I’ve usually been able to handle a lot of stress and/or activity. I’ve had TN for 5 months now and on Tegretol for 3 months. Stress now affects my muscles and makes my body weak. Sometimes after I get home from work it’s all I can do to do anything. I also start having break thru pain. Has anyone had this with a lot of activity/stress and does it get better in time? I really want to be able to handle a weekend full of busyness again!
Good evening, Yes I have found stress will make TN worse, I have to be very careful not to tense the muscles in my jaw. Perhaps that my be part of your problem. I try to practice yoga type breathing to keep the facial muscles relaxed.
I am not a doctor but, your body and muscle weakness is a concern. Generally, muscle weakness is not a common symptom. Hopefully you have an appointment with your medical provider soon. If your muscle symptoms are something you have never had before please get seen in the very near future.
While taking Tegratol I found that all I ever wanted to do was sleep. That’s not to say that that medicine has that effect on everyone, but I do feel much more capable of doing things now that I have quit taking it. Upon stopping it I have found that I don’t sleep as hard at night either, so I am pretty positive that it was this med that had me feeling lethargic. However, stress AND any strenuous activity absolutely triggers my pain and causes it to be worse if it’s already present. It’s kind of a double edge sword that took me a long time to accept. Most of the meds that I have found that will help with pain do decrease my energy levels quite a bit. As a person that has always been very active in alot of things I think that this “hurt my feelings” in the beginning more than anything. I continue to try other meds, though, in hopes that I will find one that does not cause me to feel tired. (to me there’s a fine line between feeling tired and feeling depressed…I even had a psychiatrist tell me that being a “busy body” was a sign of being depressed, rather than anxiety as I originally thought. But that’s a whole 'nother episode of Dr. Phil…lol) How bad either stress or activity affects my pain levels varies from day to day…so on “good days” I really try to enjoy them to the fullest AND clean my house thoroughly. 
On the bad days I make gratitude lists to try and focus on the positive, and to help me realize that what I am feeling at that moment DOES NOT define my existance…and I take it easy on myself. The breathing excercises that “latte lady” mentioned are also a big help for me in the midst of stressful situations. HUGS Best wishes on your journey to find relief!
Very interesting thoughts Ash, I've never realized being a busy body is an avoidance of feelings. But I really like making a list of things I did accomplish on days I can't do things and being thankful for that. Thanks!! Min
P..S.S. I really like what you said about the fine line between tiredness and depression too. I recently had and increase in topamax and it's really hittin me hard. I was starting to wonder if I was getting depressed again. Sometimes with this it's hard to tell....
Hello Ash, I love your idea of gratitude lists,always a good habit to form TN or not.
I say there is a differnce between a busybody and a busy body. Life itself will cause a person or body to be busy. A busybody to me is a disrespectful label to put on a person. In my rural midwestern lingo a busybody is some one who wants to know every bodies business and likes to gossip. I am a bit offended for you and any other busy person in this world,shame on that psych. person. Maybe they need to take a break and get some perspective. I won't say "I wish they could feel what I feel". I would not wish this beast of TN on anybody.
Min said:
Very interesting thoughts Ash, I've never realized being a busy body is an avoidance of feelings. But I really like making a list of things I did accomplish on days I can't do things and being thankful for that. Thanks!! Min
Have had a change today... after a busy day at work my husband and I ate out and went to the store to get groceries (I was doing perfectly fine!). About 15 minutes after being there i suddenly felt weak and tingly in my lower legs and elbows down.my arms. This is bilateral. I had a hard time getting out of the car and into the house. It has become a pain, still tingling, like one when walking all day at a theme park. I'm now very concerned.
Be concerned, I would suggest seeing your primary care provider as soon as you can
tfletch9 said:
Have had a change today... after a busy day at work my husband and I ate out and went to the store to get groceries (I was doing perfectly fine!). About 15 minutes after being there i suddenly felt weak and tingly in my lower legs and elbows down.my arms. This is bilateral. I had a hard time getting out of the car and into the house. It has become a pain, still tingling, like one when walking all day at a theme park. I'm now very concerned.
Tfletch I’m sorry to hear of your latest struggle & discovery of additional issues. That does sound scary…I hope you’re able to get to bottom of things, and able to find a solution, soon!
Latte lady “busy body” is my terminology…the psych used different wording and was referring to my hyperactivity for sure. I’m a bit of a “workaholic”. It’s been nothing unusual for me to wrk a few jobs, do volunteer wrk, and various other things. That was a few years back…and I’ve been able to find peace in sitting still since then. It’s been a process and a journey to say the least. So, I do “get” what he was saying. However, that same Psychiatrist bursted out, loudly, exclaiming I “wasn’t trying hard enough” when I told him that I couldn’t handle taking the large doses of a med that he suggested while trying to learn a new job. Needless to say I never went back to him. 
I made sure to mention that they make medicine for temperament such as his before I left…lol. As for the gratitude list, that was an idea that someone else suggested to me. It has helped me through many a tough time this year. Min, all of these meds really do blur the lines between it all, that’s for sure. I’m starting Lyrica this evening…and getting verrrry sleeepy as I’m typing this. Wish me luck! 
