Big hugs. It can be a long recovery journey after. Vm. I am 18 months. I developed M. E. and suffer muscle weakness, post exertional malaise, fatigue, balance issues and dizziness and anxiety among other symptoms so empathize. I found getting my ME-CFS diagnose helped at least settle me mentally a bit and help me move past the health bereavement grief phase into something more accepting of where I am at now.
Maybe worth getting checked out via your M. E. Specialist service if you also still suffer fatigue and exertional malaise significantly. I would recommend avoiding neurology as most don't believe vm lasts past 2 weeks and tend to say issues are in your head if they persist as they can't explain or treat them.
I like reading your comments Starry, always agree. I am 7mths post VM now with ME diagnosis trying to get my head around it now. Doctors don't understand Meningitis or ME!
Thank you VMroom. It's kind of you to say. If feel pretty useless in real life so nice to try to help here if I can.
So sorry you've developed M. E. too, I hope it's not too severe and you're not in too much pain. At least your diagnosis has been reasonably prompt as far as things go. Have they offered any help? An OT, pacing support?
I definitely have been in emotional free fall since my diagnosis confirmation last September (15 months post vm) with things only really calming a bit since Christmas. I saw a post on Fb about the grief cycle and it clicked. I've been so angry. Of course even acceptance is a challenge as it's hard to find meaning and a point to things, so I'm not out the other side quite yet.
Yip get the usesless, been in bed since 11, still there. Trying to conserve energy to make my son's dinner. I went to s support group 1 Feb learn about pacing etc but have relapsed as a result of going, too soon so been learning about meditation, calm the body down so it can get to a healing state.
Yes not easy to accept. I went on a mission for a cure & had an emotional crash when reality set in. I've been finding out what has helped others from a closed facebook charity group but I also find it very negative as the organiser keeps talking about no cure. I am determined to recover from this. I have a 13yr old son & I refuse to accept this is it despite no help from GP. I do hope you are ok, anger is good, get it out because you'll move onto the next stage.
Today I found out about a doctor in hospital I can be referred to, infuriating I've had to find it out myself months after diagnosis but hey.
Dribose has helped some raise energy levels so have ordered some. Ive been researching ATP.
Can feel myself slipping now & jargon will spew out soon.
I am sorry you still struggle 18 months later, it is a crazy illness that takes such a long time to heal from it appears..
I wonder if anyone really ever fully recovers from VM?
I have to remind myself how sick I was and how far I have come in 10 months.
My days are full of struggle still with the physical challenges I have with the continuing after effects and now the emotional challenges of this illness, of being unwell for so long.
I am convinced this illness messes with your minds ability to cope and think like before. I feel like I am in a medical induced depression.
In fact, tomorrow morning I am going to see my doctor about starting a low dose medication for anti-depression/anti anxiety.
I have reached my rock bottom mentally with my emotions about my life’s current state, and the devastating effect it has had.
Emotionally, I feel hopeless, sad, angry, devastated and in complete disbelief about this happening to me.
I do not feel any hope of ever recovering or feeling better.
I cry everyday and can barely make it through the dark days.
Physically, I feel tired, weakness in extremities, numb hands and arms/legs.
I see my Neurologist on Thursday and will speak with him about referring me to a M. E. Specialist.
I am a Mom to my precious 4 year old little girl.
She keeps me going and I am so grateful to have her to keep me going.
I can take care of her, play with her, get her to preschool, keep
up with things around the house.
This illness is such a battle, of the body and mind.
I pray we all will heal and feel happy again.
As dark and hopeless as I feel, I do know God is aware of each us and loves us.
You definitely go through a real maelstrom of grief feelings after everything. Over time and thanks to pregabalin my emotions and anxiety has stabilised alot. I've learned to pace adapt and find positives where I can. Though I still have bad days.
Hi l am just over 2 years post v.m. and just feeling as if l am getting symptoms under control. I had extreme weakness and dizziness to the extent l couldn't climb stairs unless l was on all fours turns out my vitamins B12 AND D where extremely low a simple blood test has helped me enormously. I was lucky with neurologist too just finished in January and she also referred me to the brain injury clinic big help. Good luck just keep going you will get there.
Hi. I had this (feeling like my legs had been filled up with sand) it wouls come just when I thought I was getting a bit better. It's important to get this checked out by your GP. For me I had depression which is not too surprising. Also I agree with the suggestion of taking supplements Vit D3 especially this time of year.
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