Hi everyone

Just thought I'd post a quick note. I haven't been on in a few days because I've been in so much pain and just not handling things very well. I saew the neurologist on Thursday and he also agreed that I'm not making much progress. It's been 3 weeks and really no improvement. I've had more severe arm pain recently and trouble doing just about anything. My elbow is just ...well..I'm lost for words on that one. I have trouble sprinkling salt on food and even brushing teeth. So, anyways, the Dr came in and grabbed me under the arm around the arm pit. I YELLED OUCH! He said uh huh..yep, ok. Then he had assistant prep me for injections..once again. But this time...not in the neck. He said from holding my arm out at work all day and because my neck is so bad ...it is putting strain on the other muscles that are in the arm pit which control a lot of your arm function. So, he decided to do some trigger point injection in my ARMPIT! OH MY GOSH! Ok, I have to say...I have yet to experience anything that painful. That was downright AWFUL. I tried so hard to be strong and not cry and look like a whimp...couldn't do it. Even though the Dr and assistant said I did GREAT! They both thought I was really tough and can take pain rather well...(if they only knew). Well, it took me til the next day to get normal again. I was throwing up, crying, was in shock..couldn't even speak the entire night. I lost it! Then Friday I had to take my daughter for some testing (She has cerebral palsy)...this was an entire day of neurological testing which required me to SIT all day in a chair. Oh that was fun. Then to top it off...we got hit with snow and sleet. I had to drive home in an ice storm (3 inches fell already and it was coming down hard). I normally can't drive with both arms on the wheel...I had no choice this time. I couldn't drive over 30 mph the entire way...then missed my exit and had to go way out of my way to get home. It took 2 hours! Normally takes 30 minutes. I got home and cried and cried and then cried some more. This morning I was back to throwing up again and cryng in pain. I just can't take any more of this. I tried advil, heat, ice..you name it..nothing works. I feel like I'm going through all this and getting no where. I honestly don't know how much more I can take. My neck flared up so bad from the drive yesterday that I can't swallow...constantly coughing ..it's just bad. I don't want my kids seeing me like this. I"M SO DARN MAD! I can't stop crying and I hate crying in front of them so I have to go to me room to hide. They all know that mom is a mess. THey are trying to help. My husband is even seeing it now. I think they were all in shock over the armpit injections. Think they felt my pain. My husband cooked dinner and did my laundry. The kids shoveled the driveway. It's been amazing. They have been great. I just can't stand feeling this way. It hurts in every way shape and form. I asked the Dr how long it's gonna take to get better....he said "no telling". he said i'm a real mess, totally abnormal and everything is out of control. He has no clue as to when I can even start therapy and when I can return to work (if at all). Then to top it all off..the insurance adjuster for wc called and said my claim was denied. "They don't have enough information and they are working on time" . THey have 21 days but already denied it and have absolutely no records yet. He said they have nothing to back up my claim. "they haven't received any medical records yet but they have to look at the time frame and just deny the claim" They just received my release for records Monday. THe claim was denied Wed. How pathetic. Then the next day, I got a letter from my company saying I have 12 weeks of unpaid medical leave and they have placed me on it. After that, they will not hold my job any longer. Anyways, I have a meeting with my lawyer on Monday. I called him immediately. I am such a mess...a new house, no income, 4 kids, a house that needs work no less, and I feel like crap every day. When does it get better?

Well I'm heading back to the couch...can't sit here anymore tonight. Take care all and will be back on tomorrow.

Good night

Momz,
This is not an easy road you are traveling, it is none one with answers or projection of rosy days. Unfortunately it is one that is work to rebuild a life for today. Yesterday is over, don't know exactly what tomorrow will bring, but for today, we live. Live with pain, limitations, altered life, losses, not of it fair......

I think everyone here totally understands how the hopeless, helpless feelings will control us. But, we have to take care of our self the best we can, by not giving up or giving in. That is so easy to do,

The best thing I ever did for myself when so overwhelmed was to see a psych that treated chronic pain patients. It took me a year to sort out, get through losses, help myself. The doc helped me to rebuild who I was. I was able to contribute back to the home by going to school and using monies to keep the home going while fighting workers comp. I filed for social security and was awarded that....

I took baby steps to get through rough days with his help to help me to learn how to deal with conflicts, find the answers and survive. I learned biofeedback, I learned how to manage decisions I would have to take, even if he ahd to tell me my limits and how to understand I could only do what I physically could.

I know that in my grief, I need help, time does not ehal, things do not get better, we can beat our self up over a lot of regrets, guilt, and just trying to be the one everybody depends on,.....

The people that have the must responsibility placed on them in life seem the ones that have the double dose of problems.

I can tell you my plan for managing my live before things tear me apart.
My PCP prescribes Lexpro, help me slow down and think more clear headed without my mind fretting 24/7. I went to a support group, but there is too much grief, I will see a counselor that deals with people with life crisis robbing them of a quality of life. I have a few weeks left off work to take care of me.

