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mich_stoerr

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About mich_stoerr

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  • Gender
    Female
  • Location
    Europe
  • Sepsis Aware
    Affected by Sepsis
  1. It's been 2 years and 2 months... I had been struggling with chronic fatigue for a good year and a half when in Sept last year something lifted. I told myself I'd hit the 18 month period and perhaps the CFS was disappearing. Suddenly in November I felt hideously unwell again, and despite my GP running endless tests, absolutely nothing untoward showed up in the blood tests. By December, I was deadly ill...but no one could find anything wrong with me. (At one point I got a pat on the back and was told to take an antidepressant for a month and see what happened. The antidepressant nearly killed me... At this point the advice that Libby once gave me was running through my head - she once said that if the CFS symptoms change or worsen - get it checked out. Thank you for this advice Libby - it saved my life. I won't go into the detail of the ensuing 8 weeks, but let's just say after insisting something was terribly wrong I was admitted to hospital for testing in an Internal Medicine unit where they basically were looked for anything and everything that could explain what was happening to me. They tested for auto-immune disorders, rare infections to things I'd never even heard of. The more they tested, the less they found, and the worse I got. Not a single result came back abnormal, or even suspicious. I thought I was insane. Now my story might seem to detract from Sepsis, but you'll see where I'm going with this... On the 15th of Feb 2017 I was diagnosed with a cerebral vascular sinus thrombosis (a blood clot in one of the sinuses of the brain). Now, because I didn't present with the classic horrendously horrendous headache at any point, the doctors are not able to date when the clot occurred. Having said this, although the worst of the symptoms started in Dec last year, I had been hearing my heart beat EXTREMELY loudly in my head for a good 18 months (according to the neuro....not a good sign) and this got me thinking... My question is - what is the relationship between sepsis and blood clots of this kind? Is there a possible correlation between the two? Or perhaps I'm looking at it wrong....could there be a correlation between the chronic fatigue, a whole lot of lying down and the thrombosis? Because CVST is rare, and because I presented with symptoms in an atypical manner and because I therefore don't know when the clot occurred...(there are a lot of becauses here...) I'm wondering if the clot may have formed when I had sepsis, and somehow remained undetected until something aggravated it at the end of last year? It was, after all, at the end of last year that I felt hideously unwell and started getting some very odd and worrying neurological symptoms. They have run and re-run hundreds of tests and have found only slightly elevated levels of a single antibody (anti-prothrombin) which may have contributed to the clot forming, but alone this antibody doesn't explain everything. ALL other results are perfectly normal. Any experience with something like this Libby? Many many thanks Michelle (in France!)
  2. Dear Libby, Thank you for your reply. I have been put on the beta blockers by my cardiologist who told me to take a low dose treatment for 2 months and then see. In the beginning I felt they had an effect on calming the extrasystoles but as time went by I realised that when I felt better from the beta blockers I did more, and by doing more, my heart then felt more tired. It was a vicious circle and during these 2 months of treatment I have been getting more and more tired. It has now got to the point where my gp has to put me on sick leave and no matter how much I have been resting over the past 10 days the tiredness is never ending. You said in your reply that they could fine-tune the medication I am taking for the extrasystoles to try and counter the side effects of the beta blockers. Would you be able to give me an idea of what the treatment options could be? Are there other drug classes other than beta blockers that would have the same calming effects on the extrasystoles minus the side effects? I have an appointment with the cardiologist on Monday morning and want to go there armed so that I dont just get sent off with a herbal remedy like I got prescribed the first time (and which obviously didnt do a thing to help). On this side of the channel I have yet to find someone who links this terrible tiredness to the infection I had last year, and as a result I feel like I am fighting a very long and tough battle on my own. Thanks very much for your time and advice Michelle
  3. Thanks Phil for your kind words. The forum really is the place where people just GET each other, and that makes all the difference.
