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Good Evening,
I was doing beautifully! Two years in- almost no bladder awareness and then a few days ago I began to have weakness in my neck and shoulders. Ever have that feeling when you lift too much weight and arms become fatigued? Yep, having that for no reason with a few twitches or muscle spasms....in my hand, face and shoulder. Has anyone experienced this?
Then, I made rookie mistake #1 when I looked online and typed in muscle weakness....... Yep, I scared the heck out of myself.
Update other than that is life felt back to normal. I am still teaching full time and loving it;) I am on list five, added in plenty of foods and no bladder twinges. Sleeping through the night... Maybe get up once but right back to sleep.... Which makes all the difference in the world! I still struggle with palpitations and tachycardia but both ate much better than they were. Generally, I am happy.....now this? Would love to hear from you......especially those of you further along in treatment.
Sending healing love,
Katie
Hi Katie!
Hi Katie!
I have had what you describe a few times but it doesn't last long. Not sure what it is!
Hi Deir! How are you? Thanks
Hi Deir! How are you? Thanks for posting! I was starting to think I was the only one with this;(
I have read about this at
I have read about this at ICAMA. Did you do a search? Could be lymph moving and putting pressure on nerves which changes the way your arms respond to requests from your brain. In any case, Dr. Brizman's dissertation talks about the disease moving from core organs out to the extremeties before it is gone completely. Glad you are mostly feeling better. I am sure this will be a blip. I hope you don't mind if I can email you about the heart stuff. I tried a while ago but not sure you got my email. I have similar heart issues but not tachycardia, only the flutters. Congratulations on your progress!
If we don't excel at health, the only other option is disease.
Hey Sarah, Of course you may
Hey Sarah, Of course you may email me! How are you feeling?
So sorry, I know who you are.
So sorry, I know who you are.... I was talking to my friend, Sarah, when I posted;)
Hi Katie,
Hi Katie,
Sounds like you're not quite done with the Land Of Suckdom :) FYI, my councelor suggested banning my self from medical internet research - something about going down the rabbit hole. On the flip side, I wouldn't have found Matia without it. Aha, welcome to my continuing mental hell.
I am happy that for the most part you're getting better. AND YES - I have had those strange muscle things. I also had a round of my shoulder muscles twitching and spasming . Oh, loved the severe ham string cramp, followed by this awful tearing feeling. I was pretty sure I would need to go to the ER. Luckily, after a few hours, intensity let up. A week or so later, pain was entirely gone.
Hang in there - Hugs
Dearest Denise, I was hoping
Dearest Denise, I was hoping to hear from you! You are absolutely right....not at all done with the land of suckdom! I was doing very well....downright normal most of the day then Monday I was teaching, went to point at the board and felt like I was lifting about 100 lbs. I think I may have even said out loud " oh sh&!" . At least I teach high school ;)After that, pain on both sides and random muscle twitching all over them our good friend anxiety and depression set in. Matia has been absolutely wonderful and I hope to come out of this ....NOW! ;)
i think I am going to take your advice about the Internet searches. I already have a laundry list created of all the possible muslce ailments I may have...lol. If I wasn't so anxiety- ridden, it would be comical. However, I have come so far......I will beat this too. I just have to breathe and avoid the med searches.
How are you? Tell me all about you ;)
Katie
Dear Katie,
Dear Katie,
Thank you so much for asking how I'm doing. Unfortunately, not well at all. I'm beginning to, once again, spend alot of time in terror and OCD. Any conventional medication for this condition harms my bladder and hints at a flair if I don't stop. The herbs that Matia has me on seems to be slowly loosing their effectiveness even with an increase in the dose. I"ve been hoping that extensive counseling, along with protocol, might bring back some stability. As of late, it hasn't, and holding on to hope has become even harder. Sorry to be such a downer, but it helps to talk. I spend alot of time hding how bad it is - terribly ashamed.
Again, thanks so much for asking
Dear Denise, Please do not
Dear Denise, Please do not ever hide how you are doing. With an extensive history of mental illness in my family, I totally get it - and am no stranger to mental imbalances myself. Without going into a long story, my father, who is very successful- but institutialized for depression- offered a book called Feeling Good- The New Mood Therapy, which seems to be helping me a bit. Trying to go without meds for terror and OCD is incredibly difficult. I am here to send you a cyber hug;) Keep fighting the good fight!
