Has anyone had joint pain after viral meningitis? And general mood misery? And feeling like your life has been taken over by martians?

Hello, I am in Australia and had viral meningitis in October 2012 and was in hospital for nine days and three months off work.Its been almost six months since then. I am back working part time and very moody and having difficulty coping with emotional stress. In fact, lately I would say I am definately depressed. My work colleagues are not very nice people and I find that being around them is very difficult as they are not kind or supportive. It really gets to me to be around mean people, I am very sensitive. Before I went back to work I was very sick but the further I got from being at work the happier I was. Actually although I was sick I was not depressed and was feeling really good about life despite the illness. Although I am slowly getting physically stronger, I am really misreble at work and am desperate for change but perhaps not well enough to get a new job as I dont think I could excell at it. I still have headaches and head pressure most nights but its not crippling. However, i have joint pain particulary in arms. No signs of inflammation in blood tests though. I am able to exercise, now. I can surf for an hour or so, can snorkel for two hours, can swim freestyle for a kilometer and can walk for two hours.Not all at once of course. But cant run at all. Bit scared about cycling as it can bring on headaches. So over all the evil VM is abating. But the mood swings and sense of despair is pretty strong. I was bullied at my job for over 6 months before I got sick and so never wanted to go back after I collapsed. However, I went back to work for the money and also to just get back on the horse so to speak. In a way I went back to prove to the bullies that even a deadly virus has not stopped me. However, now that I am soo misreble I think its a fake victory! I have income insurance, and what I really want to do is tell the doctors I cant cope and take the rest of the year off and use the insurance if possible and really recover. I simply dont have the energy and mojo to get it together for work. And the thought of getting a new job is abhorrent really. So, its a bit of a recipe for misery in ways. Do other people have this type of weird mood misery? My family have no idea that this is difficult and have not been supportive at all so its been a hell of a way to work out who your friends are. Wow. Has anyone else found this experience like falling through space in a really weird way only to land in a strange land with strange people? What planet did I arrive on? The one where most people are mean and weird?? What happened to the good people? Did the mean ones kill them all while I was in hospital?? Hope someone else can shed some light on their weird times. Glad to read this stuff though. Its hard not knowing anyone who has been in this. We dont have any organisations in Australia for meningitis.

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  • Hi there,

    This has been very refreshing to read your story and I am suffering with the exact same problems apart from the job! I was in hospital from the end if November through to the end of December last year and I am still suffering with terrible headaches, I get awful pains down my right leg constantly and my moods are all over the place! I could cry at a drop of a hat, get moody over the slightest thing.. The list goes on. I really do know exactly how you feel and I too feel that nobody really understands or cares. This is a weird old world Hun. Xx

  • Gem31 have you tried a tenns machine for your pain, they are about £14 to buy, also vic helps with headaches, and also good on joints, thou you will sink of it, you may feel better LOL :)

  • Hello Gem31, thanks for replying. Its so good to know other people who have been through this. So we are not alone. And I have made the decision to ditch the job as soon as I have something else thats ok. It helps to know that I have made that decision. I am feeling better than last week having made that decision and also from having people reply who understand. Are you back at work etc yet? You had the same time line as me except your time in hospital was very long. So I suspect with that time in hospital you are still recovering at home. I had terrible insomnia and took some drugs to help it but what really fixed it was a deep meditation practice. Anyway, thanks a lot and I am glad you wrote.

  • Oh I do empathise with you. When I returned to work (really not well enough to be there - as you sound you are too) I had lots of support from my colleagues but I still felt I didnt have much in common any more... aliens (maybe?) I have since realised that it was me, now that I am more recovered (Iwouldnt say fully) I have seen my colleagues and we do have lots in common. I think part of me was envious (?) of them and their normality i.e. no illness. When people are behaving in a care-free way laughing and having a generally good time in life I think part of me is envious of them, I am sad to admit this even to myself. My life is never going to be carefree again I dont think, and I think I mourn the "old me". Maybe its not the same for you but worth a thought, especially if they were your friends before your illness. I do think we change. You are still in the early days of recovery and in time you will feel better I am sure, maybe you went back to work too soon... I know I did, but wouldnt listento anyone who told me otherwise. I still cry at the drop of a hat though, maybe that part of my brain is permanently scarred or something! We care and we do understand though so never feel alone. .

