SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Hating myself right now!
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Hating myself right now!

Hello everyone!  I am really hating myself right now!  Last night was the Packers home opener (which was awesome by the way) and I was able to attend.  It was a really big deal here in Wisconsin, as following the Packers is almost a way of life.

So, we went to Green Bay early, hours before the game started.  The NFL sponsored a free concert and there were approximately 50,000 people in the streets.  The roads were barricaded off for blocks.  Needless to say, we had one of the best nights ever!

Now, to my hating myself.  Because we were up there for hours before the game started, we walked around for a looooonnnnng time (okay, maybe it wasn't as long as I think it was, but it seemed like it at the time).  And one of my biggest problems is and always has been my legs.  My legs are soooooooooo painful right now that I can hardly stand it.  Like I said, I had a great time, but I am definately paying the price big time!  I wonder if this is how it's always going to be.  Am I going to have to start getting a wheelchair from now on every time I do something that requires me to be on my feet for a period of time.

I have also had to take a leave from work, but this was before the fact of last night.  I have just been having a really hard time physically and something had to give, so it was work.  I am extremely lucky to have such an understanding boss, though!  Sometimes it seems like when one thing gets better, something else replaces it.

Okay, I'm done now ;-)  Hope everyone else is feeling well right now!  I have noticed that I always seem to have increasing problems with my legs especially when there is a change in the seasons.  Does anyone else ever notice an increase in any of their symptoms with a change of season?

(((hugs to everyone!)))
Sarah
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5 Comments
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1530171_tn?1362547225
Hey Sarah.
You are so young and you have a potentially beautiful life ahead of you!
There are a lot of things you can do to take care of some of your issues.
1. Get tested for nutritional deficiencies (blood tests and hair analysis for minerals)
2. Regular low impact activities like walking, hiking, swimming etc.
3. Pranayama breathing. Look it up.
4. Quit smoking!!! Go to a reputable hypnotherapist for a min of 3-5 sessions.
Hypnotherapy will help you with other issues as well and if you are taking meds for
different reasons, you may be able to reduce or eliminate them.
5. Learn EFT (emotional freedom techniques). It is so easy to learn and apply and so effective. Just look it up!

And yes many people experience physical symptoms with the change of seasons.
There are numerous variables and reasons for this. Long time ago I was experiencing
psychosomatic symptoms at the end of  each summer. With all my holistic studies and therapies that I've learnt, I have managed to take care of it  and ALL of my health issues
in general.

The above suggestions are very simple, easy and they work!
If there's one negative aspect, it would be the fact that most people do not follow through!!
And this comes from years of experience.
Please let me know if you need more info.
Blessings,
Nikodicreta
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1760800_tn?1406757051
Understand what you are going through about the being on your feet for a long period of time - I have started using a cane to walk when I am.  I too go to football games (Ravens) and start to dread the walking and finally just said this is what I have to do so I can enjoy them.  One good thing is you get to go in front of lines and people get out of your way!  LOL

I still do not have a dx but while I have these symptoms I decided to try and make the best of them and not let them hold me back completely - because they do sometimes but I try to push on!

My sx seem to get worse with extremes, hot or cold - not so much the seasons -  

Hang in the and your Packers looked good Thursday!

Jacksmom
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1475492_tn?1332887767
Awww Sarah,

I was a little out of it the last few days. Sorry for the delay in response.

I'm sorry you are feeling this way. Is there some way to double up on medications or have you sought alternative therapies to ease you comfort level during these times? I know with certain chronic and/or auto-immune diseases they can plan ahead for this type of thing and change up your medications to help.

When is that appointment you have with the MSologist? I know my specialist/hospital has a full range of services to help assist us in therapy ranging from medications to physical, nutritional, emotional, etc.  I know if I am diagnosed with probable or possible, this will be one of my next appointments --- physical and nutritional therapies. It sounds like it's time to explores some alternatives to me.

How are you feeling today? (((Hugs)))
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1627868_tn?1333889942
Thanks for your responses.  The pain isn't too bad today.  I couldn't do anything all weekend though, which probably wasn't a bad thing as I had a lot of homework to do, lol.

I tried the whole therapy thing for a few months, but it was actually making the pain worse.  I was told by the neuro that therapy wouldn't help my pain because it is nerve pain.  I don't know, maybe this new guy will think differently.  When I was going through therapy, they tried a TENS unit on me, which did help to some extent when it wasn't malfunctioning.  Maybe I'll talk to the new guy about it.

@ Sidesteps: My appt. is at the end of October.  I know I should go and I probably will, but I am having mixed feelings about it.  How are you feeling?  Better I hope!

@ Jacksmom: My symptoms get worse with extremes of temperature too.  But I have noticed looking back that the first symptom that was bad enough to notice started in the early spring of 2008.  The next ones came in early spring of 2009.  After that, it was fall 2009 after a bout with H1N1, then really bad in spring 2010 and fall 2010.  So basically, it's been every spring and most of the falls for the last 3 years.

Anyways, I hope everyone is doing well and enjoying the cooler weather.  It's about 90 degrees here today.  It was fairly warm all weekend too, but starting tomorrow it's supposed to only be in the low 60's.  Perfect!!!!  I love the fall!!!!

(((hugs)))
Sarah
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1475492_tn?1332887767
I do hope you get this second opinion. I was so relieved after seeing this MSologist. She really is very good.

OH~ my hubby is a HUGE Packers fan. We have friends from Appleton. I was there last Spring for a week. I love that area. I am from Colorado/Nebraska so the mid-west is "home" to me. :) Maybe we will come visit.
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