Update for anyone who's interested: I did finally talk directly with my Neuro. She confirmed that, yes, my EMG was normal. She further said it was "more than reasonable" to do a skin biopsy to see if that can tell us what is going on. I can't get in to get that done until March -- first opening.
I know we were talking about EMG's hurting. Has anyone had this type of biopsy before -- to look at your nerves? Does it hurt?
I have the same numbness you are describing, and that's what I'm trying to find out about with all these tests. Mine started around the time I started taking anti-depressants for the first time, and I originally attributed it to the Rx, but now I wonder if it's really FM or something else. I really don't think it was the drug, actually, looking back. That was the time frame when all my FM symptoms really "blossomed."
In any case, sorry to hear you are hurting. Falling all the time stinks, but what does anyone expect when you can't feel your feet!?
Sarah, I am one that has had good results from Cymbalta, and few side effects. I can't say it got rid of pain completely, but it does take the edge off -- a noticable difference.
I have Depression and Anxiety, too, so it makes sense for me to be on an SNRI anti-depressant anyway. Interestingly, I find that Cymbalta is better for pain than depression (I take another anti-depressant in addition to Cymbalta because alone it does not provide enough reliev for me).
Since I have pretty much tried everything in the book in terms of medicines, I've found that everything has side effects. For me, it's just a balancing of how you can get the best symptom relief with the fewest side effects. Like Bette alluded to above, if I'm feeling great mood-wise by can't pee, it's a problem!
The side effect I did get with Cymbalta which I haven't had with other drugs is spaciness. As in "oh, excuse me, have you been talking to me for the last 1/2 hour because I didn't even notice you were there?" Tee hee. It has worn off over time.
Whatever you decide remember, if it doesn't work, keep trying things until you something that does.
Thanks, Nancy B. I too have has Shingles since having FM. I am in my forties so my coworkers had a field day with that! I had a minor eruption but found it quite bothersome. Sort of the same irritation as a cold sore but worse and on my beltline. I agree it was not pleasant but not the worst pain Ive had. I, too, find it interesting that people can connect with that kind of pain but FM (often worse) is not as easy to "get". Even medical professionals. Sigh, Meg
PS Thanks for your kind words about the above.View Thread
Nancy, thanks so much. The Nerve Conduction part did hurt. No question! The EMG where they "just" stick needles into you wasnt as bad. It's no worse than acupuncture, IMHO.
FM is funny though. I feel like yea, I hurt more than most people but Im also used to a lot of pain so I can tolerate a lot. You know? Plus I had Cymbalta and Neurontin in my system when I had the test.
The doctor who gave me the test told me that it can only pick up SFPN if it is really advanced. So that fits with what u are saying.
MiMi & all,
I am eager to hear Linda's response, too. I can tell you & others, though, that I had a Nerve Conduction Study and an EMG on Friday. Both were normal but my neuro had said that these tests are more to rule out large fiber polyneuropathy. I believe the definitive test for SPFN is a punch biopsy -- biopsy of your nerves in the affected areas.
I am waiting for my Neuro to call me so she can tell me if that is my next step.
Mary, I have always really enjoyed your posts and I'm sorry you haven't been on as much lately. I'm even sorrier you are struggling right now healthwise.
It makes total sense what you are saying. I am with you on the frustration of med changes the seemingly endless search to find your best quality of life. Figuring out how to balance symptom management vs.side effects can be full time job! There may not be any "great" solution, but I hope you will be able to find one that's tolerable to good at the least!
My personal experience with both med changes and depression is that sometimes you don't realize how bad you were really feeling until you are able to make a med change that works better for you, and suddenly the world opens up a bit again.
I have been looking at other smartphone apps as well. One I've tried with mixed results is the WebMD Pain Coach. It allows you to track your pain levels through the day and identify possible triggers. The concept is good, but I give the execution a B-.
Thanks for setting me straight, Bette. Of course you are right. I always find your perspective grounding.
Naturally, I will do all I can for my (step) sister, even though we didn't become related until my 20's and are not what I would call close -- we are certainly friendly. I know she is hurting, and I will be there for her. My resentment has nothing to do with her, or her situation.
Unfortunately, I have years and years of history of my mom invalidating/minimizing things I experience. So, this situation reawakens old hurts that I am still struggling to forgive. My childhood was all about taking care of her *many* needs. She is very narcissistic.
Example: when I told her I had FM, her immediate response was: "Hmmm, I wonder if I have it, too?" Hello, this is not about you for the next 30 seconds -- I am suffering here! I honestly do think she believes FM is real (maybe not as "real" as MS, but...), but for whatever reason she has difficulty focusing on the needs of others.
Anyway, part of my healing from all this is forgiving. I struggle with getting there. I work at it constantly. I know all lack of forgiveness does is make me hurt worse -- emotionally and physically. It doesn't punish her or anyone else. I am not there yet.
Signed, a Work in Progress. Struggling at times. MegView Thread
I think you may be new to this site, or perhaps have just not posted before or for a while. I didn't recognize your username anyway.
If you have specific questions some of the longer users of this support group (not me!) can help you with, I would encourage you to think about what those might be. I know it sometimes is even hard to know what to ask, but people on this site are very helpful and just awesome, amazing strength and smarts! They have helped me a lot.
For me, the things that have helped relieve symptoms the most are: 1. Getting my vitamin D levels up to the 50-60 range. I take 5000 IU a day and have it monitored (labs) all the time. 2. Taking Cymbalta and gabapentin (Neurontin). (Which has, relatedly, helped get my Depression and Anxiety under control.) 3. Pacing -- resting before I'm tired & accepting my new limits. 4. Finding ways to get more sleep at night -- for me this sometimes means using a sleep aid. Exercise during the day and the other meds I take help sleep go better. 5. Heat, like Bette says. Shower/bath, hot pad all help. Hot tub is like heaven.
This is not medical advice. Just what worked for me.