How is anyones post viral meningitis exerci... - Meningitis Now

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How is anyones post viral meningitis exercise program going?

rowenafly profile image
22 Replies

Hello all, I am one year post viral meningitis diagnosis this month. I am not at work as I have had central sensitization of my central nervous system which gave me an over reaction to pain. So, I went back to work after three months and was pretty fatigued, then got whiplash and had corti steroids for about four weeks to calm inflammation down. It worked but made the depression worse. However, the specialist set me a cardio exercise program to do. Started really slow, now been doing it for ten weeks and do now 6 days a week 55 minutes of cardio exercise at the gym. Go every day a week but one and am now starting interval training on bike and treadmill. Its going pretty well but as I increase the intensity I get some pretty extreme fatigue after. Makes me really vague and spaced out. Can get a bit anxious when this tired too. Does anyone get brain fatigue after exercising? I am building endurance to be able to get through full days of work when return. Just wondering how the rest of you are exercising. On my exercise days I need about ten hours of sleep and I wake up really bad tempered but it wears off. I suspect the depression is worse in the mornings and I have read this is a pattern of depression as well. But, the exercise is the key method for controlling the depression and its working. I have to keep doing it, in fact I really like it but the after fatigue has some crippling moments. Sometimes I get to the point where I cant function, brain not working, really heavy in the limbs and have to lie down. This happens about twice a week or more. Usually after the exercise I can become like this and sometimes recovery is two to three days. Does anyone else experience this type of thing?

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22 Replies
Becks78 profile image
Becks78

Wow well done on the exercise. I'm 8 months post VM and walking half a mile wipes me out. I feel desperate to do some sort of exercise but I worry about how I will feel after. No one is able to tell me anything. Were you told you should push yourself? What and how much do you do? I'm sorry I can't offer any advice on how you are feeling after but I think you should be really proud of yourself for being able to do it.

rowenafly profile image
rowenafly in reply to Becks78

Dear Becks, noone said push yourself to me relating to exercise, the sports physician simply said do as much as you can do and monitor it. I hope that helps. For me, that means I do exercise and then see how I pull up. Im at the three month non stop exercise mark and I still see how I pull up. So, it means, start real small and dont increase until you can function afterwards. That meant I started on 10 min stationary bike riding. Following week was 12 minutes. And so on. Somedays I had headaches and fatigue and I took 1-2 days off till better. I was so tired without it that I realised I was tired with the exercise, but no more than before! And, often have more energy and more strength so I keep on going. Can you find a sports physician and ask them to set you a program and monitor it? I do have to take rest days as I can get so tired from it, but overall I am much stronger, so its working. I dont worry about getting tired from it, its meant to make you tired. I only worry if I cannot recover, which means its too much and I drop it back. The minimum is 30 minutes now and the max is an hour. So, I think, just do some, try not to worry about how tired you feel after. You are tired anyway, and your heart will do good for some mild increased heart rate. I am treating my exercise program as rehab, so if thats all I can do then thats fine. I have not regretted starting it at all, and even if you only do 5 minutes a day for first week then thats great. Get someone to monitor you. I reckon try not to worry about chronic fatigue syndrome. I reckon if I have not got it by now i wont get it. You may well be the same. Just remember, smooth even type of exercise, stay in a gym if necc. I have not been out of the gym on the road or anything yet. Regards Rowena

in reply to rowenafly

Thanks for your encouraging words! Susan R.

Jeffery profile image
Jeffery

Hello Rowanafly, I am 21/2 years post bacterial meningitis and am not capable of doing much exercise. My rheumatologist told me to build up slowly starting with one minute a day for a week, then add a minute for a week and so forth. I do what I can when I can but the fatigue/neuropathy/imbalance/depression is crippling me. If you are able to do the exercising with some consistancy I would be very proud of yourself. Kind regards, Jeffery

rowenafly profile image
rowenafly in reply to Jeffery

Dear Jeffery, wow bacterial is a bastard isnt it. I think its great you are doing what you can do. It wont hurt you if you monitor yourself. All that oxygen going in, even if for 1 minute will help your heart and help your depression. Just a little bit at a time is the key. I hope and wish for you the best recovery and I sympathise with your symptoms. Maybe you could swim and play in warm pool, no balance problems then. And then lay on those pool noodles and float on your back and relax each day or so. That helped me a lot.