I am going to place a limit on how long I will allow grief to consume me, and then put a perspective on it, for the sake of not only myself, my family.
I have money problems, legal woo's with the car accident suit, my younger son's heart problems, and seizures, the older ones back, TOS and pituitary tumors....

With your situation you have your daughter that needs to rely on you, but you have to help yourself, NOT give up, and to get some help, in what ever means you can.

Momz, there is light at the end, it maynot be the end we want, but it is a good ending that we make it. Positive thinking, don't give in to hopelessness; call the pcp for thoughts on a emd to help you focus, maybe make a finger walk through the phone book for a good support person,
They may not pay the bills, they may not have the answers but will help us how to learn the answers to a quality life we want to regain.
If you have not consulted with an attorney yet, it is the time...Don't wait for w/c making decisions.

ALSO,
I get a gut feeling your doctor is treating your symptoms for his profit of the cost, that he is not dedicated in your quest to support against workers comp, to diagx and treat you effectively.

You need a dedicated doctor from the start. For one thing, injecting into the armpits is DANGEROUS, no matter what the pain, the trigger is from the mid back section of the winds, the pain is in the armpit...BUT THIS CLOSE TO THE THIN WALL CAN CAUSE A LUNG COLLAPS!!!!!!!

I would never allow a doctor to inject that area. We had gals getting EMG in the area of the long thoracic and the doctor deflated a lung OUCH! and complications!

You need a different doctor, I would call Dr Scott Fried to be your best allie in this situation and treat you, and understanding of TOS!
www.nervepain.com He is near Plymouth meeting mall. I know drives are tough, but he is the closest specialist I can think of.

I am praying for you, sending hugs, and know that we understand your pain and wish we could take it away.
We are all hear for you
Di

I agree with what Di says -
I'm kind of wondering about so many injections too {at 1000.00 a pop?}
Is that all he does- give you injections?

Did dr say anything about his change of his report or about billing pvt ins vs WC?
Didn't your doctor give you any other restrictions or limitations besides just taking you off work?

mine wrote " no use of upper extremity" at first - but I was allowed to drive to work?? & and open the heavy doors at work? but I was assigned to patrol the parking lot for 2 months.
then my dr relaxed the restrictions a bit more - so i was able to do some clerical /office /paper handling - every other hr-- but that proved to be too much and I relapsed.
So then I was off work-
At that point i was really hurting - couldn't pick up a pan to cook, couldn't load the dishwasher or do any laundry- about all I did was drive to PT and sit at home with ice packs on my arms for 2 months or so.{plus the home stretches from Sharon Butlers book & website}
This was still when docs & I thought it was only RSI - later was when i read about TOS and found the forum.

Are you trying any of the simple posture/relaxation things we have suggested?

laying out flat on the floor or even the bed for starters.
15 -20 minutes a couple of times a day- i can't tell you how much this simple thing helped me.
putting the arms out slightly away from the body- just at a very small angle to start with and slowly move them out from the body but not to cause any pain only a very small stretch.
then as you lay there just relax and do the diaphragmatic breathing {not upper chest breathing}

And a good PT should be able to do some very helpful ultrasound/heat/massage - maybe even some triggerpoint therapy to help release those muscles- NOT any weights or hand bikes or stretchy bands!

whew this is the longest post i typed in a long time.

I hope your lawyer suggests getting another docs opinion/referral - sometimes they have some preferred docs...

I also have to agree with Di and Jo Both...
Your Dr should be suggesting some other types of interventions such as PT. It sounds as if you may need a Physical therapist that is trained in TOS to work on those muscles to get them to loosen up for you a bit.
It seems all he wants to do is injections and then send you on your way. As Di said giving injections under the arm can be very dangerous. If I were you I would ask your lawyer if they had a neuro they could refer you to that specializes in TOS. Di gave you a good recommendation it may be possible that your attorney can get him approved to be your primary. A good TOS Dr is always in your favor and one never knows if they may need surgery down the road and if this happens you will need a specialized TOS surgion.
Try to do the stretches that Jo has told you about and don't lift anything heavy!!! Weights are a NO, NO....
Take care and I do hope that this starts to smooth out for you a bit... We have all been there and some are still going thru it... It is a very difficult road ahead and unfortunately it is one way... The bumps should smooth out down the road though...

Many Gentle Hugs
Dawn

Hands on Myofascial Trigger Point Therapy coupled with a home stretch program can be of great benefit for those with TOS.

There are 18 muscles connected to the scapula. They work together in a functional group. If any of these muscles have an active or latant myofascial trigger point each can refer pain to other areas and inpact function.

Tight muscles can impinge blood vessels and nerves. This results in limited range of motion, weakness and or pain.

