Daughter had bacterial meningitis. - Meningitis Now

Meningitis Now

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Daughter had bacterial meningitis.

Jimmeade profile image
21 Replies

My daughter aged 35 has recently had bacterial meningitis,she was in hospital for some time but is now home with us,her parents.She has some brain damage causing memory problems.She also suffers from a very painful lower back and hip.Is this a normal after effect of what she has suffered? Any help and advice would be appreciated.

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Jimmeade profile image
Jimmeade
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21 Replies
elden profile image
elden

Pain in the back/hips could be caused by being cooped up in a hospital bed, but brain damage can sometimes cause pain even in the absence of injury. If you don't have a follow up appointment with a neurologist already, I would push to get one as soon as possible. I hope she has a good recovery! It can take weeks or months to see large steps in recovery, but rest assured the brain is a remarkable organ that is capable of healing and rewiring when necessary! Your daughter is lucky to have supportive people like you helping her get better.

Jimmeade profile image
Jimmeade in reply to elden

Thank you so much for your reply,it is much appreciated.

buddyart87 profile image
buddyart87

Yup agreed with the previous comment. Back pain and hips is most likely related to being in bed recovering for so long. I had much the same, and it eventually went away for me as I became more mobile.

In terms of the memory problems/brain damage, I to had that, and I could feel how "slow" I was to respond, memorise and talk. The most frustrating thing about it was that I was aware of it. This all eventually went away for me about 4 months in when I woke up one morning and could think "clear again", it was indeed a eureka moment. Good rest and good diet, it is amazing what the human body can do to repair itself.

Good luck in her recovery.

kirsty40 profile image
kirsty40

Hi! Sorry to hear about your daughter. I contracted bacterial meningitis about 2 and a half years ago. I still struggle with memory problems - but I am working full time now!

Everyone is different in terms of their recovery period. Rest is important and good food! It is important to eat fish at least twice a week as it helps to repair the brain. I hope your daughter is ok and her recovery goes well.

I assume your daughter had a lumber puncture? That area can hurt for a while after having that procedure done.

Jimmeade profile image
Jimmeade in reply to kirsty40

Yes,lumber puncture was done,that could have something to do with it,we do hope she gets better mentally,it is strange,she seems to have bother putting sentances together,also used to be a brill cook and now boiling an egg is hard! She is eating well.Thank you for your reply.

kirsty40 profile image
kirsty40

Yes one day at a time. It took me a long time to recover. I had to learn to walk again and I am sure have lost some of my memory. But it sounds like she has a supportive family. Where are you based? As depending on where you are yhrrr are some good supportive organizations that could help you.

kirsty40 profile image
kirsty40

Sorry there was a typo in my reply!

Jimmeade profile image
Jimmeade in reply to kirsty40

We are based in Suffolk and are getting help from the mental health team,all going in the right direction! Typos are ok! I hype my toping imprives!

1113Angela profile image
1113Angela

Hi..happy to know she is home with family.And as for your question.pain is part of my everyday life yes lower back an hip joints..headpain also..i hope the damage done her brain is minimal.And to the person who mentioned phantom pain...i assure you this is not the case.nerve damage an or nerve pain is very high.somedays better then others.And yes staying limber and moving as painful as it is...i know...it will help

honeybeesweety profile image
honeybeesweety in reply to 1113Angela

I too suffer with headaches and low back pain daily and as of the last few months the hip pain has increased to daily. I guess a good question to ask is, was her meningitis cerebral or spinal or both? I had both so I would expect to have pain anywhere, as it does nerve damage to anywhere. Of course that's just based on what I've read and studied and I also have "psudoseizures", I've never seen a neurologist as I had meningitis at 10 1/2 months old and for whatever reason when seizures developed at 17 years old I slipped passed the neurologist and was diagnosed with a psychological problem instead based off my being conscious rather than unconscious for the seizures....now 14 years later I'm looking for a good neurologist to go to as I was informed I may have been misdiagnosed and should get the proper tests. I know stress makes my symptoms worse. 3 days of no sleep will send me into a mess of seizures, vomiting, headache, bulging head, aches and pains everywhere. Sugar is bad, caffeine, chocolate, imitation sweeteners, gluten, lactose, etc. And the brain fog gets bad, along with racing thoughts, anxiety, depression and ..........sorry I took to long to type it, I lost it.... ... oh, I do work in the medical field and I am a student, and My parents were originally told don't expect me to live, and if I did I would most likely be mentally retarded, and or blind, deaf, dumb....and I'm almost finished with my bachelors degree, so she can get much better, just takes time and will power and blessings from Heavenly Father. She may always have problems, but she can over come a lot too. Sadly many people don't know what meningitis is or understand it, so she may get some critics out there that say it's "all in her head, she's fine, she just has psychological problems etc" don't listen to them, they are the uninformed, who can be real jerks at times. Keep your head up, keep praying and look to God for help and direction. :)

Packard profile image
Packard

There are many post meningitis problems. Some last a few days and some seem to last. Truly the only advice I can give you is to be patient and always inform her doctor of any changes or new symptoms. I will pray for you both.