  4. Hi all, It's been quite a long while since I posted here, and as you can see it is one year down the line, and I bet you know what's coming... Yes, I need a bit of reassurance here... Like a lot of you I still am battling with this terrible tiredness. I managed to get back to work full time (which for me is 4 days a week) in March. The first 2 weeks at work I was so happy to be back to "normal" that I felt okayish, and then slowly began realising that I needed to work from home as I was spending my evebings and weekends trying to recover. In March started getting these very odd heartbeats that made me feel dizzy and sometimes breathless and a cardiologist said I had extrasystoles - nothing dangerous - but uncomfortable as I have roughly 3 a minute. This was end of March. Since then I have had ups and downs, but the strange heartbeats seemed to make me feel more tired so, I was prescribed low dose beta blockers 3 times a day and to.d to get on with it. For a while this worked, but more recently I've felt more and more tired at work. So much so that I have had to work mornings from the office and pms from home. My weekends seem to be made up of endless "recovery time" - aka - lie down and rest. I dont really sleep much during these rest times - I dont want to sleep - but NEED to lie down. I sleep well at night Today I dragged myself to work and promptly burst out crying as I got there as I am just too tired to go through the motions and pretend that everything is ok any more. I am going to the gp this afternoon, but I am quite sure that apart from the exhaustion and dodgy heart beats there is nothing else wrong with me. Has anyone else experienced something similar? I guess I am at yet another stage where I just need someone to tell me I am not totally insane ????, that this sounds normal, blah blah... The only support I have had is from this group and the UK Sepsis Trust, so some advice would be great. Thanks to you all x Michelle
  5. Hi Naomi, I'm not a medic either. but I got hold of the UK Sepsis Trust 7 weeks after sepsis with the exact same question as you as I just couldnt understand why I felt so terrible (exhausted beyond words, dizzyness...etc. From what I have read and been told and mostly from what I'm experiencing, it's a long road to recovery. On top of all that you have a tiny baby to look after and that can only be adding to the tiredness. Something that really helped me was calling the UKSepsis trust and speaking to someone who was medically trained. Else, have a look through the forum, it is very reassuring to read other people's experiences and realise you are not alone. Listen to your body, and get as much help with baby as you can. Take care Michelle
  6. Hi Millie, Although I really cant tell you why you are experiencing dizzy spells, I FULLY FULLY FULLY sympathise with you. Although I am over the dizzy spells, just the reminder of being woken up at night due to dizziness as well as from feeling dizzy ALL the time I was awake for weeks on end makes me get panicky. It is a horrid feeling. For me it took a good couple of weeks to go away, but go away it eventually did. I really hope that you feel better soon. Take care, and get the rest you need Michelle
  7. Hi Gillianflutes, Take your time, and go one step at a time. It has taken me 7 months to listen to my own advice, so I do realise it isnt that easy. Like you, I was extremely active, healthy and on the go non stop. All this changed in May and since then it has been a long, painful uphill climb to getting back to the way I was before. Although I am still nowhere near my former self, things have improved and continue improving. What I have had to accept was to give in to the tiredness and just listen to what my body was telling me. Earlier on in this journey I couldnt do anything. My main "activity" for the day would be having a bath. Today, I am back at work part-time and this past week have just upped my number of half days worked from 4 half-days to 5 half-days. Even the addition of an extra half day has me feeling more tired than I have been. I would have laughed in the face of anyone if they had said adding a half day of work to an already meagre working week was exhausting, but there you have it. Just reading that going back to work progressively leaves you lying in bed for the whole weekend feeling exhausted and pathetic - strangely enough made me smile - been there, done that. I'm not laughing at you in any way, but am laughing at myself as I too have felt very very very pathetic at times (this very afternoon, in fact). Are you able to work from home at all? I've been lucky enough to eliminate extra factors that exhausted me when I first went back to work, getting dressed in the morning, driving to work, walking around the building going to see different people, for me, just added to the exhaustion. I hope for your sake you can maybe try working from home a little. I really found that helped. Also, when you feel good, try not to push yourself too much. Again, I know this is terribly hard to actually listen