Not much new TOS-wise

I have gone back to work part time, and experience flareups of TOS nervy pain I'd say a few times per week.

My discipline of doing p.t. stretches at home and sticking to an anti-inflammation diet went out the window several months ago. Therefore, more symptoms have been cropping up over the last few months, at an increasing rate.

You would think that since I've lived through these TOS issues for so long, and then found what worked to reduce my symptoms, that I'd just go back to doing what I know to do-right?!
Except it's not so easy...the discipline...doing the no-fun, painful stretches when I could curl up with a book or bake something. Sticking to the diet that had me 20+ lbs lighter than I currently am (and feeling so much better)...why not *just* go back to that?

I suppose I've been choosing the easier route, casting aside discipline, indulging myself in carbs and Netflix marathon days because it has felt mentally too stressful to stick to the highly methodical way of living that had proven helpful. Dealing with some personal life issues left me drained of the will-power to keep juggling so many things.
I just wanted to let my guard down. Relax.

That was six months ago.
Old habits are back, along with old aching pains.
TOS does not care if I need a mental break from its constant nagging.
TOS does not care if I don't want to carry its baggage anymore.
TOS is with me, and the more I try to ignore it, the louder it screams for attention.

So pay attention I must.
By deciding to get back to what I've learned works for me.
Stretching. Staying active. Enough sleep. Clean diet, low carb, less caffiene.
Giving. Finding fun and joy, having dreams, moving forward instead of parking in one place (the recliner).

Here's to a better 2016 for all my fellow TOSers...one day at a time!

Gentle hugs~

Having a moment...

I'm having a moment tonight.
words are replaying in my head I heard earlier - "this journey is about the long haul for you".
...the long haul.
I've been so fixed on whats right in front of me, trying and doing new things
that when I stop to take a look at the long view
it feels so overwhelming
the thought of having to manage TOS the rest of my life.
makes me feel the words of a poem.
I sit here thinking-I really don't want to do this, don't want to live life always fighting back the inevitable.
But whats my choice?
Go back to how things were before I decided to become a project for you all and hack at the things weighing me down, change things up, and try to be better?
Go back to being miserable and frozen and unplugged from life, angry all the time?

With all my efforts, I'm still just on the edge of this thing-
I had hoped to 'get past it.'
Now, it seems just turning down the volume of the pain is the most I can hope for.
I want to be free of TOS, but these are the cards I've been dealt.
Having to give up on things I wanted to do with my life-knowing they will never happen-
damn.
I'm sick of myself, sick of how I have to cope.
I don't think I can do a long haul
I've always just done short hauls
and then gotten tired and afraid and sat by the side of the road
and gotten fat and weaker
I'm so afraid of whats ahead.
I hate this.
The easier way is calling my name,
take the pills, stop fighting so hard
relax
eat, drink, stop thinking so much
check out, numb it, let the TOS take over instead of trying to push it back
just forget the fight.
If its gonna be a long haul-if I'm never going to get past it and pain is always going to chase me-
whats the point...get stronger-for what?

~ ~ ~

I see my fellow TOSers nodding their heads.
I know you get it.
I wrote this a year ago.
So much has changed since then for me.
All because I chose to live better, to start paying attention to what I needed in order to live as well as possible with this thing.
It continues to be a lot to juggle just to be functional, but it's worth it to live and not be sidelined by the pain!
I hope you will be encouraged that it is possible to live well...even with TOS.

Gentle hugs~

Another Day in my life with TOS

I roll out of bed and my first thought is about the list of exercises I have to get through before I can do anything else today.
The exercises take about 15-20 min, twice a day, every day.
I look around for the piece of rubber tube p.t. gave me for the jaw exercises.
The list of exercises is on my cell phone...where the hec did I put it?!

Welcome to my new normal.

I mentioned my dog in the last Day in my TOS life post.
My sons family moved  from out of state to live with us for a while. They settled closeby and unfortunately the grandkids are allergic to dogs. So now I have six chickens to let out and feed and water (and talk to) every morning.
Then it's time for green tea and breakfast.
I'm loving eating cleaner, feeling a lot lighter and way less achy than I felt a few months ago.
Todays breakfast: two poached eggs (farmers market, free-range) on a plate of cooked chopped spinach, one slice of Ezekiel bread toast, with real butter. Also a glass of water.  Yesterday, breakfast was a smoothie of fruit, ground flax, almond milk, protein powder.

