NeuroTalk Support Groups - Having a really hard time!

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Having a really hard time! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/19175-hard-time.html)

Quote:

Originally Posted by tayla4me (Post 100781)

Hope you are starting to improve. I have been away from the site for awhile and am just catching up.
I used to faint from my pain but the meds I was on were also causing low blood pressure which didn't help.
Are you taking an anti-epileptic drug, it may help the spasms and jerkyness, I suffer terribly from them but do get some help from Clonazepam.
Thinking of you
Tayla:hug:

Yes, I am on anti-epileptic drugs: Lyrica and Neurontin.

Quote:

Originally Posted by mollymcn (Post 100733)

Big hugs (the non-hurty kind). You are good and you are brave to try something new to fight for your legs. It is so hard to know what to choose when the choices are so not-great. When will you get your first blocks, do you have an appointment yet? and for the pasting out ... everything other cause has now been ruled out, right? (Vitamin B-12, blood pressure, etc etc). Pain does such awful sneaky things to our brains and bodies...
xxxxxxxxxxxxxxxxxx oooooooooooooooooo

I will start the blocks the week after next! I am so happy that I am going to be able to get them, though I really wish that I could've gotten them sooner.

I chose to start with my legs since they seem to be the worst out of all of my body, at the moment. I really want my legs back the worst, I think! I want to be able to walk, go outside at times, go shopping, etc. without pain from walking! I cannot stand unassisted anymore, and that is really hard on me, I have basically no independence- I cannot go anywhere!

Another question- anyone have weakness from their RSD? My legs seem so weak, and my dr thinks that that may be what is going on and not "muscle guarding". When I try to walk I rock back and forth, my legs are just so shaky!

Passing out: My Dr did check my blood pressure, and it was actually normal standing and sitting. I haven't been tested for the B-12 deficiency, but will look into it. My Dr feels that it is purely pain related and that once I get through this bad flare up things will improve. I am currently taking the pain medicine along with the other medication I am on, though I don't usually take pain medication (just using the ant-depressants and anti-seizure medications), and it has decreased some of the passing out. I have thought about whether this could be seizures, but I really don't think so (though I know it is possible even if you are on anti-seizure medications), as the pain is worst in all different areas when I pass out (it is not like I pass out with a sharp pain in my head every time I pass out), -sometimes the pain is worst in my back when I pass out, sometimes it is worst in my chest, sometimes in my leg, etc, etc, etc...

Thank you so much for the support, prayers and hugs!! I appreciate all the kind, caring words you all send!

Sending my Love,
Vanessa :hug:

Vanesa, I am praying really hard for you! I am so glad that you will be getting the nerve blocks!! I am sorry to hear about those migraines though! ((Big Hugs)) and lots of prayers and love coming your way Vanessa! Love, Desi:hug:

I am very glad you saw the Dr. and he at least knows that you are passing out.

However, you seem to working on a premise that isn't true. When you have a seizure, you do not have a pain in the head first. That is not at all the case! The neurons in your brain start to fire too quickly, which you don't feel at all. For me, the symptoms change with each seizure. Sometimes it's "feeling like my head isn't attached to my body anymore, it's floating separately"... or I just feel nauseous and light-headed. Other times I have intense pain in some part of my body, could be anywhere, but it's mainly in the legs, where my rsd is the worst. The worst of the seizures are more painful after it's over... muscles ache from stiffening or flopping around during the seizure. Nerves are on fire and "buzzing", as they receive the "overload" signals from the brain.

I don't get ALL these symptoms with each seizure, it's a "mix-and-match" sort of thing, lol. For months, when this first started, I couldn't even tell when it was about to happen... it took becoming more aware of my body, paying more attention, really... to know what was coming. Plus, the first ones involved none of what most people think of as a seizure. There was NO flopping around, it looked to my honey like "I was just passing out", that's what he told the Dr.

What you really need is for your carers to watch what is happening to you before and during one of these spells. YOU won't know at all what is going on, as it's happening to you, lol. It's up to them, at least at first, to figure this out. If they see a "look on your face" that doesn't seem normal, or you aren't responding to them as you should be, you look unsteady on your feet... all of these can be signs.

I'm NOT trying to convince you that you have epilepsy, not at all, lol. I just want people here to be more aware that it's a distinct possibility for rsd'ers to develop the disease. It freaked me out when I was told that... I'd never heard that there was even a remote possibility, never seen it written about in any rsd literature.

Quote:

Originally Posted by theoneRogue420 (Post 101383)

Thank you for explaining that all to me! I have basically no understanding about seizures (just RSD!). All I knew was that when my brother had seizures, both times he held his head, screamed and fell over! So, I assumed that it had to be head pain, and not pain in different areas.