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Just got diagnosed with Chronic Fatigue Syndrome - I feel lost

Posted , 7 users are following.

Jakejm
Jakejm

Hi there all,

I'm a 23 Year old male, I've been very healthy and well until the past few months.

Back story:  At first we thought it was a tooth that was infected, so it was removed. Months later the same symptoms of feverish, and cold like symptoms, tireless and lethargic stood with me for weeks on end. Until last week, doctors did bloods and were unsure what was going on, I was starting to fall behind on looking after myself bed ridden and not telling my family I wasn't keeping up with eating and drinking.... and I ended up in the Emergency department dehydrated and in large amounts of pain. 

Over the course of 5 days they could see the issues I was having, but they could see anything wrong with my bloods, until I was finally diagnosed by the Hospital and my GP with Chronic Fatigue Syndrome. 

Yes, I have read up online about what is it how it works, but I want to get help from real people on how they deal with it in their own way.

This past week I feel it's been the worst it even has (knowing that I've now got it) I've been having so much back pain, joint pain, cold like symptoms but all over an hour - hour basis.

Since I've just got out of hospital I've done very minor things, so sometimes I won't feel anything until the end of the day. Or I'm woken in the middle of the night to pain. Other times  I'm completely fine until the next morning. It seems to be all over that place and I have read it can do that. 

Some reason in my mind I'm hoping I don't have it, because the last two days I haven't had much symptoms but I'm sure when I'm about to go and do something really physical I'm going to hit down hard.. 

So I have a few questions, I'm hoping some people could help me answer... from someone who has this syndrome.

- How do you personally deal with pain management?

- Have you had constant symptoms of Chronic fatigue syndrome since you've been diagnosed? 

- Have you all of a sudden got Anxiety from this condition? 

- How do you deal with Chronic Fatigue and work? Would you randomly have to go home from work because you can't deal with the symptoms? 

- Have you ever overcome Chronic Fatigue syndrome for good?

I'm probably not making sense, sorry in advanced, please don't attack me if so, I'm just trying to look for some sort of hope sad I can't really think straight right now, I've let this get me down in the dumps... I'm seeing another doctor soon I'm afraid I forgot what the name of the doctor is called.  I just feel like giving up sometimes.  Regardless. Please let me know of anything else you'd like to comment, I really need to speak to people who have this condition. 

0 likes, 13 replies

13 Replies

  • Jakejm
    Jakejm

    Posted

    I didn't proof read this, the comment "I feel like giving up sometimes" is referring to me just wanting to stay in my room and just shut everything out.. 

  • Keano59
    Keano59 Jakejm

    Posted

    Hi Jake

    It seems your main symptom is pain and that makes me think this could be fibromyalgia.The main symptom with chronic fatigue is primarily overwhelming fatigue and secondary pain.With fibromyalgia it’s the other way around.The two conditions are very similar and it possible to have both.Its all about how you manage whichever you have.Hope this helps all the best Keano

  • ruth13083
    ruth13083 Jakejm

    Posted

    From your post it seems that your first symptoms developed a few months ago, is that right? From my experience and understanding I took CFS to be a diagnosis if your symptoms persist over 6 months. If your symptoms were from a virus then it could still be in your system, they are not always detectable in blood tests and viruses these days can linger for a long time. First of all... try not to panic. I know it’s hard. Try to see if you can access some counselling through your doctor on how to cope with your illness. Also ask to be referred to a consultant that specialises in virology/CFS. A lot of people can take a long time to recover from a virus but they do get better, it may take a while but it will happen. I just think you’ve been given a label of CFS quite early on and this has probably freaked you out. Also sounds like you haven’t totally been looking after yourself; this will be key to your recovery, rest, nutrition, gentle paced exercise.  Yes, of course this can cause anxiety so try and access some kind of counselling. Yes, people do recover from similar conditions.  Yes, the symptoms seem totally random and wax and wane. Manage your symptoms, ask your doctor about pain relief. Epsom bath salts good for aches. See if you can work part time to lighten the load. Consider seeing a naturopath for dietary advice and supplement advice.
    • Jakejm
      Jakejm ruth13083

      Posted

      The doctor in the Hospital put it down to a viral infection that was lingering in my system untreated for many months on end, causing CFS.

      As waking up this morning, after a 2 day good day period, I wake up tired, cold and flu like symptoms and swollen lymph nodes all over again sad

    • ME44
      ME44 Jakejm

      Posted

      Did they mention what viral infection is lingering in your system and are they treating it? Some people whose CFS got triggered by a virus have made a full or partial recovery by taking antivirals. HHV and EBV are linked to CFS and you should get your doctor to test to see how high your antibodies are. If you have high antibodies this could indicate an infection and antiviral medication can help or cure you. My dad has improved a lot from taking the antiviral valtrex and I have improved but haven't been on it long enough to see its maximum benefit. If you start taking an antiviral don't give up on it too soon because it takes a long time for it to start making you feel better. Also the earlier you can start the antivirals the better because they are less effective the longer you had the illness but can still be effective if you had the illness for a long time. If you have EBV valtrex would be the treatment and if you have EBV and HHV valycte would be the treatment. You should make an appointment with a doctor who specialists in CFS because most doctors don't know about it and how to treat it. Doctor Lerner and doctor Montoya are good informational guides on the antivirals. I hope you feel better.

