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What do you think you had if it wasn't cfs? Did you have Pem and non restorative sleep?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The most fundamental difference is the knowledge and skill of the practitioner. Cranial osteopathy is practiced by someone who has spent years at university learning to become an osteopath - in the US most have done medical degrees and then specialised in manual medicine - and then done further practice and training after gaining some practical experience in the profession. They've basically done a degree in anatomy and physiology and been trained under close supervision in manual medicine, then gained some years of experience in recognising their limitations with complex patients, then obtained training in how to address those patients.Could you give a quick sentence on how [cranial osteopathy and craniosacral therapy] are distinct?
Yes I did have those symptoms but my main symptom was muscle weakness. I'm not sure what it could be. At the moment I'm just questioning everything because I've relapsed(?) with very different symptoms that I've never heard of with ME. But again this might just be another immune condition altogether. A lot of people with autoimmune conditions have more than one.What do you think you had if it wasn't cfs? Did you have Pem and non restorative sleep?
How long were those symptoms there for and how did it come aboutYes I did have those symptoms but my main symptom was muscle weakness. I'm not sure what it could be. At the moment I'm just questioning everything because I've relapsed(?) with very different symptoms that I've never heard of with ME. But again this might just be another immune condition altogether. A lot of people with autoimmune conditions have more than one.
Did you have non restorative sleep? How did things get better?Hi @nikefourstar. I can understand your frustration but please don't give up hope. We have all been to dark places, but where there's life there's hope. Corny I know, but a lot of what your are feeling (hopelessness) is more than likely a symptom of your dysfunctional metabolism. Please have a look at methylation on this site and ask your doctor for some blood work. He has to do this in any case to get you a diagnosis. It might be that the hopelessness you are feeling can be improved. At my worst in 2014 I was unable to walk the 100 yards to the post box to post my sick certificate to work and was housebound. At the time I was wondering how I would ever get back to work or play with my son again etc etc. I'm now walking 20 minutes a day and can hold down a full time job ( with a few adaptation). I still have PEM episodes but they are every 3-4 weeks as oppose to every day. If you have CFS there are ways to improve things (sleep management, pacing, heart rate monitoring, diet and supplements). Best wishes to you.
During my long remission I was still having constant niggling health issues and stamina problems. I could exercise, bit would feel like I was going to die afterwards, although no PEM. I tried getting a part time job while bringing up kids and my stress levels made me feel ill, and even though I exercised I couldn't get the fit body I wanted. Now I would give anything to go back to that level...I am unfortunately a member of this club too! But the odd thing is in all my years of remission I could always still feel this beast lurking inside me. It's hard to put into words, but I just knew I was still ill / infected, whatever. So, when the recurrence came I was not shocked. Yes, I was greatly upset and madder than hell, but not shocked!
Bingo!Same here. Just this inexplicable sense that I was not quite like other people, that I needed to be more careful or something. When it came back it was devastating but not at all surprising.
I would really like to know your story, how did you first get sick, were you diagnosed with cfs, did you have Pem and non restorative sleep?Bingo!
I have an M.E diagnosis, yes, non restorative sleep and PEM, I've been ill over 20 years, with a long remission in the middle. the past 8 years I've been severely ill. I cant say much more because im too ill and trying to rest to go on a trip abroad for medical treatment. Have you read the Canadian guidelines and the International criteria? (CCC and ICC)I would really like to know your story, how did you first get sick, were you diagnosed with cfs, did you have Pem and non restorative sleep?
I've seen a couple doctors gotten blood work and stool sample tests so I'm like almost positive I don't have cancer or anything like that. But if I am declining this fast then I'll probably be unable to speak within a few months like some of the severe ill
Thank you, I pretty much stopped believing in god after getting this and seeing what it has done to others as well. I'm really just scared that I am worse off than a lot of other people. They way mine came on was so sudden that I feel like I will either be 100% or 0% like I currently am. But thank you for your kind words.@nikefourstar are you on LDN? That has helped me not be bed bound and work PT.
My sis and I both have this terrible illness. She was housebound and essentially bed bound for several years and has improved some. Please don't give up. There are some options out there. You might not be your old self again, but you can likely make some gradual improvements over time.
We spent a great deal of money to see a specialist from Brussels in the US. I can give you a sample list below of what he tests for. US doctors can treat you for these things with antibiotics. Pardon any typos. For ex,
Giardiasis
Cytomegalovirus
HHV-6
H pylori
C. difficile
Chlamydia pneumonia (not an std)
Lyme and related co infections. Don't go off a standard doctors test. Get a good one like igenix.
camplobacter
I'm sure you likely are, but the candida diet helped me with energy tremendously. I can not emphasize this enough. Cut out the alcohol and all sugar. We will get you thru this. We love you, know your pain and struggle and want to be here to encourage you.
Remember, YOU are extremely precious in God's eyes and your family needs you. There are quite a few fb pages for those of us and our families who need support. I have tons of resources. Feel free to reach out and let us know what you need.
Praying for you...
@nikefourstar I know I'm late to this conversation but have been following your posts. I have 23 and 26 year old children who've had very serious health challenges, and know how hard it is to be dealing with something like this when you have your life in front of you. It's not fair and it's scary...Thank you, I pretty much stopped believing in god after getting this and seeing what it has done to others as well. I'm really just scared that I am worse off than a lot of other people. They way mine came on was so sudden that I feel like I will either be 100% or 0% like I currently am. But thank you for your kind words.
I heard stories of people saying they recovered or had relapses and its often described in terms of like '75% back to normal', I don't quite get what they mean by that though since you either have PEM or you don't,
I've been here and back to bedridden and back here again. I definitely have relapsing/remitting patterns to my illness. I've been completely bedridden twice. Right now, I've been in remission for about a two years, though I can feel things are worsening right now.
When I think of being at 75% of normal, I still get PEM, but I can do so much more before triggering PEM than I can when I'm worse.
So, for example, when I'm not bedridden, but instead houseridden, Even 30 minutes of house work broken down into three separate 10 minute 'exertions, could create PEM. When I'm able to work (I am right now), I can work a full day and spend almost an entire hour on housework without triggering PEM. But if I were to try to spend two or three hours on my feet or trying to be social, or traveling, etc, then PEM still fires.
I'm measuring my 'level' based on how much of my life I can actually participate in instead of lie on the bed/couch trying to recover.
I've been at 75% to 85% for two years. But have dropped to around 60% in the last month.
So I have done a lot of research on cfs for a couple months now and it seems like the leading doctors say there is up to a 10% chance for someone with this to recover. Who are these people??