threads

Penguinrocks · Post by **Penguinrocks** » Sun Oct 14, 2007 1:26 pm

I don't want to hijack anyone's thread so, I thought I'd start my own. I know I've not been posting a lot but, I've been here. ***lurking penguin***

Anyway, I'm scared. Everyday that God grants me to wake up, things are not good.

1. RLS with pain. Yes, some of us got that lucky
2. Fibro. Adds to the pain and limitations of movement
3. Unexplainable brain pain. When I laugh very hard, the "knife" is inserted into the right front lobe of my brain. Caused a bloody nose three days ago and pretty much sidelined me yesterday.
4. Shaking. Uncontrollable full body shaking. Neuro is keeping her eye on Parkinsons since I present more symptoms than what happens in Essential Tremor.

Will I be in a wheelchair by the time I'm 50? I'm 40 now.

Broke down crying in front of Kathleen yesterday....I HATE ME WHEN I DO THAT...but she just kissed me, told me to go home and rest and told me I do "too much".
Whichever.

Don't tell Kathleen I got a bloody nose from this brain pain thing...she doesn't need to know that....

love you all and thanks for listening...I hate complaining cuz it makes me feel so helpless, useless, grammaish, anyway....thanks and i love you

lyndarae · Post by **lyndarae** » Sun Oct 14, 2007 3:12 pm

hey girlfriend, I am so sorry to hear your in so much pain. And you must have alot of fear with it too and that makes the pain all the worse. You are a member of this family and it doesnt matter how long ago you posted anything!! You are loved here. I have been having alot of pain too, so my heart goes out to you, I always feel so helpless when someone I care about is suffering and there is nothing I can do to help. But do know that you are in my prayers and thoughts. Thats just not right when it hurts to laugh, and the bloody nose thing must have freaked you out, I hope you see your doc soon and they figure this out. I hope your day today is better. I had to stop working so hard and doing so much myself and it is so hard for me to just sit around when theres things I want to do, so I hear ya, GOD BLESS hon and please take it easy on yourself.~~~~~~Lyndarae

Penguinrocks · Post by **Penguinrocks** » Sun Oct 14, 2007 6:52 pm

Lyndarae...you are a light.

I appreciate your words and you are so right about the fear. I have to not show any yaknow... Kathleen doesn't need to see this....basically, I wanna get moved back home before i can't move anymore....
gotta hold on....

i love you!

penguin

Post by **ViewsAskew** » Sun Oct 14, 2007 7:03 pm

I can only imagine how scary that must be. You mentioned the knife/brain/laughing stuff awhile back, and to not have any concrete ideas from the doctor yet except the possibility of PD. What a gem of a daughter you have, though, and you've raised her to be able to handle what she needs to. We all want to protect our children - more than just about anything - and you've done that. Let her love you and be there for you when you need it. She needs to be able to do the same for you.

Many hugs.

SquirmingSusan · Post by **SquirmingSusan** » Sun Oct 14, 2007 10:19 pm

Penguin, I'm so sorry to hear that you're feeling so badly. I'm one who is also cursed with painful RLS, but at least I get methadone to knock down the pain. And it's so horrible when the body doesn't do what it's supposed to do, and does stuff that it's not supposed to. It would be good to get a diagnosis so at least you would know what you're dealing with. I know that for me the not knowing makes my imagination run wild. At least if I know, I can plan accordingly.

That thing with laughing would drive me crazy! I laugh all the time. Last summer I had a very bad tremor and figured it was side effects from meds or something. It turned out that I was extremely hyperthyroid. Have they tested you for something like that?

I know someone who was having weird neurological symptoms and after months and months of diagnostic stuff they figured out he had arsenic poisoning! Is there any possibility of having some kind of heavy metal poisoning? Arsenic, lead, mercury?

I hope you have a good neurologist who checks you out for everything. And I hope you get some answers. Soon. And some relief of your pain and suffering. I'll light a candle and say a prayer for you, penguin.