Sheridan71 profile image
Sheridan71

I have started taking CBD oil And turmeric for my pain and joints it is helping x

RHB2016 profile image
RHB2016

It's been two years since I had meningoencephalitis. Which is meningitis and encephlitis. I was in the hospital 62 days. I was 65 when I got sick. I am still recovering, small steps. And I have pain in lower back and hip. Memory problems are the worst. I started having miagrain headaches last August. Hopefully since she is so much younger she will recover sooner. God Bless Yall

sdjohnson231 profile image
sdjohnson231

It may be wise to consult a physical or occupational therapist. I had one come to my home when I first got out of the hospital because I was having horrible balance problems. They could advise on the pain, where it is occurring on her body, and perhaps prescribe gentle exercises to help get her strength back, and perhaps get to the issue of what exactly is causing the pain. Good luck to your daughter. She is fortunate to have you to help her through this! - Susan

I had meningitis & sepsis last August age 35. 6 months later I still have pain in my head. I have other health issues that cause fatigue, pain & memory loss so I can’t comment on that too much but my symptoms from those issues have been much worse so it’s definitely possible. I’d speak to the GP. Meningitis is a major illness & will take time to fully recover from. Being in hospital a long time also deconditions your body so weak muscles could be the cause of her back & hip pain.

Ace_survivor profile image
Ace_survivor

I’m 33 and recently had it too. I had to learn to walk again, I have constant severe daily headaches, also really bad memory problems, when I’m trying to talk I forget certain words and it’s really noticeable with people around me, it’s getting me down. I used to run my own business and play rugby and 6 months later I’m unable to return to ether, but don’t give up, it takes a long time to recover and everyone is different. You will get there. Any advice on medication I’ve been trial and error on you’re welcome to ask xx

MinkyD profile image
MinkyD

Hello,

My daughter had Bacterial Meningitis and sepsis 16months ago when she was 22. She's slowly getting better but still has bad back pain, neck pain and occasional leg pain and weakness in her left leg. She also has some vision loss in her left eye and does suffer from poor memory and getting her words out when talking.

She is able now to work 3 days a week and walking for longer distances is easier and she gets less fatigued.

Recovery does take along time and varies for everyone. Your daughter will need to listen to her body and not try to do too much too quickly, but also she should attempt to do somethings.

Meningitis Now is an excellent charity in the UK (is that where you are based?) who offer help over the phone and online.

I wish your daughter well in her recovery and as a parent of a sufferer I understand your worries and concerns.

Jimmeade profile image
Jimmeade

Thank you everybody,it is good not to feel alone in this.We are very hopeful that a complete recovery is possible.Thank you all once again

Tarajason123 profile image
Tarajason123

Hi I had BM last August, I spent 3 weeks in hospital and 3 weeks hospital at home care, my memory is terrible and often find getting words out difficult, it does slowly improve with time, I have suffered with severe headaches ever since and also lots of lower back pain, just last week I went for cranial therapy with an experienced osteopath, after one session i have felt massive improvements, the osteopath believes I have a blockage of the csf fluid, so it’s built up in the lower back and then around the brain but none in the spine(whilst in hospital I had 16 unscucvessful lumbar punctures). I spent 3 months being skeptical about the cranial osteopathy and now after only one session (more booked) I am kicking myself as to why I didn’t do this sooner, if u choose the right osteopath they have far more knowledge and understanding on how the brain and nerves work after meningitis than any dr at the hospital. One session has changed my life already, I really hope your daughter improves, I’m 30 myself so totally understand how this horrible illness turns your world upside down. Good luck x

Riba01 profile image
Riba01

Hi, My son is back home with us recovering from varicella meningo encephalitis. He has had to withdraw from university this year. In fact he has previously had meningococcal meningitis 3 years ago at the age of 18 and made a slow but complete recovery before. This time he suffered from severe back pain mostly at the site of lumbar puncture for around 6 weeks. He only has occasional twinges now. It didn't seem to respond to painkillers but has definitely improved as he has been walking more. He also has some memory problems this time and some trouble with speech- mixing up words and idioms. This is also improving weekly and as we are seeing an improvement we are all more relaxed about it and even seeing the funny side of some of it. Having gone through both illnesses with him I have found it very different being the parent of an adult patient. It sounds as if we are in a similar position to you maybe a few weeks further on. Things are definitely getting better and as he improves we are less and less traumatised. I hope that your daughters back pain is improving and send you all my best wishes.

DebDog profile image
DebDog

I initially had some memory issues but now it just takes me awhile to get my ideas out so I can say them. I sometimes know what things are but call them other things. I already had lower back & hip pain before the Meningitis so I haven’t had any more than usual. One thing I have learned is our whole bodies seem to be affected & honestly I feel the Meningitis messes up everything. Memory issues improve over time but if I’m tired I have problems. I have learned the hard way that REST IS BEST Our brains need rest to improve. Our brains control so much. If your daughter can walk around more then maybe the pain in legs & hips will improve. I would contact a Neurologist soon though if it persists. Various side effects happen but some people seem to not have lasting affects. I pray your daughter will be that fortunate. Possibly all her issues are temporary.🙏

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