Has anyone been diagnosed with Chronic Fati... - Meningitis Now

Meningitis Now

6,757 members2,104 posts

Has anyone been diagnosed with Chronic Fatigue Syndrome after Bacterial Meningitis?

Liz-D profile image
11 Replies

It's now just over two years since my brush with Bacterial Meningitis and after a lot of toing and froing to my GP, I have been told I possibly have Chronic Fatigue Syndrome. I'm waiting for an appointment with a clinic that deals with this. I'm just a bit worried about what the future holds for me as I have a Disabled Husband and Elderly Mother to care for. If anyone is able to shed some light, I will appreciate it.

Written by
Liz-D profile image
Liz-D
To view profiles and participate in discussions please or .
Read more about...
11 Replies
daffodil profile image
daffodil

Sorry to hear you have a double trouble.I also have M.E/CFS but had it 5 years before I got Bacterial Meningitis.It is the reason I got Meningitis as immune system was so low.I have heard of a lot of people who get CFS after but it could well just be the after effects of the Meningitis which produce symptoms exactly the same.It can sadly be a very long slow journey back to health and many are left with permanent after effects.11YRS on with ME and 5yrs post Meningitis I do not really know what illness is causing the symptoms and actually I think having ME before has hampered my treatment as everything is blamed on it.We have no ME specialist here,so my M,E has been largely ignored by NHS and Ive spent vast amounts on alternative treatments.All I know is that Meningitis caused a very severe replase in ME symptoms.

It is so good you have found this site as we are all here to help you.There are lots you can share your worries with,so you do not need to feel alone.

If you do have ME/cfs YOU MUST REST.If you feel unable to do something,need to sleep lots listen to your body.Most of my health problems now have been caused by wrong advice by doctors who told me I could not possibly sleep 20 hrs a day and made me do graded exercise which landed me bedbound for 7 months.

I had young kids and a very unsupportive husband when I was first ill,so I understand your worrie re your husband and mum.But please try if you can to gather outside support -carer,homehelp,friends.I dont know your home circumstances but maybe you could get a home help,help from occupational therapy?It is good if you have a special ME clinic near you as they will do lots to support you.

Action for ME is a wonderful source of information and support and like the Meningitis Trust has a helpline.

If you would like to email privately,you can click on my username and email privately.

Take care and try not to worry about the future,though that is easier said than done.

Jeffery profile image
Jeffery

Hi Pommie, Hello, I was diagnosed with CFS before I contracted Bacterial Meningitis. I rest when I'm tired, which is not always convenient but it is what it is. I am not very active and have good days and bad. When I am tired that is it. There is no pushing on, I must rest. my accomplishments are small in comparison to what I was able to do before but I cannot look back. I stay in the present. God Bless! Jeffery

daffodil profile image
daffodil in reply to Jeffery

Hi Jeffrey,

Another fellow Meningitis/Cfs person!You are absolutely right that we have to rest.With ME/cfs there is no way you can push through the fatigueand I reckon this is the same after Meningitis,though I have no way of telling which is casuing my symptons,but my body is telling me it needs to rest.

So right -you cant look back.You sound a really positive person.

Jeffery profile image
Jeffery in reply to daffodil

Yes Daffodil, I have a very strong faith in God and I am really trying to grow old gracefully, surrendering the ways of youth. This gives me peace. I rejoice in my small ways like the little flower and go joyfully on my way. I don't need to accomplish a lot to feel useful and I don't need others approval in this world. God gives me strength to endure my crosses and still enjoy life. The graces He gives me sustain me. These include a very loving family, community and a beautiful love for nature to name just a few. Stay Strong, Jeffery

daffodil profile image
daffodil in reply to Jeffery

My life view also -my faith ,familyand friends sustain me.Thanks for your words.

Covenham profile image
Covenham

Hi Pommie

I had a severe case of Viral Meningio-Encephalitis in Aug 2011 - so, 18 months ago now. I am currently undergoing tets to see if I have some form of CFS or ME, as I cannot shift this awful tiredness/exhaustion.

