mysterious pain since 2002
 

I'm 30yrs old and for the last 11 yrs I have had chronic pain in my left shoulder. It sucks. The kicker is that NO ONE knows what it is or what is causing it. I have tried everything:chiropractor(who told me I had the back of an 80 yr old man when I was 19),many rounds of physical therapy, acupuncture, deep tissue massage. I have also had every test done twice! In 2004 and 2012: MRI, xrays, nerve tests. I have seen every specialist available to me as well. The last shoulder DR I saw was the first to actually give me a diagnosis. Chronic sub-scapula pain. Well DUH! I have huge knots that run all around my shoulder blade. My family physician who has been helping me by "shutting the pain up with medication" has given me many trigger point injections as well. They work for maybe 20 minutes if I'm lucky. Personally I think just stabbing a needle in the knots and wiggling it around would feel pretty good. Anyway, he stopped filling my pain medication in April because he said he thought I was making up the pain just to score drugs. I was completely shocked! Who the hell would spend thousands of dollars, concoct a chronic pain lie, and stick with it for over 10 yrs??? I'm not stupid, I understand that aside from the knots which can be felt, all my tests have come back showing absolutely nothing. I felt angry and betrayed. Et tu brute? He sent me to a pain guy and he gave me some news that never once even entered my mind. He told me I would have this pain the rest of my life. I cried. And cried. I have always had hope that it would be fixed eventually with new technology coming out every year. He said he wanted to do some trigger point injections w botox. As always, I'm down for whatever and will try absolutely anything. As soon as I got home I researched this concept. After hrs on the computer and reading the comments from people who have used it, I realized I was yet to read a single thing about botox being used in the shoulder. I stumbled on a website from a very accredited neurologist in new york who has written a few books and been practicing for 35 yrs. Very informative website. It was on this site that I read about botox trigger point injections and how the sucess rate is 60% and u need them every few months. Naturally my insurance doesn't cover this, big surprise, but if it was gonna work I will figure out a way to come up with the thousands of dollars this was going to cost. Then the good dr went on to say that in no way should these injections be used between the spine and shoulder blades!!! Which is exactly where I needed it! WTF?? I called this guys new york office (I live in kansas) to find out why. Its because it is incredibly risky area and you can easily lose complete use of your arm until the botox works its way out of your system which takes a few months. It is painful to administer and not even guaranteed to work at all. Not cool. I have a 2 yr old and caring for him requires both arms. I place neurologists higher on the food chain than pain guys. Especially those that are so brilliant and experienced at what they do that they have been published authors, twice! This completely made me disregard a pain guy from podunk kansas. I refuse to give up on finding something that works. Afterall, I will try anything. I will NOT let this pain control me for the rest of my life. I want a job, to contribute to society, and most importantly, get to a point of feeling good enough to take my son to the park. He is just 2 and asks me at least twice a day if mama feel better? Breaks my heart.

Hi, and welcome.

If you've had multiple xrays & MRIs that show nothing, I'm wondering on what the chiropractor based his/her statement... but I guess that's neither here nor there.

Sounds like it could also be chronic myofascial pain. My first suggestion would be to find/see a certified myofascial trigger point therapist -- CMTPT (not just a physical therapist or massage therapist who says they know all about trigger points or have taken courses/training). They do not use injections. Even if your insurance won't cover it, it won't break you. If they can help, they can also teach you what you need to know to help yourself from then on.

Doc

thank you!
 

Thanks you so much for your suggestion! I just checked out the link you sent and everything in the symptoms section I have. Do you need a referral to see one of the therapists?

I think I love you!
 

Oh my gosh. The more I read about this the angrier I become. How is it that of the MANY doctors and specialists I've seen over the yrs not once even mention this as a possibility??? I've been seeing a bunch of total idiots! I really can't thank you enough.

Hi, I wish I could fix you up
 

I have something else to add along with Dr.Smiths comments. You are close to Columbia University Medical center, relatively... I went there for a trial study in the 80's for an unrelated condition. This being a teaching hospital and recommended to me by Mayo clinic was wonderful, for all the years I was there.
Maybe there is a hospital advocacy person, who could get you into see either a neurologist, or what I go see a physiatrist. This particular woman specializes in pain first, and then treats you as a WHOLE person not just the pain issues. She got me taking suppliments, quite a few, a year later I am better.
Do not except a doctor blowing you off, and dismissing your pain. He is not in your body, and that is not the way any patient should be treated. There have been quite a few posts lately about doctors doing this kind of thing. I think they give up and want you to go away, so they stop caring and get you to move on one way or the other.
I would want you to ask any new doctor you see about Ketamine infusions. This has worked for many different pain conditions. It did for me. The military was the first to really try this medication. If any one up in your area knows about it, it would be Columbia, or even Barns Hospital in St. Louis.

You are too young to give up and think you will have pain like this the rest of your life. Fight for yourself, and that 2 year old who really needs you.

I also would have been very angry to have been told " its in your head" just because your tests are negative. Your body is signaling pain from someplace, and no one that I know would make up any kind of condition, and stick with it 10 years. The doctor was nuts to think this.

Kansas isn't the greatest place in the world for good medical care. Call the patient advocasy person at Columbia University med. center. One hospital drive is the address.
I will be here any time you need to talk. I am sorry you are going through all this as such a young age. Don't give up. ginnie:hug::grouphug:

thank you ginnie
 

My biggest fear at this moment is even getting my dr to have an open mind when I come to him with this information. He HATES when ppl do their own research. I just have to convince him to look into chronic myofacial pain because I have done nothing but read about it for the last few hrs and it describes EVERYTHING I have been complaining about for all these yrs. I knew I wasn't crazy. If he even tries to brush me off he's gonna get a nice ** and I will get a new dr. Everything happens for a reason and I'm so grateful I found this website. This could essentially change my entire life.

No referral required.

Don't be too upset with your doctor; most just aren't familiar with this science/therapy (other than shooting drugs into trigger points), even though it's been around since the '60s. JFK had chronic myofascial pain, and it was his personal physician, Janet G. Travell, who did much of the groundwork.

http://en.wikipedia.org/wiki/Trigger_point#History

myofascial trigger point therapy

I don't know what's causing your pain, but your description sounded familiar, so this was just my suggestion. I sincerely hope it works out for you as well as it has for us (wife has trigger point issues as well).

Doc

This is quite common. It usually comes down to credible (in HIS mind) sources, and I have no idea what may or may not be acceptable to him/his belief system. Some of these may help.

scholarly articles: myofascial release trigger point therapy

Doc

:o Thanks, but I'm old enough to be your father and my dear fibromyalgic wife would kick both our patoots into the next galaxy... :D

Doc

You can even try some trigger point on yourself, with a tennis ball a friends' thumb, or anything similar that will work well for you.

Use it against a wall ,counter top or even on the floor..
It might be something that will make a difference for you. And best thing is it is free..
I've done it for my TOS/RSI/CMP issues.

I also went to a chiropractor that did a variety of modalities, low level laser, IF stim, ultrasound...NIMMO.

If you can't fully get all of them resolved a pro should be able to get those pesky ones..

Here's a sticky thread on TRPs from our TOS forum -
http://neurotalk.psychcentral.com/thread125577.html


This is one of my favorite sites to locate TrPs for upper body-
http://www.pressurepointer.com/pain_reference_chart.htm