Hi I am really struggling. After having been hospitalized for Viral meningitis in May 2018 after having my 3rd baby, I am still suffering with muscle aches that feel like growing pains as a kid, migraines, lack of concentration, back pain, neck pain, stomach issues, fatigue. I used to work out every day and now if I work out I feel so tired the next day.
Has anyone tried any medications that have actually worked? Opiates aren’t used long term and adderall can help with concentration but I’m still not well and it is really hard to always have to act like I’m fine because I am sick of being the complainer - it seems no doctor knows what to do with me? Any suggestions?
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I’m so sorry you have numerous lingering effects. I am too early in my journey, having been diagnosed only 2 weeks ago and still undergoing antiviral IV. So I don’t have much to offer at your stage except for solidarity in the complete surprise at how painful, severe and impactful this illness is and how few understand as well as the personal judgments we take on. I hope you will get helpful responses and that some of these things will ease.
I'm 17 years, this year, post near fatal VM so I hope I can offer some help. Unfortunately VM takes time to recover from and it's not helped by doctors mostly saying that you should be better in 2-3 weeks. It's what they are taught in training and since most will never see a case of VM they don't know any better. This is probably not going to help, with three children, but the only real way to recover from VM is rest, rest and when you feel better rest some more. If you try and push through it then it will knock you back, if you try to do what was 'normal' for you before VM then it will bite back. I discovered quite early on that I needed to adjust what normal meant to me. Normal prior to VM was 40-50 hour weeks at work, lots of travelling and training for triathlons. I went from being super fit to not being able to walk and I do mean not being able to walk. I was off work for just under 6 months and was away from endurance sport for 5 years.
I tried to go back 'normal' too quickly after VM by just pushing through it and I ended up back in an ambulance with lights and sirens as my neurologist said 'checking out of hotel life'. No discernible blood pressure and heart rate dropping through 28 when they got me to A&E.
The simple answer to your question is I'm afraid there aren't really any medications which you can use long term for pain and fatigue, the only thing that really works is letting your body recover in its own time. There is light at the end of the tunnel though, after the 5 year break away from endurance sport I went back to triathlon and since then I have completed three half Ironman races, two half marathons and quite a few shorter races too.
It is just a case I'm afraid of trying to rest where you can, tough I know, and slowly you will recover. Hang in there and best of luck, Jonathan
I’m sorry to hear how you’re suffering. Like everyone else the biggest suggestion I can give is rest. Also please don’t like the complainer, it’s an illness no one can ever understand and our brains are so unique it can affect everyone in different ways.
Like many others the doctors weren’t exactly helpful either telling me that I would be back to normal in 2-3 weeks. I was discharged from hospital so quickly as well due to be admitted in the winter and the demand for beds was so high so once they established I was in an ‘okay’ condition then I was discharged despite being barely able to walk, severe photophobia and temp of 40 degrees. This also led to other people’s judgments of ‘she must be okay then if she’s out of hospital’.
I am 22 months post VM and I have now come to understand what my ‘norm’ is. I have researched a lot into diets etc and this is now my lifeline as I now get through each day without medication. I have only recently been able to start exercising but this is still light and only 2-3 times a week (on a good week). I have good days and bad days but I now know that affects so I prepare myself for it and no longer beat myself up about it.
It can feel like the loneliest time in your life so my advice would be to be completely open and honest with the people around you. Please give into your body when you need to, it’s been through a trauma.
Thank you Heather. I appreciate your kind words and it is a lonely time. I am very open with my family but after a while I think people get tired of hearing me complain about symptoms. If I were them I would think that it’s been long enough too. So I don’t blame anyone on the outside looking in.
What medication did you take if you don’t mind my asking?
I understand what you’re saying and some people now make comments to me but it is hard.
I was diagnosed with PTSD 7 months after I was diagnosed with VM and it’s taken a long time to adapt. I initially just took codeine but tried to come off it quite quickly due to the side affects. I now control all my pain relief through my diet and make I plan my days well.
I am on pregabalin. It does seem to help and isn't a opioid.
Given the length of time and your symptoms listed is it worth asking your doctor to refer you for a specialist assessment for possible ME-CFS? VM can sometimes trigger it.
Guy's we come under the mental health umbrella, because of brain trauma! It can as in my case jumble up 3/4 topics and the brain makes it into one topic, causing confusion frustration and anger! Be honest and ask family members has your personality changed! It took me 5 year's of fear, that I was going crazy, people telling me I had done this or that with them, I thought they were messing with me, as I had no recall. It's now been 25 year's since I had menoencephalitis. I was in Hospital for 6 month's and day release for 2 year's under fantastic specialists. Balance gone, debilitated back problems, photophobia, agoraphobia,headaches, after 7years, I worked very hard, but ended up I could only manage part time, in a job I still love, which didn't matter of i was repeating myself,as I had lots of different clients (hair stylist) plus a brilliant supportive staff and boss. Sadly I'm now on permanent sick as my back is so bad I can't stand for long periods of time. I also recommend CRANIAL OSTEOPATHY for relief with neck and back pain. My medication is diazepam for muscle spasms in back and neck. (Anyone had cramp in neck and head?, It's awful) and MST ( slow release morphine,) it helps with the pain. I proud to say I worked for 15year's for the same wonderful boss. Some people don't understand, it's up to us to educate doctor's by reading everything you can from medical journals, meningitis today, and encephalitis society, print it out and insist they read it and put it in your medical records. For the next doctor to better understand where we stand as an informed patient. It's their duty of care. Good luck to all of us, one step at a time. Be informed. Get the right treatments. Anita 😘
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