Hi Shelley,
I'm sorry to hear about this...

Hmmm, it reminds me of when Dr Ellis talks on his website about a book , "The Sensitive Nervous System"

Dr Ellis told me I need to wear gloves in the cold. I really try to not let my neck get cold also as it seems to cause muscle spasms.

I think people with tos have very sensitive nervous systems that are very easily overstressed.

I wonder what your finger temperature was when you finished your walk. Peter Edgelow talks about using a temperature probe taped on the finger.

When the temperature of your finger drops that indicates that you are getting stressed and you should stop immediately.

Your situation reminds me of when I get my teeth cleaned.

The dental hygienist was the same one I have had for years. When she started cleaning my teeth (when I first got tos )
I started shaking, tears rolled down my cheeks (but I wasn't crying) I was sooo embarrassed. The dentist peeked around the corner to see what was going on.They had to stop the cleaning.

I asked Dr Saxton what was going on. She said that my nervous system was in overdrive and the little bit of extra stress just pushed me over the edge.

She recommended that I take Valium 10 mg before the cleaning. When I get my teeth cleaned I take the Valium an hour before and I don't have that problem anymore.

I've been kinda obsessive about going to the gym at least to do cardio. I have been a big fan of the elliptical because its "low impact." that being said.... in the last 4-6wks i've noticed my RIGHT hand/forearm getting numb when i'm on the machine. I don't swing my arms, since that would just be a bad idea. I'm thinking I should mention this to the doc, but is it a sign of something else? arrrrrrrrrghhhhhhhhhhhhhhhhhhhh.

I have got to say I had a rough week also. All I did was to try and use a walking machine at the lowest setting and for 20 sec. and POW! I flared up big time with the swelling and my muscles still have not stopped jerking like mad I will no longer do that. I will just take slow walks n my own.

Tshadow not to be a pest but I get the same thing with the recumbent bile also, it just seems like nothing helps I know I need cardio but is it just water that is good for us? any help would be good

You know what I hate the most and it gives me nighmares! thoes machines you use your arms to pedal with OUCH!
Thanks,
flippn

Hi guys,

Thanks for all your great responses. I am going to go in reverse order.

But first I have to tell you all something else that is freaking me out. Ok if I lay on the floor on my back with knees bent and then try to straighten the right leg i get s big pop/click at T1 sometimes a little lower. It makes me scared that I am really damaging my spine. Sometime I will get the click pop at the pelvis and then the sciatica goes crazy but I hate the click pop at T1. Also losts of clicks lately in the shoulder area. Sure dont hope I have osteoporsis and the bones could break.

At PT on Wendesday super Joyce did ultrasound on T1 to try to get it moving. It helped. But I explained the above to her and she said its all connected. I will mention it to Jordan on Thursday.

Another things is the rest of the week my muscles seemed cramped throughout my whole body. My tummy has been bothering me lately so I got some pedialyte in case my potassium was low. It helped.

Anyone else get that?

Flippin....i know...the jerking really scares me. And I am sorry you had a rough week. Why does it happen. What is driving those nerves so crazy. I bet the docs would tell me that the neurontin or lyrica would help the jerks and the jumpy nervous system but I hate those meds. I have noticed its worse especially if I exercise at night. If in the morning the body has the ability to calm down maybe

Dabbo - that is so great that you still go to the gym.

Martha...I think I have that book the sensitive nervous system. I will have to dig it out. Wow that happened with your teeth. Hmmmmm I will have to remember before going to the dentist

Tshadow...ropey that is a good description. I will try not to give up. Maybe I will start again next week.

DiMarie....I like noodles...lots of fun Water therapy may be the way to go. Di how do we get those nerves to be uninflammed. There has to be a way. Ok you guys might seriously think I am crazy but a couple of things. First my endo recently ran some tests and saw that I have candida in my blood yep...yeast. She explained that candida once it gets in the blood can attack your nerves and muscles first. When the burning starts it always feels like somethng is attacking me from the inside out. SO I tried a long term yeast med but the die off was too toxic so I and tyring the yeast diet and some other things. I also test my Ph everyday and my body is very acidic. So I am trying to make it more alkaline and it helps. I also have a B12 deficiency and have been dosing 3000 mcg a day on B12 and it helps the burning also. I do think our metabolic state can exaccerabte the nerve probalems we have. So I am trying to metabolically reduce my all over body inflammation. Crazy....maybe

Olecyn....I still want a pool party with those Cabab boyz Wow really no circulation ACK! Wow! Ok I am scared now. How can I tell if that is happening to me?

Peg do not feel bad for encouraging me to walk. I need to be pushed and I need to try again. You are a great friend and I soooo appreciate your help.

Astern - I hate those eye twitches. I know stress makes em worse but interesting is that I had the eye twitch real bad on my right side for a couple years and then boom the TOS flared. Now I have them on the left and just wonder if theleft is going too. I also know if my potassium is low they happen more.

