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
Sorry to hear the news. I went through the same thing for months...thinking I just need to out what’s wrong and fix it. Wrong. I can give you my opinion, but that’s all it is. The more you listen and learn there is no one case exactly the same. MY OPINION is stay off the meds if at all possible. They just start a whole new set of issues. Happy to discuss this more in private chat. I don’t want to offend anyone...I understand coping is hard. Stay calm...your body wants to fix itself. The first thing i did when I calmed down and thought was go on a liquid fast. A litttle tough at first, but your body can’t rest and repair when its constantly spending energy digesting. I don’t want to write a book, but let me know if you want more info from me. I’m not cured but vastly improved. Good luck!
Welcome to this long journey which I am please to say I have now come out the other side and am almost back to normal.
I battled this condition for many,many years. My diagnosis was confirmed by a specialist but don't hold your breath that you will leave the appointment with a cure, you won't. He confirmed the diagnosis but then how do you fix in. He put me in touch with specialist nurses who told me what is obvious. My GP was very supportive and after too many years of boom and bust I decided I had to fix it as I couldn't going on living this way as I am a very active person. I never bothered with diets or eating certain foods.
How did I resolve this condition so that I can almost lead a normal life now.
2 things worked for me; Pacing and learning to say NO. The later being the most important.
I describe it as trying to run a marathon when you can't even walk. In that state you wouldn't run would you? but that's exactly what we do with CFS, we starting running when what we should be doing is taking small steps. I gave up wprk so I could control my life and started saying No to lots of things so I could control my energy levels. I learnt how much I could do without feeling bad and only do that much nothing more. I remained at that level for a while so the body got use to it and then 1 day I increased it a little, but the rest of the week I did the same amount. Very,very gradually I increased my activity levels. I had relapses, so went back a bit before I went forward.
Three years on every day is a pacing day for me. I just had a mini relapsed caused by doing too much so took a week off from doing anything and starting to get back to normal for me.
I tried to do everything and I couldn't. Its very,very hard to say No that is too much. Without that you will boom and bust which is what I did.
I cycled 60 miles just recently, that's how much this process worked., not bad for someone with CFS.
Sorry for your diagnosis Ruthy.
I like many more have suffered years before diagnosis and have suffered since. As Wknight very rightly says, it is so important to pace and say No!
This is also much easier said than done especially in the interim.
It takes alot to realise that today you really can not do that stupidly easy task that you usually have no problem doing. Not to mention the frustration this will cause.
I suggest on day like this meditate and have some you time! ( you may find you have more than you would like of these) never the less enjoy them all the same and do not feel guilty for them! Again easier said than done x
It won't go away over night hunny, but pacing will stop you burning out. Do geel free to shair your highs and lows. I wish you the best and we are here for each other x
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
Hi Joe thank you for your lovely response. It all started with what they called a virus which led to quinsy. After being referred to the ENT at the hospital they decided to remove my tonsils due to the fact the quinsy wouldn't go. Antibiotics galour and months of being really poorly my tonsils were finally out. Brilliant I thought until 6 days later the Dr found I had sepsis. So after kissing death and a very long struggle to get back on my feet I spent more time at the Drs and being told it will take months to feel normal again. So I left it a few months and couldn't deal with things so went back. I actually thought I might be going through early menopause because of the night sweats and exhaustion.... if in doubt blame my hormones lol. I have had tests every week for months bloods, scans etc and according to my results I am really healthy and normal. No food allergies, no vitamin deficiency, no kidney or liver function issues etc. And that's when he said CFS. In a way I am relieved I finally have an answer and can now deal with it and after reading more about it I feel like I am more in control in a way. Has anyone else got a nose like a sniffer dog and gone off favourite foods and started eating stuff they never liked? Now I'm just rambling sorry so many questions lol
Hi wknight and that's for your reply. I have read about pacing and wondered if it actually worked. I don't want to give up work or my life as I am a social butterfly so I think I will try this. So basically if I work that day that's the only thing I do? And only go out on my days off? (I only work 30 hours a week so some shifts are only 4 hours) I seem to find that in one day I can go through absolute exhaustion where I am dizzy, sick and feel like I can't go on, to talking to myself saying you can do this and I have a ping of energy yet my eyes feel like i have rubbed vaseline in them and everyone then comments I look tired and should get to bed on a night. I have started keeping a diary of foods, how I feel etc to try find a pattern but any advice is more than welcome.
Hi agentdove and thank you. I need to be strict with myself. I've always been 100 mph and need to learn to just slow down and be kind to myself. I do meditate and have lots of crystals. I'm also an aromatherapist so I'm going to look into oils to try and help. I pop ibuprofen like Smarties and it's no good but they take the edge off the pain but avoiding stronger pain killers. Have you ever had any alternative therapies that have helped?
