We are wondering if I've inherited CFS from my father
Posted , 8 users are following.
Hi everyone, I posted about this last year but I've lost the details for that account, so, as things have gone downhill and gotten considerably worse this year, I am posting a new, updated thread with my story and symptoms, I hope that's OK!
Right, well, my father has had CFS since the 90s. He was diagnosed in 2000 after a few years of his exhaustion going unnoticed. He had to rest a lot, but nothing was diagnosed until he collapsed one day while he was out shopping. He's now 65 and has been using a walking stick for a number of years. His main symptoms are fatigue, and muscle pain; sometimes he shakes uncontrollably, his head nods, and his face sort of "squares out" and changes shape, almost, which is how I know he's reached a point where he needs to sleep. Tiredness seems to take over his face and he looks at least ten years older, his eyes look hollow.
The reason we are wondering if I've inherited the condition, is because I've had a lot of symptoms that doctors have been scratching their heads over since 2012. In October 2011 I was in a very anxious state, panicking, with a heart rate of 120, then one day I had an even worse panic episode, was sitting on the floor vomiting into the bin although there was nothing there, and the doctor noticed I had a heart rate of 170, and sent me to hospital. I was there overnight and they concluded that it was psychological, and sent me home with beta blockers. I might have picked up a vomiting bug some time after that, as I was up and down the doctors surgery in a psychological and physical state of chaos, but I don't remember very well. I do remember a day that was spent getting up to vomit over and over, which I think may have been a bug, not the panic. After I came out of hospital I noticed some new and unwelcome sensations in my body, such as indigestion (which I'd never had before), IBS, and a "fuzzy" head, which felt almost light headed. By January I was psychologically better but physically, the symptoms remained. I was getting dizzy at a friend's house. I noticed I suddenly hated the sun because it was making me feel ill. They thought it was the heart rate. The heart rate calmed down. They thought it was the beta blockers. Came off them: Nope. Since 2012, I have had blood pressure monitors, Vitamin D, iron, all of which gave zero results or answers. My symptoms have gotten worse, and this summer I actually wrote a letter to my doctor listing all the things wrong with me. He sent me for a blood test for celiac disease, but it came back negative.
This is a list of the symptoms I can identify right now! I'm probably missing or forgetting something. I'm so used to them. My father has been wondering for some time if I inherited his CFS and triggered it back in 2011.
*Muscle pain (not debilitating, but certainly bothersome. I can't hand wash clothes, even the task of dipping clothes into soapy water causes pain in my arms and back)
*Severe muscle weakness
*Tired eyes
*Light-headed/fuzzy head, sometimes feels heavy
*Neck pain
*Sensitive to noise, light, heat and the sun - get light headed in the cinema or even a loud coffee shop with all the talk and clattering
*IBS - can't tolerate fibre, wholewheat, certain vegetables/fruit; gas, pain, bloating, constipation
*Reflux and indigestion
*Incomplete bladder emptying, takes ages
*Don't feel better after sleep
*Some days feel very ill, best word to describe it "malaise"
*Exhuastion after 4 hours of socialising
*Gauranteed have a fuzzy head and maybe feel ill the day after going out somewhere
*Allergies, stuffy/runny nose
*Some joint pain, but I notice muscles a lot more
*Joints crack
*Sometimes feel as though my skin smells...
*Hormones at a certain time of the cycle seem to make me feel like hell for a week and a half
*Acne, cracked nails, sensitive skin
*Prone to mouth ulcers and ear infections, teeth and gums a bit sensitive, all toothpaste makes white films of what I call "gunk" which is apparently dead skin that the toothpaste burns off
As I say, the blood results for celiac were negative, and there is no celiac disease in my family. Right now I'm sitting here with indigestion and IBS, and pain in my arms. And I am tired. So tired. Come to notice it, my legs and back hurt, too. I was just giving attention to my arms as I'm typing.
Well thank you for reading all this. Apologies if it's presumptuous to come in and declare that I might have CFS when I very well might not! Things seem to be getting worse and we are wondering. The doctors are focusing on the GI symptoms as that is what I'd crack the sky open to change! The rest, the muscle pain and the weakness etc, isn't really being considered now that they're satisfied I'm not celiac. The GI is what I'm fighting, but... what about the rest of it? What's going on?
Thank you again for reading all this. 
Apologies it's so long!
