Posted , 9 users are following.
having a hard time tonight as people who dont have ebv mono cannot understand what this is like ! ive explained a thousand times yet people think you are just down ... depressed..crazy .
my mom still thinks there is a cure and wants me to keep seeing drs and friends want me to do affirmations ....its like im not depressed .. im sick !!! agh!!!
0 likes, 16 replies
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catherine41708 lori93950
Posted
Hang in there. If they have netflix, suggest they watch 'Unrest'.
jan96753 lori93950
Posted
its difficult having to try an explain it, ive given up trying to describe it and ignore negative comments , unrest on netflix is brilliant or jennifer brea does a ted talk on youtube which puts it in a nutshell . hang in there coming to terms with your reality is the hardest , dont worry about anyone else .
elaine62759 lori93950
Posted
I know how you feel! I gave up long ago trying to explain to people as they really don't know what it's like. I've had comments like 'why don't you join a gym', 'well I get tired too', 'don't you get bored sitting at home all day' and 'why don't you get a job to take your mind of it'!!! I think the only people who truly understand what's it like are other have the same condition. We are not lazy, it's not all in our minds, we have a real physical illness!!!!!!
Tutu123 lori93950
Posted
I feel your frustration. Unfortunately the reality is no one will properly understand what you're going through until they have been through it themselves. I find forums like these are a good source of support if you wish to ask questions or just vent upset or frustration. You're not alone. Unfortunately it can come across to others that we are depressed but often the sadness and depression comes as a result/secondary symptom of this illness. Thinking as positively as you can and spending time with people you care about can help although it's easier said than done especially by someone who isn't suffering daily. It's hard to remain positive when there is little help out there for us. Take care x
Dono8555 lori93950
Posted
Try not to get to frustrated, you surely aren't alone!
The following will help you and your family and friends. On Dec. 13 I signed up for a webinar featuring Dr. Jarred Younger held and posted the info for others who might have wanted to participate
Dr. Younger gives a presentation of his new research findings that indicate brain inflammation plays a significant role in the pathophysiology of ME/CFS. With pilot funding from SMCI’s Ramsay Award Program, Dr. Younger used a non-invasive imaging technique to measure temperature and other brain chemistry indicators in individuals with ME/CFS and control subjects. The results showed distinctly elevated brain temperature, indicative of inflammation, in patients.
Because we can't add links on this forum you really need to go to YouTube and enter: ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study you will be able to view it.I highly, HIGHLY recommend watching it, and sending it to your new Doctors to help them understand more clearly the scope of the disease.
I highly, HIGHLY recommend watching it with loved ones, and sending it to your new Doctors to help them understand more clearly the scope of the disease. I forwarded the link to my Neurologist and his associates to give them a better understanding of the science, current research and symptoms.
*Dr. Jarred Younger is an American researcher who leads the Neuroinflammation, Pain & Fatigue lab at the University of Birmingham, Alabama, United States. He previously worked at the Stanford ME/CFS Initiative with Jose Montoya, as an Assistant Professor involved in a notable study highlighting leptin levels and ME/CFS.
He is currently funded by the U.S. National Institutes of Health and Department of Defense to study new techniques for diagnosing and treating neuroinflammation in ME/CFS, fibromyalgia and Gulf War Illness. In particular his work focuses on the role of microglia.
*Dr. Younger is a member of the Working Group which offers their expertise and resources to the ME/CFS Collaborative Research Center at Stanford University.
Sockpim lori93950
Posted
I appreciate your suffering as a fellow person with CFS/ME, but it is curable (partly at least). There have been several success stories out there, so you may not wish to tell anyone else who doesn't understand what you're going through, but you can stay positive with that in mind if that makes sense?
jan96753 Sockpim
Posted
do you have references of success stories id love to read some .i personally have got considerably better over an 18 mth period but am not able to go back to work quite yet . im not sure if what i have been doing with regards to lifestyle diet etc have helped or if i would of got better anyway. would love to hear what you are referring to.
Sockpim jan96753
Posted
Hi jan96753,
I know you can find some online if looking there, but I have two examples of this to share now. One is my own journey (part success so far) and someone else's post. I'll copy in their post below and then write my bit beneath.
s47448Message
Hi have had "M.E" for 4/5 years. Diagnosed by health professional to have all the necessary symptoms. Symptoms........fatigue/weakness, swollen lymph nodes in throat, heavy head, struggled with noise, couldn't do simple tasks like change a bed, relied on husband for most things, mentally slow, foggy, not bed ridden but struggled with everyday life and stopped all the things I had previously enjoyed. Illness started at the age of 35 and I'm now 40.I decided to pay for a food allergy test even though I showed no signs of stomach, bowel, bloating or allergy issues. Result - highly intolerant to COWS MILK. I have been free of cows milk now for 6 months and for the first time in 5 years I'm back to normal which feels like a miracle as I'd resigned myself to a life a of misery and frustration. My nutritionalist advised she has many people with M.E symptoms which turn out to be a severe food intolerance. I don't want to give any false hope but I just had to share this information as I think there may be other people with the same issue and I wish I had found out sooner but I wasn't going to give up and rely on medical professionals with such an unknown illness I had to explore all avenues myself.
