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
*Light-headed/fuzzy head, sometimes feels heavy
*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
*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