My history.

I am 33 and I have been dealing with this for 4+ years and have had ups and downs.

I was working at a job where I would spend long days in IT at a computer in a very non ergonomic workstation.

It has been so long it is hard to remember where it started. What I can remember is that my right arm burned and hand felt very cold after a period of time at the computer. After a few weeks of switching things around with my workstation and trying all sorts of other recommendations the burning began to show up in my other arm as well and be more unrelenting.

After about 9 months to working through this it reached a point where the pain was so strong that I could not continue to work. I could not sleep I could not brush my own teeth, I could not brush my own hair because the burning was so intense. My little finger on my right hand was numb and my thumb and forefinger on my left had hand had an odd sensation. Carrying anything or doing something as simple as pressing a button on the remote control to turn on the TV was painful.

During this time I was being kicked around from Dr to Dr. By Workers Comp. All of which seemed to have no idea what could be wrong. The neurologist I was sent to was my age and brand new to the field. She ran every blood test known to man, ordered an emg,MRIs, and all came back negative which she was surprised by as was I especially on the emg with how screwed up my nerves felt. She prescribed PT for "Thoracic outlet?" And placed me of restrictions from working. I could not physically work any longer and the thoracic outlet was actually my question to her based on research I had done. That was what was written on the RX it was also the last time I saw that Dr as I was referred to a rheumatologist, than sent by the insurance company to an orthopedist who observed a reduction in sensitivity but after two visits said he did not know what it was that it might be fibromyalgia and referred me to a physiatrist. The physiatrist said it was not fibromyalgia and suggested more pt as I informed him it seemed to have helped. He also prescribed Lyrica and over time escalated the dosage to 300mg I could tell I was making minor improvements from the rest and first two rounds of PT and the Lyrica helped to the point that self care was possible. WC than did not approve any further PT and after 6 more months of me sitting on the couch I was sent to a month long pain clinic where my dose of Lyrica was increased to 450 and I was deemed to have reached my maximum medical improvement and tossed out of WC. One thing that the pain clinic taught me was that "cardio" was key for pain management and I continued that. I returned to work and while a shadow of my former self was able to be minimally productive enough to keep my job at least now with short days and no OT. I was referred back to the local physiatrist for continuing care.

After about 12 months back to limited work and continuing the extensive cardio I was doing I was able reduce my Lyrica down to 150 mg and that was enough to cover the burning sensation. 6 months later I reduced down to 50 mg however I had to discontinue the cardio I had been doing because of newly developed knee problems. I than removed my self from Lyrica felt pretty good and fell back into my old habits.

Fast forward to today. In April of this year the burning sensation in my arms began to return and I was placed immediately back on Lyrica and ratcheted the dosage back up to 450 which has allowed me to continue working. I also reintroduced the cardio regime not quite as extensive because my knee won't handle it but I do as much as I can and vary machines to make it work. I know find myself again at a point where the burning in my arms is not covered by the Lyrica. I fear I will be unable to continue working and my wife and two children will not be adequately provided for.

I need advice on where to go for a good diagnostic of my condition in the "Chicagoland" area, I live in Northwest Indiana. I would also be willing to travel if there is not a good place local.

find a vascular doctor who knows TOS, I believe there is still a list of recommended doctors on this site.

Thank you for the response. I did find the list of Doctors neither of the two listed in the Chicagoland area are vascular.

"Dr. R Lim
Midwest Orthopaedic Consultants
4545 W 103rd St.
Oak Lawn, IL 60453
Phone: (708)226-3300
Fax: (708)226-3500

Dr. Steven Mather
M&M Orthopaedics Ltd.
4115 Fairview ave
Downers Grove , IL 60409
Phone: (630)968-1881 "

Has anyone used these guys? Would they be the best spot for diagnostics.

One test I failed to include in my summary was that when I was battling this four years ago the Neurologist I saw also ran bi lateral arterial Dopplers both of which had good bloodflow.

You might consider making your workstation more ergonomic.
I use a sit-to-stand desk, so that I can stand at the computer for a few hours a day. It makes a big difference. If you do this, you will need monitor arms to change the height of the monitors as needed between sitting and standing. I have also found the Kinesis Contoured Pro keyboard helpful as well as a saddle chair.
The key -- is to change positions throughout the day.

