Explaining pain anyone? My post viral meningitis experience so far....

[rowenafly]

Hello all, I am in Australia. Noone knows much about viral meningitis. Some people understand that its very serious. But many say things like' oh its all better now isnt it...' I dont reply. I am posting this to explain what has happened after my October 2012 viral meningitis. I am 10 months post viral meningitis and have had some chronic conditions from it. All the same as you all, not the deafness, but depression, fatigue, headaches etc. I also have central sensitisation of the central nervous system which means your brain reads pain at a much higher volume. Wow, thats fun too. Hmmm. I suspect many of you have similiar condition as VM resets the brain in a way. I had a whiplash injury three months ago and the result was intermittent extreme pain, off to emergency in the early days and a weeks worth of morphine. That type of thing. A pretty extreme overreaction. However, I have found a musculo skeletal physican expert who is helping it with endep and prednisolone (very evil drug). The one key thing he said is to increase your cardio exercise in a very smooth fashion. That means no jarring radical movements. So stationary bike riding, walking on treadmill. I am upto doing 45 min a day. Very carefully. So I dont know if that helps anyone, but if you are having over sensitization to pain and stimuli, look up Central sensitization, and particulary the website by Dr Lorimer Mosely, bodyinmind.org, they are experts on chronic pain in people across all areas. Might help you understand some of the processes. One thing in particular about the exercise, is that the chemicals it produces in your body start to overide the pain mechanism. But it should be done very very slowly. I started at 10 min on the bike. I was really unfit. The book Dr Lorimer wrote is called 'Explain Pain'. I also have sensititivity to smells and have had some heavy duty anxiety and feeling freaked about things. Meditation is the key for me to calm down. The one key piece of information I have found, across all the therapists I have spoken to, is that body will calm down sensitization over time. That is the body will keep trying to reach homeostasis. It helps to provide the right conditions for it. So not doing things that fire up the central nervous system. So smoking cigarettes and alcohol both fire it up. I confess to doing both at times during my recovery which is a bit insane but the depression led me to both at some points. I have stopped both now that I know its effect on the nervous system. I also stopped my toxic workplace, as you receive many environmental cues to stress and fear and this will lead your CNS to producing cortisol which elevates your reactions. So in order to recover you have to understand the cues your body is reading. Including crappy situations. Its best to avoid toxic people, conflict and situations, particulary environments where you feel threatened, or powerless or very stressed in. I believe the body desperatley wants to find its healthy level. For many of you, that occurs over weeks, months or years. But the body will try to find a way. I sincerely hope that all can believe that, espeacially if it is taking a long time. However, the body and mind are very powerful, but we all have to be patient. I have met a few VM survivors, and they all said the body comes back, but they did say it took over a year from onset. Some longer. But they were better after a time. I hope that gives you help. Maybe we all need to be realistic about the recovery time. If you are in your first year or two post illness, and have found some incremental improvement, then thats the key thing to recognise. Its coming, its just slow and this is the road we are on. Good luck to everyone and I have found talking to you all the single most sane thing for the recovery.

[Canada3]

Hi Rowenafly, yes I am very familiar with Moseley's work and have used some his imagery with mirror boxes with dreadful hand pain in my work as a physiotherapist. Its both fascinating and rewarding to see how the brain works and especially with complex pain. I am dishearted to hear about your experience with VM in Australia, I always assumed (incorrectly) that it is only the UK that doesnt have a clue about the long term effects of this dreadful illness. One thing you touched on which rang alarm bells for me (I am 4 years post VM) is the "toxic people". I call them "energy vampires" and I really do have to avoid them at all costs, as they do zap my meagre energy levels. There are lots of these people around, and when I worked as a physiotherapist for many years, I just took them for what they were, but was unaffected by them.... not so now! My husband doesnt appreciate it that I dont want to see "friends" who fall into this category and I guess they dont have that effect upon him. I too still have hypersensitive hearing, and light sensitivity, though it has improved and is continuing to do so. Your homeostasis, you are so right, is quite upset for a long time, its like having hormonal hot flushes sometimes at the wrong temperature! Cranio-sacral therapy did help me with this, if you have such a treatment in Australia. We have some physios who practice, and i fact I am doing my Cranio in September this year in London. I hope I can possibly offer some local post meningitis sufferers some treatment when I qualify. Good luck to you too... take your time. I thought I was fully recovered at 9 months, returned to work and found I had taken a few steps backwards... still battling onwards and upwards as they say!!! Yes, the fellow meningitis sufferers on this site are an inspiration and keep me sane too. Big thanks to the Meningitis Trust for being there for us too and providing this forum.

