I have ME/CFS AMA

[AHometownGypsy]

I dislike the term CFS personally, but I have been ill with ME from a relatively young age and it is a very misunderstood illness. Happy to try and answer any questions which may help anyone else in the position I was in many years ago

I'm a mum of a 16yo who has been ill with ME/CFS for 4 years so far. As a parent is heartbreaking watching her teen years disappear and her not being able to enjoy or participate.

She is on a very slow recovery now due to rest rest and more rest along with pacing and planning.

My question is - do you think you ever fully recover from ME? Or do you think you will always be planning how to spend your energy?

Sending hope and positive vibes your way

What do you think the misconceptions are?

@KTyoupigeon I am so sorry for what you must be going through, my parents battled so hard to get a diagnosis for me, and even now there are still so many unanswered questions about the cause and best treatment.

I lost most of my childhood and teenage years to ME. I had to repeat a year at school because I missed so much. However, through time and hard work I got good GCSE's and A Levels. I have a BA and an MA and a good career. So there is hope, I promise!

However the smallest cold or bug still wipes me out, and I am very much aware that I need to take care of myself. Yoga really helps! I won't lie though, it is always a worry that I may relapse, especially when I am under a lot of stress

@melodybirds where do I start! I will try and give a few examples

One of the reasons that I dislike the term 'Chronic Fatigue Syndrome' is that it implies that you are 'just tired all the time'. Yes, fatigue is a major symptom but there is so much more to ME

Then there is the chicken and the egg scenario. Many people with ME suffer from depression. Are you suffering from depression or are you suffering from ME and feeling depressed? If you are confined to your bed all day and unable to live your life fully then you are bound to be depressed, but in my experience medical professionals tend to assume the cause is related to mental health rather than physical health.

I could go on and on, I promise!

Op, did doctors ever query fibromyalgia with you? ME, CFS and Fibro have some similar markers I think.?

@LilMadAgain as far as I recall, fibromyalgia wasn't mentioned as such but it was apparent that there were/are common symptoms. There was/is no definitive test for ME, so in my experience a doctor has to rule out other illnesses e.g Lyme disease and Lupus

Hi Op,I have CFS and Fibro amongst other things and find it hard to get people to realise just how hard it is to cope with the fatigue.Family who don't understand that I cannot always attend functions etc.It really frustrates me.How do you make people understand?

Hi OP. I’ve just been diagnosed with fibromyalgia and put on gabapentin after a 10year + battle for diagnosis. I wondered if you take any drugs and if so what?

Do you think anything triggered it? A good friend has had ME/CFS for decades, but when I first knew her as a teenager she was fine. Then she had a series of events - work stress, flu and a sibling's sudden death - and I've wondered if the immune response to all of that somehow set it off.

Thanks ahometown. Is you disagree it's completely psychosomatic then what do you think of seeing a psychologist as a way of treatment?

Good question *empathy. Also do others ignore you suffer from it?

lancelottie

I know the trigger for my daughters ME was Glandular Fever (she has EPV that re-activates in her blood) and then the flu vaccine (nasal) - she has just never fully recovered

@Empathy56 it was a constant battle, and it still is to some extent as I have to turn down things if I'm feeling low so I can rest. I wish I had the answer, but sadly a lot of people don't understand

Hi @ReggieKrayDoYouKnowMyName I was only ever put on a low dose of antibiotics in the hope that it would somehow help. More recently, I was put on a high dose of vitamin D and it has really helped

What advice would you give to someone newly diagnosed, in terms of treatment/recovery and long term outlook?

I've read about miracle diet cures, and lightning (?) therapy. What are your views on them?

@Lancelottie I suffered from recurrent bouts of tonsillitis which left me extremely low physically. My tonsillectomy has to be delayed because my consultant said I was too weak for the operation and I needed to gain weight.I will probably never know for sure what caused it but I do believe that my immune system was hit so hard and struggled to recover.

I had countless blood tests over the years and the only unusual thing was a high neutrophil count which showed that my body was constantly trying to battle something.

I actually do have a theory about extreme acute stress having a severe impact on the body (not limited to ME) but I'm not a medical professional so it is just a random hypothesis

@melodybirds I don't think that it is psychosomatic, but I believe 100% that depression and anxiety go hand in hand with ME. Either as a symptom or a result of often feeling excluded, ignored and doubted. For children and teenagers it can be even worse so I do think seeing a psychologist can be really helpful.

I was eventually transferred to a wonderful psychiatrist who believed that to treat the body you have to treat the mind and vice versa. He was a big advocate of CBT and setting routines. I credit him for everything I achieved to be honest

Thanks for your insight on this.

I was diagnosed with Rheumatoid Arthritis and Fibromyalgia in 1996,and CFS a couple of years later.I have been tested for Lupus 3 times now.My R.A is not under control,is active and they have run out of options for me.My husband had to give up work to become my full time carer.I have various splints,aids,wheelchair etc and yet still people don't understand how these illnesses affect me day to day.I find it very frustrating to not be able to do the things I used to and want to.Depression does go hand in hand also with these conditions.I have been on anti depressants for 22 years now but still suffer badly.I was bedbound for a year 2 years ago,lost 4 stone in weight and lost a lot of muscle in my body.I am now putting the weight back on due to Steroids I am now permanently on.I always believed one day it would all go away,not so much now unfortunately.The only thing I need is understanding.Best Wishes to all those suffering.

Just to add,I was told my RA and Fibro was triggered by the stress of my Father dying from Cancer.Also just after that,I had a nasty virus,I do think stress plays a part in triggering these conditions along with certain viruses/infections.

@melodybirds I hope I helped somehow

@WoahTheWokeyCokey I would first of all say that it must be a relief to have the diagnosis, that is a big part of the battle.

I think that there are still so many questions about ME, so keep an open mind and try different recommendations but be aware that they might not help and please don't spend a small fortune on a 'cure'

I'm not sure that a cure does exist at the moment, but it can be managed and a person with ME can live a happy life. I went from being bed bound to getting an excellent education, a great job, good friends and a lovely husband. As a teenager I thought I would never achieve anything, but it can happen and that is why I started this thread

@Empathy56 best wishes to you too