Just been diagnosed
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Hi everyone I'm new to this site. I was only diagnosed a few days ago with chronic fatigue and I feel like my head may explode with all the reading I have done on do's and dont's. I am being referred to a specialist and not really sure what to expect. My initial response to my doctor telling me was "are you joking" I thought I was going through the change early or needed some sort of magic pill to perk me up. This wasn't the case and I guess I'm just looking for some advice as I'm finding it hard to accept. Did anyone else feel like this when they got their diagnosis? Any advice or input would be more than welcome. Thanks x
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janet71271 Guest
Posted
Hi Ruthy
Sorry to hear you are enduring this damn disease too. Which chronic fatigue syndrome. Not just chronic fatigue , which is just one symptom which can be present in many diseases and conditions. I was diagnosed with ME as it was called then ,21years ago. But had started being unwell a year before .I am moderately to severely affected. And housebound. I had to take ill health retirement from nursing. I have never accepted that gut did have to come to terms with it as there was nothing I could do about it .
I won't load you with even more stuff hear as your head must be spinning with all that reading. I can understand how you must be feeling and reeling from what your Dr said. I assume other conditions and diseases have been ruled out ?
Is it an CFS/ME specialist you are going to see? My consultants were endocrinologists . But I did twice see a professor who was researching ME and I took part in his studies.The first endocrinologist had a great and well informed interest in ME . He referred me to him privately . He had me do things like an elimination diet to determine if I had food intolerances. Which I already knew I had. Gluten, wheat dairy. I also had many more blood tests. An MRI scan to rule out MS.
It will take you a while to fully absorb your diagnosis. I would imagine the CFS/ME specialist will do any tests not yet done. Take a full history. Suggest a plan of action.. the main thing is to try to keep calm as stress is an enemy of CFS. Just makes all symptoms worse. I have no idea what he/she will suggest , but if a graded exercise programme is advocated, please be well informed of what it entails. Exercise is not across the board helpful for all people with this disease. And has made many much worse. It depends on the current severity of your symptoms . In any case, take things very steady.
Try not to push yourself too much physically or mentally. Pace your activities with rest in between. It is not a race . Try to be patient as it can take months if you are going to feel any better. No one knows how it well pan out for you. We are all different. You I'll hear from some that they got better. They likely didn't have full blown CFS. Indeed a post viral fatigue . They can often resolve. Then you will hear from people like me who never feel any better. Others who have good spells ,but also relapses. Some manage to work many don't. Basically ranges from mild to moderate to severe. With varying degrees and overlapping .So a very mixed bag. I am sure you had read that though !
At this time, don't overdo things. Pace yourself. Think about what you would like to ask the specialist. Write it all down to take with you. Put the CFS reading to one side and look at pleasant things instead . Relax your mind which in turn will help relax your body. And you will then be better equipped to deal with things. You will need to come to terms with this in the end ,but you don't have to worry yourself totally accepting it. Some might say they are the same thing. To me they are not. I made my peace with it. Frustrating as it still is!
Sorry wrote more than I intended. So well leave it for now. I know others will respond soon . Some really lovely people on here. Ask away with any questions. Don't hesitate. Sharing experiences is good for everyone. I hope the specialist can help you. Let us know how you get on . Take good care x
Guest janet71271
Posted
Hi Janet thank you for your reply. I believe I've been tested for every disease known to man even scans and kidney and liver function. Dr said he was referring me to a chronic fatigue specialist but I will let you know when they get in touch as to who they actually are. I have read so much conflicting information but maybe you can answer this question for me. Is it better to get up at the same time every day or just let your body just wake up naturally? Some say you should force yourself up to regulate your body clock and some say the opposite. No matter how much I sleep or don't sleep I wake up knackered and have to force myself to get a shower and dressed just to go sit on the sofa. It's 12.23 now and I'm still in pjs sat in my bed and feeling guilty as hell that I'm not up.
janet71271 Guest
Posted
Hi Ruthy, just listen to your own body. There is no right or wrong. you do whatever you feel on the day. Some people send most days in PJs all day long. Personally I prefer to get dressed but it is not as you and takes me a couple of hours to get myself together. I seem to have got into a habit of getting up at around 8am. It s odd really as it doesn't matter when I drop off to sleep, I always eventually wake at 8am ! I don't sleep well. Wake every couple of hours. And woken by pain. I have nights with hardly any sleep at all.
Prior to 7 months ago my cat got me frequently during the night for at least three years.And I spent the seven months of her life on the sofa every night. Which was a bit easier than getting it off bed . Plus avoided the stairs. ! So the 8am getting up is since she died in May. I can't stay in bed anyway due to severe discomfort and pain in my back and legs. I have been dealing with all this many years so have tried all manner of times to get up. I do have to be in bed by 8 pm . Like you describe I never feel refreshed from any sleep.
Try not to rigidly follow everything you have read. Various things conflict . Somethings are helpful something things very adverse. Best thing is listen to your body. Don't push yourself too far. Above all never feel guilty. You have nothing to feel guilty about. You are not well. You are certainly not lazy. So do not worry.
We are all individuals and all different. Just do what you feel up to. Take care x
Guest janet71271
Posted
Hi Janet I think it's people's reactions that have stunned me the most. The whole 'well we are all tired' and the ' get yourself to bed on a night' and the one where it's all apparently in my head.
I think like you I'll have to get dressed as it just doesn't feel right being in pjs and a nice hot shower seems to help my neck and shoulders briefly. I may invest in a wheat bag see if that helps.
Regarding your legs and back pain, have you tried a memory foam topper for your mattress and a tempur pillow? I have a topper and a tempur cloud pillow and it helps take the pressure off my back (had a bad back since I was born) these things really helped me and I think maybe why once I get comfy as long as I don't move in my sleep I stay asleep x
janet71271 Guest
Posted
Oh yes I still get those comments after all these years. One neighbour told me I just have to work through it and I will be fine ! Oh really . Thank you for that revelation professor !
I can't tolerate a shower as painful. I also have fibromyalgia. I do like a bath. Feel awful afterwards but helps a little with pain and to relax. A few times a week I put a handful of Epsom salts in it. Some swear by it.
We have a memory foam mattress topper. A fairly thick one occticoil of something
Iike that. Better than just the bed mattress but I still get a lot of pain. I have to sleep semi upright since the frozen shoulder. I slip down which wakes me up . Not just pain but pins and needles and some numbness in my arms. Last week I woke up and couldn't feel my right arm and hand . Thought I had a stroke ! X
Guest janet71271
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janet71271 Guest
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