Damn that sucks, to what extent does it affect your life? And how were you diagnosed?
Original post by Top_Lad
Damn that sucks, to what extent does it affect your life? And how were you diagnosed?
It affects my life as I get tired very easily, I struggle to focus in lessons on bad days, I can’t walk very far (partly due to chronic knee problems associated with it). Another symptom of CFS is joint pain and I’ve had knee problems for 4 years, straight after I had glandular fever (that’s what my doctors think caused my CFS). I was finally diagnosed after 5 doctors, 11 physios and 2 chiropractors continuously said that everyone gets tired and nothing was wrong with my knee. I went overseas on an adventure trip where we climbed a mountain in the 4th week. My body really struggled and I didn’t summit the mountain. When I came back home I couldn’t walk more than 400 metres without struggling and so finally persuaded my GP to refer me to a orthopaedic surgeon, who did an MRI, which showed nothing wrong, and so he referred me to a rheumatologist. The rheumatologist was amazing and was the first person to take me seriously, he did blood tests and testing me for everything (even lupus as I have a family history). He originally thought I had fibromyalgia but I didn’t have the many pain regions needed and so he finally diagnosed me with CFS, which I fit all of the symptoms. I also have developed hand issues and so now have permission to type in my exams. I’m so glad to that rheumatologist.
What does that mean for your day to day life ?
Original post by Pathway
What helps you through the bad days?
This is going to sound cheesy but history documentaries (massive history nerd), Reasons to stay alive by Matt Haig and then if I’m home my cats really help.
Original post by tats1234
This is going to sound cheesy but history documentaries (massive history nerd), Reasons to stay alive by Matt Haig and then if I’m home my cats really help.
Ah, I've heard a lot of people like that book!
Are you getting any treatment at the moment for your CFS? How's it going?
Original post by Pathway
Ah, I've heard a lot of people like that book!
Are you getting any treatment at the moment for your CFS? How's it going?
Are you getting any treatment at the moment for your CFS? How's it going?
There’s currently no actual treatments as they can’t pin down exactly what caused it but I’m on amitriptyline to help me sleep and then I’m currently on Ibuprofen 600mg twice a day (since August) but after lockdown I’m going to the doctors to see if there is any other meds I can be on for my pain as ibuprofen isn’t good long term and also to check out the fact that I’ve been getting light headed when I stand up quickly
Original post by markova21
How many hours, in the usual 24 hour period do you normally sleep for ?
If I forget to take my evening meds then about 4 hours (CFS can often cause sleep issues) but if I take my meds then usually about 10 hours but I can still struggle during the day
Original post by tats1234
There’s currently no actual treatments as they can’t pin down exactly what caused it but I’m on amitriptyline to help me sleep and then I’m currently on Ibuprofen 600mg twice a day (since August) but after lockdown I’m going to the doctors to see if there is any other meds I can be on for my pain as ibuprofen isn’t good long term and also to check out the fact that I’ve been getting light headed when I stand up quickly
Sounds frustrating.
CFS is quite commonly diagnosed alongside a bunch of the conditions I have. So I understand in a lot of ways. If you want to talk or get support or anything, you're more than welcome to drop me a message.
Original post by Supernova36
What does that mean for your day to day life ?
It means I have to be careful of what I’m doing and tracking that. If I do a lot one day then I know I have to take it easy for a couple of days. Lockdown is a good example, whilst others are going on walks/ runs usually once a day, I go for short walks every couple of days as otherwise I struggle. On bad days I can‘t focus in my 3 A level lessons and on normal days I can focus but it’s a bit of a struggle. But my energy levels can vary greatly from day to day or even within a day so I take things on a day to day basis and modify as needed!
Original post by Pathway
Sounds frustrating. CFS is quite commonly diagnosed alongside a bunch of the conditions I have. So I understand in a lot of ways.
If you want to talk or get support or anything, you're more than welcome to drop me a message.
