ask: I have been experiencing upper extremity pain, tingling and trigger pionts in my upper back. tons of doctors, and different diagnoses.
I have been to my PC, an orthopedic, a spine specialist a rheumatologist and a physiatrist, all with different diagnoses...I am negative for arthritis, both osteo and rheumatoid, and my rheumatologist can't put a name on anything. I have heard Myofascial Pain Syndrome, Fibromyalgia and trigger points. I have had EMG's and MRI's, all negative, but still experience pain, tingling and numbness, mostly in my upper extremities. On a bad day I hurt all over (like today), it lasts a few days, and then the symptoms lessen somewhat. My rheumatologist has put me on a low-dose antidepressant and given me 5 trigger point injections in my upper back. Both have helped to a certain degree, and along with chiropractic care the pain seems fairly managble when I'm not "flaring up". She also gave me gabapentin for pain relief, and it works, but it makes my head feel like it's swimming. Does anyone else out there have similar symptoms? I can't put my finger on just one condition and it's driving me crazy!!!
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Hi Sue - Thank you for writing. It must be frustrating to have been trying to pinpoint your condition for such a long time through so many different specialists. We can't promise you a quick answer, but we will work with you to try to find some answers.
If you are in a position to go to an organization that focuses on unusual conditions and takes a wholistic approach to treating patients, that could be an option. The Mayo Clinic is one such provider, and many people go there who have not been able to get answers elsewhere.
Looking at your symptoms, I've found some conditions that may be relevant, and want to give you links so that you can dive deeper into the information to see if it's relecting what you're experiencing. If not, we will do some more research. Take care, and hang in there! Pat
Thoracic Outlet Syndrome:
http://www.empowher.com/media/reference/thoracic-outlet-syndrome
Complex Regional Pain Syndrome:
http://www.empowher.com/media/reference/complex-regional-pain-syndrome
Sjogren's Syndrome
February 18, 2010 - 6:52pmhttp://www.empowher.com/media/reference/sjogrens-syndrome
This Comment
Thanks, Pat...I have reviewed each of the conditions you suggested, and they really don't sound like what I'm experiencing. I am looking into holistic approaches and Trigger Point therapy, but it's expensive. Everything that I've read previously points to Myofascial Pain Syndrome and Trigger Points, but not fibromyalgia. Like I said before, my rheumatologist is reluctant to give it a name...she's telling me stress is a big factor, hence the anti-depressant. I am an x-ray technologist, and a lot of my work is done with my arms, i.e: manuevering equipment, patients, etc, so there's an over-use and repetetive factor as well. Sometimes it feels like inflammation (my skin and tissues in my arms and hands feel very tight and/or dense), and sometimes it's a tendonitis-like pain. After a couple days of numbness, muscle contractions and tingling I get an almost unbearable joint pain, where it hurts to even touch anything - I can feel it all the way down to my fingertips. If I sleep the wrong way, my neck flares up and starts the whole process over again!!! (I am on a seemingly never-ending quest for the perfect pillow) Sometimes the naproxen works for the inflammation, sometimes the gabapentin works. At least I can recognize which one to take for which type of pain! I hate taking all of these pills and would rather find a nutrition and excercised base treatment path, but until then, I will stick with the conventional medicine, as much as I hate to. Thanks for listening, and thanks for your help!
February 19, 2010 - 7:59amHi Sue - Thanks for the additional information. I can see how your work is adding fuel to the fire, so to speak, and making this more difficult for you.
I have another question for you - Have you looked into any pain management programs or been seen by physicians who specialize in pain management? There can be a vast difference in the programs, but there are some that are holistic and more likely to be what you're looking for. Perhaps the physiatrist you saw would know of programs in your area as rehab facilities sometimes offer comprehensive pain management services on both an in- and outpatient basis.
Have you looked for an alternative medicine resource in your community? If not, we'd be happy to do the research for you and see what might be available. We just need your city and state, either here or you can send me a private message if you don't want to put that information in the comments.
I will also learn more about Myofascial Pain Syndrome and Trigger Points so that I have a better understanding of what you're dealing with, and resources that can help. Talk with you again soon, Pat
February 19, 2010 - 5:26pmHi again! Thank you for being so prompt in responding! the only pain management I have looked into is an on-line trigger point therapy..when I have an extra $150-200 dollars I will give it some serious thought. I have put the word out to freinds about holistic centers and practitioners, the only problem being cost right now. I would love to try accupuncture, but, again, the cost is the only thing hindering me at this point. (my insurance only covers chiropractic, no other alternative therapies. I am open to any suggestions or pain-management ideas that you might have...this is very frustrating, as it has been going on for over a year and a half!!! Thanks again! Sue
February 19, 2010 - 5:37pmThanks, Sue. We need to know where you are though to look at potential resources, including free ones, that might be able to help you. I've worked with pain patients before, and I know it can be very, very frustrating - especially when medical professionals treat you as if the pain is all in your head. Thanks, Pat
February 19, 2010 - 5:57pmOoops! Sorry, Pat. I live in southeastern Massachusetts, about 20 minutes outside of Boston. i am willing to travel a bit if it's the right treatment...Thanks! Sue
February 20, 2010 - 7:33amNo problem, Sue. Can you please take a look at the information on this reference page and let me know your thoughts? This was in our encyclopedia with Myofascial Pain Syndrome. I'm trying to better understand what you're dealing with, and why fibromyalgia is being ruled out. Also, have any of your physicians brought up Chronic Fatigue Syndrome? Please see that info as well. Thanks, Pat
http://www.empowher.com/media/reference/temporomandibular-joint-syndrome
http://www.empowher.com/media/reference/chronic-fatigue-syndrome-center
February 22, 2010 - 5:27pmHi Sue,
It sounds like there are many directions the cause of your pain can be coming from. I want to suggest something affordable and non invasive to try to see if it helps you. Check out this site:
www.elainepetrone.com/
Elaine Petrone was a dancer who came down with multiple musculo-skel issues and tried all kinds of interventions ie chiropractors, massage therapists but the results were always temporary. She then came up with her ball technique where you learn to relax various parts of your body. The balls with a little book teaches you some techniques and are inexpensive to buy. She also has a video you can decide if you want. I believe she is based in Conn. so if you have a good response to the balls you are close enough to go see her.
If it turns out your problem is related to stress then maybe this can help and what I like about her method is that you are in control of trying to get better. I hope this helps you.
February 22, 2010 - 6:13pmThanks, Michelle!
February 22, 2010 - 6:40pmThanks Michelle! Some of Elaine's methods are similar to some of the PT I've had done, and a lot cheaper than another on-line trigger-point therapy I've seen...It's definitely wrth a look!
February 23, 2010 - 12:38pmThanks to you, too, Pat..The CFS sounds like it may have something to it, as well, although I don't have all of the symptoms, I do have most. Fibromyalgia was mentioned to me by a few of the doctors, but most of my pain and symptoms occured in my upper body, which made them say it was probably the Myofascial Pain...It's kind of like a fibromyalgia fro the upper body, if you will....My Rheumatologist is treating this like a fibromyalgia, and I had one doctor tell me that I shouldn't be surprised if someone gave me the fibromyalgia diagnosis within ten years, because of all the "-itis's" in my body..I will look further into all info that both of you have mentioned...Thank you so much!