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Postby drummergrl » Tue Sep 13, 2011 9:44 am

Hi Guys,

I haven't been on a while- I had been feeling really great for a while and had gotten to the point where I nearly forgot about my SM! Over the last few months, though, I've really gone downhill and now I'm not sure what to do next.

I've been so tired, as in can't get out of bed all day tired, which is very unusual for me. I'm not on a very high dose (at all) of Neurontin, so I'm guessing it's not because of the medicine. My back and neck ache constantly, my joints are so sore, and my left hip keeps painfully snapping throughout the day.

Overall, I feel badly the majority of the time. I don't want to just assume I have to feel this way for the rest of my life, but I also don't want to go running to the doctor just to feel like an idiot if it's nothing. I've felt this poorly for months and nothing I do seems to make a difference.

I'm not sure who to even go to if I decide to see a doctor- my orthopedic doctor (nearly 4 years post-op from spinal fusion), my neurologist (nearly 5 years post-op from decompression) or my primary care doctor. As much as I love my primary care doctor, he tends to just increase my Neurontin. I'm in my early 20's and can't stand the thought of feeling like this the rest of my life.

What would you do?
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

Re: Exhaustion?

Postby jfreema » Tue Sep 13, 2011 9:03 pm

How long has it been since you've had an MRI or other scans? If it hasn't been long, I'll share that I've been flaring up since June after feeling quite good in May, thinking everything was going to be good forever. I was even planning trips I wanted to take, lol. A coworker with MS is having a bad flare-up as are several others with neurological problems. I'm wondering if it's a bad time as far as something with changing seasons or weather (barometric pressure or something hidden) this year. I know I felt really bad in October of 2008 and other times haven't felt as bad or have felt worse. All this to say that you may start feeling better again if it's something with the atmosphere. I sure hope so. Let us know how you're doing.
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Posts: 317
Joined: Sat May 09, 2009 7:19 pm

Re: Exhaustion?

Postby hegnauea » Wed Sep 14, 2011 9:30 am

Ditto to jfreema...

I had a great summer. Maybe a week after Irene hit I started flaring and flaring. I also have been feeling more tired - but thankfully so far have been able to suck it up and make it to work. I'm having some weird dizziness or vertigo though. Different from the normal stuff. I think the change of seasons is hitting us or something - weirdly DURING irene I felt pretty good (I was in the Norfolk area during the storm).

Posts: 137
Joined: Thu Jan 24, 2008 2:24 pm
Location: Washington DC

Re: Exhaustion?

Postby pmaxwell » Wed Sep 14, 2011 10:21 am

Just because a person has CM or SM doesn't mean they can't get an infection or other illness. When symtoms increase it could be for many different reasons but it is important to make sure there is not some treatable illness causing the symptoms. Don't just assume it the SM.

Weather does affect symptoms as well as stress, etc. But don't make assumptions. No one likes running to the doctor but looks like you have given it enough time to improve on its on and it hasn't.

Together We Can...
Posts: 153
Joined: Mon Jan 31, 2011 2:20 pm

Re: Exhaustion?

Postby drummergrl » Wed Sep 14, 2011 10:32 am

I haven't had an MRI in nearly 2 years, jfreema. I'm supposed to follow-up with my neurologist if I have any "disconcerting symptoms." Not sure what classifies as disconcerting, though!!!

I have definitely noticed that I get impacted physically by weather changes, but this feels different. Usually I just feel cloudy, not in pain. I think I'll give it a week or so (the weather where I live is supposed to stabilize soon) and then if I still feel bad, call my primary care doctor. I just hate going there- the last few times I've been I've felt so dumb for going. Oh well. I just want to feel better!
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

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