CFS is quite commonly diagnosed alongside a bunch of the conditions I have. So I understand in a lot of ways. If you want to talk or get support or anything, you're more than welcome to drop me a message.
Thank you! What conditions do you have, if you don’t mind me asking? I currently haven’t been diagnosed with any other conditions but my parents and I aren’t sure that we’ve found out everything wrong with me as the lightheadedness isn’t a symptom and I also often struggle with my temperature as I will suddenly go from freezing to boiling and vice versa.
I have recently been wondering if I suffer from this condition, which is why I asked you how many hours a day you would sleep. My blood tests about 9 months ago told the doctor i was anaemic, and he gave me iron tablets. I don't get them anymore, and because of the lock down, I haven't had my routine bloods taken for some time. I often go to bed between 10 and 11pm and sleep for 12 plus hours every night. If i'm not busy, I will also nearly always fall asleep in the afternoon too. From about one o'clock until about 6 in the evening. Then going to bed 4 hours later being very tired and sleeping throughout the night. I know this isn't normal. During the last few weeks I have felt so physically exhausted even though I sleep lots, that I have almost been reduced to tears. Just feel thoroughly exhausted all the time. I am 52 and at the very start of the menopause, so maybe this has something to do with it, I don't know. But as I said, I have been wondering if I suffer from Chronic Fatigue Syndrome myself.
Original post by markova21
I have recently been wondering if I suffer from this condition, which is why I asked you how many hours a day you would sleep. My blood tests about 9 months ago told the doctor i was anaemic, and he gave me iron tablets. I don't get them anymore, and because of the lock down, I haven't had my routine bloods taken for some time. I often go to bed between 10 and 11pm and sleep for 12 plus hours every night. If i'm not busy, I will also nearly always fall asleep in the afternoon too. From about one o'clock until about 6 in the evening. Then going to bed 4 hours later being very tired and sleeping throughout the night. I know this isn't normal. During the last few weeks I have felt so physically exhausted even though I sleep lots, that I have almost been reduced to tears. Just feel thoroughly exhausted all the time. I am 52 and at the very start of the menopause, so maybe this has something to do with it, I don't know. But as I said, I have been wondering if I suffer from Chronic Fatigue Syndrome myself.
I completely understand how you feel. Before I was diagnosed I was having to go to sleep during lunch just to make it through my afternoon lessons. I would go to a doctor and ask, there is no test to do for it and so its much more a ruling out of other similar conditions. Beware though, some doctors don’t believe that CFS exists, and that can be very hard to hear so I’d say go see a doctor but don’t expect quick answers!
What sort of tests did you have done to diagnose ME? I know sometimes it takes ages to get a diagnosis
Are there any food or drinks that make your symptoms feel a lot worse?
I am helping to look after a young woman with a lot of trauma and diagnosed health problems who I suspect has either CFS or fibromyalgia.
I am helping to look after a young woman with a lot of trauma and diagnosed health problems who I suspect has either CFS or fibromyalgia.
Original post by TensaiShoujo
What sort of tests did you have done to diagnose ME? I know sometimes it takes ages to get a diagnosis
I had blood tests done to rule out any other diseases as well as tests to rule out fibromyalgia. I also had an MRI on my knee and an ultrasound on my hands to check if there was anything wrong within there.
I was fobbed off by doctors for 4 years who said everyone gets tired, do exercise etc, but it was through a new rheumatologist that finally diagnosed me.
Original post by londonmyst
Are there any food or drinks that make your symptoms feel a lot worse?
I am helping to look after a young woman with a lot of trauma and diagnosed health problems who I suspect has either CFS or fibromyalgia.
I am helping to look after a young woman with a lot of trauma and diagnosed health problems who I suspect has either CFS or fibromyalgia.
I find that if I have a lot of high sugar food or drink that makes my tiredness worse but I find that just eating healthily (with occasional sugary foods) helps but to be honest the biggest thing that keep me not too bad is my meds.
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