Alison....hehehehe you are not Alison paralysis. That is the name of my new client that is just so paralyzing. Yep time for Dr Jordan and total neuromuscular workup. Hey speaking of which I saw a new machine today on line that is supposed to make EMGs painless. I hope he has one.

Ok thats all for now.

I hope everyone has a painfree weekend. Thanks for all the posts you guys are great.

Shelly,

All I can say is the same thing happens if I try any type of exercise. The nervous system "attacks" back and I can tell it is angry with me for provoking it
The eye twitches? I find the trigger point on the side of the scalp beside the eye and press to release yes it hurts terribly but stops the twitching if I keep after it.

I am getting more twitches now than ever, even my butt, which can be embarrassing if I start going out in public - lol

We are all going to have to watch our electrolytes and fluid levels this summer. It seems to be getting off to a warm start and I get dehydrated easily. I can't exercise yet, but when I start, I'm going to walk in my house until I build up enough time without hurting, so I can walk up and down my street. I can't nag enough how very important it is to start slowly and also to remember what we did yesterday we might not be able to do today.

We could make a world record in Rigley's Book on "the most sensitive nervous systems in the world"
I hope it all works out for you and all of us - exercise is so important and building up to the point where the endorphins kick in is a must.
Be good to your body, handle with care.
Hope

SHel- I don't think Jordan will want to put you on lyrica...unless he thinks it is really neccessary. He is adamantly against putting me on ibuprofen or any other anti-inflammartoy.

I had a super visit with him yesterday. I expressed that i was feeling low b/c i had to up mt opana to 4 per day instead of 3, and that i was feeling like it was an awful lot of opiate to be on. I also wanted to talk about anti inflammatories b/c i feel like inflammation is a big part of my aggrivation on the surgical side. We had a very good conversation about how it was important not to be in pain to ward off 1, more pain, 2, loss of range of motion (from staying very still if i was hurting), 3. probable depression that would accompany constant pain, and a bunch of other, can't remember them all right now.

we talked about how, yes of course i don't want to be on this much opana long term but it was really important to get things under control before tapering off. However, he seems to be quite against drugs that could have other side effects (he also mentioned that he can't tolerate ibuprofen at all, maybe that's part of why he doesn't like it so much ) He is annoyed that the FDA would take something like vioxx off the market but leave advil on the market where people can take it willy nilly. (it will slowly eat a hole in your stomach and you won't even know it....then what?)

anyhow, i sure hope he can help you. Every time i see him he is so helpful for me. I go in with questions and he talks them out with me until i feel better. he is worth every extra penney i pay to see him as an out of network doc. He also often comes up with a "yes, i have published extensivley on that topic and i am completely familiar with it" when i bring up new things (yesterday i brought up my ADD and a quantitative EEG that i had to diagnose it about 1.5 years ago and i have been waiting to finish nursing to seek treatment)

ah well i am rambling about my self a bunch here on your thread, sorry, I guess i just mean to say that every time i see him i like the good dr jordan more and more. I think he will be able to help you if anyone can.

**fingers crossed for you**

Johanna

I was going to read a little today and not get into posting but I forgot something I should have put on my last post here.
I am not sure if you, I or someone else has mentioned this but a few years back I started aqua therapy.
I cannot describe how beneficial this was for me.
I had no bad effects from it like I did when I tried land exercise.
If you haven't tried aquatherapy I hope you will ask your doctor & that you'll think about trying it (if you haven't already).

It even feels good

I had a therapist teach me what to do.
Every summer I continue to do the exercises. They still work to increase my stamina and tolerance to exercise.

This type of exercise is even used for people who have fractured their hips. It is not so easy to walk across the pool as fast as you can.
It really works the abdominal and thigh muscles.
Plus the water cools you off on hot days.
I can't wait until I am cleared to start doing this again.

Hugs, Hope

Are NOTHING comparrision to TOS pain.
I'd rather have an EMG so i forget about the pain for 3 min
Its the after effects...flare, hot, throbbing pain

This may sound silly but, I take aspirin or ecotrin on occaision when i just dont want the brain effects of drugs

it cuts the achiness to some degree
Ibu does nothing
I used to take up to 800mg for maybe 2 years before a doc said STOP

Dr. Ellis says these antidotes do nothing
his website is GREAT

O YEAH...
AME's office called and the insurance company wants me to have a 5th EMG by Dr. Jordan and cervical xray
Hubby says enough is enough
we've been there done that and not driving to UCLA for just another EMG
It aint gonna change
I wont do it unless I have an authorized consult with Jordan by why
Haven't I seen enough docs?
Insurance co wont approve botox so, why go?

What a waist of $$ these guys are follishly spending
It makes me angry