Pain Concern

CFS/ME Relapse

I am 20 year old female and was diagnosed with CFS/ME back in 2016. I have had a number of what you would call 'relapses' where I have been very ill and fatigued, but nothing which has been concerning. I am currently experiencing a relapse for the first time in over 6 months but this one is very different. I woke up with swollen glands and a headache, sore throat, fatigue and joint pain etc. However, this one has left me bedridden to the point where I cannot move. My body feels bruised internally and externally. I went to get out of bed and realised I could not physically move, my limbs, especially my legs felt as heavy as lead. Even sitting up was a huge challenge. When i went to stand up my legs gave way and I just collapsed on the floor. I'm at uni and all my housemates have gone home for the weekend so I couldnt get help. I managed to push myself up off the floor after about 20 minutes or so. But even walking to the bathroom is near impossible, my legs feel unsteady, my limbs feel too heavy and I just feel extremely weak- to the point whereby sitting up and down is agony, even just breathing, swallowing and moving onto my side is unbearable, I have taken ibuprofen and paracetamol but it doesn't seem to do much.

Does anyone else with CFS have these sort of symptoms to this extent, I feel like I am a 20 year old in a 90 year olds body.

Thank you.

19 Replies
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I don't know much about your condition but if you are in such a bad way and no one to help you...then call for an ambulance.

Have you any family or close friends you could ring?

x

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I don't feel as though anything could be done about it though, if it is a relapse there is no cure for what I have. Thank you anyway, but all my family live 4 hours away x

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Are you 100% sure you are not actually hypothyroid

Far too many people are given the label of ME/CFS when actually they are hypothyroid or have pernicous aneamia etc

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Hi, I am about 95% sure I am not. I have been undergoing tests for 5 years and everything has been ruled out- I thought I had an over-reactive thyroid because I have almost all of the symptoms but drs ruled it out

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I have been on a thyroid forum for many many years and you would not believe the number of people told theres nothing wrong because their doctors and endos simply do not begin to understand the complexities of thyroid especially Hashimotos and Central or tertiary hypothyroid

Few doctors also understand the hell of aluminium poisoning or gluten sensitivity and host of problems instead they slap the CFS label on

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Hi amc123. It sounds like you now are also suffering the symptoms of fibromyalgia, together with CFS. This is what happened to me in 2004. I became bedridden for 6 months and could hardly walk. I aches all over, was suffering terrible migraines. Kept being sick which caused me to lose my voice for a few days. Had to have a commode in my bedroom as could not walk to the bathroom. Was unsteady on my legs. They would tremble when I tried to stand up. And I would fall on the floor. I even struggled to eat my food which my parents cooked for me. Partly due to not wanting food and mostly as it was a struggle to move my arms to feed myself. I felt constantly exhausted at the same time. It is very frightening to go through all this. Especially when you are all alone in the house. Yes my advice also would be to call 999 as you are all alone in the house with nobody there to help you. Going to hospital will speed the process up as concerns identifying what is causing your symptoms. And ask for some metal crutches. If you don't feel comfortable call in 999 then you could try 111. The non emergency helpline for advice and they will help you. Or call out of hours Dr surgery.

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Thank you very much for your reply, that sounds exactly like how I am feeling right now- especially the aches, struggling to eat, drink and walk.

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Sounds like you have overdone things the other day when you went trampolining. With CFS/fibromyalgia it is best not to do very intensive exercising. And not to over do things. Your body has its limitations of what it can do. Best exercise is walking I find. But don't do too much in one go. Build up gradually. Also balancing activity with rest is key. When you start feeling the fatigue building up stop if you can and have a lie down or a rest. I am so sorry to hear that you are feeling so poorly. And Hope you soon begin to feel lots better. But right now you need plenty of rest and time to recover. Have you any friends nearby who can help you? I know exactly how you are feeling right now. And Hope you soon begin to improve and feel lots better. Take care and look after yourself xxx

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I definitely have, forgot the consequences exercise can have- even just walking can make me flare up so no idea why I thought I could trampoline like i used to before having CFS. Thank you so much, all my friends are visiting their family as we have just finished exams so no one else is around, most don't understand how I can get so ill from exercising either and they pass it off as me just being 'unfit' so they don't tend to sympathise. Thank you though, you too xxx

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Do you have a fever? This could also be flu as there is a lot of it going round.

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I don't think so, with CFS it feels as though I have a flu all the time so I wouldn't have a clue

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And that is the problem, it can be hard to tell the difference between 'normal' joint aches, fatigue, sore throat, and flu caused joint aches and pain, fatigue and sore throat.

I can remember the last time (which was also the first time) I had flu. It started with aching in my legs and I just thought here we go again, my joints are aching. I had a hot bath to ease it then went to bed. The next morning I couldn't get out of bed!

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Exactly! I went trampolining the other day for an hour and I think that set everything off- has put me off exercising forever

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Hi darling I also have cfs/me an I struggle to this extent when I relapse. Unfortunately it is all part of the condition. We go up and down and never know what will happen from day to day. I can be bedridden for weeks and then the next month be walking around fine. I have been diagnosed with this for 5 years now and I have never really understood it properly. I watched a film called UNREST on Netflix the other day and it gave me a massive insight into how others with the condition feel. I advise you to watch it. This won't help you now but it's a great film to understand what is going on with your body. Keep yourself rested, well hydrated and try your best to eat little and often. I advise you call somebody to come and help you until you are starting to feel a bit better. It will pass. It's your bodies way of telling you to slow down and take care of yourself. Your body is extremely tired and plenty of rest will help you get back on your feet. I know it's horrible. But you will get better it's just a blip. If you are scared then contact your GP and have a chat with them. Sending you lots of love and hugs xxxxx

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Thank you so much, so nice for someone else to understand and reassure me that it'll pass! Bedridden for weeks sounds awful:( It is so true, never know when relapses will strike. Hoping this will be few day thing. Going to watch that Netflix film now! Thank you, take care xxxxx

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Hopefully for you it will only be a few days at the most. Keep yourself warm and just let your mind and body have time to rest. Unfortunately for us if we do to much or we get stressed/upset. Anything can trigger it. It's amazing how our body just completely breaks down. But just remember it does it to tell you to stop and care for yourself. It will all be ok lovely. Keep yourself dosed up every four hours to ease any aches and pains. If you can then maybe fill a hot water bottle. That film is incredible, it really made me feel better about myself and how I wasn't alone 😘😘 Always here if you want to chat xxxxx

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So I ended up calling the hospital and being put on penicillin for tonsillitis. Although stating that I collapsed and that my legs gave way a number of times this did not concern the doctor in the slightest, the nurse didn't even know what CFS/ME was.. oh dear, always here to chat too xxxxx

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Oh bless you. That will be why your cfs is playing up then as you have tonsillitis. Being ill is always a trigger for me I don't know about you. Not nice having to deal with both ☹️ How do you feel this morning? Most people Drs/Nurses/friends haven't a clue what it is either. It's very frustrating. I have Functional Neurological Disorder as well and I was in hospital 14 weeks before I got sent to London and diagnosed. Nobody down south New what was wrong with me. It's pretty scary that we know more about it than they do xxxxxx

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ADD is an umbrella term which doesn't mean much as can cover so many different conditions. However, M.E can be a devastating illness and cause what you are experiencing. You need help and people around you who can support you. M.E is a painful and debilitating condition which people tend to disregard as nothing. Fibromyagia is often far more treatable.

Get help and be careful.

Karen

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