Sudden weakness

Thank you Janet for always replying and sharing your experience. I truly appreciated it.

Have a wonderful day!

My pleasure taro . hope your day is as good as possible x

This is the worse my cfs has been, I almost past out at the doctor's office. I couldn't even do blood lab because I was so weak.

I've been resting and drinking Pedialyte like haily suggested. I don't even know what to do anymore and doctors don't know what to do to help me. Except to increase my salt and put me on Amitriptyline for sleep and fatigue.

I searched up amitriptyline and it's a antidepressant and I'm not sure I want to take it as I don't want side effects or mess with chemical activity in my head.

What are you doing to cope with the extreme weakness, dizzy, nausea?

This illness is so unforgiving, I feel like a lifeless body just occupying space. I pray that things do get better, it's just been pain and suffering from cfs......sighs

Have you been to a ME/CFS clinic? my first appointment is end of jan so do not know what to expect, from that point of view I cannot comment however with the nausea/dizzyness I find distraction to help me best at the moment. This could be anything from listening to the radio to searching random things on the web im interested in ect. It take my mind away from how crap I'm feeling.

Sometimes I will feel too rubbish to even do that and will just have to lie down and close my eyes. When I get like this I will listen to a body scan meditation or similar relaxation video. I did have to search around as alot them I find a bit strange or the voice won't be relaxing at all.  I often am not hungry due to nausea but find that if I eat/drink a small something it tends to make it slightly better even if this is a cup of sugery tea.

I'm also strongly keeping the faith and belief that  it will not always be like this and wether thats true or not, i have decided to believe it will improve in order for me to stay sane and not become depressed. I take every day and the individual day and try not to worry about the day after and this has eased my symptoms aswell I think. 

The cfs clinic over here has a long waiting list, the doctor said it could take longer than six months.

I also do the body scan meditation and the relaxation one with positive affirmation. It helps but sometimes it gets overwhelming and I break.

I agree about keeping the faith. I have to pray everyday just to get through and tell myself that I'm recovering and my body is renewing itself and to be patient.

I never thought my life would be like this in my thirties, before always healthy and now so unwell and unbalanced. I still can't wrap my head around it. It's like a thief came during the night and poisoned my body.

amitriptyline is quite commonly used to help pain in CFS. A much smaller dose than is used for depression. But can still cause some drowsiness. I was once offered it but turned out it was contraindicated with the heart med I have to take. I wasn't keen on taking it anyway. Some find it useful .

Sorry to hear you are feeling so rubbish. Fully empathise. I never feel well or better. But have even worse days and lover periods of being much worse. Pain been much worse for a while .

Why do your drs want to increase salt ? Is your sodium level low ?

Try to keep well hydrated with water. X

Taro CFS is a very difficult disease to get your head round because there are so many symptoms that in themselves are changeable . even by the hour each day. If possible it would help if you could focus on something positive . I am fully aware this is not easy when you feel so bad but it can help to distract you a bit. Sometimes thinking too much about your issues can make it even worse. Becomes a vicious circle. Try not to expect too much of yourself . it is disappoint and frustrating when you have previously been healthy and active.

If praying is your thing that is fine. Whatever helps you. Personally I am an atheist . I still take each day as it comes even after all this time.! I vary by the hour and never know how I will feel from one end of day to the other. Is the nature of the beast that is CFS/ME. X

You have the right frame of mind lexilou. There is no point worrying what the next day will bring.

The constant nausea is overwhelming at times isn't it . x

My sodium levels are within range 137(135-145) my doctor doesn't know why I am feeling sudden weakness and faint as my bp fluctuates from high, normal, and low. She doesn't know why my bp is like that and I also have frequent urination, so salt was her advice.

I am nervous to take anymore meds as the last time with cyclobenzaprine gave me bad side effects. It did help with sleep but the side effects were too much. Especially the heart palps, dizzy and stomach issues.

Since doctors don't fully understand this illness, I am very hesitant at times if I am harming myself in the long run by just taking what they prescribe me. I'm confused alot of times of what to do and a little discourage.

All I can do is just take it one day at a time and hope for the best and prepare for the worst. I guess that is my reality now.

You are so right, I do need to stop searching and reading about cfs or else I will go insane. I think I should focus on other things and just rest.

I just get more worried. I think I just need to accept that it's just cfs acting up and not try to look at other illness to blame my symptoms. Hoping to get a break that it's something else and not cfs.

Thank you for the advice.

You might have POTS postural orthostatic tachycardia syndrome. if your bp is up and down. Other symptoms are feeling dizzy, fainting , headache , fatigue, palpitations ...... Have you been investigated for this at all ? A lot of people with CFS have it . And it is a condition in it's own right too in people who do not have CFS.

Try not to think you should prepare for the worst. Had at this stage I know. I would hope you will eventually feel better than you currently do, so try to focus more in that direction. X

Yes I'd leave off reading too much about it. Medical professionals differ in their opinions which can confuse and worry you further and get you even more down when already feeling low. The important thing in the early months is to rest and avoid too much stress . Pace yourself and take no notice of other people who have no concept of how you are feeling . They are just wasted energy .

Oh and about salt. For years it has been used to help some people with CFS/ME. Apparently helps some during crashes but is not long lasting or a cure. Have you tried Epsom salts in a bath.? Some swear by it. I find it helps a little with pain , but cannot sit in a bath for too long and it makes me feel rather whoozy and sick anyway having a bath. Although I have one everyday and use the Epsom salts a couple of times a week. A handful or two of the salts .The instructions advise 15 to 20 minutes in it in the bath and then rest for 15 minutes afterwards . Is worth a try . X

Thank you I will try the epsom salt. As for POTS, my doctor requested a tilt table test but my insurance denied it because they didn't think it was medically necessary.

She said with pots either give me salt tablets and beta blockers. So I am increasing my salt and water. See what happens.