    • ME44
      ME44

      Posted

      HHV 6 I meant
    • Jakejm
      Jakejm ME44

      Posted

      No, they Never told me what type of viral infection... I had a bit of a rough experience with getting help (in a private hospital!) 

      They've put me on steroids to get rid of it.

      Forgive my ignorance, I just still haven't learnt much about all this yet.. The actual doctor I had in hospital was the doctor who deals with CFS.... My GP was very disappointed that they sent me home with nothing, no booklet, no information all he said to me was " 2 months - 2 years" I was discharged...

      My GP has given me 2 weeks to recover, they've also put me on Cymbalta... again this is still all new to me.

      After my 2 weeks recovery she's going to send me to a doctor who deals with this, a much better one then the one who told me just to pretty much ignore it... 

      I will bring up with my GP about this antibodies... I just need to do some good research about it all.. 

      How long have you had CFS for? 

    • ruth13083
      ruth13083 Jakejm

      Posted

      In my case an infectious diseases doctor told me I most likely had a virus (unknown and not found). It’s now been almost 7 months and I have a loose diagnosis of post viral syndrome. I am very slowly improving. Are you in the Uk? I really recommend asking your doctor about some counselling. It sounds like your GP is getting you on the right track. Get support from your family. Take one day at a time. Be prepared for set backs. Many many people have been through this and recovered. You are young and healthy otherwise. 
    • ME44
      ME44 Jakejm

      Posted

      I have had CFS for 5 years since I was 16. Stay positive because you might make a full or good recovery. You haven't had it for that long and there's a portion of  people who recover from it within a year or less. Make sure you don't overdo it because it can exacerbate your symptoms and make the overall  condition worse(lessen your chances of recovery). I think that the medication that they gave you are to treat the symptoms rather than the of the cause of the illness.

  • ruth13083
    ruth13083 Jakejm

    Posted

    And yes it’s just as much a mental battle as a physical one! But a battle that is so winnable!
    • Jakejm
      Jakejm ruth13083

      Posted

      I'm concerned about the mental battle, as I just beat my depression battle in the past half a year... I'm worried it's now going to come back.

  • kay47840
    kay47840 Jakejm

    Posted

    Hi

    I think in the beginning you are in a kind of shock.

    Then there's people asking what's wrong with u and it's exhausting to have to explain it all unless they are familiar with the illness already.

    Deal with what u can depression and anxiety can be helped with talking therapy or medication as well.

    This doesn't mean it's all in your mind it's a side effect.

    Try to eat well and do what u can when u can.

    Most important be kind to yourself it's not your fault you're ill.

    Do what u can when u can try not to get frustrated.

    Most people improve over time the illness tends to fluctuate.

  • Meg97
    Meg97 Jakejm

    Posted

    You sound so much like myself it’s almost a relief😅 but of course not .. 

    first things first, you’re not alone - know that. Small back story I’m yet to be diagnosed but I’ve been battling symptoms for 6 months . I to have days I question whether I’ve got it, but don’t.. count tour chickens you get those days because some.. or most don’t.  

    Everyone seems to have had an awful ‘start’ to discover cfs/M.E is what they’ve got, and I’m sorry to hear you’ve been really unwell. As a ‘newbie’ myself who’s of similar age to you (almost 21) my advice to you is don’t panic, stay positive, excercise daily - even if it’s a walk to the toilet or a walk around the block .. staying dydrated is also such an important factor.. NEVER allow yourself to feel dehydrated .. this can add to your symptoms and often make you feel worse sad try to take every day a sit comes and only do little but often, take it with a pinch of salt because you won’t know what’s “too much” for your body until t hits you the next day and you’re in bed for days. 

    Symptoms come and go, you’ll gain as every day goes by I swear it’s ridiculous how many there are 😫 even the smallest of things, ones that affected you years ago that you thought nothing of.. that sore throat that didn’t progress into anything, that sniffly nose and cough.. that aching of your arms and stiff neck.. that fever that comes and goes and definitely that feeling of never getting enough sleep .. 

    Know there isn’t a cure.. yet. But the community and warriors of cfs are pushing for awareness and doing research of their own daily to beat it. 

    I am yet to battle work and I’ve had to take a break from uni for a year to figure it out for myself.. I’m all ears to hearing about how others have coped with this too.. about this toosmile 

    There really is no similar case, yes similar symptoms but as of severity and patterns .. nada. That’s why it’s taking them so long to figure it out sad what do we have in common? Why do we all have it but everything about us from our ages to our background and our lifestyles are so different.. worse thing is so far everyone I’ve heard of started out with a healthy lifestyle.. it’s a shock to everyone and it’s damn right unfair.

    Hope this helpssmile 

    Always here

    Meg 

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