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Not yet diagnosed properly

Posted , 18 users are following.

shabbychic
shabbychic

Hi, I'm here because I have suspected glandular fever.

Last Monday night I more or less collapsed into bed freezing, I had to sleep in my clothes and slippers and couldn't move at all, I've never felt exhaustion like it. I thought I was just over tired.

The next morning couldnt move from vbed at all, nor have I been able to stay up all day since. 

My glands are up in my groin, neck, behind my ears and armpits ( I can feel the pain there on and off) and my doctor today confirmed they were all up.

I've had a fever on and off.Sore throat (but not too bad, just sore).

For me it's the exhaustion and gland pains. I also have pain under my ribs, which is something I've never had before.

If I walk to the kitchen to make tea, or attempt to have a bath I'm so exhausted afterwards that I feel like I'm going to die. I get so dizzy and unsteady too sad

I was just wondering if this does sound like glndular fever or just flu? I'm having bloods done on friday.

I've had plenty of flus before, but they've never felt like this sad

1 like, 788 replies

788 Replies

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  • shabbychic
    shabbychic

    Posted

    Hi everyone, remember me? I just wanted to pop back and say how ive been doing.

    I'm still struggling after GF with post viral fatigue. I'm still off work. My memory is terrible, I've struggle do with my degree, I sleep around 12hrs a night. If I exert myself one day I pay for it the next. Ive had muscle aches and sometimes I feel I can't move, I feel like a statue. When I ache when wake up even the tips of my toes hurt. I can't sit or bend down without getting low blood pressure and getting extremely dizzy when I stand up. I've lost weight, which I think is muscle weight due to me not being able to exercise like I did.

    At the moment I'm suffering with bad allergies that I've not had had before, the allergies are so bad my glands which hurt the most during gf can be agony, i think gf has weakened them.

    I'm getting better than I was but it's a slow process. People think if I have one good day that's imust be better and can return to work but I know it would kill me.

    • rosie34970
      rosie34970 shabbychic

      Posted

      Oh shabby, that sounds difficult I'm sorry. Is there any way you can take a break from your degree before coming back to it so that you can just focus on getting better?

      I also had the dizzy/low blood pressure thing at one point and wanted to reassure you that it gradually gets better as you get better and your body has more 'practice' in little tiny bits at being upright. You don't sound well enough to work so try to ignore the doubters who don't understand and try to resist doing much on a good day so that you can have another good day the next day with the saved up energy!!x

  • natalie39598
    natalie39598 shabbychic

    Posted

    Hi everyone

    I thought that I will post an update.

    As I started coming back to work and do more chores around the house I started feeling tired again. Sore throat cane back, so did my glands, ear ache, pain under left rib and headaches. All same awful symptoms. They are less prominent now, but enough to make me feel completely discouraged. I am forgetting what it means to feel normal and when I remember for a fraction of a second it makes me cry as I feel that I have lost it forever. I have been feeling a bit better for last few weeks, still struggling but managed to force myself to be better. Now I am feeling horrible again.

    I look around at bubbly Edinburgh full of people from everywhere having fun at the Festival and I can only think that I would like same so badly. 5 months and counting . If I do things mono hits, if I don't then depression makes my life a mysery. Between physical symptoms and low mood I just had enough....

    I hope that you all are doing better. Glad to hear you are better Nicky, Rhonda. I am sorry for your relapse Mono, I hope it will be short lived. I also hope that Path is doing better, as is Craig with his back.

    • 40with.gf.
      40with.gf. natalie39598

      Posted

      Hi Natalie, 

      that reply would be identical to mine! I could've written that .

      you have just described EXCATLY how I am feeling...except I am down in Hertfordshire. I am 9 months in and I do feel better than I did, but SLOW going, I would say don't expect so much too soon (I did and maybe sometimes still too) I thought I would never be ill this long. The crying sometimes is awful and everyone  else seems to carry on with their lives, don't they?! But I definately see an improvement. I'm not back at work yet.

      xx

    • Mono_too
      Mono_too natalie39598

      Posted

      Hi Natalie,

      I know what you mean about feeling discouraged, I just think that we tried to jump back in to soon to daily routine, but as my mom says our immune system knows the virus now so we should bounce back sooner.

      I do feel better than I did and when I rest I feel better. I am thankful to have a group of people who understand this virus and offer encouragement, it makes all the difference when you are feeling down,

    • 40with.gf.
      40with.gf. Mono_too

      Posted

      I think it sounds like I am at the same stage as you mono.... I do feel better quicker when I've rested , before it would have been days to feel better.

      this forum is fantastic, it makes me feel normal in the way that I feel. so am thankful to all of you in replying. Xx Caroline.

    • brent_83487
      brent_83487 40with.gf.

      Posted

      I am in the same boat as everyone else. I long for the days when i can feel normal again. It has been a year for me. I have worked through most of it . The fatigue seems to never go away. I cry a lot when I am alone. I would not wish this on any one. Maybe one day we will all get better.
    • Mono_too
      Mono_too brent_83487

      Posted

      Hi Brent,

      That weird depression that goes along with the fatigue is something else, I know it is part of the virus because it comes along when the symptoms are worse. If you are feeling down just come to the forum for support, it really does help to know we are not alone and  we all understand the horrible effects of this virus. Our immune systems will get ahold of this virus eventually, it can't come soon enough.

