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I really hope this isnt forever
This has been the flare from Hell.
Those visual flares that I've had were nothing compared to what's going on right now. (well, the pain from the first optic neuritis was comparable to my current back pain) My back hurts. I'm numb from pretty much the chest down. I feel strange. Like parts of my body arent connected to where they're supposed to be connected. My head feels weird. My feet are so numb I cant drive my mom to her appointments. I feel really really really sick and weak (and that was before I started on the 'roids) I'm not sure I'm able to walk a straight line and standing up for very long is not all that possible. There's a giant invisible python strangling me around the ribs, and I'm pretty sure that invisible snake has spikes on it that are stabbing me in the back and sides too. The thing is, I know that this isnt the worst it could be. Knowing what other MSers have to deal with, I'm grateful that it hasnt been any worse, but geeze, this is the worst I've ever felt. I dont see how other MSers who unfortunately have it worse than me do this every day. I spent about $100 taking a taxi to the infusion center yesterday and the day before. (about $25 a trip...It was about $20 for the ride, but I like to tip the drivers) Those stupid steroids kept me awake all last night. The pain in my back didnt help either. Yesterday was my last day of IVSM, and I had to sit in the ER in really uncomfortable chairs (the little gurney they gave me to sit on was just as uncomfortable too) I'm pretty sure the really bad back pain last night was the result of having to sit in the ER. Reason I had to do the IVSM in the ER yesterday? They made my infusion nurse work the ER, so they dragged her there kicking and screaming and dragged me after her. She wasnt happy about it. I made sure that management knew that *I* wasnt happy about it. (I also made sure to compliment the nurses to management. All the nurses were great. I especially told them that the infusion nurse was the best part about the whole experience) I'm so tired today. I dont know if that's the IVSM and/or the prednisone taper I started today, or if it's the MS, or if it's the combination of the crappy day I had yesterday along with all the IVSM and MS and the lack of sleep I had last night. (didnt fall asleep till about 6 or 7am today, slept till noon) Someone please tell me that this stupid flare is going to end soon and that I'll hopefully go back to feeling like I did before this Flare-Hell hit me. I felt so good a couple of weeks ago. It's just blown me away how fast that went away. I'm really bummed because my birthday is coming up in a few weeks (May 24th) and I'm really not looking forward to feeling this craptastic on my birthday. (I hope I get a really good b-day present from my parents this year. I need something really cool to help make up for the suckiness of all this. I'm thinking about a new computer...a Mac Mini) |
Hi Erin,
Just over four years ago I went completely numb from my belly button down. The only thing I could feel was temperature changes (which was how I knew if my slipper came off). I got worse each day for 11 days and then ever so slowly got better. I felt like I had tight bands around my feet and various other body parts. Much later figured out that was spasticity. Couldn't drive for about 3 weeks. I didn't do IVSM, just waited it out. I didn't have the back pain you're describing but it turned out that I had a lesion, parts of which went from T8 to T10. You probably have one higher up that's causing your grief. I hope you start feeling (literally!) better soon. It was very frustrating depending on others, even for that short (it didn't feel short then) period of time. C |
hang in there. being over tired, over stressed, and yes, even doing IVSM can kick off bizarre symptoms. please, try to get some rest, and find a way to relax and let go.
If the sx keep up, please call the MS center, and tell on yourself. :hug: |
I know I have a lesion on C4 and one on T12. I'm pretty sure it's T12 that's picking on me.
Thing that bugs me, was a week before all this started, when I was feeling great, I was at my neuro's office for a regular check up. He was just going over my records, mentioned the spinal lesions and I mentioned then that the lesion at C4 was the one that scares me. (because of how high up it is) and that I was worried it would do something to me someday. Neuro made a comment that was basically something like he didnt think that would happen, that I may never have a problem with those two lesions. I guess the lesion at T12 heard him say that, and said "wanna bet!?!". It was exactly a week later that all this crap started. I actually am blaming all of this on the stress of having house guests that. will. not. leave. (arrrrrrrrrrgggggggghhhhhhhhhhhh!!!!!!!!!!!!!!!) I dont think I'll start feeling better until a few weeks after they're gone. They wont leave fast enough. Anyone ever have an exacerbation that you could pretty much connect to being stress related??? |
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It will get better, Erin. Hang in there. |
All of them! if it wasnt stress when it started, stress certainly made it worse.
Hang in there puddin :hug: |
Many symptoms act up when I'm stressed. It takes a lot of cognitive therapy to change one's thinking patterns. I'm still not in control. Part of that is the MS, of course:rolleyes:
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I totally believe that the stress of knowing our house guests were coming was what set this off.
I was told earlier that they're going to be here for potentially another 3 or 4 weeks, and I swear that hearing that made my skin go more numb and made me feel so much more icky and MSish. I just discovered something. I was trying to dry a bra so that I'll have something to wear later, and it cant be dried in the dryer, so I was using a hair dryer on it to give it a head start...I discovered that cool air from a hair dryer blowing across numb skin feels really really good. Now if I could just figure out something that feels good on feet that are screaming because the spasticity is making my toes curl. I had an ice pack last night, but sometimes it was too cold. If I wasnt so tired right now, and my feet werent too numb to drive, I'd go up to walmart and buy myself some new sweatpants or some pajama shorts that are too big for me...and some t-shirts that are a lot bigger so that I'd feel more comfortable. Clothing is driving me nuts! I'm falling asleep right now, so I think I should just give in to that, since it might be the only way for me to get some sleep tonight...do it when it happens, rather than trying to sleep later on at the usual time. |
Sending you some really big, gently hugs. :hug::hug:
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Can I have the big gentle hugs delivered by a good looking guy with good massage hands who will bring me chocolate and will change the dvd's in my dvd player for me without complaining whenever I want to watch something on my tv.
I just need a personal masseuse on permanent retainer. |
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