How long???

[Fruitybubble]

Hey, I contracted meningitis W in early January, was in hospital for 4 weeks, now I'm at home I feel that I've been forgotten by the doctors, I'm unsure how it goes but I thought I'd at least have a follow up appointment? I've been left with legs that don't work properly, dizziness, headaches and forgetfulness, my feet are so sore I can't sleep, I'm in a constant panic about getting ill again which has made me isolate myself. I've seen my gp who has been somewhat helpful with my pain but no physical therapy, I just really want to walk without the crutch! Does anyone know how long this will last.

Thanks

C

[dianek4]

Hi Fruitybubble I the same as you contracted Meningitis in January and was in intensive care a week and then hospital 2 and a half weeks. I still feel awful and have most of what you say apart from the sore feet, I also get the most terrible daily headaches. I had physio at home for 3 days after and then they said there is no more they can do and just left me a daily exercise sheet. My GP though has been really good and unfortunately from what he has said there is no answer as to when we will be any better, if we ever get fully better again, as they just cannot tell, with each person the recovery is varied and some people can be back to normal quickly, others it can take a while and some never fully recover. I really think you need to see your GP and tell them how you are feeling and that you feel like nothing has been explained to you.I hope you start to feel a bit better soon you are not alone and I really do know the pain and stress you are going through but hang in there. there are organisations like Meningitis trust who can help just google them and maybe someone there can talk you through things better. Take care.

[Emilymads]

Hi my daughter is the same as you and it must be horrible.We too were left with no follow up until we kept on to the dr and the hospital to say we were not happy seeing Emily with such side effects.

Almost 3 years on and she still has days where her joints all ache her headache can cause a black out and she is awake at all hrs of the night.

[Packard]

Fruitybubble; the unknown is always the worst thing about meningitis. The most important thing you can do is do your own followup. See your Doctor, communicate with your Doctor and take charge of the situation yourself. I have been fighting after effects for about 15 years. Make the Doctor answer questions or find one that will. It took me 5 years before I found a good Doctor. Bless You and Yours.

[Helpman]

Hi you have to take it easy for at least 8 week no stairs no lifting walks on flat ground listen to your body if it hurts stop. I had vm two years in a row good luck helpman

[ignoreit]

I also had zero followup. Basically there's nothing the doctors can do for you. My worse after-effect was painful feet. ("Painfull" is an understatement.) I couldn't stand the pain of ANY shoes for 9 months...and I wore white large socks while recovering at home. (The doctor said "no dyes.") Then I could tolerate very wide men's open-toed sandals for 10 YEARS. 10 years later I could tolerate a closed toe soft ballet slipper. Now, 41 years later I have a closed toe flat shoe that I wear everyday. It's 2 sizes too large and has a small strap that holds the shoe on. My foot pain has continued to dissipate a little every single year...and I take zero medicine. (I've tried many pain prescriptions and nothing helped the pain.)

I've learned to live with the pain. And I've taken dance lessons for 15 years. Dance works because the dance sequences concentration helps to overtake my foot pain.

Time was my best healer.

[Lynnemum]

Hi Fruitybubble, so sorry to hear that you are not recovering as well as you feel you should. My son Gary has had excellent treatment,but he is very impatient, has had 2 set backs trying to rush to get fit. In our circumstance, Gary had BM then got pneumonia, the thing is everyone is different,but the healing process for everyone is a long road, the more you try an rush it will just set you back, eat a good diet,do exercise that you are comfortable with, you will have good an bad days, read the people's stories on here, some say 18mths others 2 to 3 years,most importantly keep talking, do not bottle things up, remember you survived this, and you will get better in time, always here to chat, take care. Xx

[Chavaune]

Hi Fruitybubble, I contracted meningitis and septicaemia ably the end of January. ICU for 5 days hospital for a month, a care home for another month and now I am back home. Thank god I have a good gp. As for my pain situation it is sometimes so bad. I can barely stand long enough to brush my teeth. My nerves got badly damaged to along with my blood vessels. I don’t have answers from e you or for myself but I can be here for u if u would like to talk. I know how hard it is. My name is Chavaune Brown and feel free to add me on fb. My webpage is chavaune.wordpress.com and u can check out my story if u want 🙂

[MynameisMira]

Hi... I don't really know if I have meningitis but, in august 2017, I suddenly felt severe neck, upset stomach, severe headaches with a fever, calves pain and of course with a really bad dizziness and not being able to stand still. Went to the hospital and they said I'm dehydrated, need to drink lots of fluids and I will get better and they let me out. I remember I was feeling awful, I was sure it was not only related to dehydration but that's what doctor said. It took me lots of time to recover, which caused anxiety and panic symptoms afterwords.

Today, after monthes, I'm having the same feelings again. After reading on the internet, I found meningetis which is something new for me. But I can tell that my symptoms are pretty close to this infection. Stiff neck, bad headaches, fever, upset tummy, dizziness and leg pain but no rash. I'm going to do blood test and neck x-ray today. Can this help me to find out if I have meningitis???

[sdjohnson231]

Please go back to your GP and demand that you be referred to a physical therapist. I didn't see one for about 15 months after my bout with bacterial meningitis. What a tremendous difference she made! I regained my sense of balance! I stopped tripping and falling so much. Don't wait 15 months! Go now! Best wishes. Susan J.

[Lippistix]

Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.

We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.

It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.

We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.

If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.

Kind wishes and best of luck