If you have chronic pain you do not sleep well (nonrestorative sleep), therefore you do not digest well. If you do not digest well the body and brain get out of sorts.

Injections in the arm pit were most likley intended to release trigger points in the subscapularis muscle on the under side if the scapula.

The subscapulars is the root of the typical frozen shoulder. However, this muscle should not be treated without treating - via soft hands on release of the other 17 muscles first.

Trigger point Injection without stretching the muscle immeadiatly after is a mistake.

Take a look at this web site to look at pain referrals of specific muscles with active myofascial trigger points. See if some of these match your problems.
http://www.triggerpoints.net/_sgg/m1m1_1.htm

Contact me if you are interested in more information.

Best wishes.

One other thing...do you have any meds for straight pain??? Advil is NOT going to do it for you. Many of us take muscle relaxers and/or opiate based pain meds (I am on Vicodin and opana) to stay sane....you cannot help yourself when you are crumpled up in pain. PLEASE PLEASE ask for some.

My personal opinion is that If your doc has not give you a prescription for some he is VERY remiss. If you have not asked for any, FIX THAT!!!

Johanna

Thanks so much for all your support. I feel like such a pain. I know all of you are either going through the same or have been through it all. It's extremely tough and I am typically a strong person but this is TOO MUCH! I never would've imagined all this in a million years. Way more than anyone should every have to go through but I guess it happens. I don't know much about all this and have been trying to figure it all out. Dr's are not very good at explaining things in ENGLISH! All I keep getting is how bad I am and how "a mess my muscles are". The neurologist I've been seeing is suppsoed to be one of the best around and also the best in trigger point injections. He does seem to be good at it but it just doesn't seem to be doing a whole heck of a lot. But then him and his assistant tells me that I've got a lot going on and it's going to take a long time. The Dr wants me to have therapy but he said not yet. He said my muscles are jumping so much (which WOW they are) that any stretching and therapy would be bad at the moment. I could end up worse...which I DON'T want.

The Dr told me no working...no nothing. I'm to be taking it easy. I can't do much anyways. So that's a no brainer. I have been going along with what he's been saying and doing but I'm having second thoughts now. It just hurts too much and I don't see any real progress. I tlaked wiht my husband and he agrees that I should probably seek out another opinion. I was diagnosed with the TOS from another Dr from wc but he didn't want to prescribe any treatment because I was already getting it from the neurologist.

I just can't drive far and these Dr visists are getting EXPENSIVE! THe lawyer that I am seeing for the wc knows the neurologist who is treating me and says he's one of the best so now what? I jsut don't know who to see and what to do at this point. I just want my life back and I don't forsee that anytime soon. I have lost 10 pounds from all this. I have a hard time eating, swallowing, and I cough and have trouble breathing. The Dr said they haven't even got to those muscles that are in bad shape. OH MAN! How much can one person take!!!!!!!!!!!!!!!!!!!!!!!!! YIKES!!!!!!!!!!!!!!!!

There is so much I want to do and can't. I guess I should see another Dr and get another opinion but who do I see? I need someone who takes my insurance because I'm now fighting the wc issue. I can't afford out of pocket visits. I can barely afford the copays which are $25 a pop.

If I were to see another Dr...do I seek out another neuro, or an ortho or what about vascular surgeon? Not sure where to go.


Again, thanks for all your help and support. I wish I could spend more time talking with you but I have a hard time typing and then I just spend so much time sleeping and crying that it's hard to pick up the phone. Also, every time I hold the phone my hand and fingers go numb. I just can't win. I tried stretching today but it hurt so I stopped. Well I'm gonna go for now and find some chocolate...maybe that will help.

Thanks Jo but unfortunately I can't take ANY pain meds. I have an allergy to just about everything out there. Even with 2 c sections all I took was advil or tylenol. It stinks! I am allergic to everything...I'm truly a mess.

Momz- I posted on the other thread, too....ask for a TENS unit. A little home version of the electro stim you get at PT or at the Chiro....

Good pain releif for many- no medecine. Use it with a heating pad on top. The best days for me are when I leave it on low and for a long time on the tightest muscles. It really helps. I have been meaning to ask for a scrip for a home unit and keep forgetting. Now I only get it at PT and Chiro.

also, have you been to a chiropractor yet?
or PT?
can you get to a hot tub?
you can also try focused relaxation...I have a write up for that somewhere I can send you. Are any of the stretches from the book I sent do-able?


Johanna

Momz, I have no better suggestions than those that have been given, but just wanted to say that I am so sorry you are suffering so. Adding financial woes to TOS just adds more stress which makes the pain even worse. I'd make sure that the doc knows that.....and that the WC company is blaming his inadequate documentation for their denial.....remind him of that and that he is billing your health insurance for treatments which he knows should be nder WC (that's FRAUD). Insist/demand/beg/cry for a tens unit....they really do help.