Had vm a year ago and now suffering from severe joint pain, shortness of breath and terrible moods wings. Anyone?? Also any elem teachers

[Missy2012]

I was an elementary teacher before the vm. I haven't returned to work since. At this time I'm have a lot of joint pain but what really scares me is how easily I get upset and how impatient I've become with my own children. When I get frustrated I can't concentrate and it's just a cycle. I get comments about how I've changed. I used to be an easy going person and now I'm moody. I'm scared of going back to work and getting upset with the students. I don't know if it has to do with vm but I'm not the same person I use to be.

[Becks78]

Hi, I had VM 7 months ago. Up until a month ago I was having awful joint pain, mainly in my hips, on advice from a friend I finally went to see a chiropractor, I explained my situation and after 2 appointments a week for a month I am pain free! Moods wise I can completely understand where you are coming from. My patience is low and I snap or cry a lot. I lost my job too. I think sometimes my moods are down to being frustrated with how my body won't work the way I want it to. Getting the pain issue sorted has helped a lot though. I heard at an early stage that sleeping when you feel like that is good too, but as a mum I just didn't want to, even if I could. Now though I do, about once a week I have an afternoon sleep for at least a couple of hours and that does me good. I try and take myself off during my bad mood times as much as I can and just accept it and try and find something to do to snap me out of it (the funniest episode of my favourite sitcom or a photo that makes me laugh). I hope that has helped in someway. Becks xx

[rowenafly in reply to Becks78]

Hi Becks, I too had VM and have some pretty terrible mood swings. Depression and anxiety seem to be a common side effect. I have to meditate to help it, and the greatest anti depressive of all, which is cardio exercise is the key to my gradual transformation. Its a year since I had it and I am not at work but lucky to have income insurance which I am living off. I am exercising cardio fitness 6 days a week and its improved my mood enormously, but I cannot get by with under 10 hours of sleep a night on my exercise days, which is 6 days a week! I had terrible joint pain too, like arthritis. Then got whiplash and over reacted to the pain. Off to emergency, a week of morphine etc. Then, i got the most definitive diagnosis of post viral meningitis,that of central sensitization. The central nervous system has had an assault from the chemicals, which makes sense because the entire lining of brain and spine was affected by the inflammation of the meningitis. Lots of chemicals were released at this time to fight the virus, particularly glutamine. This then has jangled up the CNS. So then you can react to pain symptoms in an elevated way. So....the antidote to calming the pain syndrome down has been the positive chemicals released from gentle smooth cardio exercise. No jarring movement. I was told to think of exercise that creates smooth muscle movement. I started at ten minutes ten weeks ago once a day. built up slowly. Now can do 50 minutes a day of low intensity. Recently am interval training, so 2 minutes higher intensity, two or more minutes off. Cant do 50 minutes like this, have to do 30 or 40, including 10 minutes of gradual warmup. Really tired from it, but mood improves, so there you go. I was very fit before this, and lost it all during the illness so its a slow climb up. I dont know if that could help you. If it does, get an expert to manage you though it, perhaps a sports physician with knowledge of pain conditions? That who I found due to the whiplash. But....the thing is, the joint pain is gone. Good chemicals overpower the bad ones. So, as hideous as VM is, it appears it can be managed. Im still pretty moody, and feel a bit explosive like Mt Vesuvius. But hey, its a slow climb out. Good luck to you, Rowena

[Missy2012]

I have appt with rheumatologist in 2 weeks hopefully get some answers then. For the mood swings, depression are you taking anything or seeing anyone. There are times I think I can manage it myself and times when I feel lost

[Becks78]

Yes hope you get answers at your appointment, I have been referred to a neurologist and am just waiting to find out when. I'm not taking anything, I really don't want to, I have this feeling that VM made me not myself and I don't want to take anything to make that worse, that probably sounds weird but hopefully you see what I mean. I just do the things I mentioned about (sleep, go with it or try and snap out of it with something funny - going outside is always nice).

[Becks78]

Meant to say also that I'm not sure if you feel this too but my family and friends are great but they don't really get how I feel, I only joined this forum yesterday and already it feels good to talk to people who have been in the same situation and know how I feel. X

[Missy2012 in reply to Becks78]

Yes I agree its definitely nice to talk to someone who gets it. Even the drs and therapist couldn't quite understand. It's just frustrating to know and feel something is wrong and not have any answers. Sometimes I'm think I'm loosing it

[siobahn]

Dear missy2012

I am 4 yrs sept post vm I can relate to all you said 100% it's like reading about myself word for word..... In my case the docs didn't have a clue and I believe still don't.... They don't realise its meningitis without the septicaemia we suffer the same....

At times I believed I was truly goin mad, the constant pain and unwellness took its toll to say the least... I had a h ache for 3 yrs + the accompanying pressure intolerable, dizziness, nausea, feeling off the planet, incapable at times to string a sentence etc etc the list is endless... I was referred to neuro where I had a lumber puncture the pressure diminished and the h aches almost gone, this was dec 2012.... For anyone having lp drink skimmed milk it hydrates the body much better than water.. I had no lp h ache after which they say is normal..

