After effects of Meningitis.& Septicimia.

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I had meningitis 19 years ago and have ongoing problems which are getting me down and wondered if there is anyone else out there who has had similar problems and can offer me any advice.

Since having the disease I have always had joint problems that are getting worse as I get older. I was 21 when I was ill and am 40 now. The septicimia gathered in pockets on various joints and I had to have my knee joints drained twice due to a build up of fluid. I also had to have lots of physio to get in particular my knees, elbows and wrist joints to work at all.

I have pain in my knees every day and as I am getting older I have a growing amount of lowerback pain and worse than that my fingers are def causing me problems with not being able to do things such as use the potato peeler, clean the hob, clean workops etc without alot of pain in my fingers. Plus every day I have pain in my right foot when I wake up and this somedays lasts along time, other days is no problem at all once I have got up and started moving about. My hands and feet are cold nearly all the time which adds to the pain.

Plus I have noticed recently that I am struggling to learn and I wonder if this is normal for my age or if I have some form of damage to parts of my brain that I need to use to learn. I started a college course to learn Sage accounts and I just couldn't get it to "go in", I have had a few other times recently when I have tried so hard to get a grasp of something and it just won't go in and I can't keep the info in despite it being explained to me a few times. I realise lots of people are like this anyway but it isn't how I was and I have just recently noticed how much this happens. My Husband gets frustrated with me I know but I really can't help it.

I am increasingly getting frustrated that despite looking healthy I have restrictions, I want to work to be able to contribute to the families finances especially now my children are older but I just don't know what I could do, and who would give me a job anyway. My Husband has his own business and he has said he would like me to set up an online shop for him but I desperatly want to but I just know I will struggle to do so and this will get me even more frustrated.

Is there anyine out there who can relate to me or offer any words of wisdom. Thanks.

I can sort-of relate to your problem through my ds. Although only a teen, he was badly affected neurologically through a progressive neurological deterioration. Most drs didn't want to know, kept telling me that it was irreversible and progressive on many occasions. Still, we managed to find one neuro who is gluten expert and through gluten-free diet we not only reversed some damage but also improved his skills. But he still remains in that mode you describe, things just bounce off him rather than go in. It's as it there is a barrier/overflow that he can't overcome.
However, as I have researched more and more on gluten front, it's not just just gluten that was a problem, it was very poor nutritional status (gluten caused malabsorption). We had his hair sample tested and some interesting info came out.
One of the things that came out was a wrong proportion of Zn/Cu (too much Cu is slightly toxic to the body), we started adding Zn/B supplements as they are meant to improve mental flexibility. Most recent school test show yet another improvement, which is quite brill.
Whist there are no doubt techniques to improve memory etc, there are also nutrients/vits/minerals that could probably help.
You could try asking a symathetic dr for a test on vits/minerals, such as B vits, Zn, Cu, vit D3 (awesome), omegas plus others. Our hair test (private, but not that expensive) also showed up mercury and some others not-so-welcome problems and we are working through a gentle detox, through fine-tuning to the specific deficiencies rather than one-size-fits-all. Multivits in my ds case were not right.
I can imagine that a harsh treatment for septicaemia probably damaged some of your tiniest capillaries - this is not that dissimilar to my ds neuro problems, wheich were described as uncontrolled destruction of neuro cells.
But having seen a dramatic change just through tweaking his diet and adding supplements I would say give nutrition a go. And this can be easily done via tests and a sympathetic dr.

Thank you Nightcat there certainly is some food for thought there. I will do some investigating. Any other suggestions anyone.

So sorry to hear what you are going through. I can only relate as a mum of a DD who had meningitis last year (still worrying if she will have any long term effects) & I don't have any real words of wisdom, but just wondering if you've contacted any of the meningitis support agencies? I remember from reading the leaflets when our DD was in hospital with meningitis that they do a lot of aftercare - maybe the Meningitis Trust counselling service would be a good starting point? They will have tons of experience in long term after effects & may be worth a call.

Really hope you'll find some support to help you cope with this

Thankyou oricella for the advice. I will contact them.

I send my best wishes to your Daughter. Many people seem to have many different after effects and some have none. It is a most strange disease certainly.

I think I sometimes struggle because I have seen the devastating effect meningitis has had on some people and mine is trivial compared to others and so it seems I should be very grateful (which I am) but is is still causing me problems so I do need to seek some support from somewhere I guess.

Hi,
so sorry to hear you are going through this.

I wondered reading your posts whether you already receive DLA? You can get this alongside having a job, if you want to - but it would certainly help with finances.

It strikes me that your reasons for not working at the mo are genuine and reasonable, and with the help of your doctor you should qualify for one of the rates of DLA.

Sorry if you already know all this. I wish I could help with the other aspects.

Thanks buttons - my little DD is doing really,really well & we are hopeful that there won't be any knock on effects. She's only 14 months - so it has been hard to tell if things are not right as everything is still developing at this age. So far, so good though..

I think you would do well to find some support; I am sure that the professionals out there will not compare you to others or trivialise your concerns. No need to be grateful & put up with things because you are only a little restricted and others are worse of - you sound like you are struggling and you deserve all the help you can get. Have you talked to your GP about this? That may be another good point to start - and he/she may also refer you to counselling / or support a DLA application as FA suggested.

Thank you flightattendant and oricella.

I have made an appt with my GP and am going to ask her for advice on the various things worrying me at the moment. Maybe she will have some ideas that I could try or suggestions of how to cope better with things. She has always said it was a case of things would come up as I got older and we would have to address each problem as it does, so I guess I have to admit to her my current situation and get her advice. Its not always easy asking for help though is it?!

I have wondered about DLA but as my condition isn't the same everyday, some good, some really bad and some in the middle, I thought it wouldn't be worth claiming.

Buttons, it really doesn't matter if it is variable...many conditions are like that.

Your council should have a social services department and these usually have a benefits officer, who is able to be your advocate if your GP or someone refers you...I had one when I was appealing an income support decision (regarding illness) and she was great, and told me I ought to be on DLA...she sorted out the whole process for me and was just brilliant.

Ours is based in the county council SS dept, so if you contact the switchboard and ask for the right department hopefully they can help you speak to someone.

Otherwise your doctor should be able to help you claim, and if you look up DLA there is a government helpline that will send you out a claim form etc. But I would definitely recommend getting an advocate as it's a tricky process and a long form to fill in.

Post back if you have any probs - where roughly are you, maybe I can google the right person to help?

Here is a good site, they should be able to find you a benefits officer in your area and tell you how to go about it all.

It feels weird claiming benefits for something like this, I know - my problem is mental health, I always feel like a fraud and quite embarrassed about the whole thing, but it's important to recognise how your health impacts on your life and access the right help - it's out there, waiting.

so sorry you are having such a bad time with the after effects. FWIW the learning thing probably isn't related is it?? I think any brain damage would have happened and shown up then and there, are you sure this isn't just the natural way people are better at some things and not so good at others.
I had meningitis and speticemia 12 years ago and it left me with some hearing loss. ikwym about feeling guilty, after a hell oif a lot of self pity I found out that someone I was at 6th form with had it the same time and died Add on a load of guilt