  • my heart broke when you said " My life is never going to be carefree again " honey you will be, it just takes time, one day you will start laughing for no reason then you will realise, life will get better :)

    you say " you still cry at the drop of a hat though, maybe that part of my brain is permanently scarred or something" or maybe your brain has just found a sensitive side to you, cry as much as you want, you got threw it, you are getting well, you are allowed to cry, you are a survivor, be proud of that, and good luck :)

  • Dear Canada, thanks a lot for the kind reply. I have decided to ditch the crap job that I have when I find something else. Yes I agree with you about feeling a bit envious in that others appear better off. However, I realise I have changed a lot and its not in bad ways. I feel wiser and heavier in ways, with a certain level of gravitas that I did not have before. I am not afraid of anything. Or of anyone. I was like this before VM, and even more so now. What doesnt kill you makes you stronger. In the places people cant see, on the inside where it counts.

  • depressed.sensitive this seems to be the normal after effect after VM, you are not going made, or alone, we are here for you

    headaches and head pressure in time this will go away, I use VIC, ok you will smell,. but it does help with pain, and cheap to use, just be careful around your eyes

    You say "My family have no idea " they will not, maybe you could suggest they read this site, see what other people say, look if you had been in a car crash and was covered in scars they would understand, but our illness, is a crafty one, you can see nothing on the out side, may be you need to explain to them, write them a letter, use this site to help them understand

    your mind and brain is like a computer it needs to be re booted and all the files need to be found my hand, take each day as it comes, if you find it hard at work, then you need to be honest with people, rust me I was like a bear with a sore head, people thought I was just been a bitch with my moods, then one day I printed of VM and the after affects and showed people, you will be shocked when people say, sorry I had no idea, I did not understand.

    Hon take each day as it comes, find ways to relax, find things that make you happy

  • Dear tiga, thanks for the kind reply. I felt so relieved to hear from all the people like yourself that survived this. I read your blog and it blew me away how mean people were in hospital to you and its completely brilliant you complained. People need to be held accountable for crappy actions and I am so glad you did. Its like people think that their appalling behaviour will be unnoticed when you are vulnerable. Actually, I think that they dont even know that their behaviour affects other people. I think you encountered a genuine, real modern version of the true psychopathic personality in your experience. Its a phenomena that is growing across the globe in the way people operate. Its sanctioned by our economic capitalist conditions and in many industries people are rewarded for it. And then you find it in nursing and medical care and the results are devestating in normal circumstances and absolutely deadly in others. You were lucky to come out of there and I think anyone who reads your story should be aware that to do nothing is to condone it. All kinds of tyranny breed in silence. So good on you for surviving, then complaining and getting some arses kicked. Yay for you. And indeed after I wrote that first entry here last week I reconnected with things that relax and inspire me. Just like you suggested. I also decided to chuck in my job the moment I get something else and to actively pursue and make things happen. I also am investigating my insurance options, as I fully income insured myself. That was a stroke of genius. Lets see how it all pans out. But going back to my point about defending oneself, I think that VM makes you both vulnerable and wise. You realise that people will take advantage of you when you are week, and then you work on the wisdom strategies to deal with it. I have realised one of those strategies is to not fight unneccessary wars, to know when to retreat. And to know how to avoid unwise companions. I am currently reducing my time at my work with the people who I have had conflict with. I simply do not engage and I have been asked by two other departments to work with them and I have gone happily. So I dont talk to them at work, or spend any time with them at all. And I ask for nothing and offer nothing. And i appreciate all the good people everywhere else.

  • well done on you, are on your way to been well and part of getting better is taking charge of life and it sounds like you have, My hat goes of to you :)

  • Ditto above, I was in the hospital for pneumonia and then started vomiting, headache and high fever. 11 days total in hospital for Viral meningitis, Dec 12. Yep, been moody, been angry and headaches, exhausted.

    Before VM, I was exercising every day, 6 days a week. Two jobs and a family of 4. Struggle now with everyday things.

