RE: can meningitis cause CFS: I too had... - Meningitis Now

Meningitis Now

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RE: can meningitis cause CFS

kf18504 profile image

I too had Meningitis several years ago. I was 19 (2007) I also ended up with Shingles at the same time. I had no idea what was going on but felt like my head was going to explode, thinking it was just the first time I was experiencing a migraine I tried miserably to wait it out. After 3 weeks, the pain was so extreme, I could not even walk anymore. So I ended up being taken to the hospital to discover I had Viral meningitis and was near death. I waited so long that one firm bump to head would have cracked my skull. Ever since, (11 years) I have experienced the worst, most regular migraines, I don't ever feel rested even with medication to sleep and medication to make you more alert. I have a horribly weakened immune system and when I get sick I have a really tough time recovering. Exercise is a huge part of me staying somewhat healthy, however I am always exhausted and have to force myself to do anything. I also take longer than your average person to heal after surgeries, have had post surgical complications with each one, and have many bouts of confusion, (brain farts) and my anxiety has gotten to a point that I have been hospitalized for bizarre panic attacks that cause me to stop breathing. My body is no longer that of a 31 year old on the inside. I am severely anemic and receive infusions every 3 months, and am under the care of pain management for various issues. (non-narcotics). Friends and Family think because I look healthy, that I must be over exaggerating, but when I explain that I have been bounced around from one specialty to another, they realize that it is not all in my head.

I would also love some answers. I am convinced after all the research I have done that my issues with extreme fatigue, pain, confusion amongst everything else that I have CFS. My PCP thankfully is ready to help find some answers.

9 Replies

Good morning, I’m sorry your having so many problems bless your heart I really hope things get better for you and that your doctor is listening to your needs and helping you move forward 💖 I don’t personally know about CFS but I think anything is possible with the after effects of meningitis the list can be endless, my daughter is 8 and had menginnocochal septicaemia at the age of 2 and a half and as the years go on the more we notice the after effects fatigue moods swings headaches lowered immune system (she’s just got shingles) and they get worse over time, it’s only the people closest to you that will see any of what your saying so don’t be defeated by people thinking your over exaggerating because you look healthy, I get the same with my daughter because she looks well all the time I even get the comments of oh she’s just a normal 8 year old and my response of you lived with her you’d notice the difference, I think the most frustrating thing with after effects is getting someone to really take note and listen to what your saying without making you feel like it’s all in your head, I take paper work and show doctors the research I’ve found and that usually helps them at least say right well rule it out. It has took me years to be finally listened to as she’s only just got to see the paediatrician A’s didn’t receive any aftercare upon leaving the hospital, luckily your under certain specialists anyway so should be ok for you to be pointed in the right direction on treatment, I’m not sure what treatments you've Looked into for yourself but I’ve got a couple of friends with different pains and problems and they’ve started using CBD balms for achey areas and oils for sleep and pain, along with there daily medication they’ve both said it’s helpful for sleep and pain management maybe worth looking into, I know I wasn’t massively helpful with my response but just wanted to let you know your not alone in the battle and just remember your feelings are valid and you deserve to be listened to and treated appropriately hope you get the help you need 💖 xx