I have errands to run, so I put a citrus green tea bag in a 64 oz. water bottle and fill it up to take with me.
I stick keys in front pocket, phone and wallet in back pockets, shove purse with emergency meds and a snack for lunch  (apple, Larabar) under car seat and I'm on my way.
As I drive, I notice I can reach to push the button to change the radio station without a zap going down my arm. Those nerve glides must be working.

I'm trying to stop the habit of always bending my arm up, curling my hand in to avoid nerve pain when I walk. I remind myself of this as I walk several blocks. I notice that it's ok today.  I'm walking normally, not pushing on the back of my head or neck, not curling up my arm, just plain ol' walking.
That's pretty exciting for this TOSer.

As I drive home, neck pain is starting to kick in a bit, up into my ear. I tilt my head toward the ear that hurts and turn up the volume on the radio for distraction. Once I get back home, my priority is heat for my neck to help relax the muscles that are overworked and causing the knife in my ear to dig in. Breathe, sit. I can unload the car in a few minutes.
I used to pop 800 mg ibuprofen out of habit when this sort of pain cropped up. But it really does nothing for the nervy pain, and I've realised over the last few months that so much of my pain is related to muscle tension and spasm. If the pain does not let up enough to be bearable, I'll slap on a lidocaine patch or rub on some prescription compounded pain cream, and drink some more water. Then it's time for dinner, which has been super easy since we got a grill (meat, veggies-done). In fact, my daughter who has TOS and I put the grill together...took us three hours. Picture it- Two TOSers put together an 87 piece Grill. Fun times.

I take veggie scraps out to the chickens. I pull some weeds on my way back to the house, which leads to being in the garden pulling more weeds and picking green beans; which I carry in the front of my folded-up tshirt since I wound up in the garden unprepared for picking, as usual. Arms throb a bit from the weed pulling.

The grandkids are over for a couple hours. The 18-month old runs in and immediately holds his arms up and grunts for me to pick him up. The kid loves his food. I bet he weights 30 lbs. I can never resist that sweet face. I pay for picking him up, every time- with a knife in my shoulderblade that aches down my arm as the night goes on. But I can not allow TOS to take picking up my grandkids away from me. I try to be as careful about it as I can, lift with my legs, but after years of limited activity and restricted lifting it's going to take a while yet to gain strength, one day at a time.

It's evening, time for pills. Just supplements now-magnesium, vitamin d, fish oil, tumeric, B complex. I have been off all prescription meds four months now, and while I will fight to stay that way, some days I'd love to give in and pop a vicodin or something for the pain. Then I remember the side effects and decide to rub on some lavender essential oil and magnesium lotion and re-heat my heating pad for my neck in the microwave.
Time for a snack and more water. A square of dark chocolate, or ice cream made with just frozen bananas, or popcorn with olive oil, sea salt, and nutritional yeast flakes (It's kinda cheesy tasting. Don't knock it til you try it).

I watched a tv show and now its 11:00 pm and shoot, I'm SO tired, but I haven't done my second set of p.t. exercises. So I take a cleansing breath and just start doing them. I start squeezing my shoulder blades and counting, turning my head, gliding my arms, tuck my chin(s), do the ten other things on the list, then fall into bed feeling right with myself for sticking to the plan. Good job me.

I still get breakthrough TOS pain, and the challenge on those days is in my mind. I have to stick to the plan and not let the pain suck me back down and hold me there in it's grip. It sure can be a tough to tell my mind to shutup and choose to focus on things that will build me up. So tough.
Sometimes my mind and the pain work overtime on me and the tears flow.

In those moments, I choose to remember an inspirational quote, "Tears are like a river, they flow through you, to cleanse you, and to carry you someplace new."
So I take a breath, let it out.

I look forward to seeing more new places.

Gentle hugs~

My assessment of physical therapy, so far.

My ear and jaw pain was gone for two days. I say 'was', because right after going to p.t. the other day, the pain was back. Seven hours later, the feeling of a knife in my ear, head, and upper trap is still there. Add to that a discussion about nerve gliding and working on the stiffness in my neck/spine leading up to eventually doing the arm bike (which I loathe from previous experience) and the rowing machine to gain strength. A wall went up in my mind as soon as p.t. mentioned this, even though he tried to talk me through it.
"I wouldn't take you through what we've been working on to calm and normalize things just to throw you on a machine for you to flareup, we're going easy. But still, we are headed that direction."
I'm so nervous about that. I'm sure it showed on my face.