Sockpim jan96753
Posted
Hi again...
I've had CFS for about 11 years now (I haven't recovered yet, but I'm significantly better than I was), so when I originally saw that message from s47448 about 5-6 months ago, I emailed them to asking more information about it. (I'll try and give you the shortest version of my current success because there's a lot of information I could ramble on about for hours.)
So... before emailing her I'd been a vegetarian for about 1 year and ate x2 fried eggs with half a tin of baked beans for breakfast every day. (I've been researching food and diet quite a bit for the last 10 years or so due to other health issues, but also because even simple food like onions can be inflammatory on the stomach, which has knock on effects to the body.) I didn't drink much dairy milk, but was considering going vegan around that time too. In the end, I went completely vegan about a month or so before doing a food igG test that I'd found local to where I live (this test is a blood test and checks for food intolerances). The test gives 3 levels of intolerance: low (can eat these regularly, but not constantly), medium (should be excluded from diet for the first 3 months and can then be reintroduced occasionally to see if it makes a difference), high (should never be eaten again).
It was a nice coincidence that I became vegan, because the test came back saying I had a high intolerance to eggs and dairy. It also said I have a medium intolerance to cashew nuts and yeast (I cut them both from my diet for 3 months and just eat them occasionally now). In the consultation I had with the nutritionist, she also recommend some supplements, which mainly included a multi vitamin supplement and an iron supplement. I looked into iron more and then started taking an oral B12 spray (B12 can only be absorbed properly via a spray under the tongue) as well. I also drink water kefir once every 2-3 days, which is a fermented drink that is a stronger form of a probiotic you might buy from a store.
I've been vegan now for about 4 months and although I've still got a long way to go from 11 years of feeling crap, if I look back on how I've been for the last few years, I'd say I'm doing better. Previously, I'd get to work most days, but start falling asleep in my hands just after sitting down at a desk and then burn the candle out at both ends by drinking loads of coffee, crashing at home and then taking several days off sick.
This is a condensed version, so feel free to ask me anything else about it on here or in a private message.
jan96753 Sockpim
Posted
hi ,
thanks so much for that , I have never had a food allergy testing done but i have eaten a very low gluten virtually sugar free and very low dairy diet for the last 18 months. I am considerably better but not back at work . who did your allergy testing for you, i am only looking for reliable testing i know some naturopaths use techniques i am sceptical about , and finances are extremely tight since no work. thanks so musch for your input it is so uplifting to see positive posts 😃
Sockpim jan96753
Posted
Hi jan96753,
You're welcome 😃, hopefully I can be of help to you and other people. Just to clarify, although it says it's a food allergy test, it is in fact a food intolerance test. I would recommend it as if you for example, hypothetically speaking, had a high intolerance to gluten, eating very low amounts of it are good, but the smallest amount of it will restart the gut to act as if you've just eaten some bread very time you eat a bit (if that makes sense?) I was recommended the York test (a test that would be posted to you with an over the phone consultation). The York test was about £230-£275. This worked for the person who recommended it, but I thought I'd research it a bit more and found a place near where I live (Taunton, Somerset). The one I found was £149, so it's worth doing a bit of research online to find a good one.
catherine41708 jan96753
Posted
Hi Jan. My daughter is a success story. She was diagnosed at 15 and by the time she was approaching her 17th birthday she was too ill to read a book. She missed two full years of school. We spent thousands of dollars on supplements and tests and treatments. We tried diet. Nothing helped. In the end, this highly physical illness responded to brain retraining. The nearest thing you have to what she did (we are in NZ) would be the Lightning Process. Our daughter is back at school for the first time in two years. Do not give up!
jan96753 Sockpim
Posted
thanks so much for that, im actually in New Zealand but im sure i can fund that test here. definately worth looking into I think.
catherine41708 jan96753
Posted
No kidding! That is great. Look for Empower Therapies based in Auckland. Worth every cent. I don't discount the value of trying diet too, but it didn't work for my daughter.
caroline_74621 lori93950
Posted
hi Lori,
I've tried to relate the illness with something that the person can understand. For instance when this all started last year i would say. "Imagine having the worst hangover and flu at the same time".When my legs are bad i say "imagine doing a marathon while you have lead weights pulling you down". If people can picture these feelings it helps. If i go out with my family or boyfriend they know that i need atleast an hour's rest before or after, its taken a very long time, over the past 20 years i would have crashes but it would be told to get on with it and you're just stressed.
If someone says they're tired or achy i will sympathise with them as they are suffering but won't go on about my cfs because this makes me sound like a victim and im so much worse than them, that's just not fair.
lori93950 caroline_74621
Posted
yes when people ask 'whats it like ?' i say the same thing ..imagine having the flu a hangover food poisoning and your time of the month ...all at once ! and yes it seems that when you tell friends how bad you are then they go on about how tired they are ? im like theres no comparison !