siobahn profile image
siobahn

Hi, I am 4 yrs post vm, I couldn't do much at all for 3 years as I would be completely knocked off for days if I tried any type of exercise.... At first Walking was a chore...... I now have a treadmill and if I do too much again my fatigue is extreme.... It's just a case if slowly but surely, don't push yourself too much.... Onwards & upwards though well done :) x

rowenafly profile image
rowenafly in reply to siobahn

Dear Siobahn, yes I get very tired if overcook it. But Iove it so much I have to try hard to contain myself. However, I have a set program now and I don't go over it so that helps. I am finding the sweating and general good feeling very addictive. At the moment I treat it like a job. I do it 6 days a week and if thats all I can do that day then good. Then go home and watch zombie apocalypse series and feel better about not being in the land of the zombies. Ha. It was one year ago I got it this week. Thanks for your nice reply,Rowena

menigitishead profile image
menigitishead

May 2010 now 3 1/2 years post Bacterial Meningitis. Did some small races/heavy lifting in 2011. September 2012 ran a tough mudder race. Had a hole in my sphenoid sinus, which allowed the bacteria to get in. Hole closed with scar tissue after Meningitis. came back in December 2012 along with a herniated brain. My fix.. a craniotomy in Feb. 2013. Finally after 3 years.. they tell me my aches and pains are not really hydrocephalus (which I do have as a result of the Meningitis). but I do have neuropathic pains. I use to blame it on my exercises. For me exercise is KEY to beating depression.. all the feel good hormones, endorphins. No longer running.. fig my brain needs a break.. but can bike and just completed my first 20 miles 8 mos after brain surgery. I go through phases of needing extra sleep.. since the Meningitis. However, Vit. B and D levels were low and now have gotten some prescripts for them. That has made a big difference. Since my surgery I have been limited to walking and light weights... Ugh can be so boring if your use to doing so much more.. Grateful just the same. My new discovery was just by chance... I enlisted the help of a cross fit instructor to show me a few cardio type moves that won't hurt my brain but provide me with some level of intervals without getting my heart rate to crazy. (My head hurts to bad if I go over 140 for very long and with water on the brain it can increase the pressure.) any way.. the instructor showed my how to properly do mobility stretching. Just after three days of 15 min. stretches and foam rolling I noticed a huge difference in my level of pain in those terrible neck/shoulder pains. What an improvement. so much that I'm not going to take the prescribed. meds my nuro offered me three weeks ago. (I'm so done with treating symptoms.. I want permeant fix's I can live with). I'm not affiliated with mobilitywod. com but Kelly starret is the master. You can pay for use of his sight... or go to youtube and type in Kelly starret mobility. You'll get a ton of really hard core stretching techniques. mind you these are painful stretches.. but that two min. of torture has given me 24 hours of almost no pain in my neck and shoulder.. I'm faithful to the 5 way shoulder mobility now and have been doing them for 3 weeks. Sleep can wait... do what you can Meningitis survivors, get off those couches, and out of those beds. I can say my biggest challenge is reinventing the novice athlete that I know is still in me. Eat clean, take your vitamins get the rest you need. Some Cross fit moves are now in my bag of tricks along with those wonderful stretches, highly recommend cross fit to any one.. My 13 yr and 10 yr old do it three times a week. whoop my girls are reaping the benefits of it. And yes.. we do need Extra Sleep some days are better than others. I work full time and boy that 3:00-4:00 time frame.. I'm almost begging for a nap! especially if I had an awesome workout at lunch time. Keep up the good work rownfly.. good for you for not letting this horrid infection take you down.

rowenafly profile image
rowenafly in reply to menigitishead

Dear Meningitis head, thanks for the nice reply. Good to know you are working and exercising, thats awesome! You are doing so well. 20 miles is such a long way!! I have done a lot more stretching since reading your reply. At the moment I am not working and so I treat my exercise program as my job. 6 days a week unless feel hideous and then I take 2 days out or so. 3 months now and only had a few weeks of 4 days a week. The meningitis induced depression is improving as I do it more. Hey can you swim? Can you use the pool to exercise? You could stay upright and do underwater running walking pilates etc? Might help your head so you dont lie down. Just sounds like you love exercise so it may be an option. I do it as well, but I am a surfer so I love the water. Oh yeah, the pilates in the pool wont make your heart rate go up high but will improve your muscles. I love the pilates water thing. I think your recovery sounds amazing, you had some heavy things go on. I want to wish you all the best in the good fight. I am very very determined not to let this stop my life. I hope you feel good and get better as you go. Rowena