He patted me, said the return of the pain was just temporary.

He talked to me about the pain cycle a bit.  Using E-stim is supposed to help temporarily break that pain cycle, hopefully long enough to give me a chance to be more active, gain some strength.

My assessment of p.t. at this point-
Sometimes I leave p.t. in more pain than I went in with, which is a downer.
Having that pain several hours later, and the next day- is a bummer.
Feeling like I'm at the mercy of the pain is depressing.
I want to believe things will get better.
Wondering if maybe it -"just is what it is", and I should stop torturing myself.
And then...I wake up one day without pain, and that is a good day!

Plus, I have to admit, my ear, jaw, head pain is not constant like it was for a long time. Since starting p.t., the pain comes and goes now-with no predictability, but its not all the time--a definite improvement.
So I'll keep doing all the exercises and stick with p.t.

I hope my experience with therapy will be helpful and give some hope to my fellow TOSers...because we TOSers need hope.

Gentle hugs~

5 Year Ribaversary

I have not blogged about my TOS journey recently because I've been going through the rounds of doctors, once again. I was hoping to have more to report by now, but I'll get you caught up The Days of My TOS Life. I have a new family doctor, so I had to fill him in on my history and recurring symptoms.
 He sent me first to a new pain management doctor-who gave me a list of my treatment options: 1. Do nothing. 2. Radiographic workup (tests & scans). 3. Physical management, (physical therapy, TENS, OMT-osteopathic manipulation, home exercise program). 4. Medication management-(nsaids, antidepressants, muscle relaxants, anti-convulsants, opiod, topical). 5. Epidural steroid injection. 6. Medial branch block. 7. Radio Frequency Ablation (burn the nerve endings). 8. Spinal cord stimulator, implant. 9. Surgery. A pretty depressing and scary list. I left that appointment feeling pretty deflated.

I asked for trigger point injections with lidocaine, one at base of my neck, and one where it feels like a knife it sticking in my back. The doctor informed me there is a risk of lung puncture with the deep shoulder blade injection, so I chose to just get the neck injection, which hurt a lot for two days after, then helped relieve pain for about 10 days. It's back to the usual tense, sharp pain now.

 I revisited my new family doctor, and after chatting, he seemed to agree that pain mgmt doctor was not the best choice for me. I was prescribed gabapentin and referred to an ENT-ear nose throat specialist. I'll backtrack a bit here to explain why he referred me to an ENT. The most painful symptoms that led me to being dx with TOS and having rib resection were neck, jaw, ear, head, arm, upper back/shoulder blade pain. Surgery was successful in alleviating the arm pain for a while, but most of the pain has returned.

So, the ENT examined my ear, numbed my nose/throat and scoped my nose throat-took pictures even- all normal.
He thinks I feel a lump when swallowing because my muscles are very tight, spasming, and there is a hyoid bone in your throat and my muscles are too tight around it. The ENT's thinking is that my symptoms are possibly from having muscle removed when the rib was resected. He referred me to a physical therapist who has had great results with TMJD,  and head/ neck injury patients.

 My therapy assessment was a week ago. The therapist seems knowledgeable about TOS. He believes exterior muscles in my neck are overcompensating, and interior muscles are lazy and not working properly. He also mentioned that I healed post op with tight pecs and rounded forward shoulder, which pulls on muscle in shoulder blade. (It IS all connected!) He commented he thinks the origin of my pain may be located at the level of the cervical rib, where the wad of upper trap muscle is that gives me fits . I decided to hold off on starting the gabapentin until I saw what p.t. was going to be like.

I had terrible arm pain for about 12 hours after the assessment. The first therapy session was 24 hours ago, and during therapy all was well...lay on heat, a little work in/under shoulder blade, some massaging type work on neck and head. I was given my first 'exercise' to do at home. I am to lie flat, and slightly tilt my head up and down. The tilting movement does not start in the neck-at the base, but up higher. I'm supposed to barely tilt my head up and down a half inch, but focus on the movement being up higher than usual. (I wonder how many calories that 'exercise' burns?)

