Post VM - Suffering from CFS / ME?

Hello again! I'm still trying to find answers as to why I'm collapsing ( full body weakness) 15 months on from VM! I collapsed again on 1/3 then again 6/3 then 12/3. Previous to that I'd managed to go 5 months clear of major collapses ( I had 1 small one)! Anyway, I saw an article today on CHronic Fatigue Syndrome / ME and the symptoms appear to match my own very closely - headaches, fog in head, memory loss, lack of concentration, difficulty with saying words, fatigue, collapses ( as body just cannot due anymore - full body weakness!) and u can get it from a viral infection and u can have relapses!! has anyone been diagnosed with CFS /ME ? After VM? Doctor said there's no test for it so to speak to my neurologist?? Anyone know anything? Thanks 

16 Replies

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  • I have been diagnosed and I to am 15 months post meningitis, I suffer from most of the symptoms you have mentioned, there was no formal diagnoses process my gp just said once you'd been continuously ill for a period of 6 months or more it's class as chronic fatigue. There is no treatment and for me I suffer more when I over do things and I am prone to picking up every infection going and you take longer to heal, I have a double chest infection at the moment which is now in its 3rd week. At my local hospital they have chronic fatigue clinics but my gp didn't feel the need for me to go, despite still being the same a year on!!!

  • Definitely go to the CF clinic. Do t rely on your GP to know everything about modern day symptoms and the causes

  • I can't go as he wont refer me as he doesn't think I will benefit from it, my after care has been shocking beyond belief!! I've still never seen a neurologist 15 months on and every month I go to see him for a review he just says its normal, learn to live with it and deal with it, this is no life and I don't see why I should live with it in this day and age!!

  • Dear Emmadale,

    Are you able to go to another Dr?  I've had similar symptoms of whole body collapse due to my brain shutting down and not communicating with my body.  I found a Neuro/Chiropractor (a chiropractor who has also studied Neurology) he has been an amazing help and surprisingly these symptoms aren't uncommon.  Are you able to find a good chiropractor and even better if they have studied Neurology.  All the specialists in the world haven't been able to help me so I had to seek alternative treatments which are helping immensely.  He diagnosed me with "Deafferentation Syndrome with Mesencephalic wind up leading to Limbic Escape" (maybe have research these and see if it fits your symptoms) a good chiropractor will be familiar with these terms.  He gave me glasses with pink lenses to stop the light overloading my brain.  The two main things that overload the brain, therefor causing the body to shut down is light and sound.  So time in front of the computer or bright sunny days and loud music potentially could set you off. Stress will also overload the brain (but that one is hard to eliminate considering how anxious you must be about your condition).  Maybe even look at visiting a naturopath or acupuncturist.  Good luck.  x 

  • Thanks Emmadale for replying - you've had shocking after care! I'm frustrated as I've seen people but they just look at me and don't do anything! Keep going u r doing well X 

  • Same happened to me, I just exploted crying like a baby, now no more crying, be strong people, try to eat healthy, I ate for 18 months every day garlic, some how I think it helped me. We need protein a lot, omega 3, calcio, vitamin D, probiotic yogurt or kefir, spinach, kale, sweet potatoes, salmon. Good luck people,  be strong.

  • Emmadale don't say that, I was that way for 2 years and a half, my recovery is good, no the way, I would like to, but good enough to keep fighting in the life, I had vm 4 years ago, I was in coma 2 weeks, when I woke up, my brain was erased, if you look at me now, you can't tell I was that close to die, I know, I am no going to recover 100%, or maybe yes, just have patience, be strong, I didn't take any of the pills that the neurologist and psychiatric prescribed me, just frut, vegetales, chicken, milk a lot, no more trash food, my mother at first was cooking for me, now I cook for me. Don't give up!!!

  • I have VM since Jan 21st. Just yesterday was so weak in my legs could barely walk. Confusion, trouble with memory is everyday. Think what we are experiencing with VM is "normal". See specialist April 29th about this. 

  • Let me know how u get on whitelillies X 

  • P.S I live in Canada, what is M.E?

  • ME is the same as CFS - chronic fatigue syndrome X 

  • I am 20 months since VM and would say I am still not quite there yet 100%. I was diagnosed with CFS soon after VM and was off work for 5 months with exhaustion - loads of little step forwards and loads of steps back - very frustrating for a 27 year old male who loves sport and running. I have made a lot of progress since following the work of Dr Sarah Myhill who seems to be the leading Chronic Fatigue specialist in the UK. She has a protocol and a really helpful book. I took her lab test which measures Mitochondria/energy in cells in Feb 2015 and re-tested last month and my rating had doubled in the year so am happy with the progress. I also discovered I had hypothyroidism after VM so again getting that medication has helped.

    Unfortunately it is such a guessing game and most doctors don't know what to do or how to help. I've found that the supplements and vitamins recommended by Dr Myhill have been a huge help but it is a gradual journey. I hope to be 100% one day! 

    Happy to help if any questions..

  • Wow thanks so much for that information. How do u take that lab test / get it is it thru gp ? I'll pick up her book and have a look ! Thanks so much I'll keep in touch as I'm sure I'll have questions! Thanks so much for replying to me X 

  • Hi I was admitted to hospital 4 weeks ago with VM and discharged after 6 days to rest and recover at home. I spent the first two weeks doing absolutely nothing and then started to attempt to do more but listening to my body and being careful not to set myself back but although I occasionally have a pretty good day the following few are pretty bad. I feel like there's no real progress. I just wondered what supplements and vitamins Dr Myhill recommended so that I can start staking them which hopefully will aid my recovery and build my strength back up, at the moment I can only do the bare minimum before I'm shaking and weak and feeling exhausted. I also am suffering blurred vision and foggy head.

  • Hi - sorry to hear that. The best thing to do, if you can, is buy her book from her website or amazon or download it onto a kindle if you have one.

    Her website has a list of supplements - it's things like D-Ribose, Vitamin B3, L-Carnitine, COQ10, and lots of other things but its best to have a look through her materials to see what you think of it.

    It does take time - I had so many of those days of recovering after feeling good one day. It's very difficult but things will improve. I did so many things to try to feel better but the most effective thing was time. Not what you always want to hear but it helps to know that rest really is the best thing.

  • Thanks so much, ill be taking your advice.

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