    One thing I realized in hospital was somethings are just not important, close family and friends are the most important. I worked in a intense office environment ,as well as outdoor challenges, some of my work colleagues are puffed up bullies, ego monsters and back stabbing idiots but really I am just thankful that's not what i am like and I dont let their behavior rub off on me. I try and look at positive things everyday and take every day as it comes. I cant make major plans currently, as post VM affects things so much.

    Claudeminh, personally think your work is not helping you recover. Sounds very stressful and I would dread going into that environment every day. Would seriously think about getting out and working somewhere else, might seem like a major life change now but is it worth suffering for months, years otherwise. I know loads of people who changed jobs and are now so happy, they wondered why they didnt do it sooner. Life is too short to suffer idiots like them. Good luck.

  • Dear Maxamus, are you at work at all or is too early for you? I had it in Oct 12 so I am a bit further down the track then you.

    I really appreciated your reply and you are totally right about the work bollocks. I work in a major museum and have been approached by other departments who asked me to work for them recently. I have said yes to them all and am dividing my work between education who are really nice, and the zookeeping area, who are really horrible. So 3 days with nice people, and 2 with horrible. I am significantly depressed after working with the horrible ones. And not with the nice ones. So I have decided to chuck the job in with the psychopaths the moment I get a new one. And I am actively looking and making it happen with interviews. Its intolerable and the stress of a new job will be less then the crazed triadic narcisissists I work with now. (theres two of them who work together on being crazed despots). And i am grateful not to be like them also. I want to like myself and not be engaged in destructive pathetic behaviour. The health complaints are an obvious side effect also. I am not going to be afraid to change jobs and you are right about dreading going in to the current workplace. When I come home I am moody, flat, exhausted from the mental combat and depressed and hopeless. Its been so useful to realise its an environmental depression and not solely caused from the VM. Indeed, over our long Australian summer I was not at work. I had no income at all and was off sick from the VM but I became happier and happier! The happiness index rose. Got back to work and it plummeted. All so obvious signs of the need to escape.

    One thing about the VM, its made me more sombre and also more wise. I have felt I have crossed the Rubicon and am never going back. And not in bad ways. I feel wiser and stronger, even though physically weaker. I also realised the power of true deep meditation. I have been practicing for years but not so much as I need. After the hospital stay, I developed a severe case of insomnia. One night I woke up at 4.00 am again, and decided to go inside my brain with intention to scan and find the damage. I breathed and meditated my way inside and scanned the brain pathways internally until I located the perceived area of sleep damage. I applied a mental white bandage to the location and breathed into it, deep and long. I applied a mantra. I went to sleep after and have slept ever since.It did take some weeks to get back to normal after that but the improvement was strong. I know the area of damage is front right temporal lobe, I could feel it in there. And I have residual pain right in that area and that eye has pain when tired. But I knew where to find it. So your brain is a powerful thing and can be accessed through meditation. Actually it probably helps with rewiring some of the damage. Maybe you should try it if you dont already. Meningitis appears to ruin some of the wiring routes. I also intend to start dancing to help wire the brain body thing. But not just yet, still getting the cardio back up. But i think its going to help.

    When you are well enough, do you think you can swim? I found hard cardio that is weight bearing bought the headaches on. All that blood pounding after I rode my bike. But I can swim. It feels good. At the start I only did 4 laps. And then when I went surfing only did 30 min. Felt good. You are protected in the water from the heaviness of your body weight. Anyway, it might be nice as you said you used to do a lot of exercise. Good reentry.

    Yeah anyway, it was nice to hear from you. I expect to still be moody and cranky and you probably will be too. But we can continue a discussion whenever you need too as its good to have people with experience. Oh one more thing, when I over do it and get really tired, all my muscles ache, like have been at the gym and running. But its not the muscles. They have not moved. Its my brain that is tired and it does something to the musculature structure and ligaments and bloody all of it!! ahh the brain is a strange and wondrous thing. Hang in there, its getting better over here slowly.

