Ok heres what happened to me...
 

So last night I decided to try to get some exercise and start to walk 15 min a night. I have TOS and apparently sciatica or atleast inflammed nerves down there too. Shows possible entrapped piriformis blah blah on fillers MRN of right pelvis. And the sciatica comes and goes.

So I went to the track a little before sundown and did three laps. I tried not to swing my arms too much to aggravate that T1 area. It was a littel sore to the touch yesterday for some reason but then I have been trying to work at posture and roll shoulders back and some stuff has been clicking in and out in that area.

It was a little chilly and about three laps in I started to get cold and the area at the base of my neck started to get cold. So I figured 3 laps and I am good for today.

So I went home and put some heat on things. And laid on the couch where ok I am a little crunched but ok.

Lay there a while and neck and should feel a little out of place. Click back in again. Start falling asleep and wham, both legs jerk and a restless leg feeling almost all over like. Switch positions and feel like something is pinched and arm twitches. And its sore at T1 and feels like swelling, almost like spinal cord is bring pressed upon and swelling up or the cord is swelled and fills the whole space. And its throbbing sore at base of spine, ah the sciatica. Have this internal shaking throbbing feeling like something is entrapped or being pressed upon. Feel it down the whole spine. That feeling was once explianed to me as muscles shaking from weakness but this felt more spine like

And my nerves are all jumpy. Heck I am jumpy. Legs jerk a couple more times. This happened before once when I tried going on the treadmill. PT thought maybe the compession on the spine from walking at exercise walk (which was slow) was too much and it irritated the whole spine. Of course I then got anxious (who me overreact :rolleyes: ) and was like twitching argh ALS. (not trying to light of ALS but I read a story about someone who had leg jerks and muscle twitches and when i think about this happening i go off the deep end...I know ridiculous...but then is it the spine? brain?) I also have eye twitches. Stress probably

It kept me up and I had a hard time going to sleep. Was anxious at this point but could nto find a comfortable spot.

When I woke up in morning shaking was there (inside near spine) , slight throbbing but no visible shaking. You would not be able to see it. It just feels like something is being pressed on or crsuhed but where?

Anyway just wanted to know if anyone else ever felt something like this. I see the nuero next week. Could it be compression somewhere in the spine. I am ok on the elliptical but when I walk for exercise nope. But then today I was ok walking around the office today. Although eight now it even feels like something is still shaking
Thanks :grouphug:

THink I'll take a muscle relaxer tonight. Maybe I will also post in spine forum.

awww, shell i don't have any ideas on that one. i guess walking is not for you. it isn't really for me, either....

have you been calling neuro's office re: cancellations? They might be able to get you in sooner if you do..just a thought.

Hang On, I Think He Can Help You
 

wow shelley,

aren't you the one who says you're a poor reporter of sx? that was pretty darned good for someone who's so bad at that! i must say, girl.

your sx resonated with me, but i couldn't tell you why b/c i'm REALLY bad at remembering where and what part of the body and what muscle group is affected in what way and what nerve feels like it's being pressed down upon causing unbearable mind-numbing tooth-shattering pain.

i feel for you, kid. it does sound to me like time for a complete neuromuscular work-up from the good dr. shelley jordan. why don't you make an appointment with him?

what's that you say? oh, you have an appointment with him? very good! that's way good, keep tracking your sx.

this really, really sucks. i wish i had a clue what to tell you. it doesn't sound like an ortho problem to me. but i'd be hard-pressed to tell you why i think that. and maybe the spineys will have some ideas; you just never know...

it goes without saying you're doing everything you can to stay comfortable with icepacks, rest, good nutrition, lots of H20, etc., and bossing your cute husband around endlessly - try to take it easy at work, too, if you can, until you can get in to see dr. j. and do call anne every day to check on cancellations like johanna suggested, just make sure to mention yours is an initial app't and he's going to want a good block of time with you so the cancel would probably have to be for a first visit as well for that to work, i'm guessing.

and i would lay off the exercise for now. superjoyce maybe could help you with some ideas of what to do. gently, gently above all else. no MAT (martha, back me up on this). don't be a hero or a martyr. just hang loose.

oh, and i think you need some chocolate.

shelley i am so sorry this is happening. i am thinking alison paralysis must have something to do with it. she is just such a byatch. i want her gone!:mad:

alison

Sheley, could it be the WAY you're walking? Could the impact of each step be too 'hard'? Thus aggrivating the nerves and causing swelling (very small), enough to entrap something in/near the spine? Just guesses at this point. I've had to totally change the way I walk. I'm told to walk "silently" like sneaking around the house at night. This means shorter strides and ZERO impact.

I have eye twitches too and other facial ticks - they come and go... but come mostly when over-tired or stressed.

Hope you are better today after a muscle relaxer! :hug:

Walking pressure inflamation
 

Shelley,
I remember when Dr Togut would talk to us he would say whatever you do to start small, take breaks, and take time to work up.

Around the track three times with sacro problems and the tos is overdoing it for you, your not a 16 year old.

Your nerves are inflamed, sounds like two things the sacro-illiac and the TOS. Nerves insert into muscles to tell them how to move the body. When you assult inflamed nerves the muscels try to protect them and can cause spasms.

Another thought, you may have been dehydrated, or lack potassium in your body.

I cannot walk, I try the treadmill, but it is sore, my best walking is laps in the theraputic pool. I can use a floaty for my arms and there is no stress or pressure on my back and hips.

Your sacro-illiac problem likely has that leg a bit shorter, so your stride is off too...
Maybe if you did one lap, and sat, then a secondlap...stop for the day.

