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mich_stoerr

One year later

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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

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Hi Michelle,

Just a quick post to reassure you that you are firstly, you are doing great - well done for battling on and getting back to work (although it sounds, like many here, you are finding you need to not over-do it!!), and secondly, yes you are going through the same draining fatigue among many other other symptoms that many of us are learning to live with and it seems to be normal for us survivors. Hang in there!! I am about 2.5 years out from Sepsis. I work 3 days a week as a music therapist and 2 days from home on my own business as a graphic designer, and to be honest the 2 days at home since sepsis have been rest days really and my business has suffered. However 2.5 years has seen some improvements, the fatigue can still really smash me, but it happens less often. I have learnt and am still learning to pace myself more (very frustrating!!). Still get leg pains etc and various other pains in my body. Still vitamin d deficient since sepsis. Have found that making sure I drink enough water daily does help. Used to be very fit prior to sepsis, and am frustrated that I have put on some weight over these 2.5 years as I can't (or am too afraid) to exercise like I used to. I would love to get running again, but fear that I may need time of work if i try!! One day - hopefully!! Anyhow, things are improving - but it is a slow process - be kind to yourself. If you have read any of my posts you may have seen that is took me a whole year before I had the energy to walk my kids to school - about a 10 min walk. Now I have no trouble with this :-) Like you are finding, there is very little support for us survivors, this forum is great, and a couple of facebook ones are good too, the NHS don't seem to have many answers and just put most of it down to chronic fatigue or post infection fatigue and say "there is no magic pill". I hope to get along to one of the UK sepsis trust support groups soon as i think it would be good to meet with others who understand what we are struggling with etc. But please remain positive - I hope this post doesnt come across as negative, yes I still struggle with health - but it is improving as the years pass. Stay hopeful, look after yourself, all the best...

Phil.

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I know you go to A&E you tell them what you got

and the they still send you away ill.

I felt like my brain was fall out.

 

I had been on clathymycin for 3 months.

My GP refused to give me any more clathymycin

Ended up in A&E on Saturday.

Shaking.

My temperature was normal but my blood pressure was up and down,

They got rid of me.

I ended up sitting in a chemist for 6 hours waiting for shaking and not being able to walk.

Went I came out of it at 10pm they told he to get to out of hours.

Got there.

I was sent away with clarythrmicin.

The next day my arms are numbe it's neurological

I can't raise both arms and I am numb.

My feet are numbe the out of house doc says get there I will give you pain killers.

I said no.

I rather stay in bed.

So I had to book myself in a hotel for another night.

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Hi Mmoo,

I'm being contacted by a significant number of survivors who are having problems with irregular heart rhythms a few months after sepsis. They can either be too fast or an irregular beat (I haven't heard of any going too slow yet) - the irregular beats feel a bit like Morse code when you check your pulse. It would be good if your GP referred you to a cardiologist just so they could 'fine tune' your medication which may help ease your tiredness, as one of the effects of Beta blockers is to make you feel tired. Do let them know if the arrhythmias keep making you dizzy because your blood pressure may be dropping when you get them. Often happens when you bend down. Be reassured they can usually sort all this out quite easily with medication.

BW,

Libby.   

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Hi Michelle ,

 

Like you , I just had one year after sepsis, and like you I am also still wandering why I can't feel back to normal. I think everyone recovers at a different phase and nobody can tell you what will be your particular process. My doctor told me that after 1 year I start feeling better, and can expect a full recovery only after 3 years. I guess, we need to learn to live with what we have, be kind to our bodies and try to be happy about little things in life.

Hugs,

Rasa

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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

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Hi Michelle,

I hope you received my message and suggestions. Sorry, I was abroad when I received this post on my phone and the wifi was dreadful at the hotel. Do let me know how your appointment went with the specialist.

BW,

Libby.

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Hi Guys ,

In 2011 I had an operation on my back which didn't solve my problem so I wasn't fit at all when my sepsis struck in 2012 / 2013 - I suffered kidney , lung and heart failure - what I found when I eventually came home 3 months later was I couldn't sleep on my side as it felt I wasn't getting enough air into my lungs - I've always been asthmatic since a child but it didn't feel like asthma at all , just that my lungs weren't working 100% - if I lay on my back it felt better - Before the sepsis I had always slept on my side now I have to sleep on my back . I didn't go to the Doctor as I wasn't sure if he could do anything and I was ok as long as I slept on my back .

I do get a ' funny sensation ' now and again in my heart , a bit like an irregular heartbeat but it doesn't last long and not very often .

I had to give up work because of my back problem so had no work to go back to - a neighbour visits now and again but it's my Family that are my Life now - I also took up photography so I had something to do - it's a bit limited due to my condition but at least it's something .

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Hi Skyehammer,

I'm hearing from more and more survivors who are experiencing irregular heart beats after sepsis and as the heart is often affected during the acute illness (as in your case), I can see the connection. I would certainly mention it to your GP as it would be advisable to have an ECG just to check things out. Often the heart rhythms you can feel are completely harmless but it's as well to know, so you know what's going on. If you go dizzy at the same time, it can be an indication the heart rhythm is dropping your blood pressure which may need medication to sort it out.

With regard to the breathing problems - when sepsis affects your lungs, the air sacs (where the oxygen and carbon dioxide are exchanged in breathing) can become scarred from the inflammation which means they don't work as well afterwards. When you change position or lie down, different air sacs in different areas will be used in the lungs, so if there is any scar tissue in one area, this can make you breathless. The lungs also rely on your circulation to work properly to pump the oxygen around, so again if that's a little impaired when you're lying on one position, this can make you breathless.   

Again, do go and have a chat with your GP - it may just mean changing you sleeping position but it's worth finding out and often simple changes can make a world of difference.

Take care,

Libby. 

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  Good Afternoon Libby ,

Thank you for replying to my post .

When in hospital [ The Royal Alexandra , Paisley ] I was given every check imaginable - ECG , CAT , XRay , even a full bone scan at The Southern and General so I'm not too worried about my heart and three years down the line I believe my lungs are a little bit better as I recovered and took more exercise .

Immediately after coming home I went down with pneumonia and had to go to Raigmore Hospital when things turned serious [ turned out to be a lab error - twice !! ] - the Doctor said ' If I hadn't read your notes from Paisley I would have thought it was cancer ' - Just the thing I wanted to hear !!

What has happened since is I am now suffering from low blood sugar attacks - My wife goes to work when it's available so I'm not great at eating regularly but I do try obviously . I did go to our GP for that but he reckoned my blood was fine .

I am on 2 dihydrocodeine 60mg slow release twice a day - I was on Tramadol ,  Gabapentin and Blood Pressure Tablets [ Perindopril and something beginning with ' D ' ]  and another tablet for pain beginning with ' A ' before sepsis - now just dihydrocodeine - I managed to get my blood pressure down through diet and exercise which is just as well as the Doctors took me off the blood pressure tabs while still in hospital .

It's reassuring having you as part of this Forum , Libby .

I will get my heart checked out but I'm pretty sure it's fine .

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