How do you deal with fatigue?

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Liena
New Member


Date Joined Sep 2015
Total Posts : 1
   Posted 9/3/2015 4:14 PM (GMT -6)   
Hello there,

I am new to the forum. Tonight I found this wonderful website and it's been comforting.

Please allow me to tell you my story:

At the beginning of 2015 I was hospitalised for a drug-resistant bacterial infection in my bladder (Acinetor bactor Baumanni. I must have picked this up from my Grandfather two years previously in ICU, and because I have structural bladder problems (from a ureter reimplantation + kidney problems from years ago), the bacteria must have found a home in my bladder. Anyway, I was put on Gentamycin (a very strong anti-biotic) for 4 days on an IV. I lost some hearing after this, and for 2 weeks I was very, very weak.

Flashback note: before the infection, I had been experiencing memory loss, concentration problems, extreme fatigue, tingling legs and arms (like "restless legs"), blurred vision and a feeling of vertigo/pressure in my head. I had some trouble keeping my balance, and even dislocated my patella from suddenly falling during dance rehearsal. I didn't take it too seriously, because I'm on meds for chronic allergic asthma and severe allergies, so I thought that might be it. Also, I worked 16 hours a day, and danced professionally, so I thought I was tired. I also had Epstein-Barr when I was 18 (currently 23), and I knew it often came back, and left me fatigued.

Back to post-infection:

3 weeks after my hospitalisation, I had an acute neurological "attack". It had been coming since my time in hospital, but culminated one afternoon. My legs felt "funny", like restless legs, but when I touched them, they felt numb (like when you sit on your bumm too long and it loses feeling). After a while, I had this in my hands and arms too. Then my motor coordination went. I was falling over and I could barely walk. My muscles started twitching all over like crazy. Luckily my mom was with me, and she took me to hospital. I had a very poor experience with the in-house neurologist, and the next day I flew to my hometown and was admitted in hospital there. My neurologist found that I have hyper-reflexivity, joint pain, proprioception difficulties, balance difficulties, extreme neural pain (it comes and goes depending on how active I was during the day), numbness and motor coordination difficulties. And, of course, memory loss and poor concentration. After a lot of physio and rest, these symptoms have improved, but they are still there. I had ALL the tests done, and I am positive for no autoimmune or other disease. My MRI for brain and spine are clean. As a preliminary diagnosis, my doctor has said MS, and he has given me Modafinil for the memory loss. If I have a "relapse" he will put me on steroids in hospital under supervision. However, I am acutely aware that this is a very difficult diagnosis, and it could still turn out that I have something else. Or that something caused an acute peripheral neuropathy. For now, we don't know.

For 10 months I could not look after myself, I can no longer dance, and my life has come to a complete stand still. I am in total shock. Tonight it hit me again, and I am so upset. My family has been through such difficult times financially and otherwise, and I feel like a burden. I'm trying my best, but I feel very alone, especially because I'm not getting "better". What I have is not like a flu.

Anyway, apologies for the sob story. I actually would like to hear if anyone has tips on dealing with fatigue? I used to be ultra fit and strong, and it is a huge comedown for me when I get so exhausted.

Many thanks in advance,
L from South Africa

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1226
   Posted 9/5/2015 9:42 PM (GMT -6)   
hello L,
I am on modafinil for ms fatigue. Works really well for me. My concentration and mood are definitly improved. its expensive, but all progressives in my opinion should get a chance to try this drug. it works like an amphetamines, without most of the side effects. And you dont have to take it everyday, since it is not addicting, and doesnt leave you with a drug hangover. but it does wire you up.
barry
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