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I have been experiencing upper extremity pain, tingling and trigger pionts in my upper back. tons of doctors, and different diagnoses.

By February 18, 2010 - 5:18pm
 
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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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HERWriter

Hi Sue,

Sorry you are having such a bad time of this. Has anyone focused on an event ie lifting something, a recent virus, exposure to some new drug or chemical that may have set things in motion? Is there a way to take time off from work so you give your upper body a rest? The fact that the gabapentin helped leans toward the problem being nerve related. The body is funny and can send impulses of pain even when nothing is happening.

I agree with Pat that a pain management doctor should be next on your list to come up with some kind of regime to calm things down. Here is a link from Web MD of resources for pain management. Hopefully one of these sites can help you find someone in your area.
http://www.webmd.com/pain-management/guide/pain-management-support-resources

take care, Michele

March 8, 2010 - 6:24pm
(reply to Michele Blacksberg RN)

Thanks, Michele, I will check into the website....This all started happening out of nowhere...I had been going to the gym for 6 months, working out 3-4 times per week and then all of a sudden I started getting the muscle pain in my arms with the tingling. I'd had tendonitis in both elbows previously, and that's what it felt like, but there was just something different about it. That's why I started off with the orthpedic doctor. I work with a lot of talented doctors, so I knew who to go to, but after PT for my neck and OT for the tendonitis and numbness, he really couldn't do any more for me. He also thought nerve entrapment but didn't want to go right into surgery because he thought there were more avenues to explore, which is what I'm doing now. Another MRI and an apointment with a neurosurgeon and we'll see what happens! Thanks for the link to Elaine Petrone's website, I actually ordered something from her a couple of days ago and am anxious to try it! Thanks again!! Sue

March 9, 2010 - 7:47am
HERWriter (reply to SUE M)

Has anyone tried injecting locally or giving you an oral run of steroids? It sounds like you could have stretched or strained something maybe working out and a nerve or nerves have become irritated.

Good luck with Elaine's equipment and I hope you find someone sharp to go to for further evaluation.
take care, Michele

March 9, 2010 - 8:36am
(reply to Michele Blacksberg RN)

Hi Elaine...I've had several local injections from my rheumatologist, the most recent being this past Friday. I've also done 2 runs of steroids, to no avail. I haven't had any epidural steroid injections because the MRI couldn't find any reason for the pain or neuropathy. The most recent injections were procaine, and they went into the trigger points in my upper back muscles. They worked in the past, but this time not so much. I seem to be having more pain in my wrists and hands, which is why I'm seeking a neuro-surgical consult. Hoping that my PC approves of my choice! Thanks... Sue

March 9, 2010 - 3:50pm

Thanks 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!
Thanks 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!

February 23, 2010 - 12:38pm
Expert HERWriter Guide Blogger (reply to SUE M)

Hi Sue - Glad to know we're making some progress!!
CFS patients often say that it took a lot of different physicians and a very long time to get the diagnosis and the support they needed. Here are some articles that you may find helpful as we continue our "detective" work. I'm looking forward to your response. Best, Pat
https://www.empowher.com/community/ask/isnt-cfs-fibromyalgia-and-me-basically-all-same
https://www.empowher.com/community/ask/whats-best-way-treat-cfs-how-long-does-it-take-feel-better
https://www.empowher.com/news/herarticle/2009/07/13/chronic-fatigue-syndrome-not-depression-more-alzheimers-part-1
https://www.empowher.com/news/herarticle/2009/07/16/chronic-fatigue-syndrome-not-depression-more-alzheimers-part-2
https://www.empowher.com/news/herarticle/2009/08/12/top-ten-list-recovery-chronic-fatigue-syndrome

February 23, 2010 - 6:04pm
(reply to Pat Elliott)

Hi Pat...Had to go back to the rheumatologist, had an incident where both of my hands went numb and cold while I was carrying something. A new and exciting symptom! I asked my Dr about the whole cycle of what I'm experincing, and basically she said that the spasms in my upper back and neck muscles (the knots, trigger points) cause all the connecting muscles to shorten and contract, therefore causing the muscle and tendon pain, tissue inflammation, etc...Just a viscious circle that I can't seem to stop! So I had another lovely procaine injection to try and break up the knots. She also thinks I may have some median and ulnar nerve entrapment going on. Oh joy! Now I need to find a neurologist because I'm getting very tired of all of this. SO I will try massage therapy, and I'm going to order those therapy balls from Elaine Petrone that were mentioned and just try everything! I've changed my diet, vitamins, etc, so we'll see how it goes! I don't think I have CFS, though...It seems as though I have a few symptoms of this and that, but nothing with a defnite name except the trigger points, so I'll keep digging too!
Sue

March 7, 2010 - 2:42pm
Expert HERWriter Guide Blogger (reply to SUE M)

Oh Sue - I just can't imagine what it must have been like for you to deal with yet another problem while you're still seeking answers. It sounds like the doctor you're now seeing is giving you more information and a better explanation for what's causing your pain - am I reading that correctly? It also sounds like she wasn't able to provide any type of name for the symptoms you're experiencing, which leaves your diagnosis vague. Will you be able to see a neurologist who specializes in pain management?
I'm glad you're going to try massage therapy and the therapy balls, and admire your can do spirit in moving forward to support your own health. Let us know how your next physician visit goes and if we can assist you in your quest. We wish you the best and some real answers. Take care, Pat

March 8, 2010 - 5:48pm
HERWriter

Hi 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 - 6:13pm
Expert HERWriter Guide Blogger (reply to Michele Blacksberg RN)

Thanks, Michelle!

February 22, 2010 - 6:40pm
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