CFS finally i have a firm diagnosis, only took 9 yrs!

Brain and nerves
1

i have been trying to find out what is wrong since i had 2 bouts of major surgery and an infection!

15 yrs with the same Drs and for 10 i felt like i was going mad. i got nowhere! 

all they would say is "if you want to talk about another symptom, make another appointment"

so a switch to another practice and 3 months later i have been told that i am exhibiting all the symptoms of CFS.

due to waiting list its going to be over a year to been seen by specialist. cant take that.

i have come here for some input in how to cope until i see someone.

depression is a real issue. this i think is because i live alone and after 9 yrs of not being able to socialise i am going mad!

i rarely see anyone these days.

thanks

2

Hi David , 

I got diagnosed with CFS back in 2016... and I'm pleased to say I'm slowly but surely recovering. Step by step. 

Please remember there is no magic cure. 

The internet is brimming with people claiming to have the magic pill and magic supplements , in my opinion it's noncence. 

Your body will slowly repair itself when it's ready. Plenty of rest , but not to much rest !!! Try to force yourself to walk 20 mins a day. Do stretches ! If your body falls asleep and lacks movement you will feel more and more tired ! I know it's hard to get motivation but you must force mild exercise without over doing it and burning yourself out for a week or 2! 

Depression again , adds to extreme fatigue ! I'm not so sure how affective anti depressants are ! Some have awful side affects and can make you more tired !

If you can get on top of depression   Slowly slowly via a councillor and doing different things , different activities and hobbies you will raise the feel good chemicals in your brain. 

Lack of exercise and depression will make people feel very fatigued even if they don't have CFS. 

Try to eat a balanced diet. Sometimes have a burger , pizza other times have veg and fish , pasta etc , drink plenty of water ! 

I don't know if this has helped , and I'm sure your sick of people telling you it will get better with time. But it will my friend ! 

Please make the effort to participate and join groups , anything to stop the loneliness. I promise you if you change them 2 things you will be half way there. 

Try to get 7-8 hours sleep a night. However hard it is , try to fight having a mid day nap! 

Over sleeping can also add to the CFS! 

Keep smiling my friend , take each day as it comes and you will get there !! Ignore the people that don't understand they've never been through it ! 

All the best 

3

I feel for you. I too am struggling with depression over my CFS diagnoses. I was diagnosed about 6 months ago and it took them a year and a half to put a name on it. Before I thought I was going crazy because everything was coming back fine but yet I could hardly do anything physical and also my mental fog was so bad it was affecting my job. I wish to tell you things will get better and easier even after seeing your doctor. Maybe it does help for some people but I am still struggling with depression because I can not do the things I want because my body will not let me. I have no friends because they just think it's all in my mind and think I am just crazy. Most of my family have been supportive. I try to surround myself with things that bring a smile to my face to help with my depression. For example, my dog, i recently got some baby ducks that are so sweet and loving. Plus they dont take a lot of work. I still suffer from depression on a daily basis. If you ever need someone to talk to please private message me. Maybe we can help each other.

4

thanks peeps.

i had not mentioned this. because i didn't think it was needed.

2009 a real bad yrs for me.

every few weeks i was collapsing either my R/L lung. after consulting with a specialist. who stated i had 95% chance of collapsing 1 or both lungs. then he could help me, by doing an op on one of my lungs. left was decided. 

3mths before the op was happening, i had an accident and had to have a hip replacement. subsequently i was diagnosed with osteoporosis.

had the lung op, and a 3 day stay turned into a 4mth stay after developing a infection in my chest cavity. further op entailed to remove the infection.

so because i have osteoporosis and a 95% chance of collapsing my right lung. the op left me with surgical emphysema and i get breathless.

due to these other issues i cant ever try harder because all of the issues exasperate each other.

i feel like a 53 yrs old madman living in a 90yr old body, as a prisoner most days. 

its been said i have a skeleton of a 90yr old woman.

4 different inhalers and 7 types of meds, daily.

i am so tired of things.