Where do your arms burn? Is it just the forearms ? Or the whole arm?

I have not made it to the point of using a sit-to-stand. I have made it much more ergonomic than most. Good chair, Extra Lumbar, vertical mice (one for each side to alternate my mouse hand) MS Ergo keyboard. Monitors at eye level. I take breaks often (workrave timer)
As for the burning....

Right now they are burning from my armpit down the underside of my arm to my elbow. Also the top of my forearms, and the muscle on the underside of my forearm. A new thing for me is pain around my scapula. All of this is with the Lyrica in my system. I fear that without it I would be back to not being able to brush my teeth and it seems that I am heading very swiftly towards that even with it.

Stinks being 4+ years into this and not having a true clinical diagnosis. What is worse is I thought I had beat this and had convinced myself I had caused it the first time around by over doing the doorway stretch as was suggested to me by a PT. I now know that was not the case and it seems that a lot of rest, a lot of cardio, and limited computer use is the answer. Told my wife this AM it is about time for some major life changes either by choice now or without one in a few months. I feel terrible for my family as I feel like I got a reprieve for a few years and wish I could have done more with it.

I'm sorry to hear of your ongoing problems. I think you are on to something when you said you need to make a change now by choice or later with no choice. It seems pretty clear from your history that you can't tolerate working at a computer all day. If at all possible, I'd try to make another life change now and hope your body responds as well to the rest as it did last time.

I fell into the latter group and was forced to stop working by my symptoms and was never able to return. I finally had surgery because nothing else had helped to that point, except ice and abdominal breathing, and it's hard to make a life lying on the floor. Unfortunately, surgery only made things worse for me.

I hope you can make a change now that will allow you to avoid a lifetime of pain.

Take care,
Kelly

Hi C-
Dr. Stoxen is a chiro in Chicago that says he is a TOS specialist. His website is very throuugh and he is writing a book about it. if i were in that area I would go see him, and I may someday since I have relatives in chiacago.

http://teamdoctorsblog.com/2012/08/u...-dc-chapter-1/

Surgeons:
How far away are you from St. Louis? Dr Thompson is one of the best in the country-Also this list mentions Dr. Pearce -vascular surgeon At Northwestern
University.He's in the consortium so that means he knows about TOS.
http://surgerydept.wustl.edu/TOS_Consortium.aspx

For PT: http://www.instituteofphysicalart.com/ipa/referral/list
There are several in Ill. so you should try to check them out online to see if they have knowledge of TOS.

" I returned to work and while a shadow of my former self was able to be minimally productive enough to keep my job at least now with short days and no OT. "

I can so relate to this right now...went from typing at the speed of light to barely being able to type this without screaming.

Are you workers comp?
It's sounds more neurogenic the vascular. You may need to consult out of the area for the best help.
One thing that may be a start, I did not go a surgery road. For a dozen years I have has a physiatrist for maintenance. My meds, PT, etc.

I have a pain management anesthetist for trigger points and epidurals. With that help I work PT time while on disability. My TOS is a secondary injury to lumbar and sacroiliac major pain.

It means a lot goes undone, but I am not a type A or perfectionist. But, I can at least contribute to income.
Hope you find relief and answered.

Ps.the nerve pain ds had was gone from ACDF surgery for herniation, his TOS pain remains.

I am new to TOS also. I do not have an official diagnosis. My chiropractor is referring me to a neurologist for "nerve testing" The worker's comp, Independent Medical Exam (to see if I am faking) Dr., confirms that I have nerve involvement and that I should be seen by said neurologist to investigate the brachial plexus.

I have learned that Drs do not like a patient to tell them the suspected diagnosis. It seems like they will find every other cause but what you suspect. So, only give your history , and of course, every symptom that makes you suspect you have TOS and your suspected causes.

It sounds like the neurologist already suspected Thoracic Outlet as the cause of your suffering. She sent you to physical therapy for it. I would try to get a follow-up appointment with the same neurologist.