What are your main symptoms for CFS?

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So it's been around 3 weeks being officially diagnosed with CFS. My symptoms fluctuate excessively... I can't keep up.

Week 1: I was feeling better every day, I didn't take the medication I was prescribed as I was in denial. But I was feeling very sleepy here and there.

Week 2: I began to feel worse again, my fevers/feeling hot began to re-appear, just sore muscles and week feeling.

Week 3: Burning sensation when urinating (got tests done like STD's and UTI) and as all of my results come back with negative. I'm feeling very feverish, cold and hot, headaches, brain fog, memory issues, and so many more. But I thought the "Fatigue" as in the name would be more prominent in my symptoms, but it certainly isn't my main issue i'm facing and if I do face fatigue, its more to the afternoon.

Does anyone go through waves or that it goes away after a while? I suspect I've been living with this for a few years now, and I remember when I first noticed my feverish feelings that it went away after a few months, but then would return. 

I'm so confused, and as I did post a few minutes ago, I did just start finally taking my medication I was prescribed. 

So really my two questions are;

So what are your main symptoms, and does anything trigger them off?

Do you have the constant "Feverish" body aches and feeling like you have the flu but it not going away for months? This is the symptom that drives me insane. sad 

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10 Replies

  • Posted

    Hi there!  So sorry you're feeling so poorly and really hope that improves soon.  I've had this illness a very long time, about 37 years, and in my experience the symptoms fluctuate very much indeed. And I also get the sort of feverish flu-like symptoms as well.  My symptoms are many and varied and there have been times when I thought I was getting over it completely.  Stress, lack of sleep, extra exertion definitely will trigger a relapse.  The fact that this illness is unpredictable and fluctuating is probably one of the most frustrating elements of it, especially as depending on how you are you can do something which just a week or two later would be out of the question.  i find this frustrating and I also think it makes it hard for others to understand and tempts them to think you are malingering when you say you cannot manage things they have seen you do at other times.  Understandable I guess unless they learn about the illness.  For me fatigue is often not the main symptom but rather muscle and joint aches and pains, muscle twitching, brain fog, nasal and sinus sores and swollen lymph nodes.  Oh and IBS but that has been greatly improved by a low FODMAP diet - you can find details of that  online or from your GP if it is relevant.  Good luck and hope you feel better soon!

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  • Posted

    Ups and Downs are a constant problem. It happens because you use up too much energy when you feel good My GP calls it boom and bust. Once you learn to control the boom and bust, which I have done now, I can start to lead a normal life. 

    As for symptoms they vary for everyone, I know now when I am about to fall because I get very cold, and that is a sign I am very tire, so time to stop and go to bed and rest. 

    If the doctor gives you meds, why not take them. I fail to see the point in processing the prescription and if its a NHS one then chances are the medication costs more than your payment and that is money being wasted by the NHS if you don't take them. You also have to give meds a chance to work. There are none specifically for CFS but some of he meds can help relieve your symptoms.

    Learn to pace yourself, its very hard but when you do, the boom and bust should stop, best of luck 

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  • Posted

    Hi Jake,

    Yes, mad flu like symptoms often for me too. Weirdly myself and a friend with this condition got the uti symptoms at the same time a couple of years ago. We were both very ill with it and i could hardly walk for the pain. It was just after the floods and i wondered if bacteria or chemicals used in the water caused it as i was trying potassium citrate (the stuff they use in cystitis cures that's about £1.50 rather than £7! ) and it was not shifting. I happened to travel to a different county for a few days and it cleared up. I was still taking the PC too. It felt like a miracle.

    I feel our bodies find everything harder to deal with and often our symptoms are from things we can't see such as smoke, mould, chemicals. Our bodies react as if attacked and our defences struggle to deal with the percieved threat.

    I am currently bed bound after meeting my sister yesterday to pay our respects for mother's day. Have used up my energy doing that. As Wknight says-boom and bust although i feel mine was more zombie and bust! Exhausted and have a hot ear and weakness of muscles. Am hoping I'm feeling less shattered tomorrow.

    Doing things in moderation and resting is the key.

    Hope that helps

    Ps. What are the meds for?

    Beverley

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    • Posted

      Thanks for your message.

      The medicine is CYMBALTA, to try and help with my symptoms of CFS...

      But its 8:40AM and I woke up at 5AM with nausea and feeling sick... I know every medication can have side effects, I just got my life off antidepressants/antianexiety and I'm finding it hard to put myself back on them for a different situation.. 

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  • Posted

    What tests did the doctors do if you don't mind me asking as I've been unwell for about a year and doctors have done nothing

    Thanks

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    • Posted

      I've had too many tests to count now. Initially they looked at my symptoms individually so I was referred to ENT for my lymph nodes, Gastro for IBS, Rheumatology and Neurology. I've also been to Fatigue sessions and currently waiting to see a specialist in infectious diseases who has a particular interest in CFS. Nothing had shown up in any if my blood results and my symptoms change from day to day. If you're not happy with your GP then ask for a 2nd opinion. You're entitled to one. I was lucky to find a good Doctor who listened to me and took my concerns on board.

      Thanks

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  • Posted

    I’ve been having these symptoms with no diagnosis besides doctors telling me it’s all in my head, had uti symptoms tested for that and full std panel all neg. ebv did come back positive for a previous infection, but have all the his for four months straight, irritated throat, tingling gums, chronic fatigue, tingling/numbness in hands and feet, burning feet, burning groin area, constipation, red patchy sunburn looking skin on face/neck, been to GP. At least 10 times, a clinic a few times, a urologist, a dermatologist and a naturopathic Dr. so far the naturopathic Is the only one listening to my symptoms and trying to help, he prescribed a 10 day course of famvir antiviral so hoping that gets some results and can maybe continue on that? Any advice on what to do or to try would be appreciated. 
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    • Posted

      The antivirals usually take a lot loner than 10 days to work for CFS so you should ask your doctor about staying on them for longer. CFS doctors and many patients have said that they don't see much of a benefit until a couple of weeks or months and it can take up to a year to see real benefits. 

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  • Posted

    Hi.

    My mains symptoms are mood changes, muscle aches, headaches, tiredness, exhaustion and reacuring injections and viruses.

    I find doing to much exercise or having a stressful day doesn't help! When I have an illness my body is tying so hard to recover everything cant work as hard so all my symptoms flare up making day to day activities really difficult.

    I do find my symptoms go up and down and that I get a feeling like I am coming down with something but it never really comes.

    I hope your symptoms get better soon .

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