Katie
Hi. I was glad to find this
Hi. I was glad to find this post. My bladder has been good recently, but I have started with the exact same arm thing. I was weaning myself off Effexor and the combination of the two things has sent me into OCD terror and anxiety (I diagnosed myself with all sorts), to the point where I have had to go back on my full Effexor dose, which in turn is flaring my usually (now) well-behaved bladder. Hate this illness. I had been feeling so well up until this, and coming off the Effexor was my one last goal to be healthy. Feel like I'll never be able to come off it now.....
Hi Katie! Sorry to hear you
Hi Katie! Sorry to hear you are having some anxiety with this arm weakness. I have had this off and on throughout treatment, mostly my R arm and leg. The first time it hit I was sure I was having a stroke. I was so anxiety stricken it's all I could focus on. It resolved almost as quickly as it hit. Now when I get it I am not a nearly freaked out by the feelings when they return, knowing that it will resolve. I am sure another wave of inflammation as the lymph moves around as it tries to ind it's way out of your body. Hang in there, it will resolve! All the fun side symptoms always throw us for a loop!
Hey CPrince, Thank you for
Hey CPrince, Thank you for writing and sharing with me your symptoms. Did you have some muslce twitches along with the weakness? I have had involuntary muscle twitching ...especially when trying to falls asleep. This began on Monday so Iam five days into this and hoping it will resolve itself soon;) What a crazy disease to be able to create all these symptoms. One day at a time..... Right?
Thank you and I hope you are doing well!
Katie
Yes, I have had the muscle
Yes, I have had the muscle twitching in R shoulder, thumb, index finger, and both legs. It can be caused by a lack of something in your diet causing the abnormal muscle contractions for example the sodium potassium pumps or magnesium. I don't know what list you are on these days, but just adding a few more foods rich in magnesium and potassium may help ease some of the twitching. How about coffee, do you drink a lot of coffee? This could also stimulate some of the muscle twitching. Hoping it eases for you and have a great Christmas break! Take this time to relax and try not to stress over this! Definitely one day at a time! :)
Dear Denise- I am so sorry to
Dear Denise- I am so sorry to hear that youa re struggling so much. This sounds so terrifying. just know that I am thinking of you, praying for you and sending you wtrength- although I don' t have much to gve this year either. Maybe just the act of reaching out will relive a tiny bit of your pain.
should say relieve!!!
should say relieve!!!
Dear Katie and Deir,
Dear Katie and Deir,
Thanks so much for listening and responding. I've been so ashamed and haven't reached out to much of anyone. It does so help, I feel a bit better.
Katie, thanks for sharing about your own dealings with your dad and mental health issues. I'm pretty sure that it isn't easy to deal with.
You've both helped me alot.
Hugs to all
Denise, the gut/mood
Denise, the gut/mood connection is powerful. I have seen it even in young children with imbalances. So challenging. hopefully you can carve away at it a little at a time. What does Dr. Brizman say?
Also I wonder since your bladder has always tolerated nearly all foods, if it still isn't worth revisiting the foods you are eating because things like wheat (gluten really but especially wheat), omega 6 oils which are found in crackers and chips and other prepared foods, and nightshades and some things on list 5 could irritate your gut lining which may increase inflammation and leaky gut. Since there are so few things you can control I wonder if it is worth going on list 2 or 3 for a while, just for kicks?? Worth a shot in my opinion. It might help the herbs work a little better and at least it is something you can control.
If we don't excel at health, the only other option is disease.
Katie I have had left
Katie I have had left hamstring weakness and muscle twitches.
If we don't excel at health, the only other option is disease.
I don´t have problems with my
I don´t have problems with my arms, but lately my legs are going nuts. The left leg hurts during bm (really strange!). The pain pulls down all the way to my feet. And when I´m in bed my legs feel restless. It´s so uncomfortable and annoying. The muscles twitch as well. I´ve heard it´s the lymphs moving toxins out of my body. Hope it´s true. Anyways. I´ve had this before and it always went away after a few days. So I guess it will happen again. And yours will resolve as well!
LeeLee from this forum had it
LeeLee from this forum had it really bad and hers resolved
If we don't excel at health, the only other option is disease.