baseline phase of your illness then exercise can be down right dangerous to your heart and it most probably will cause a relapse unless you keep your exercise limited to those that can be done lying down or none if you can barely even hold your own head up.
auntie alice
Re: D-Ribose — I had no side effects from ribose and found it gently helped my energy levels. However a relative with more severe symptoms found it caused hyper stimulation and couldn't sleep.See Dr Jacob Teitelbaum on web for more info.
auntie alice
Re: Perrin Technique — I think the theory makes sense. Tried it for about a year and still do some of the techniques from time to time. Don't know how much it helped my recovery (80%), as I was doing so many things but feel it was part of it. I thought it was expensive.
Re: Acupuncture — This has kept me going. Good to helpwith physical symptoms and emotional complications. Need to find good practioner (word of mouth).
Re: Gingko Biloba — I haven't had any side effects. When I go off the Gingko I experience significant increases in short-term memory loss and trouble finding words.
Re: Fatigue — flu on steroids
Re: Meditation — AFTER SUFFERING BADLY FOR 10 YEARS... THE SINGLE BEST TREATMENT...FOR THE LAST 3 YEARS....7 DAYS A WEEK...FROM 4 TO 7 HOURS A DAY....CLEARED UP HEAVY BRAIN FOG AND TERRIBLE MUSCEL PAIN & ABOUT 50% 0F EXTREM FATIGUE...
Re: Fatigue — Very complicated symptom.
Re: Gallbladder pain — I get it
Re: Provigil (modafinil) — My experience with Provigil/modafinil was very, very good: I now have more energy than I had in the 10 year before! I can now finally not only make it through the day, but I'm also not tired at the end of the day! I only take 50-100 mg a day, and only 4-5 days a week. This stuff has turned my life around, completely.
Re: Low-Dose Naltrexone (LDN) — Very good experience! Takes a few months to show (external) results. It takes courage to get through the initial phase but it's worth it. Started up very very slowly (0,25 mg). Hardly anymore tingling fingers and feet, less dyslexia and significant less brainfog, shorter PEM, able to listen to music again, higher body temperature, ... It rewires the brain and puts the body back on track. Not healed yet but better quality of life!
Re: Gluten-free diet — Eliminating wheat (and dairy) seemed to be the factor(s) that got rid of the severe IBS associated with CFS early on.
Re: Low-Dose Naltrexone (LDN) — no help
Re: Gluten-free diet — helps a bit- stopped gaining wight when went gluten free
Re: Rest — have to
Re: Take frequent short rest breaks — collapse otherwise
Re: Graded Exercise Therapy (GET) — I done Grade Exercise Therapy and found it made my CFS/ ME worse. I also suffer from High Blood Pressure and the GET also made my blood pressure alot worse. My GP had to increase my hbp medication. I done the GET for my Private Insurance. Also the physio who done the GET reported back to the Insurance Company that my condition was improving and my Blood Pressure had stabilised. This was a complete lie and i did not even do the last 5 GET sessions as i insisted the Physio monitor my Blood Pressure and she said it was too high to do any exercise. So please be careful if you try this!!!
Re: Incapacitating exhaustion — inability to get out of bed without help
Re: Fatigue — excessive mental and physical fatigue following exertion, unrelieved by normal rest
Re: Post-exertional malaise/morbidity (PEM) — In the early days of my illness I didn't recognize the trigger point where doing more means a day or two unable to do anything. I do now. Because the reaction is delayed by a day or two, it was hard to connect the dots. Now I know that if I don't get a rest when I need it (after not very much exercise :'( ) it will mean payback pain and that 'flat battery and no charger' syndrome.
richvank
Re: Methylation treatments — Information on the hypothesis that supports methylation treatments, as well as a simplified methylation protocol, can be found at www.cfsresearch.org until February 1, 2011. After that, please refer to the Phoenix Rising site or email me at richvank@aol.com Rich Van Konynenburg
Re: Stress — My condition drastically improved by 60% when I was removed from a 90% stress situation. I see now, walking away from all drama is the way to go, even if it means giving up your friends (Drama Queens).
Re: Clonazepam (Klonopin, Rivotril) — I have found this to be one of the most useful drugs for CFS symptom management
Re: Diet changes — Fructose malabsorption is common and can be tested for as well as lactose, casein (dairy). A level of gluten intolerance can be trialled by diet. I found these measures effective.
richvank
Re: Methylation treatments — It's true that the methylation treatments initially produce detox symptoms in most people with CFS who try them. This appears to be due to the body's detoxication system being returned to more normal operation, so that it begins to work down the backlog of toxins that have been stored during the illness. The toxins are mobilized into the bloodstream. They are eventually extracted by the kidneys and liver and excreted in the urine and stools, but in the meantime, the cells of the body are exposed to these toxins, and this is apparently what produces the symptoms. It is important to adjust the dosages of the supplements in these treatments to levels at which the detox symptoms are tolerable.
Note that the essence of the methylation treatments is the combination of high-dose B12 (hydroxocobalamin, methylcobalamin or adenosylcobalamin) and RDA-level or higher dosages of chemically reduced forms of folate (5-methyltetrahydrofolate, aka Metafolin or FolaPro) and/or folinic acid.
B12 injections and B-vitamins are also shown as separate treatments on this site, but it is the combination of B12 and folate, in certain forms, that is the core of the methylation treatments.
Note also that Cerefolin (actually CerefolinNAC) is also listed separately on this site. It is a methylation treatment in the form of a prescription "medical food." -- Rich Van Konynenburg richvank@aol.com
Re: Methylation treatments — Improvement in labs (Hemoglobin normal first time in 9 years, Homocysteine normalised) but only mild symptom improvement. Can result in detox (worsening of symptoms) depending on dosage.
