TN & FIBROMYALGIA

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Comment by Paulette on May 2, 2012 at 8:17pm

Hi Gloria,

Me feet hurt if I walk far so biking has been my exercise to keep the fibromyalgia under control.  But biking is what first triggered the TN.  Yesterday I broke my usual bike ride in to two rides and it didn't trigger the TN now that I'm on medicine.  Fortunately it is getting warm out &  that helps.  I kind of put my hand over my face at times.  Thanks for welcoming us.

Comment by Sara on May 2, 2012 at 8:00pm

Hi Gloria, Thanks for inquiring about us! I am actually pretty good. got the TN 2 somewhat under control, TN2 is still painful. I have been able to reduce all the meds by almost half. Yea! Fibro is the real annoyance now. I have to say, I can take the fibro any day, far better than the TN. My family laughs when they ask how I am doing and I say "focusing on the fibro". That is when they know the TN is grueling. Really, my main focus is always on my sense of humor. If I can keep that healthy, I can bear the rest. I am so proud of you that you are persisting with the exercise. I walk my dogs too.  I think it helps me when I see them enjoy the walk. My dogs are little so the walks are short. Very best wishes to you, Friend. P.S. Yeah, OMG!)

Comment by Gloria E. on May 2, 2012 at 6:42pm

Welcome new members!

There hasn't been much activity here recently, but I'd like to hear from all of you and find out how you're feeling. 

Today I took the dogs for a walk for the first time since last fall.  It hurt, but I did it.  I know the more exercise I get the better it is for the muscles, but OMG!...

Comment by La La on February 6, 2012 at 8:15pm

My ATN sets off my Fibro flares like a wild fire. My Rheumatologist tells me that I have a nice little civil war going on in my body between the TN & Fibro because one affects the other.

Her most important piece of advice is to keep moving no matter how bad I hurt. Those are the days that I go outside with the dog and throw the ball with him. He is only 35# Pembroke Welsh Corgi so he is small. We do that for about ten minutes and we come in. We both hop on the couch cover up and take a nap. I just hope to wake up feeling better. Most of the time I do feel a little better when I wake up.  

Comment by Meme78 on February 5, 2012 at 11:14pm

I have had fibromyalgia for about 26 years though only diagnosed 6 years ago. I have had TN symptoms for over a year and thought it was my fibromyalgia. But last month my doctor diagnosed me with TN. I also have Lupus, Sjogrens syndrome, Raynauds, migraines and a list of stomach diseases. I would say my worst for pain are TN and fibromyalgia even though I really hate stomach pain!

Comment by doowni on August 2, 2011 at 4:31pm

Hello all, I am new to this group, I have had bothe  Fibro and Tn for years, my X-husband thought I was crazy, thankfully My boyfriend is a podiatrist and id very understanding of everything we go through. I am a single mother and work full time also i go to graduate school, dont ask me how, I jus do it...when I push my self too hard, my body tell me to stop. I am going for my 2nd MVD surgery in a few weeks which will send my Fibro through the roof again. Last year I had MVD surgery and it gave me 80% relief for TN but my fibro was so bad after, it was as if the nerves were on over drive! hopefully this surgery wll allow me to be medication free!

Comment by Sheila W. on April 26, 2011 at 4:14pm

Welcome Alexi,

    That's very kind of you to try to find help for your grandmother. If you go to the upper right hand corner of any page, you'll see an empty search box. If you type the word fibromyalgia or fibro there, all the posts about that word will show up. I hope one of the members here will offer to snail-mail her. I'm in Canada, where we have to find a post office to mail our letters vs. USA being able to post mail from their home, and I rarely get out, so I'm not able to stay close to people by snail-mail. 

    You will find a lot of information on this site if you browse through the discussions (a category up top accross the line of menu options).

Best wishes, Sheila

Comment by Alexi Chapin-Smith on April 26, 2011 at 3:20pm

Hi, all.  I'm new to the Living with TN group, and looking for some resources for my grandmother, Elaine.  She has fibromyalgia and TN.  She's 85 and doesn't use the internet, though my brother and I are working on that.  I think she'd really appreciate a snail-mail pen-pal, so email me if you'd be interested.

Comment by Sheila W. on March 19, 2011 at 6:24pm

I'm so sorry Gloria. I hear ya. I have a program on my computer that reminds me every half hour to take a break. It even has optional exercises you can turn on or off. You can set the breaks for any amount of time, ay whatever intervals you want. www.workrave.com . Its free and safe. One thing that helps my muscle pain is pantothenic acid, it dissolves lactic acid that makes muscles hurt. Cheaper than ibuprofen, tylenol, aspirin, and it heals the stomach and liver. I was told I could safely take 500 mg every 6 hours. I also found that opiates don't do much for fibro pain, but it helps my TN and lupus pain.

Comment by Gloria E. on March 19, 2011 at 5:05am

I'm having a horrible time right now with the Fibromyalgia and the Atypical TN.  If I sit in my recliner for more than 10 minutes, my muscles completely lock up and I'm so stiff I can hardly walk.  

My Rheumatologist told me back in 1995 that no matter how bad the Fibro gets - KEEP MOVING!!!  I walked the dogs today and when I finally sat down afterwards, I was in so much muscle pain I could hardly stand it...an I'm on Vicodin 7.5 and it wasn't even taking the edge off.

I agree that the TN or ATN pain is much worse than Fibro pain.  But in my case they're both there all the time and it just so difficutl to deal with.

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