menigitishead profile image
menigitishead in reply to rowenafly

Exercise continues to get me passed the menigitis/brain surgey induced depression. Since this post I finally am at least getting an MRI of my C-Spine along with my check up Head MRI. I also showed my thyroid levels to my family care dr. that my nuro took (he says I'm normal). She's say's "wow" you def. appear to be hypo.. would def. help to explain some the extreme fatigue I fight with and the inability to not loose this post menigitis weight. She's doing extensive blood levels to check T4 and T3 and other immune disorders. (I had at one time tested positive for lupus, than not, I've also has MS as a differential diagnoses on my brain scans.) My angst with my nuro is wondering how the hypothalmus gland is working since it's inside the blood barrier of the brain and Idunno.. couldnt it have been compromised by the infection?. He was not my original nuro and I don't think he thinks of my past history. His solution to any of my issues is of course.. the dreaded anit depressant pill along with weight loss. (mind you I'm not huge by any means. I wear a size 8-10). when this crap started I was a size 6 so weight did not cause me to have hydrocephalus, thus popping a hole in my head, thus allowing the bacteria to get into my brain. nor did it make my brain herniate....I'm sure he thinks i lie about what I eat and how I exercise. Anyway.. at least my family care doc. is helping to make sure my thyroid and all the other stuff is working properly or not. I do have a pool near by. hard to get in unless I go later in the evening or ODark early. I'm a terrible swimmer but I do think a water class would be very beneficial. I'll have to at least look at the class list and see if I can fit it in somewhere. I do have support from work, which when I'm really crappy feeling or have follow-up appt. will allow me to work from home, and that helps a lot. I can pass out for an hour and get back on-line when I'm good and rested. Don't know about you but I go through phases of being overly tired. By the way Stretching helps to release the feel good endorphins, glad to hear your doing some. I'm addicted. Don't forget foam rollers, they help with myofascial release. All the stickiness of the day. Staying mobil is our best defense by far but respecting the days we need that valuable rest. Best of luck to you.

becca823 profile image
becca823 in reply to menigitishead

are you still on this forum ? I noticed this post is a couple of years ago and wondering how you're doing ? I am 2 months into VM and being hospitalized for 5 days. I was appalled at the treatment and lack of awareness and discharge with no awareness or instructions nor knew that this was going to affect me for a long time. I am obsessed with learning of meningitis and like you feel exercise is key to depression. I am going to incorporate any knowledge I learn from this when I get my personal training certification. I would like to help people with brain injury through nutrition and exercise. I will also be getting involved with as much as I can with helping people with meningitis of all types and raising awareness as much as I can. I will with hopes within the next couple of months have up a website focusing on fitness and health but with different options and regimins as well as blogs and testimonies and stories from people with different illnesses. hope you are well ...any input would be greatly appreciated

Meningitis2011 profile image
Meningitis2011

I don't exercise hardly at all because of other physical problems I have. I'm starting physical therapy for my falling so much. My imbalance problems may be part of my post viral meningitis but not entirely because of it. I will find out when I go to my doctor on November 20. Hope she can help me with my sleeping problem too. I am lucky if I get 4 to 5 hours sleep a night. I am very tired during the day but am doing volunteer work and get very sleepy sometimes but I am unable to sleep.

rowenafly profile image
rowenafly in reply to Meningitis2011

Hi, thanks for the reply. Good on you for doing volunteer work, I do some too for the Red Cross. It helps me feel better. Are you allowed to go in the pool? I reckon thats the safest place to start exercising. No balance problems in there. Can you ask your dr what they think? A warm pool indoors perhaps. Even some light exercise might help your sleep problems. Oh yeah, I read that that a study was done on insomniacs. They took them camping for 8 days. No lights allowed. Sun down and you had no lights, most went to sleep, no laptops etc. Sun up they got up. All of them cured their insomnia as they had their circadian rythms reset. Its an interesting idea. I think for us VM people thought, it might take longer than a week. Worth a thought. Anyway, I dont want to suggest anything to you to do at all, as I know you know better. Just wanted to let you know that I started in the pool before anything else. I wish you recovery and all the best for your journey. Rowena

Meningitis2011 profile image
Meningitis2011 in reply to Meningitis2011

Yesterday was a really bad day for me. I could hardly put any weight on my left leg. Ended up going to OSS Urgent Care where they Xrayed both knees including my right one which had a total knee replacement 6 years ago. The replacement was still intact. When you have arthritis problems it can cause more problems in addition to having had VM. Also they told me that a lot of my balance problems were from my scoliosis which was diagnosed when I was 12 years old. I have to use a cane when I walk per instructions from the physical therapist. Also I had a real tough time going to sleep last night because of the pain in my left leg. That is better today but I got up with a sore throat and terrible headache. I haven't had any viruses for a while but because of our weather I guess I am due for one. Oh the joys of getting older ( am 77 years old). I was doing a little exercise after seeing the physical therapist but now because I'm sick I can't do anything. I am supposed to take physical therapy every Tuesday and Friday. I don't know if I will be able to go tomorrow. Thanks for your reply though.

rowenafly profile image
rowenafly in reply to Meningitis2011

Dear Meningitis2011, how are you going this week? Did you recover from your virus? Rowena

sparklybuster81 profile image
sparklybuster81

Hi

I'm no expert, but I'm 9 months post Viral Meningitis, so I can speak from experience and my personal opinion.