I did breathing exercises, deep breathing but slowly does build up to longer intakes.... Mindfulness meditation helped enormously, I also attended a brahma kumaris retreat in uk but they are all over the world, at the time I was at a point of b down not just mentally but the physical poorlyness was unbearable some days I could hardly move with joint pains hip, knees, neck u no the rest !

Bk gave me a wknd to nurture myself I came out relaxed and refreshed..... It was also free( donation accepted as little or as much as you can afford )

I basically decided I had to nurture myself, no one else can do it... Yes it's hard when you have kids, I lost 3 + years of there growing up to be honest but I was I'll and so are you..... I only took p killers then nothing I let the virus work it's way out if the body and that us why so much joint pain it's working its way out and it will.... I'm proof if that....frustration will prolong illness try to accept it and know it won't be like it at some point.. It's a long hard journey but you'll get there...

B strong..... Look after you....

With love

Siobahn x

[Missy2012 in reply to siobahn]

Thanks for your reply. I really wish I could take some time off for myself at this time. But with 3 young children and my husband and I not being on the same page right now. It doesn't seem possible. It's hard to explain to others what can be seen with the eyes.

[siobahn in reply to Missy2012]

Missy 2012

I hear what your saying and agree totally, the frustration at feeling so poorly inside but looking ok on the out was one if the biggest challenges emotionally for me.... I attended a group for people with head injuries and one of the guys hit the nail on the head( excuse the pun!) he said to one of the other participants whom had a physical disability from there h injury that others could see they has suffered some type of injury but for him that wasn't the case, he said if he heard another person say to him 'you look well' he wouldn't be responsible for his actions! I could really relate to what he said and at the time to know it wasn't just me helped enormously.... Have u read 'a letter from your brain' ? I gave a copy to my family members too read, it explained what i was goin through much better than I could at the time which in turn gave them a better understanding of my illness. Hold in there girl

Ul be ok

X

[kel80 in reply to siobahn]

Hi xxx what is this bk as I would be very interested please xx

[Missy2012 in reply to kel80]

It's actually not a book. I googled it and its a really nice letter/poem.

[siobahn in reply to kel80]

Hi kel 80

Bk is brahma kumaris world spiritual university..

They respect all faiths and teach a firm of meditation which calms the mind and in return heals on all levels... I attended a il retreat and what a wonderful experience, it gave me 'me time' just what I needed, time to take stock, relax and nurture myself.... It was a big part of my ongoing healing.... Check out the website

X

[siobahn in reply to siobahn]

Uk retreat

[kel80 in reply to siobahn]

Thankyou xx I will look now x

[kel80]

Hi had vm three times in 2012 knocked me sideways and still struggle , I stopped taking tramadol as found although helped me sleep it made my head pain worse whilst awake .. I am the same as you moods are awful ... Memory is actually getting worse day by day ,, joint pain ... I am 33 and feel like I am 88 ..I never ever would of thought vm made you feel this bad .. According to some GPS it's just like a common cold .. Not that bad... My god I often wonder if they got it would they change their minds.... Suffered for an entire year .. And now continued suffering With the aftermath of vm ...

[siobahn]

U no what kel80 I've just read your post, why is it again and again I here the docs say it's nothing to worry about 2 wks and you'll be over it!!!!!! This to me is an insult to us that have suffered and still suffer daily with no support from the health care profession until by chance one of the neuro psychologist put me forward for a pilot project workshop 'life after a head injury' I met some great people who For the first time in 3 yrs got me, got how I was feeling, it was a god send for me personally, I didn't feel lost like I had done for so long.... The other participants felt exactly how I did..... We finally met others who had experienced a head injury through whatever cause and we all felt a space where we could come together and talk made so much difference... Thank god for this site.... I would love more support groups for vm sufferers so they could chat face to face.....

X

[Canada3]

Hi there, and really sorry to hear your story of VM. I too had VM in 2009 and its been a slow road to recovery. I was just thinking I was almost there though perhaps without my old stamina... however about 4 weeks ago out of the blue I developed joint pain like you. Swollen painful hands and feet, knees and it looked like RA to me (seen lots as a physiotherapist) but just couldnt believe it! Anyway, seems I was right and seen a Rheumo and now going on Methotrexate sadly. I really do understand how devasted you feel, as I was too. I feel pretty sure that a damaged immune system from the VM will have made all the rheumatoid problems more possible, though we have no family history and I have never had any other symptoms prior. Its annoying and life changing but I look to the site with many others and also a friend who was diagnosed a few years ago.. they give me hope and optimism for the future. Sad we have to take medication for the rest of our time but at least its not a death sentence like so many other illnesses we see. Good luck to you with your meds and treatment.