I am throwing this one out to you all today to see if anyone else has experienced this or not, and how you have handled it. I have had FND for almost 16 years now. There was a time in the earlier years where if I got too cold, and it didn't take much, but my voice would be greatly effected, but the worst would be my muscles throughout my body would seize up so tight, almost like dry heaves when you are throwing up. It would happen over and over again. So much that the muscles in my legs could not support me, and would slowly drop me to the ground in a seized up ball, barely able to breathe.
It went away fortunately for years. I just changed meds and dang it, it's back! I had a horrible weekend a few weeks back, lost my ability to communicate, and was just in pain because of the constant back and forth seizing of the muscles for hours.
I don't know if the temp gage in my brain is messed up or what. Definitely going to ask the neuro, but wanted to see if anyone else has dealt with this.
Thanks
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cgarff
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Hi cgarff I’m sorry you are in so much pain and 16 years is an awful long time to be suffering. Can you not ask to go back on your other meds? Or did they stop working for you? I seize up if I get cold and start cramping but I do have a blood disorder too. Other people do not understand especially if they think it’s warm. I always have a hot water bottle if I can and an electric blanket for bed that helps me. I did try beta blockers they made me feel warmer but had an effect on my heart so I could not carry on with them. I wish you well and am sorry I could not help you more. Take care and try and get your meds changed back 😊
Ya 16 years.. the old meds were good, however they were causing a lot of weight gain, a wonderful side effect. NOT! After being on them for so long, and gaining so much, I felt it was time to try something new. It was not healthy for me especially with some heart issues. Some of my problems with the cold were not just with being outside, or in a cold house, it was being in places like the freezer or any cooler section in a grocery store. It was hard to even walk in or around sometimes. Can't live not going to grab anything dairy or frozen or refrigerated.
And now we are coming on winter with snow here in the states, lots of fun. Just hoping I can get a handle on things before it gets too cold.
So sorry to hear you have a blood disorder that causes issues for you, that is not good.
Sorry you are having to go through this all again. I haven't heard of that. Have you checked the small print on your meds? I think the first thing is not to panic, you have experienced this before and got through it, what did you used to do during episodes?
Ya. I have looked all over them. I am wondering if it could be something neurological effecting body temp. Fortunately get to see my doc Monday. Thanks
I hope you get some positive input from the doctors.
I found this info on a Chiropractioners page and extracted these paragraphs:
How The Cold Affects Your Muscles
"As the weather gets colder, this causes the muscles in your body to lose heat, leading them to contract. As a result, your muscles and joints get tighter and decrease your range of motion. To compensate for this, your muscles are forced to work harder than they normally would in milder weather. This can increase the fatigue of your muscles, leading to longer periods of pain and discomfort after a workout or any type of movement than you would normally feel in warmer temperatures."
"One of the most common causes of muscle spasms are overuse and fatigue of the muscles. Since more work is being done by muscles when it is cold, this makes winter the perfect culprit to cause these to happen. A spasm can last a few mere seconds or be up to 15 minutes long."
"Experiencing cold temperatures can cause blood vessels to constrict, reducing blood flow to muscles. This reduced blood flow can lead to muscle stiffness and increased risk of cramps, particularly in the legs. Additionally, cold weather can cause muscles to tighten up and become more prone to cramping. It’s important to stay warm, stay hydrated, and practice proper stretching and warm-up exercises to help prevent leg cramps in cold weather conditions."
Hi, I have read of others having a problem with reactions to different temperatures , .. I start shaking if I am in an environment by body thinks is too hot ..regrettably most medical venues come into this category.
Sorry not to have any solutions to alleviate the symptoms I expect you have already tried hot drinks and exercise to get/keep your body warmed up..and shaking yourself could help. by providing heat and movement..we can but experiment as the Drs definitely don't have all the answers. Have a cosy day ..warm wishes.
Wow to have issues with the hot.. that is not fun, I would be double messed up here. Half a year hot, and the other half cold. Uhg. Some of these times happen just at the store in the cooler section of all weird places. But it is coming on winter here, and it gets pretty cold with the snow, so I need to get it figured out. Can't stay inside. 🤪 lol, I have had to do some warm drinks like cocoa to get me warm from the inside out to help calm things down before. Does help a little.
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