Thank you! I use CBD oils also, it helps a little, I am looking two options for other CBD products that may be a little bit more effective for me personally. I'm so sorry to hear that this is happening to your daughter who is so young. I have had to change my perspective on quality of life a little and just remember that I've gotten through that scary part and I can get through this too I take it day-by-day sometimes minute by minute. Thankfully some of the issues that I have had that have come along with it I have been able to find help from my GP such as migraines and different anti-inflammatories that would help with some of my muscle and joint discomfort. Including Botox treatments for my chronic migraines. I never had one before I got sick but since they have been very regular anywhere from 15 to 25 times a month. I'm not sure if they do that for children but that might be an option when she gets older if she still suffers from things like that. I've seen various GI specialists nephew neurologist pain management oncology and hematology Specialists as well finally got to the point where I couldn't continue going from one doctor to another to another to another so I just gave up and stopped going. The rheumatologist that I saw dismissed me because of my age despite the obvious issues in my bones. I do have degenerative osteoarthritis a lot of which has gotten much more significant since I got sick pain management cannot give me a definitive answer if it has gotten worse because of the autoimmune issues I've been having or if it's just because of genetics since my mother also has degenerative disc disease in her back. The two are very similar but not the same. I'm hopeful since my GP is very open-minded and very understanding about my concerns that we will try to get to some answers. We had started some testing a while back but the testing done was not sensitive enough to pick up these abnormal bacteria or whatever they call it in the blood and it was invasive. Thankfully he also does a lot of the same physical activities such as Brazilian Jiu Jitsu that I do so he can equate Which injuries and pains are from that versus which injuries and pain are from this illness. I'll be honest the worst part about the entire thing is always being tired aside from having to take medication to go to sleep I can go days and days without more than an hour of sleep and then days where I could sleep all day and wake up even more tired than I was when I went to bed. I force myself to exercise and function through my day because of my kids and my job and overall health, I do know that the physical exercise and maintaining a healthy lifestyle does make a huge difference in My overall health so I just try to stay positive and keep doing it even when I don't feel like it. I hope your little girl gets better.

Yes it can! I had viral meningitis in 2015 and was left with chronic fatigue syndrome and neurocardiogenic syncope. It took a while to get my Cfs diagnosed it was 2017 but it was brought on by meningitis and it is common in aftermath of meningitis. I had to push my gp

To send me to a Cfs specialist to get the diagnosis. Good luck x

Big hugs. That sounds really tough. I am 43 and was hospitalised with vm for 6 days 13 months ago. I have extreme exhaustion, dizzines, balance issues, temperature regulation issues neurofatigue, memory issues and troubleconcentraing and finding words and anxiety and insomnia and photo and noise sensitivity. I also have low iron. I had shingles ten years ago.

I am trying but struggling to return to work on much reduced hours. The GPs are helpless and i never got any hospital specialist follow up.

But eventually I persuaded a GP to refer me to the CFS/ME service and I see them on 11 September. I dont know if the diagnosis, if i get it, will actually help anything really, its feels like just a box to be put into but we shall see....

What specialist have you seen, were any any use or know much about meningitis?

kf18504 profile image
kf18504 in reply to Starry

Wow! Thank you. Yes it sounds like a lot of the same issues I have! I am praying that my GP will remain as open minded as he is now to find the answer. I do not know what the treatments will be and refuse to take steroids, but I will try to stay positive.

Good Luck with the CFS/ME service, I'll look into that myself. Hopefully they can find a solution that will help you! I would be interested in hearing about it.

Starry profile image
Starry in reply to kf18504

Thanks, i will try to remember to post after but do ask as my memory is dodge!

Most areas do have an equivalent scheme they are listed here.

HI, just would like to respond regarding your anemia and IV iron infusions. I too had that situation for years, and finally someone had me do a celiac panel lab test and I learned that I had celiac disease (autoimmune response to gluten). If you have not had this test done, ask for it! It's a life changer if you have celiac - just eliminating gluten from my diet resolved the anemia and helped with some other symptoms.

kf18504 profile image
kf18504 in reply to Dpark

I will have them run that when I go in for my panels. I try not to buy processed foods if I can help it, I prefer gluten free but unfortunately there are many things that I am sure I buy without thinking, that have gluten. I do not eat much bread but I do buy organic seed breads when I do. I will check to see if that is gluten free, I know my tortilla's are not gluten free, just whole wheat, so I will start buying the ones without. Thank you!!!

Hi I know post viral fatigue is a real thing and common after serious viral illnesses. It’s not the same thing as cfs which is profound and long term as well but slightly different. I’ve had post viral fatigue twice and it appeared like cfs but with practice you can build up exercise duration. I think that’s not the case with cfs. Both cases of post viral fatigue took years to recover, three solid years when I was in twenties post glandular fever. Now six solid years recovery post viral meningitis. At moment I’m still recovering and reckon it’s a solid ten yeaR recovery time. So it felt like cfs but it wasn’t for me. I know as exercise canvery gradually build up duration and stamina. And it doesn’t waste you, as U can exercise and recover ok. Takes so long though to build up, so you have to persevere and learn when to hold back.

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