I have managed to embark on an pretty vigorous exercise regime post Meningits, which is going really well and which seemed like something impossible just a few months ago. However, I don't feel the extreme fatigue you describe after exercise, and if I did, I think I would reconsider. I think your body is giving you a very clear message that you're doing too much, and it's begging you to slow down. Please don't think I'm saying that you shouldn't do any exercise-clearly this is helping with your depression and that's a great thing! However, it really does sound as if you're pushing yourself too hard.

Please remember that this illness affects everyone very differently. You have to learn to listen to your body and respond to it, or you could do more damage. Pushing yourself too hard too soon could lead to other problems, such as Chronic Fatigue Syndrome.

I had to start very slowly and build up. At first just simple tasks were exhausting and I struggled even to look after my 2 young children. I then started walking, and even a little a day would wipe me out. But it did start to get easier. My advice would be to start small and be consistent with just doing that amount until you're completely comfortable with it, and it doesn't cause extreme fatigue. Only then consider small increases.

I hope that is some help to you. Please also remember to be kind to yourself-you've been through a very serious illness and your body needs time to recover.

Good luck with your continued recovery and your exercise programme x

rowenafly profile image
rowenafly in reply to sparklybuster81

Hi Sparkly, thanks for the kind reply. Yes I thought about what you said and asked my physio about recovery times. He made some good suggestions and so far its been really good. I have done more stretching and also walk up to my waist in the cold ocean and it takes the lactic acid out of the muscles so you recover faster. Footballers do it here all the time. In Winter, ha. Its cold too, like 11 degrees celsius. But now its Spring and is warmer. Yes, I worked out too that this rehab is my job for now, and if all I do is the exercise program each day, then thats all good. Actually I do more than this usually. But on the crap days I only do the gym. Im lucky in that I m paid not to work at the moment so I can dedicate myself to the program. I used to feel really tired from not doing much, and now I feel a better version of tired from the exercise. I appreciated your words as they reminded me of how to build it every so slowly. O yeah, this is unfortunate but I am waking up bad tempered every day, even without the program, so a significant thing is post meningitis I am really pissed off in the morning for some reason. Could be the endep at night giving a hangover too. Anyway, I try not to speak too much to my husband so I dont snarl. Ohhh isnt meningits fun?? How much can you exercise now if you dont mind me asking?

Best wishes and best recovery to you.

Rowena

siobahn profile image
siobahn

Lol I get that one!!! ;) my poor husband, 'the snarl' I luv it, in the early days it was unstoppable now the beast is contained, well for most part ;) yes vm will try and test us in every way possible, I am so glad I found this site as it has kept me focused knowing I was not alone as in the early days I was sure I was goin mad.. The knowledge/ advice is priceless...

Thanks to you all.

X

Vespalover profile image
Vespalover

Meningitushead.......wow.....Kelly Starrett stuff is brilliant! I am 52 yo. I was trained as a PE teacher. I played International level Hockey. I suffered VM 1 1/2 years ago and my fitness really suffered. Was looking for something non impact that did not raise my over 140 hr as it affects my VM and gives me a meningitus headache. His explaination of the back as a core to body movement is stuff that I knew but never formalised. His exercises are superb. Thank you Rowenafly for bring up this thread. Thank you for getting me exercising again! Ana

rowenafly profile image
rowenafly in reply to Vespalover

Dear Ana, thanks for the reply. i hope its going ok for you over there. I am pushing on with the program and about to start a gentle weights resistance as well as the cardio. I do get headaches from it if I load through the neck though. And started my swimming again, very small amount. I used to swim in ocean races for fun and I want to do it again...but it wont be till next Summer. How is your week going?

Rowena

Vespalover profile image
Vespalover

Dear rowenafly, it is Thanksgiving over here so a week of over eating. I am doing some stretches and cycling a wee bit around the town which I enjoy. Trouble is I am split between two homes and doing a constant exercise program is tough. In a few weeks things may settle down. In Jan and Feb I am going to have at it....then I come to UK for 3 months and it will all probably go out the window! Swimming is one of the best exercise....non weight bearing etc. but it is the most difficult to do in terms of travel and finding a pool. I have found cycling is the next best thing and hope to increase my stamina through that. Take care Rowena....keep us posted how you do!

I used to be very active and now I just don’t know when to push or when to rest.

I have headaches every day and I also get a shooting pain headache most times when I cough, sneeze, bend down, tilt my head back, reach for something, stand up from sitting, or sometimes even just laugh.

When I have energy I can run and that does not make the headache worse. Biking and walking always feel good. I still snowboard, although the shooting pain every time I do up my bindings is quite excruciating. I cannot do push ups, planks, sit ups, yoga, anything with jumping and any kind of staining is too painful. I also cannot play ultimate, surf or swim lengths any more. I sometimes have days now when I cannot even walk but every time I`m able to get back out there as soon as I feel better. (I had meningitis due to lupus)

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