to, but if you are still so tired on weekends maybe you are doing too much. I hope that my message makes you feel less alone. Although I havent been on the forum in quite some time, just reading that there are people out there who understood what I was experiencing helped me enormously. I would like to think I have always been a well-balanced person, but i nthe past 7 months I have sometimes felt so alone, so lost, and so so so knackered that I often thought my weird an wonderul symptoms were because I was completely insane. Thankfully when I got in touch with the UKSepsis trust, despite living in France, I got the support and all information I needed not only to reassure me I was not totally certifiable but they also to armed me for what has turned out to be a long battle. Without the UKSepsis trust I honestly think I would have completely lost my mind. Take each moment as it comes. Rest when you feel the need to rest, and try not to compare yourself to how you used to be. Surround yourself with peope who understand, and if there are ones who dont, simply dont let them influence you too much - you have enough of a battle on your hands. Although I know very little of your personal battle with sepsis, I can say for myself that there was a turning point after about 6 months. I wont pretend thzt fireworks went off, but something changed. As I say, there are good days (a couple all in one go at the moment, and it is WONDERFUL), and then there are days where things are more difficult. Take heart that although you might feel alone, you are not. All the best and I hope things look up for you soon Michelle
  8. Hi Mark, I can't help out directly, but I've shared your request with friends on FB and perhaps with some luck you might get some leads. Good luck Michelle
  9. Thanks Phil. Thanks for the encouragement. I feel less mad :-)
  10. It's been almost 2 weeks since I first wrote on the forum, and in this time have been through 10 days of feeling better, and now in the past week feel like I am right back where I started. I am still off work and have understood I need to take things easy, but I just cant quite get my head around how for 10 days I felt I was on the mend and then out of the blue get knocked down again. Does this happen where out of the blue you feel exhausted again? and for no apparent reason? All I do is rest, and yet, all I feel is tired. Yesterday I had backache (I think from being so inactive), but at one point started panicking thinking that the backache could be pain in my kidney again. I'm not of a hysterical nature but feel I am incapable of judging pain, and also dealing with the pain in an objective manner. I feel as though I mus be hysterical as I immediately panic that it is something serious. I've just read a couple of other posts from other people and see that a lot of my reactions are very similar to those who have had similar experiences. The soul-destroying exhaustion, not managing to do simple things despite having been someone who was very very active before. One person said that whenever people asked how she was, she just put her head down and said fine even when things weren't fine. I find myself in the position where I can't answer "I'm tired" any more, so just keep quiet, and as a result feel extremely lonely in this experience. My husband is wonderful so I shouldnt complain, but all I want is to get back into the swing of life again, stop feeling like I'm a hypocondriac (spelling?), and for this fatigue to leave me. I am supposed to be going on holiday in 2 weeks time and I cannot for the life of me imagine how I am goiing to have the strength to get on a plane and fly to South Africa (I'm a South African living in France....not complicated at all). This is putting pressure on me too (the flying to SA - I mean). I just feel like screaming out loud "How long will this last?" It's the not knowing that is hideous. I might be in France, but have to say that the UKSepsis Trust is a lifeline for me not to lose my head. I feel terribly alone in this over here, you're just left to your own devices trying to get your life back on track, but with all the set backs and the never ending tiredness it is reassuring to be able to come to the forum and read of similar experiences. When I do this I find myself jumping with joy (well, too tired to jump, but....you get the picture) when I read of someone who has experienced the same thing as I am. It makes me feel less crazy and less alone. Well... I think I just needed to write and get this all out. I'm now in the 10th week post infection and find it incredible how I can feel close to people I have never met, whom I don't know by name all because they have had the same experience as me. One person wrote about going to the hairdresser, spending 2 hours there and then having to leave without having her hair blow dried as she was totally wiped out. THIS WAS ME TOO THIS WEEK...and because of reading this, I feel less crazy. So thank you to all on the forum for providing support to the many weeks of solitude and all the ups and downs.