I left feeling good. I ran an errand, and on the drive home an hour later, I pulled over to pop 800 mg ibuprofen and cried the rest of the drive home because my arm, neck, ear, back hurt SO much. The paring knife in my back changed to a meat cleaver, and shooting electrical jabbing pains were up my neck and head, down my aching arm.
For me, when my pain level ramps up past 4-5, my brain does not function well. I'm grumpy, touchy, unable to make clear decisions because all I hear, feel, see is pain-pain-pain-pain. It's like the pain short circuits my brain. I hate that.
I am curious to see what the therapist has to say about my reaction to the first session. I have gone to many rounds of therapy, chiropractors, massage therapists. And I've made myself stick with each one for weeks and months, pumping machines, using thera bands, stretching, enduring myofacial stretching (painful!) hoping for positive results. Mostly, that all just caused me a lot of unnecessary pain.
That said, I have hope that this p.t. knows TOS and the accompanying muscular issues, and may be able to help me.

Now, I just have to get past the mental hurdle of the fear of increased pain (from my past experiences with all the p.t.) so the current therapy stands a chance at being effective.

For me, that includes choosing to have hope that life will get better, that pain will decrease, and function will improve. I will do my best to fight off the urge to feel like a TOS victim. I will continue to look for ways to be a TOS survivor....along with all my fellow TOS survivors. I love and appreciate you all for your genuine understanding, and the way you show compassion to others who are hurting because you DO understand.
 My heart goes out to each of you as we live this TOS journey together.

Gentle hugs to each of you~

So many questions

It was a lovely morning, sipping hot coffee, doing some reading, enjoying the quiet. Then I stretched. Stretching is an autonomic response, like yawning, tough to control when the need hits you. I moved the wrong way and muscle grabbed onto nerve on left side of neck at the base and pain level shot from the usual 1-2 I'm used to, to a 9, which makes my brain freeze. I can't think straight, I'm in restless panic mode, even though I've been through this locking up so many times I know what to do...get heat pad, swallow muscle relaxer & pain pill asap, hot shower, lidocaine patch, try to relax, even though with every breath I can feel muscle raking over nerves, muscle spasming, tightening, stiffening.
I pace the kitchen floor holding my neck, massaging, trying to push the cervical rib forward hoping that will stop the sharp knife in my back pain, which usually works for minor pains, but not this time. I need my husband to tell me to get in a hot shower, because I'm stuck in a panic loop, pacing and muttering "I don't know what to do...I don't know what to do..."
I do all the things I know how to do to try to alleviate the pain, but still it jabs, burns down my arm, throbbing. I pick up my cell phone and lying on the couch taking shallow breaths, I tap out a plea to my fellow TOSers...asking what helps them with their pain. They respond with helpful ideas, encouragement, even possible food choices to reduce pain. Pickles...who knew!?
Still frozen today, had to call my job to let them know I can't work tomorrow, again. I've been thinking maybe I am not reliable enough any more with this unpredictable cloud of TOS hanging over me. I think I have a lot to offer, but I never know when symptoms might shoot from a 2 to a 9. The brain-lock I had yesterday scares me the most, that I just couldn't think straight overcome by that sudden pain.  Lots of thoughts and questions running through my tilted head today.
Looks like heat pad on a timer has been off a while. I'll turn it back on and go think some more. Much love and appreciation to all my fellow TOSers.

Why is is called "The Waiting Game"?

...because it is not a fun game.

Once again, we're waiting on referrals and test results.
I wish there were more to report, but those of you dealing with TOS know all to well the run-around we get when we're trying to get answers.

Meanwhile, we have no choice but to wait and deal with the pain that affects our daily lives the best we can.

I am doing well. I had a flareup a couple weeks ago when I went for pool therapy for my hip and the therapist had me in the deep end with my arms up on a floating pool noodle.
It felt fine while I was in the water...but on my drive home the neck and arm ache started and I was kicking myself for putting my arms up in that position...and for two days on ice and pain pills I continued to kick myself.
(The therapist puts me in a floating vest now, no arms up!)

Stay tuned for reports on how my daughter is coping eight years after rib resection with recurring sympotms and what the second opinion doctor has to say.

We'll keep putting one foot in front of the other on this journey...with TOS.