Re: Methylation treatments — It has really been difficult. I have a horrible rash on my back, spine, shoulder blades, upper arms and thighs. I can not do it more than 2 or 3 days and then have to back off. I think it is die off or detoxing. Am committed to continuing through this difficult time.
richvank
Re: Methylation treatments — Hi, as you know, I'm a proponent of methylation treatments for CFS. I see that they are now in 16th position for effectiveness, out of 95 treatments ranked. This is heartening! Thanks for including these treatments in your survey. Please note that Cerefolin is a prescription methylation treatment, and is listed separately in the rankings.
One thing I'm wondering about is that I don't see methylation treatments in your Infographic. Has it been updated lately?
Thanks.
Rich Van Konynenburg
richvank@aol.com
Re: Hypnagogic hallucinations — Have CFS and have been using acetyl-L-carnitine which works well. However, I noticed that using higher dose of this supplement makes me have short duration visual disturbances upon sudden awaking. Sometimes these visual disturbances take the form of visual illussions or hallutinations (e.g. spiders on the bed). They only happen in the first seconds upon a night sudden awakening. Weird - I know.
Re: Ataxia (balance and proprioception problems) — I have celiac disease and type 1 diabetes and have noticed over the years although I walk almost every day, many times I still experience difficulties keeping my balance. It feels as if I am under the influence of a controlled substance, but I have nothing in my system. As a result of being on the gluten free diet for over 2 years, I am curious to know if there are permanent damages to my neurological condition? Is there a specific treatment or exercise that would benefit me?
Re: Difficulty finding the right word — Hi
It started sometime ago. I get mid way into a sentence and know what i want to say but dont know how to say it - like i am having to search for words. I also often cant think of the word i am looking for and have to just pause. Recently though it has turned into saying the wrong the words - not pronouncing them correctly. I am 36. I have tinitis which started sometime ago and am waiting for a hospital appoint to look into this but also have some stress in my life at the mo has my dad has terminal cancer. Not sure why i am struggling with communication? Anyone else having same probs?
Re: Post-exertional malaise/morbidity (PEM) — in the last year or so i noticed that after i really exerted myself i would not have that sense of extreme energy that i used to have and the next day i have extreme fatigue and all over muscle soreness and pain as if i were getting sick it seems to be taking longer and longer to go away kind of scary i belonged to a gym for years but gave up my membership because i thought i was getting sick from the gym, but i am experiencing the same thing at home i'm 46 and in good health besides
JustinReilly
Re: Mild/ moderate exercise — A consesus panel of top CFIDS authorities noted (Journal of Chronic Fatigue Syndrome, vol. 11, No.1, 2003, pp.44-49) that the published studies do not support the use of Graded Exercise Therapy (GET) in CFIDS. They noted that many studies showed no effect or worsening of CFIDS in response to GET. The studies that supposedly showed GET as effective had clearly flawed methods. Exertion by People with CFIDS (PWC) causes Post Exertional Malaise. It may be that the least debilitated PWCs can benefit from GET, but that those with typical or extreme CFIDS are worsened. This was the case for me personally.
JustinReilly
Re: Cognitive Behavioral Therapy (CBT) — A consesus panel of top CFIDS authorities noted (Journal of Chronic Fatigue Syndrome, vol. 11, No. 1, 2003, pp.44-49) that the published studies do not support the use of CBT in CFIDS. They noted that many studies showed no effect or worsening of CFIDS in response to CBT. The studies that supposedly showed CBT as effective had clearly flawed methods. There are two CBT approaches commonly applied to patients with CFIDS. The first is attempting to get the PWC to change attitudes about his illness such as recognizing that a physical illness now limits activity and adjusting expectations rather than trying to "push through it", the latter resulting in Post Exertional Malaise. This CBT is helpful. The harmful type of CBT is unfortunately more common. This is the reverse of the above. That is, trying to get the PWC to adopt the attitude that he thinks he is more limited by the illness than he really is and that he should push himself beyond his perceived limits. This type of CBT makes the illness worse by (1) causing Post Exertional Malaise and (2) making the patient feel frustrated, depressed and anxious that he is not able to "buck up" and just push through it.
snowgirl
Re: Acupuncture — I've tried several long term courses of different kinds of acupuncture. It's relaxing, but had no effect on my symptoms.
chattycat
Re: Anxiety — Longterm anxiety and PTSD have taken a toll on my physical health and lowered my immune system
howreb
Re: Clonazepam (Klonopin, Rivotril) — I use it to be able to sleep, only take it in place of a sleeping pill and it calms my pounding heart episodes.
JoannaB
Re: Headache — I believe that my CFS is related to my Chronic Daily Headache issue (diagnosed as New Daily Persistent Headache, NDPH).
bikerkitty
Re: Lyme disease — It turned out some of the CF symptoms were actually lyme. Many of those are better after 3 years of antibiotics, 9 months of IV antibiotics. The joint and muscle pains in particular are much improved. Also I now get refreshing sleep, it was the first thing that got better when I started antibiotics. I still am having fatigue issues despite the sleep.
bikerkitty
Re: Clonazepam (Klonopin, Rivotril) — This was the worst drug. It made me suicidal. It also made me really stupid and unable to think at all.
dpfra
Re: Acetaminophen / Paracetamol (Tylenol, Panadol) — No doctor will treat. Insurance Companies are blocking all action by physicans to treat or attempt to treat this condition. BC/BS of NC major provider that will not allow treatment.