The Mengio-Encephalitis (two weeks isolation in hospital) totally zapped my immune system and since then I've had Chronic Bronchitis; a Bronchoscopy (hospitalised for seven days of IV treatment); been diagnosed with Bronchiectasis, had Acute Pneumonia (back in hospital for another week) and a severe upper respiatory infection just 5 months ago!!! And no, I don't smoke.

These illnesses alone have knocked me back so much that I don't recognise myself these days. I honestly believe that Meningitis is (in some way) responsible for my breakdown of health.

So, to get back to your post . . . . we have to take each day as it comes and pray that we'll find a new way. It is hard to see a way forward especially, if you're a carer too (I have an elderly mother of 98 yrs and a partially-disabled youngest sister aged 58 yrs). Remember: the carers need caring for too - we often forget about ourselves when caring for others. Do you get any help caring for your husband and mother?

Maybe you could call the Meningitis Research Foundation or the Meningitis Trust and speak to one of the nurses - sometimes just talking to someone can lift one's spirit . . . ?

And try to 'listen to your body' and take rest times as/when you need them. You aren't alone here Pommie, this site offers friendship, love, and a good ear :) Best wishes.

rosiefacey profile image
rosiefacey

I also have been diagnosed with m.e/cfs after bacterial meningitis. You're not alone. :-)

Dene profile image
Dene

Hi my wife has this talk about sleep sleep etc the tiredness is unbelievable as the Doc put it her Brain has had a sever bashing and all it wants to do is sleep.2 yrs on

she can fall a sleep at any time anything she is holding like a cup of tea goes to the floor

Liz-D profile image
Liz-D

Thanks everyone for the replies and the positive words. I'm still waiting for the definitive diagnosis but from what I have been told, its CFS?ME. Covenham, I'm not able to make any arrangements regarding Mum and Hubby as the authorites need proof. I carry on and do what I can, getting the kids to help when they can. And I Rest!! I think I could sleep for England some days.

All in all I appreciate the very kind comments from you all. Thank you all once again.

Liz-D profile image
Liz-D

An update on my ongoing battle. I definitely have M.E, confirmed by the Doctor who looked after me while I was hospitalised with Meningitis. Things have changed immensely for me since that diagnosis. I still look after my Mother but have managed to get her moved from an upstairs Flat to a Warden supported Bungalow. A lot less stress on my part although she is still a bit demanding when things aren't quite right to her. The tables have turned a bit at home too. My Hubby looks after me more than I do him at times as there has been another development with my health. After a serious Viral attack in June last year led to me being hospitalised again, I have marked weakness on my left side and constant pins, needles and pain in my hands and feet. While I was in hospital I had my fourth Lumbar Puncture, thankfully it showed no return of the meningitis. Unfortunately, it is now thought I'm starting with M.S, so more tests and procedures for me. I have to ask, has anyone else gone on to have other debilitating conditions after contracting Meningitis? Either Bacterial or Viral?

DebDog profile image
DebDog

I think it goes along with the BM. If we don’t get enough rest and by that I mean MORE REST than PRE-BM we are sapped with everything else!

You may also like...

Recovery after bacterial viral meningitis

shingles which caused my meningitis, initially told it was viral meningitis but because the...

One year after Bacterial Meningitis

month after a terrible experience of bacterial Meningitis. I have had every nasty experiences...

Chronic bacterial meningitis

Hi there I'm 30 years old 29 when I had bacterial meningitis. I was in hospital from 13th may for...

Has anyone else had recurrent bacterial meningitis?

Hi, I have just recovered from my 4th bout of bacterial meningitis over the past 15 years. I had...

My sister has a bacterial meningitis. Help please

patriots. My sister was diagnosed with Bacterial Meningitis 2 days ago. She is 31 years, currently...