  • hi x

    i feel the very same went back to work six week ago .. feel like an alien to the world outside my moods are bad for no reason i also cry for no reason i.. i am now very paranoid and never used to be when i laugh alot my head hurts so bad when i cry alot my head hurts so bad when... i had vm in April then again in hospital end May then again in beginning sept ... although sept time was very very mild and my spelling and memory is very bad i get joint pain alot and lower spinal pain ... x some days i feel i have had enough .. am struggling to work full time in a special needs school as a teachings assistant .. but can't give up work due to money when will life get better? x this site helps me very much as i often think i am going mad ....

  • Hi is there any chance you can reduce by a day at work? Have wed off? If there is ever a time to be kind to yourself it's now. And if u feel depressed u could talk to your dr about referral to a good shrink. I know I am off to see one soon. Plus I am taking the drugs they give me to control the aches. So do what u need to help yourself as this is really heavy. And eventually it will get better so you got to remind yourself. You r not alone in this. All the rest of us on this thread understand.

  • Ah bless your heart kel80, it all sounds so familiar, I was told I don't no if it is true or not but it makes sense to me, that the joint pain etc is the virus making its way out if the body ! My lower back & joint pain was unbearable at times but with time it diminished. As for claudeminh, I love the fact you meditate I also have found it helps so much but the scanning thing I have not done but will do now, I have found this thread very helpful. This site has at times helped me in ways no one could imagine. Thank goodness it's here. X

  • Hi siobahn, thanks for nice reply. I am taking some drugs at night to control the pain. It's working. They are lyrica and endep. Might not help with weight gain is only thing. But better than the pain. And today I decided to never go back to my job again. I am we'll enough to work elsewhere so that's exactly what I am going to do. Then I went out and bought some tunes on vinyl and feel good about the decision. I have decided mental health (or lack of it) is making me feel evil and barbarous and it must be controlled better. For me right now it means getting out of the one situation in my life that disempowered me and is not helping me. It's hard to get better from meningitis with bad people around you. Or a bad situation u got yourself into. So I think it's wise to free ourselves. I hope u start to feel better soon x

  • Hi, I had VM in December 2011 VERY scary for my wife who had to watch an Air Ambulance land for me!! Any way I was in hospital for 7 days and went back to work after 4 weeks. Looking back I should have taken a lot more time as I had no idea what this does to you. I went through some tough times, with headaches, extreme tiredness and depression. Given the time it takes to recover it is very difficult to say whether the symptoms are due to VM or not but all I can say is that it changed me and completely knocked the stuffing out of me. One piece of advise. Do not hide what you have had, when I left hospital the doctor told me

    1. you do not know how ill you have been.

    2. you do not know ill you are yet to be

    3. you do not know how lucky you have been

    YET

    Tell people how you feel, they and you may get bored with it but it will help you in the long run.

  • Hi, I had VM in December 2011 VERY scary for my wife who had to watch an Air Ambulance land for me!! Any way I was in hospital for 7 days and went back to work after 4 weeks. Looking back I should have taken a lot more time as I had no idea what this does to you. I went through some tough times, with headaches, extreme tiredness and depression. Given the time it takes to recover it is very difficult to say whether the symptoms are due to VM or not but all I can say is that it changed me and completely knocked the stuffing out of me. One piece of advise. Do not hide what you have had, when I left hospital the doctor told me

    1. you do not know how ill you have been.

    2. you do not know ill you are yet to be

    3. you do not know how lucky you have been

    YET

    Tell people how you feel, they and you may get bored with it but it will help you in the long run.

  • Hi, I had VM in December 2011 VERY scary for my wife who had to watch an Air Ambulance land for me!! Any way I was in hospital for 7 days and went back to work after 4 weeks. Looking back I should have taken a lot more time as I had no idea what this does to you. I went through some tough times, with headaches, extreme tiredness and depression. Given the time it takes to recover it is very difficult to say whether the symptoms are due to VM or not but all I can say is that it changed me and completely knocked the stuffing out of me. One piece of advise. Do not hide what you have had, when I left hospital the doctor told me

    1. you do not know how ill you have been.

    2. you do not know ill you are yet to be

    3. you do not know how lucky you have been

    YET

    Tell people how you feel, they and you may get bored with it but it will help you in the long run.