0 likes, 8 replies
jackie00198 pixie95097
Posted
Hi, Pixie--I'm so sorry you're suffering with all these symptoms. The huge red flag for ME/CFS is called "post-exertional malaise (PEM). This means that if you go outside your energy envelope, which can be different for all of us, you crash. Also, the fatigue with ME can be debilitating. For instance, in my case, if I take a shower, I have to lie down for 1/2 hour. Another core symptom is "brain fog," which means difficulty concentrating and focusing, and short-term memory problems. Another core symptom is unrefreshing sleep. In other words, when you wake up, you feel as if you haven't slept. The final core symptom is orthostatic intolerance. This means that when you stand, you can have a racing heart, or low blood pressure. All these core symptoms were defined by the Institute of Medicine in the U.S. last year. A lot of the other symptoms you list are very common with ME/CFS, such as IBS, which is suffered by a very high percentage of people with this illness. Also, joint and muscle pain, and sensitivity to light and noise. All in all, if I had to guess just from what you say in your post, I'd say there's an extremely high probability that you have ME/CFS. It is thought that there's a genetic predisposition for those who get this illness, but of course that's only part of the equation. No one in my family has it. I developed ME/CFS after a bad virus, which I had during a period of high stress. By the way, my digestive problems were helped with taking digestive enzymes.
debbie66909 pixie95097
Posted
jenny19687 debbie66909
Posted
julia24924 pixie95097
Posted
Hi Jenny
I have not yet heard of CFS being genetic, it seems most cases from my own research are as a result of a viral infection. It could be that you share a similar constitution to your father regarding your immune system. It certainly sounds like you have many of the symtoms CFS/FM patients have. The fatigue is probably the most common symtoms that all sufferers note. The fatigue is not tiredness, but rather like a painfull heavy exhaustion, it's so exhausting it can be difficult to sleep, this is usually acompanied with mucle/joint aches and pains, (inflamation). My advice would be to pay for somonewho specialises in CFS. Dont waste your time talking to doctors who havent researched or trained in this field, (high percentage). Each case is different, and like the lady mentioned, it is often triggered by PEM. Once or if you get a diagnosis, you can find a way to work with it. It may be you only have IBS, which can have related symtoms. I sincerely hope you don't have CFS, as it is an ongoing challenge. The fatigue is often bedridden for several days, lifting a mobile phone and texting would cause pain to the fatigued arms. Walking is awkward and the legs feel a little out of control, even when resting my legs during a bout of fatigue, it feels as if there are electric currents running through them. Often my left leg feels numb. My vision is also affected during a flare up, I get blalred vision. I hope this helps. And do what you can to either get a diganosis or get it ruled out. x
MommaT1959 julia24924
Posted
Hi..in addition to what everyone else has pointed out, a key factor is NK cell function ."Natural Killer" cell count is a non-routine blood test. Personally, I never experienced a non-recovering illness but instead am positive for multiple nuerologic viruses and a low Nk cell count, resulting in an "Immune Deficiency Syndrome"(IDS). The other half of the equation is the fatique, weakness, pain and cognitive disorders (CFS). As I understand from my Viroligist and Immunologist, the underlying viruses are common, contagious and usually lay dormant. They are transmittable viruses but not inherited. The viruses become problematic when the immune system is weakened, along with a low Nk cell count and "the perfect storm" of physical conditions ;e.g. trauma, severe illness, non-related pain caused by another condition or injury. For nearly 22 years my symptoms were treated but very specific blood tests and specific MRI studies were not done. 4 years ago, an Immunologist/Virologist and Neurologist put it all together. The key is correct testing and understanding the importance of dormant viral as well as active infections.
Rener MommaT1959
Posted
Thanks for sharing this, I've asked My Primary many times for immunologist and Neoroligist but He said not yet. Not sure why but after a bit over 2 years of constant infections, bunches of pnuemonia, going septic, bacterial and viral infections and auto immune disease that He said I have... Addison's disease. Lots of steroids. I believe it's gabapentin and the other cns meds making me sick. When I started seeing him egitis! I'm done with Him. Take care?as Patient I had 3 regular meds now I have around 22. I just got out of hospital with bacterial men
pixie95097
Posted
Thank you all for your replies!
My dad has a GP/doctor who knows all about his M.E, so we're thinking of asking him for his opinion.
I do have unrefreshing sleep, and sometimes wake up stiff and achy. I'm on the antidepressant Mirtazapine though, which is an effective sedative, so I'm essentially knocked out by that each night! The brain fog I can't be sure about as I have anxiety and depression, which can numb the mind too, but I certainly feel like I've been "asleep" since 2012 - before then I never thought about how much I wished I could "wake up!"
I just saw a gastroenterologist this week, and when I got home from the hospital I was absolutely exhausted. I neglected to take my medications because I just needed to sleep. I slept for about 2 and a half hours but still woke up with an exhausted body and tired eyes. The next day I continued to feel like my eyes were telling me they wanted to close for a few days.
Thanks all for your feedback, I wish you all well, I know from watching my father struggle through this how hard a battle it is. x
AndyC77 pixie95097
Posted
I can absolutley confirm that a family link is very possible. I became ill two and a half years ago and i have four other family members with ME. Some so called experts will dismiss this but they clearly have their heads up their arses. Just try not to say it is genetic because doctors are people of science and i dont think a gentic link has been confirmed so they will outright dismiss it as happened to me.