Flareup's are so inconvenient

I recently returned home from traveling over a thousand miles to see my grandsons, sixteen months and newborn. It wound up being an extended trip with lots to do. Unfortunately, I did not listen to the TOS advice I give to others, nor to the signals my own body was giving me.

I over did it.
There was so much to do, much that I do not normally attempt.
Lifting, carrying, bending, reaching, playing.
I just couldn't resist. It was all such fun!

Until that darn pokey, pinchey, pulling, needley, burning, jabbing, searing pain from my ear and neck down through my traps and into my arm. It got really bad.

A doggone flare up.

Just when I needed to be able to make the most of what little time I get with my precious little guys who are growing up so far away, that dreaded irritation and pain surged intolerably.

I had to employ every trick and tool I've learned to fend off a plunging depression.
I admit, the pain pushed me to an emotional edge. I vented a bit, with tears.
Pain has a way of purging the truth out of you like nothing else can.

I was sad, knowing I needed to take it down a notch and slow down, even though I didn't want to.
But I also knew I would be no good at all for anyone if I didn't take care of myself and pay attention to what my body was telling me.
I heated up my microwave rice pack, dropped in a few drops of lavender essential oil, took muscle relaxer and pain pills, got out my mp3 player and listened to some Ease Pain sessions, then some light piano music.
I had to make myself rest.
I proposed my problem to the facebook TOS group. The responses were wonderfully warm, supportive and helpful. Exactly what I needed, a word from people who understand because they've been there.
"Get down on the floor. Let the kids crawl in your lap, no lifting, do the best you can and let the rest go."

That was wise advise indeed for this TOSer.  I tried to heed the advice, though it was really hard for this new grandma to always comply.

If you know what's good for you...

Why is it we resist change, even (sometimes especially) when we know it's what's best for us?
I have posted tips here, things that may help alleviate some TOS symptoms.
Do I follow my own advice?
Mmmm...not always so much.

I want to do Feldenkrais lessons daily-but they are so long - 45 min.
I sit in this chair that is so terrible for my neck and back. But it is warm and comfy and closest to the tv.
I do not drink enough water.
I am looking down at my laptop typing at this very moment.
I put my hair up in a ponytail yesterday and my neck felt stiff, unbalanced, and today hurts.
I have not done rom exercises in forever.
I've not been clipping the dog's leash on my belt, and she jerked my arm the other day, the muscle between my shouderblades in back is still recovering.

It's no wonder I fear I'm always on the brink of a flare up, an episode of debilitating pain.
I want to live as if this TOS is just an occasional visitor instead of a permanent unwelcome resident.
And I guess I do live that way alot of the time.
"Slow down." "Don't do that."- echoes in my head.
I keep going, ignoring the nagging of what I know is good for me.

And I know what is good for me because I have spent so much time reading about TOS and treatments, etc while I have been unable to do anything else, saddled by pain.

So when TOS eases up, I try to forget it and all the TOS rules.
I know I'm not doing myself any favors in the long run.
Stupid TOS.

And we're off!

Happy New Year to my fellow TOSers out there.
I hope it will be one of minimal discomfort for us all.

So far in this new year, that has not been the case for me.
Since my right rib resection a few years ago, I do have many days of little to no pain.
But there is always this dark dreadful little cloud that follows me around.
That question- Will today be the day I move the wrong way or over do it?
Will I flare up and be sent into the familiar cycle of inflamation, pain, spasms, aching??



Indeed I am dealing with a big flareup right now.
Quite frustrating on top of all the things I try to juggle hoping to feel better for longer stretches at a time.
My microwave rice packs have been my friend the last several days.
Lots of water, push myself to keep moving-even though I am twisted and bent from the muscles locked in spasm.

My left arm throbs.

That's what started this whole crishendo of muscles and nerves misfiring.
I was half awake early on the last morning of 2011, and I began to stretch, and twisted my neck in just the wrong way...which is easy to do with hunking cervical ribs in the way...and shoot if I didn't know immediately I was in for it.
Sigh.
So it's been ibuprophen, eating light, lots of tea and music to lighten my mood.
Hot shower, trying taking some Omega 3's for inflamation, went on a little ride in the car-with someone else driving.
Back home to lay flat.
Resisting muscle relaxers and heavier pain meds if I possibly can this time around.
I hurt-but the meds tear my insides up.
It is really work to not get sucked into the pitts when youre in pain.

Just another day on my journey...with TOS.