Called my neuro and she told me to go to ER... My TSH level has jumped from 2.33 to 5.35 in 9 days. So, that explains the weakness - and also that I might be having a reaction to the Tegretol. I had to stop taking Trileptol because of the side effects with my legs.
Good thing is I haven't had any break-thru pain since last night - might have found a new cure, high TSH! :) I love it when they ask about the pain level in things... In light of the TN everything seems so small that it's hard to give a clear picture of how much things hurt! But yes, I am finding that I'm having to learn that I no longer have "control" over my life, which has been a grieving process in itself. For someone that has handled tough cases at work and lots of responsibilites/activities at my church - not having the energy to do it all makes me feel like I'm elderly! ButI know in time I'll be able to balance it all. Thanks y'all! (Yes, I'm from Texas :)
Reading your comments is like a review of my own existence (when it comes to TN and daily living). Like you, I’m grieving the loss of my “normal” life and striving to get used to living with, and accepting TN. I’m so mad, but even anger must be limited, so mostly, I try to live by the philosophy a long ago friend of mine, who died of stomach cancer, lived by; " With acceptance comes peace." Pain is very hard to accept, but she did it gracefully, so I can too. Moment by moment focus on relaxation during pain helps. Sometimes, in my imagination, I go to a painful place on or in my face and I breathe in through my nose fresh health and breathe out of my mouth or my nose excess stress. I imagine the air coursing in and around my pain, and sort of like become one with the pain. This diffuses the pain, relaxes me, and gives me a sense of control. Hope this helps you. Peace to you, Laurel
tfletch, what kind of effects on your legs did the Trileptal have on you?? Min
Hello to all who read this: I have read this article with great interest. I have not been here in a while as I have had a variety of issues to deal with but this one struck me. Stress in my family has caused issues, including elevated blood pressure! Do you check your blood pressure? Also the muscle issue could be a variety of things but I just got the diagnosis of muscular dystrophy but I already knew that, as I was born a "floppy baby". I have the mild congenital form of muscular dystrophy. As of late stress aggravates everything. And what I think is neuralgia may be the elevated blood pressure now. Always check blood pressure to make sure it is not that. I, too, take Tegretol and it does seem to help the jaw pain but I must always check blood pressure to make sure that is not the problem. I remain as busy as I can but sometimes this pain does knock us down! Ugh! Always see your doc as the doc just gave me the diagnosis I already knew I had by doing my own research. I never said anything to them, just described issues. Hope this helps and I know we are not alone in this.
Min, it felt like I had been walking all day (like at a zoo, amusement park...) and then burning started. Got progressively worse.
Min said:
tfletch, what kind of effects on your legs did the Trileptal have on you?? Min
Laurel, I try this too. I do a lot of meditation, however lately it has become increasingly difficult.
I love that>>>>> " with acceptance comes peace" .
Thank-you for sharing.
(( hugs)) Mimi
Oh my gooodnesss. I'm sorry to hear that. I hope you are doing ok with the Tegretol. I couldn't tolerate it.!!! I am on the Trileptal. That is why I asked you that. That is so strange. You just never know what these meds will do, they effect us all so differently. . Wow. That's sooo crazy. I'm glad your ok now!!! Min
tfletch9 said:
Min, it felt like I had been walking all day (like at a zoo, amusement park...) and then burning started. Got progressively worse.
Min said:tfletch, what kind of effects on your legs did the Trileptal have on you?? Min
ClefTreble' interesting you say the Tegretol did not help with your jaw pain. As it did not help with my jaw pain either. That is why I am on Trileptal. Just wanted to let you know I agree with you on that one. :) Min
Tegretol has taken care of my pain - have to take 3 a day... but, because I only have a partial thyroid and take meds, my TSH levels tripled in a week causing the weakness in my legs. So... back to neuro to see if the Tegretol is messing with the Synthroid and my B12.
Min, have you had any leg burning? Maybe it was just a side effect that would go away after a month or so...
I had toes burning in the beginning for the firs 2 to 3 months I think somewhere in there. .
Oh, yeah. Things will work for awhile, then blam! It’s like you are back to square one. I hate it when I’m a couch potatoe; the aches from laying around mount up and then agitation, then tension, then more pain. These cycles get very tiresome. I really feel for you with all that pain. Breathing works sometimes, but for me, there are times when breathing deeply through my nose is very painful, so then forget about it. I just stop and try something else.
Mimi said:
Laurel, I try this too. I do a lot of meditation, however lately it has become increasingly difficult.
I love that>>>>> " with acceptance comes peace" .
Thank-you for sharing.
(( hugs)) Mimi
I'm counting my blessings that I've had very little break-thru pain, and just one night of "knock me on my knees" while brushing my teeth. I guess I can't handle large amounts of stress or heavy activity anymore?? Off to see my regular doc next week to check on why my thyroid levels have dropped so much in a week.
Thanks to all that have responded - helps so much to have people who truly understand! Happy Thanksgiving!