    • 40with.gf.
      40with.gf. brent_83487

      Posted

      Hi Brent, I would never have known the crying and depression thingy was part of it until I came on here and found out other people suffer like that. 

      Im not sure how you have managed to work right through this, that must be tough.i know I couldn't.

      it has been the worst year of my life. Mono is right. This forum helps

      you will, we all will get better. Takes time.

  • rosie34970
    rosie34970 shabbychic

    Posted

    Oh I'm so sorry to hear people sounding really down :-( it's a really mean virus isn't it.  Are you all getting some emotional support? Therapy or people who really understand? I know it seems like an indulgence but you deserve all the support you can get and it's good for the immune system too...  it's definitely helped me cope having someone understanding to talk to.

    I've just started a very slow phased return to work, first time in 6 months, plus another six months last year..., really glad to have managed the first bits but trying to take each bit at a time as I'm still very limited physically and can't walk more than half a mile or my symptoms come back the next day. Working on building that up again bit by bit. But I like my job (and need income!) and so I hope I'll be able to manage it by little bits building strength...fingers crossed for is all!!

  • craig07920
    craig07920 shabbychic

    Posted

    Thanks so much Nicky, Rosie, Caroline for the kind words of support. Means so much to me right now. Yes trying to keep moving just trusting in God to help us all with the troubles we are experiencing at the moment. Thanks for the tips Nicky and for the reference to Nicole Sachs Rosie, I looked her up and watched some of her videos.

    Thinking of you all today and let's all just hang in there - God is with us and will help us through the storm.

    Craig

  • shabbychic
    shabbychic

    Posted

    Hi, I just wanted to update on what has happened since starting this thread. I have had more blood tests and well the last lot of blood tests discovered I have Addisons Disease. So now I don't know if I had glandular fever or just a flu my body couldn't fight as well that sent me into adrenal crisis, I don't know. I'm waiting to see the hospital so they can confirm what my GP has told me.

    I hope and wish everyone on this thread well smile

    • rosie34970
      rosie34970 shabbychic

      Posted

      Gosh that is a big change for you...sorry to hear that but on the positive side hopefully you are/will be feeling better very soon with the meds for that. I've heard it's a very quick recovery once you're on the steroids you're missing. I got tested for that a lot as doctors were convinced I had it for a while. Wish you all the best x

    • 40with.gf.
      40with.gf. shabbychic

      Posted

      Hi shabby chic, 

      oh wow, I had the short synacthen test to rule out Addison's disease. It turned out I didn't have it but my doctor is quite thorough. I suppose it means when you start taking the hormone replacements you will be better immediately! 

      My friends thyroid stopped working when she had glandular fever.

      keep us posted xxxxx

    • craig07920
      craig07920 40with.gf.

      Posted

      Hi Shabby,

      What an awful time you've had, so sorry to hear you have this but just want you to know that there is still hope and I'm still fully believing in your recovery....people on this forum are still thinking about you and rooting for you and of course keep visiting and let everyone know how you are doing. I don't know anything about Addison's but it sounds like encouraging words from Rosie and Caroline...so definitely heed those words and take hope and comfort today.

      Hoping that things can start to progress forward now you have this diagnosis and most definitely thinking about you today - hang in there.

      Craig

    • Mono_too
      Mono_too shabbychic

      Posted

      Hi Shabby,

      I am glad they found out what it is, What tests did they run to discover this? Do they think that glandular fever caused this or is it unrelated?

    • rosie34970
      rosie34970 Mono_too

      Posted

      Don't worry glandular fever doesn't cause it. It's an autoimmune disease where the body attacks the adrenal glands so they don't produce enough cortisol.  Cortisol is the hormone which basically makes you awake and also fight infection, so if you don't have enough it can be difficult to get over minor illnesses. The first test is just a blood test for cortisol level - has to be taken at certain time of day usually 9am as cortisol levels naturally decrease over the day to allow you to sleep at night.  If the 9am cortisol test is below the recommended range then you have to have a short synacthen test.  If not it's fine. It's worth ruling out but it's also extremely rare so try not to worry as symptoms are similar to post-viral at some stages. Hope you don't mind me chipping in, I had to read up on it a lot when doctors decided I had it (before they realised I didn't!).

    • natalie39598
      natalie39598 Mono_too

      Posted

      Oh how interesting! I have been finally referred for the short synacthen test. I am deferring ad I am very scared that it will make me worsesad i just panick about idea of risking any side effects... how did you feel after it?
    • rosie34970
      rosie34970 natalie39598

      Posted

      Don't worry about it! I literally felt nothing during mine. They could've injected me with water for all the reaction it gave! Also they do it in the morning so that it fits in with your natural cortisol cycle. It's worth avoiding extra cortisol at night as it keeps you wide awake as I discovered when they put me on the cortisol-replacement steroids!!

    • 40with.gf.
      40with.gf. natalie39598

      Posted

      Hi there, I've had the short synacthen test and don't worry, it doesn't make you feel any worse I assure you.... My cortisol was low 258 which is why I was referred, I read up on addisons a lot and the whole idea scared me but honestly don't worry, if you do have it you will be treated immediately and recover so quick. It is very rare so let's hope you haven't got it. But the short synacthen is fine, I promise x

    • rhonda21886
      rhonda21886 shabbychic

      Posted

      Hi Shabbychic, hopefully you will soon be seeing much better days now that there is a diagnosis! Please let us know how you are doing frequently! Will continue to keep you in my thoughts and prayers.

      Rhonda

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