  • Hi, I had VM in December 2011 VERY scary for my wife who had to watch an Air Ambulance land for me!! Any way I was in hospital for 7 days and went back to work after 4 weeks. Looking back I should have taken a lot more time as I had no idea what this does to you. I went through some tough times, with headaches, extreme tiredness and depression. Given the time it takes to recover it is very difficult to say whether the symptoms are due to VM or not but all I can say is that it changed me and completely knocked the stuffing out of me. One piece of advise. Do not hide what you have had, when I left hospital the doctor told me

    1. you do not know how ill you have been.

    2. you do not know ill you are yet to be

    3. you do not know how lucky you have been

    YET

    Tell people how you feel, they and you may get bored with it but it will help you in the long run.

  • Hi all. It's heartbreaking to read all these terrible experiences, but such a relief to know I'm not alone! I had Viral Meningitis in Jan, and hearing other people's experiences, it seems that I was very lucky that my GP not only came out to visit, but also immediately recognised the symptoms and sent for an ambulance, sending me with a letter, advising the hospital that I should be tested for Meningitis. I was given an MRI scan and a lumbar puncture, which confirmed VM. However, I was only kept in for one night and was sent home whilst still extremely poorly. I have a 3 year old daughter, and at the time, my son was just 4-1/2 months old, and I was still breastfeeding.

    Since January, life has been quite difficult. After leaving hospital I had no idea what to expect, as I was told VM is not serious and I would be better in 7-10 days!! I did not leave the house for 5 weeks and spent most of this time in bed, just getting up to do as much as I could with the children, but after half an hour or so, even getting back upstairs was a huge struggle. I did start to improve, but each time I thought I was getting better, it has always been short-lived, and I keep ending up back in bed. I get headaches, back and neck pain, terrible joint and muscle pain, particularly my arms and extreme fatigue. I wasn't a very patient person before VM, but now I feel like I'm snappy and irritable all the time. I struggle with concentration and sometimes can't stand too much noise. I also have a blocked nose all the time now, but I don't know if this is related.

    The advice I keep being given is just to rest, but this is almost impossible with a 3 year old and a teething baby, who sometimes screams for hours in the night. My husband and my parents have been amazing, and I have been completely reliant on them, as sometimes it has been impossible for me to look after the children. However, sometimes I feel so down that I think they would all be better off without me! I feel like such a burden, as my parents are spending so much time looking after my children, and my husband has to work all day and then come home to me wanting to go straight to bed, and he's been doing much more getting up in the night, which I always used to do. I definitely have very special bonds with both my children, but I feel so angry that my bonding with my baby boy has been interrupted by this horrible illness. I had to stop breastfeeding, as I didn't have the strength, and have spent far more time apart from him than I did when my daughter was a baby. I feel like I should be stronger for him, but I just can't be!

    On one hand I do know that things will get better, but some days I can't see any end to this. Its almost 4 months for me and it's been such a rollercoaster. I wish I could know when it will be over, so I can start enjoying life again!

  • hello heroes!! I had VM in august 2012, i was in the hospital 2 weeks and in a rehab for a week, then I went back to hospital for another week, then back to rehab for another 2 weeks, in my second time in the hospital I thought I would die, before the VM, I was a soldier, then being in a wheelchair,it is painful, I didn't work for 9 months, when I started working, me brain was stupid, people were talking to me and my brain wasn't there, in my job all my friends supported me, so after that week because my brain I did not work again for a year, numbness, headaches, constipation, sleepless, and the list go on, then I went back to work, but I lost potential to perform my job, so the department transferred me to another easier location, I know I am doing good, but I also know i lost my skills, at first it took me a lot of time to accept me the way I am now, of course the way I was and what I am now, too much difference, but no longer the same active person I was, what I want to say is working, doing something after almost two years recovering helped me a lot, I went to 6 neurologist, and still visiting one, they don't help, writing all of that I lost my meaning, It happens to me all the time, we have to accept us the way we are now, mentally we can be the same but no physically, or vice versa, I was watching videos in youtube people after meningitis, we are lucky that at least we can write, read, and still do something else than regular people can not do it, I said regular, I think because we are not longer regular, according the problems we are going to go through our life we are going to see our limitations, I wish to all of you, the best, and don't forget we have to accept us the way we are now, probably with the time we get 100% recover, I don't know, I hope yes.

    Menin from New York

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