Always tired

So im 15 months removed from my gamma knife and i just have never got my groove going again. before i loved the gym, i would go 5-6 times a week. but post avm ive probably been about 10 times. i was supposed to see my neurosergeon 2 weeks ago to talk about the mri i just had done but with the rona going on that sorta got pushed out a little further. have you guys had long term lack of energy

Hello mate. Funny I was about to post about this too. It’s been about the same amount of time for me since my avm removal from right temporal lobe.

I was the exact same before - gym 5-6 times a week but now I seem to get warn out very easily. What’s worse is that it seems to trigger off my mood and anxiety and if i push too far then it causes panic attacks/ focal seizures.

I just got an email from my neurosurgeon this morning who said there is no physiological reason why you should still be feeling fatigue at this stage, which is not really reassuring. It’s actually a little concerning to be fair. I’m due for another angiogram checkup but due to COVID-19 it has to be held back.

Sorry I know this may not have any answers to your post but I hope you find the answers you seek.

I’ve been dealing with some of this as well, but after embolization of DAVF. I think being inside, working from home, and the covid-19 situation contributes to this a lot as well. I think there’s just a steeper climb back to “normal”. I find myself very tired, depressed, lack of energy, anxious, etc. But this past week I rode about 50-60 miles over 2 days on my bike, and I’m starting to see improvement. The nicer weather, sun, exercise, all seems to help a bit. Plus, there’s almost no downside to exercise and it seems to accelerate recovery from most things.

its just nice to know im not alone, so it helps

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I didn’t notice much of an energy change after gamma knife. After my bleed I had zero, a couple of minutes of interaction and I needed a nap.I was always pretty active and after the bleed was only allowed to walk, so I started walking, a lot. About 6 weeks later I was allowed to jog, bike and light weights. It was a long slow process to get back at it. I was aware of the energy drain after gamma but I didn’t notice it. I think in the 6 months between bleed and gamma it became something I craved and couldn’t do without.

yea, my doctor told me i could go back to the gym and stuff, and i know i have to build back up to where i was pre bleed gym wise. but even doing light weights cause me to get massive headaches that will last for days sometimes. i know its a long slow process, so today i got off work at 7am and slept for almost 10 hours and woke up like i wasnt rested at all. its all just starting to get to me, i absolutely love the gym. but it feels like its been taken from me. im glad i found this site though, its comforting having people to talk to that habe been through it

At first it was frequently. But I have been fighting this thing for about 8 1/2 years. It is still there. Smaller, but still there. Now, sometimes I don’t have the energy to do anything but sleep, but those days rare. I still can always take a nap. Hopefully it will get better.

as long as it gets better.

Just start slow, don’t push too much, and don’t get frustrated. It takes some time to build up. I did about 2 months on the indoor trainer before I did any biking outside. It does get better, and I think exercise helps with that.

Welcome to our family of AVM-ers. We are here to support and encourage you. We willingly share our experiences. My AVM is over 5-years old and yes, I still tire easily. My legs get tired and ache if I walk for too long. Slow & easy wins the race for me. Going at break-neck speed confuses my AVM and makes me dizzy. My monster is in my Cerebellum which is responsible for balance & coordination. So take your time and eventually your frustrations will lessen and/or change. Welcome to the group and I wish you all the best.

Sharon D…

I think as an AVMer or any patient with a disease/medical condition it is normal to mourn for our ‘old selves’. Like me, I have also reminisced the energy, memory, vision, intellect, focus and ability to grasp onto things quickly. It’s upsetting of course and I can understand how you feel. But I believe that if something is taken away from us, we are given so much more in return. Let’s all stay firm with this! We are strong! and in the long term hopefully, we shall gain so much more in so many OTHER ways. :pray:

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Lack of energy. Fatigue. Oh, yes. I get it! ‘Had emergency neurosurgery > 26 years ago for a cerebellar AVM. I was always SO TIRED, that I needed to nap for hours. Also, I was unable to get a good night’s sleep. I knew that it was normal to need lots of rest after a stroke (I’m an R.N.) But, I was anxious to “get better”!
The thing is, the brain recovers at its own pace. Start your exercise gradually. Set small, achievable goals and celebrate each one! Really! I take long walks on flat, dry pavement when it’s not raining or too windy. Regular exercise, I find, is helpful in improving my balance/stability, overall health and just as importantly, my mood and outlook on life.
Two years after my AVM event, I developed chronic pain in my neck and upper back, which extended all the way down my back. It is deep and aching, sometimes burning, and it is there everyday. Also, accompanying this is non-restorative sleep. I describe my usual night as one of “cat napping”. I’m always tired. It took years before my hunch was confirmed by a doctor. Fibromyalgia. I don’t like it, but at least it’s acknowledged. I was hesitant to disclose this. I don’t want to suggest that your tiredness is the same. But, MY post-AVM fatigue is compounded by this. Anyone else have this experience?
Be kind to yourself. And, patient. :smiling_face_with_three_hearts:

so i was going to talk to my doctor about fibromyalgia actually. i looked up being always tired a while ago and saw that traumatic brain injuries lead to it. i just read theres no testing that can be done for it though, is that correct?

Hi!

That’s what I did when I first had these symptoms. I did a bit of research. No internet then.

In order to diagnose fibromyalgia, the person must experience the symptoms for more than two months. Unrelenting pain, as I described, is present symmetrically over specific areas of the body (see diagrams that usually accompany fibromyalgia literature). Non-restorative sleep is the second hallmark. One never feels refreshed in the morning and thus, feels tired all day, everyday. These symptoms (and, others) usually present themselves about two years after trauma of some type. To answer your question directly, there are no diagnostic tests for fibromyalgia at this point. The diagnosis is made strictly based on the patient’s history and physical exam. It can be difficult to receive the diagnosis. I don’t know where you live, but locating a knowledgable and caring physician is key.

‘Hope this helped!

Yes. It will take a long time to heal…I am sure you will get your energy back but let your body heal…even years. The brain takes time but it is a smart thing…LOL

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so what orginally .ade me think that migjt be what i had was i woke up one morning and my left knee hurt and it hurt for like 2 or 3 days and went away. then the next week it was my left hip for 2 or 3 days. then went away and finally my left butt cheek.

im in georgia and do all my treatment up at emory so im sure theres a doctor up there. so does the pain come and go or is it all the time and you just manage it with meds

Oh, good. Emory is a research, teaching, patient care medical center. Get an appointment for evaluation of your symptoms. The M.D. who finally diagnosed me is a rheumatologist.

Fibromyalgia pain is constant, 24/7, but varies in severity each day. The pain is usually on both sides of the body, in the same place. So, what you have does not seem to fit fibromyalgia parameters. But, I am NOT a doctor. Check it out!

yea ill still ask them but i do appericate your input

Ben’s Friends (the organisation behind AVM Survivors) has a living with fibromyalgia support group. You can browse the articles here https://www.livingwithfibro.org/ and sign up if it seems relevant.

In line with many of the other respondents, I would recommend going very, very carefully with getting back into exercise. I enjoyed badminton very early after my embolisation and I’m sure I overdid it. Start really steady and assume it will take you a long time (a year?) to get back somewhere like normal.

yea i know i got a long road ahead of me to get back to where i was in the gym.

ill definately take a look into that site, i appericate it

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