  11. Yes, thanks...I was so excited to feel well yesterday that I was quite busy. This morning too, I went out then came home and promptly fell asleep for 4 hours! I'm off work for at least another 10 days and in this time plan on resting (and reading a whole pile of Agatha Christites!) Everyone around me has not stopped telling me to rest and I've been so hasty to get back to normal that I've been forcing myself to do things - as if this would make me better. The penny has dropped very suddenly and I've realised I need rest. But I do have to say - I burst out crying at breakfast this morning (I could see my poor husband thinking "What now?"), but in fact I was just overwhelmed aand so happy to wake up feeling well (when last did that happen?) Today, when I saw a couple of friends I walked up to them, grinning like a lunatic, and said "ask me how I feel"...just so I could have the pleasure of replying that I am fine (for a change!). xxx
  12. Thank you SO much to everyone who has replied. I've heard so many differing opinions, and started wondering if it is me who is completely insane. It's funny, but today has been the first day I have felt something is different. I can't put my finger on it, but I feel a little better. The exhaustion I've been feeling in my heart (I know that sounds strange, but I don't know how else to explain it), feels as though it has lifted slightly. I live in France and there doesn't seem to be any sort of support for someone going through this. The doctors say that if your results are normal, the exhaustion is either in your head or that it must be due to something else. I tried forcing myself to go back to work and spent 10 days trying to work from home, but every evening I would be in bed by 7pm and not able to lift an arm. Yesterday I was put on sick leave again as I felt I was getting sicker rahter than better. I rested the whole of yesterday and by some or other magic feel a small difference this morning. Wow! It's absolutely wonderful to slightly feel better. I could cry I'm so happy! I even managed to go out and have a cup of coffee with a friend who took me into town this morning????. I finally realised that instead of looking for some or other illness, perhaps I'm still recovering. No one here has said it would take months rather than weeks. I changed GP recently as the old one told me I was "emotionally fragile" for feeling exhausted (this was in week 4 after the infection...). I promptly took my things and decided never to go back to that practice. My new GP has ordered many many tests, because she does find it too long for me to still be tired, but she has not put any pressure on me saying by it's in my head. It makes a big difference. Thank you so much again for the encouring comments and advice. I feel slightly less alone (and less crazy...) and all your messages have reassured me more than I can say. Many many thanks Michelle
  13. I am a 38 year old female and was hospitalized for what seemed to be a serious bout of pyelonephritis 7 weeks ago. After arriving at the ER my husband was informed that I had more than a kidney infection and that it was in fact early stage sepsis. Although I was hospitalized for 4 days, I was not in ICU. I was treated with IV antibiotics while in hospital and then 2 weeks of oral antibiotics once home. It has now been 7 weeks to the day, and although I have absolutely no trace of infection I am still absolutely exhausted. Although I don't have many other symptoms I feel extremely weak, dizzy and have palpitations at the slightest effort. Depending on who I speak to, some health care workers tell me this state of exhaustion is normal while others tell me it is not. As a result, my GP (who says this is abnormal) has sent me for further blood tests to find the cause of my exhaustion. So far, everything has come back normal, with the exception of my creatinine clearance, (but this is considered "normal" after such a severe kidney infection) I have had all the standard blood tests and been screened for any possible common viral infections. Everything is normal and so according to most doctoros I should be feeling perfectly well... except that I am not feeling well. I am at the point of now being sent to a specialist physician for further tests and my question is whether anyone who has had a similar experience can comment on the length of time to recovery. I have always been healthy, but now feel as though 7 weeks of my life have disappeared. I am unable to do any activities like go at work, go out, and as a result am just able to get around at home and just manage to do very small things like fetch the kids from school, but this is even exhausting and leaves me dizzy and exhausted(the school is a 2-minute drive from my house... need I say more?) Thankfully I have not had as serious an experience of sepsis in comparison to others, but I am honestly feeling as if I am going insane not knowing whether this terrible exhaustion is normal or not. I am reluctant to go see a specialist physician as they are apparently going to test for anything and everything. The thought of this is already making me feel panicked. Any advice / comments of your experiences would be very welcome. Many many thanks Michelle who constantly feels guilty for not getting better!
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