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.
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
Be careful with ibuprofen Ruthy. It can irritate your stomach and cause problems. Personally I can't tolerate any painkillers so don't take them. The ME specialist may well put you on something else for pain like gabapentin. I am on that but it doesn't do anything for my nerve pain. Did put my severe migraine to rest though. Antidepressants are often given too for pain. The dose usually being smaller than when given for depression.
There are various non drug things that can help pain. Reiki , self relaxation techniques. Different things help different people. I constantly have a hot water bottle on my back for example. Helps with pain. X
Just read about your battle with sepsis. A horrible and serious thing. Any wonder you are feeling so bad. Your body has gone through so much.
Yes I have a very strong sense of smell some days. Some days can't taste or smell at all . It is another common symptom .
Try to keep yourself hydrated. Drink plenty of water. We seem to dehydrate easily and that makes the fatigue even worse . The night sweats , another common symptom . X
Hi Ruthy
I do use copious amounts of lavender, be it bed sprays or essential oils. I also subscribe to head space (free taster) (look on android/apple store or pc) it is not cheep for the full version but the taster is good. It has really helped when things get bad with pain and guilt!
I also have regular sports massage and my masseur is very knowledgeable, again not cheep but works for me.
It really is just a case of getting in touch with your body and be willing to listen! What is good for me may not be right for you as we are all very much individuals in our own right.
I really do wish you the best as I know this is not an easy journey you are on. Please do get back to me if you have anything you would like to ask!!
xx
Hi Janet. Because I had sepsis I have blamed that for everything. The pains, the sore throat from tonsil op, the sweats I thought was early menopause and I put the food and smells down to hormones. I've always had a bad back so I was blaming most of the pains on that or thinking I had slept funny. Not once had I considered cfs/me. It's like I can remember everything from years ago but not what someone just told me. Not sure that's a symptom or just me hitting 40 lol. Again thank you Janet x
You definitely have CFS/ME Ruthy . I was trying to say the infections you had then the full sepsis is what led to it. The cognitive issues are so frustrating aren't they . The shot short term memory , concentration etc. I completely empathize with you . Take care x
Hi Janet I try not to take them if I don't have to but I have terrible pain in my neck and shoulders that just won't shift at the moment so they are just taking the edge off. I always eat first though even if it's just a banana so at least they aren't going on an empty stomach. I am Reiki attuned so do a lot on myself since the sepsis but my auntie is coming to visit soon and she does alsorts of alternative therapies so I will let you know of anything helps. Im looking into a few different essential oils, I'm an aromatherapist so I will experiment and share my findings. I also make crystal bracelets for ailments and had great success with my friend who has fibromyalgia.... never thought I'd be making one for myself. I'm always the friend that makes people better x
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
Really good you have these alternative things to turn to. I have spondylosis in my neck. Get dreadful pain. Also like electric shocks down my arms and legs. I use the hot water bottle there too. Had a frozen shoulder for two years. which left some issues too.
It is the actual frequent use of nsaids like ibuprofen that can cause gastric problems . Even if you take them with food. Do you have any gastro reflux at all ? I have it . On omeprazole . But I have to take aspirin as I have atrial fibrillation . Another gastric irritant ! The omeprazole protects the stomach lining x
I have a friend who is a reiki master. All it ever does for me is relax me. It's amazing how she picks up where my pain is the worst on that occasion. She did amazing work with my cats ! Communicated with my poorly cat . Was truly heart rendering. X
Hi agentdove yeah lavender is one oil I always have it treats so many ailments but I'm just not a lover of the smell lol. I will try anything though. What is head space? I'll take a look.
My main issue at the moment is I need to talk about it. I've gone through the emotional crying, denial that the Dr must be wrong and he's going to ring and tell me I'm allergic to cheese or something (I know this isn't going to happen because I asked him this when he gave me the diagnosis and he showed me the test results for allergies and food intolerance and all fine) I've been pretty angry today at some people's reactions. I'm guessing this is part and parcel and you've been there and bought the t-shirt?
I've started a diary of foods drinks and ups and downs to try see of I'm most lively at certain times or after certain foods. This week I seem to be worse than ever with brain farts and just this absolute exhaustion to the point I could cry but maybe because I've been emotional finding out it's drained the life out of me.
Do you ever get the feeling like you've got Vaseline in your eyes and can't quite see. My eyes seem to go pretty blood shot when this happens and soreish. This is the point people tell me I look tired and to get to bed on a night. Is this something you've had? Xx