Neco · Post by **Neco** » Sun Oct 14, 2007 11:16 pm

e-hug

Penguinrocks · Post by **Penguinrocks** » Sun Oct 14, 2007 11:35 pm

thank you my special peeps...

I really dunno what to do or think...i just keep trying to tell myself to learn to live with it cuz it won't go away..

i've filled out paperwork for disability...if i do that? maybe i can get pain meds to help ... can't now, have to work....

at any rate...i thank you for your thoughts, ideas, suggestions and love...you all are amazing and i love you

becat · Post by **becat** » Mon Oct 15, 2007 2:44 am

Penguin are the nose bleeds new?

Does the doc know about them?

I would be scared too, honest I would. To have no real answers is the worst, but I would start pushing a bit harder now. There is an answer, you just haven't had the right test, the right question been asked, the right person been asked...........

But take from me my love, you fight for that answer. Make those docs responsible to you. Look them in the eye and tell them your not giving up and your counting on them to help you get to the bottom of this.

Make them get emotionally involved.

Yes, Your Kathleen is a charm like her Mom is, and she is right .....you do too much somedays and need a Penguin break.

Send those flippers a hug and filling the moon with prayer for you.
I love you.
Lynne

dogeyed · Post by **dogeyed** » Mon Oct 15, 2007 11:59 am

Penguin,
Only thing that comes to mind about the nose bleed and headache is too much iron can cause that, from supplements. But I don't think that's it, so I hope you will see your neuro again. Would also be good to have some pain meds, even just for some temporary relief, I used to take them after work when I was working.

Penguinrocks · Post by **Penguinrocks** » Mon Oct 15, 2007 12:07 pm

Thank you my Becat! :-)

The nose bleeds are new...yay for me!

Dogeyed, thank you for your thoughts. I don't take iron as my levels are fine and they gave me Vicodin for after work and it doesn't touch a thing....so I'm kinda in my own catch 22 :-)

I plan on putting all this in my journal to present to the neuro...to see if it's just a one timer thing or what....

I'll take all the "moon shine" *giggle* you can give me!

love you

KBear · Post by **KBear** » Mon Oct 15, 2007 2:45 pm

Sending hugs your way. If you haven't told your doc about the nosebleed it may be worth a phone call, especially if there is more than a week until your next appointment. This is a new development to a set a symptoms that is quite frankly pretty darn scary.

You are one brave penguin. :wink:

Susan has some interesting thoughts, worth looking into.

SquirmingSusan · Post by **SquirmingSusan** » Mon Oct 15, 2007 4:18 pm

Check this out Penguin. I googled "headache from laughter" and got a couple interesting results. Apparently you're not the only one, although this person's headache is a bit different...

http://headaches.about.com/od/asktheclinicia1/f/010906_5f.htm

http://www.blackwell-synergy.com/doi/abs/10.1046/j.1526-4610.2003.03141.x

http://www.headachedrugs.com/archives2/laughing.html

I wonder if what you're having is a migraine or cluster headache? I know that cluster headaches have a sinus component to them, and can have a lot of pain behind the eyes and in the sinuses - maybe related to the nosebleed.

Anyway, I'm not a doctor, just thinking about people I've known with all kinds of varieties of headaches and googling around the internet. :wink:

If I remember right, you've had an MRI. Have you had an EEG? I had to have one of those because of migraines.

I lit a candle and prayed for you last night and will do the same tonight. I hope you get feeling better, and get this figured out!

Penguinrocks · Post by **Penguinrocks** » Mon Oct 15, 2007 11:53 pm

thank you .....

i did some looking round myself...and it's just as "iffy" as RLS was when I was first diagnosed.

I've had and MRA, MRI, EEG, etc...the pain is still there from Friday, in my brain i mean...

almost fell at work...i'm tellin ya....she's gonna have one good book to read in December!

I love you all so much and how much you care bout this penguin.....