Transverse Myelitis and Fatigue

[@barbsvatek6054]

You’re so right! Fatigue has been a HUGE part of my TM! And it’s been an embarrassment for me. Before TM, 6 years ago, I was a very active, the early bird, 58 year old, always on the go.
Since TM hit mid spine, people and Drs don’t connect that fatigue should be an issue. I’ve wondered if it’s because doing anything is a chore. Nothing’s easy. Plus I’m on a lot of gabapentin and baclofen for neuropathy and spasms. I’ve worried I get tired because maybe I’m depressed? But I’m not depressed, not any more than anyone else!

[@carllicastro4969]

Hi. I have TM too. c5. Loads of pain esp my feet. I agree totally with your comments re fatigue. Everything is harder, slower, and pain, factually, is tiring. TM and fatigue go hand in hand.

[@stephb2263]

It is the TM, I can't do mornings either. But medication side-effects, and the depression are all interlinked with this crap illness. All the best. Thanks for posting. Not so lonely when ppl post stuff. Xxx

[@DeeE101]

I can not agree with you more, I was diagnosed with TM in 2015. I was able to relearn how to walk again even though it takes great exertion and leaves me exhausted in a matter of minutes. It feels like I am walking upstream through a strong cold current in a river with a sharp nail stabbing me in the spine that nearly floors me. I have tired so hard to stay in shape but sadly I have been watching my health slip away. I have always been a big believer in exercise and physical fitness, in fact, the first symptoms of TM started while I was on my way to the gym, little did I know two hours later I would be paralyzed in the hospital still thinking that I would be just late for work that day.
Here I am several years later, living alone trying to cope and push through each day. I have a fairly strong emotional support system, although I don’t let them know about all the daily struggles. It is frustrating because I feel my doctor doesn’t seem to want to connect some of the other complications and things that are going on with the TM.

[@kurtmpaul]

Hello from Kansas! Im suffering with the same thing! I told my doctor about my fatigue and was told it was because I'm depressed! She gave me a B-12 shot and that was that. I had 2 spots in my spine that shut me down, one at C6 and the other T6. I gained back my arms but, that was it. I'm finding out more and more about how clueless most doctors are about treatment and the symptoms. Im tired of repeating myself only to be ignored or humored. My arms give out quickly and I'll feel drained. Add medications that make me drowsy et VOILA, Im Rip Van Winkle. If I push myself physically, I'll sleep for a good 16 hours. Nothing will wake me. If I don't push, Ill sleep for for 10-12 hours.

[@jeromedenmark7587]

I was diagnosed in 1983 at 13 years of age .
Fatigue is a bummer .

[@barbsvatek6054]

I can’t even imagine what it must’ve been like to have TM in the 90’s!!!!! You are a heckuva lady!!! I’m amazed at your comeback. I’m 6 years at t-5/6 and mostly in a wheelchair. Mainly cuz I live alone and the wc allows me to get more done but also cuz I can’t stand walking and the neuropathy and increased spasms that result from it.

[@janetdawson9118]

Thanks for posting....if for no other reason that it may raise awareness of the existence of TM in the general public. Fatigue is most certainly an effect of TM, and my neurologist acknowledges that. His only recommendation is to get lots of rest, but also to get as much therapy and exercise as I can, within these limitations. It doesn't sound like any whiz-bang innovation, but it is actually very logical. Our bodies are trying to repair all the damage done by TM, and the time that our bodies do that is when we rest. I am with you all on mornings ! ......healthy folks don't realize how challenging it can be just to haul out of bed, toilet( or catheterize & do bowel care,) get something to eat and get our medications down our gullet, by which time we have to rest again before the thought of getting washed up and dressed and on & on, all day. Don't like early Dr. appointments ! And of course the anti-seizure meds, muscle relaxants, etc. contribute to daytime fatigue and sleepiness. It does help to hear from each other. ... If you haven't already, look up "Smart Patients", and there is a specific TM group where you can discuss topics, ask questions, have educational Podcasts, and generally not feel ALONE ! Best wishes and many blessings to all who are living with TM.

[@ash8226]

I'm always tired.

[@melloyellow5598]

Pain assaults the brain. An assaulted brain is a tired and fatigue brain. Among other things.

[@daliagabyrebolledo6091]

I too suffer from fatigue and am sure it has to do with TM.

[@sarahb2828]

Hello community. TM at t5/t6. I sleep as long (10-12 hrs per night) and struggle with fatigue as described here. None of the doctors I see can give a reason for this level of fatigue with this amount of sleep. As other comments say- my drs have told me to seek mental health help, as if the fatigue is only caused by depression.

[@wearesrna]

Hi Sarah, we're sorry to hear about your fatigue and your negative experience with your doctors. Unfortunately, it seems this is a common occurrence. Here is a video on fatigue given at our 2019 Rare Neuroimmune Disorders Symposium, which includes treatment strategies: wearesrna.org/resources/fatigue-rare-neuro-immune-disorders/.
For more info on TM, please consider becoming a member of SRNA if you aren't already. Membership is completely free and allows you to stay up-to-date on the latest news, events, and research. You can join here: wearesrna.org/join/.

[@johamilton1664]

Just diagnosed and already agree.