Or even a half lap, stop and the rest of the lap...for a week....BUILD IT UP SLOW, your body is not a healthy16year old. your injuries liken you to an elderly person, would you have your grandma walk three laps?

So unfortunatly, remember you are injured, rehabilatating yourself and treat yourself that way.

If you can, get gatoraid, and regular old asprin to help with the spasms.
Hopeing you feeling better.
:hug: Di

PS Katie says your are the Best, you are her hero and love. She is recouping from bronchitis and well entertained. She will drop a note to you.

Sorry
 

Shelley,

I feel so bad I encourged you to walk. It does me a world of good and just keeps me feeling better.

I guess it can just affect everyone differently.

Love Ya Girl :hug:

Peggy

Shell Belle
 

Ahhh...girlfriend
Sounds just like us ALL, at least me.
Di is right to work up to as per Togut and Edgelow.
We are all type A++ and want results now.
Dr. Collins says that when I raise my arms there is NO blood circulation from my umbillcal cord down and it's not sciatic but symptoms of due to lack of blood flow.

Dr. Agnew and my doc of PT has me walking, trreadmill and starting aquatic.
I swell and I hurt and throb more so when I try cardio.
However, the PT doc is there to take the swelling down after I do the cardio.
I've been told it's the nervous system screaming, on fire cause it's not used to the pumping of the blood flow and constrictions. And then there is the gravity pulling us down, down down.
We have to retrain our brain and nervous system of the stress and pressure it has been under all these years.
All of oour muscle have to be retrain too
I call it: as if the TWIN TOWERS have crashed down
Pool therapy: No gravity pull there and good for our sciatica and everything.
PT Doc is putting me on an aquatic program per Dr. Agnew for the summer and future.

Contemplating going to Issels treatment center in Santa Barbara when things calm down here.
Another TOSer is having great results with probiotic cocktails and hyperbaraic.
XXOO

Ali
 

STOP!
You are no more of a biatch than I
We are in this together forever, girlfriend.
It makes us crazy we cannot find the help and result we want and need.
XXOO

walking
 

Peggy,
walking is the one thing that is great, I think it is how we appproach it that affects us and we can adapt the way we walk. Lots of endorphins are released in walkers and runners, natures own pain medicine for us...it is like a natural morphine. Just Some baby steps.......

I think I could handle my treadmill better if I didn;tget on and walk for the half hour news show...If I got on for ten minutes twice a day and then work up I would be better. Ilike the theraputic pool taking weight offmy back...but others may find the resistance of water against them irratating. Istarted two laps, and range of motion, and then do a hanging in the water. Shelley you may like this. With noodles under my arms (they have weightless belts, but I feel anxiety in that) I hang for at least ten to twenty minutes in the 98* water. the hanging lets the lower body loosen and heat penatrate.

When I go to leave the poolI feel like a ton of weight.
Why not start walking in a therapy setting, even some heat and massage therapy...no therabands, door way leans, etc..some healing, only ion the pool range of motion, walking and get ouit have a massage and heat applied,

Hope you are feeling better.
You go Peggy, you are our hearo for the amount you walk. We set our goals and dreams on your October walk.
Love
Di

When I walk in

Shelley,

This sounds like a real TOS typical sneak attack.

If I do my recumbent bike which doesn't move my upper at all, at 6 minutes my upper turns red, swells, and feels like I'm going to burst. I have to stop, and how much longer I go equals how much more pain I will have in 6 to 12 hours, and may last as long as 5 days in bed.

When I feel up to a two block walk, (every week or so), I make myself do it, and then that same thing happens 6 to 12 hours later.

It is very frustrating to try to exercise, when you get the swelling, pain, muscle jerks, and NOW I can get actual paralysis (not pain that stops me, but actual paralysis) of the arms and legs that can last up to 4 hours. After the walk, my legs / arms will feel "ropey", and then, within a few minutes, paralyzed. Both of my docs said it IS TOS for sure, and explained something about damaged nerves.

But I'm not quitting. Lately, I've been able to do it almost every day. I've had TOS 4 1/2 years, with my surgery just over a year ago, so it's really WEIRD to be getting these new abilities - however small and slight.

Don't give up sweetheart, but also, don't hurt yourself too much. Only you know what that point is. Go along to that point, suffer "a little" only if possible, and keep at it.

TOSers need to try to exercise to fight for our general health, but not so much that we're in a constant high pain flare. What a dilemma. What a condition, huh?

At least we do not have Hodgkins - for that, we can be so grateful...Yes, this is horrible, but there are worse illnesses, so I say, "thank you God for not giving me more than I can handle." I do not know how the Hodgkins patients face their disease.

So let's stick together and keep talking!!!

PS Lyrica caused me to gain 50 lbs. and my blood sugar to go from under 100 to 400 - diabetes II. I couldn't see. Beware of Lyrica. It didn't do anything for me, either. I prefer Topamax at ONLY 50 mgs., as well as Cymbalta. Just FYI, please talk to your doc and make your own decisions. Research Lyrica here - it's got a pretty bad rap here.

I've been kinda :eek: 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. :hug: 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 :eek:

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 :p 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 :winky: 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. :rolleyes:

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 :rolleyes:
The eye twitches? I find the trigger point on the side of the scalp beside the eye and press to release :eek: 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.
:hug: 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

Water therapy
 

Emg's
 

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

Joh
 

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

dR. jORDAN
 

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 :confused:

I once said dr j was only good for botox, but i have since decided i was wrong. if you have the chance to see him definitely go.