[rowenafly in reply to Canada3]

Thanks Canada for nice reply. Yes I guess we are all in this one together arnt we. However, in this country there are some excellent medical practioners but you have to hunt around to find them. I think I am onto the right answers for the weird post VM symptoms with the central sensitization as it creates light and smells and noise sensitivity as well, all of which I have had. Have you tried exercising gradually at all? I am interested to know how other people are if they have tried it. I am finding it very useful for the depression as well. As for toxic vampires, well they are always around but after a powerful illness we are more sensitive to their noises and ego hey. Its taught me about my own ego too and how not to impose it on people. Good luck with your study, yes I know about cranio sacral therapy, I used it before for different things with back pain. At the moment I am on such a good program I cant fit in any more therapists!! So for now I am sticking to the things I am doing which is working so far. Warmer weather helps too I have noticed. Thanks and stay in touch. Rowena

[Dynomite]

I had bacterial meningitis and I to suffer from some of the same things as you both, sound sensitivity being one of my biggest issues. Sometimes the same volume is too loud, sometimes too quiet, sometimes I think my brain just jumbles it all up and it doesn't make sense, it's very frustrating. I never realized the "toxic people" thing until you mentioned it, but even a friend I was close with before I got sick now just makes me feel drained, and I try to avoid him. I live in the US and am on my way to a 2nd Dr as the first didn't know anything about meningitis but still collects a hefty office visit for nothing. (We don't have national health coverage here, I don't have insurance, and am facing some pretty outlandish medical bills.) Everything I know about meningitis I learned here, and am grateful to have others who understand what I'm going through. It's also helpful to hear others stories to know your not alone. Best Regards, C

[rowenafly in reply to Dynomite]

hi thanks for the reply. Yes its hard in America for health isnt it. Australia is easier. However, you can look up stuff on that body in mind website if that helps. Also, bacterial is generally much more serious so you will need special help and not an average doctor. I feel for you having to pay a lot, its such a powerful illness and it stopped me working properly for 10 months now, so I imagine you have had a difficult time too. If there is any information I can help you with let me know. You can call the Meningitis Trust in UK as well and they will talk to you. They may have an affiliated institution in the United States. Have you been recovering long and can you do any exercise at all? Regards, Rowena

[Dynomite]

Hi Rowena, yes I exercise, walking. I started 2 weeks after I was released, a block a day at first, I can now walk 2+ miles on a good day, sometimes I need my walking staff because I'm having a bad balance or dizzy day, every day is different some days I feel as though I'm almost better (except for hearing), other days I feel like I did when I got out of the hospital. I came down with mb, April 21 2013, was in hospital for 2 weeks, I think they wanted me to stay longer but I didn't feel I would EVER get well there, so uncomfortable. I AM getting better, I don't think I'll ever be the same though. Do you ever feel like your a stranger in your body? I totally do, I always say I'm not sure I like the brain they sent me home with. As far as bacterial being worse, I'm not so sure after reading people's stories on here, I feel for the mv sufferers as well, sounds like you all are having an equally difficult time with that illness too. Take care and be well, C

[rowenafly in reply to Dynomite]

Dear Dynomite, well you are doing really well considering its only been four or five months. You should be proud of yourself as you are probably doing really really well. Its so good you can exercise this much from having BM. So I reckon everybody feels like hell for the first year so I m accepting that this is the way it seems for most people. So I m begining to feel a lot better but the whiplash I had four months ago is definately playing up due to having had meningitis. So best not to get anything else during recovery is my suggestion. Im really glad you are getting better and I think you should take heart that its occuring so soon from the original infection.