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Uncontrollable shivering - Have you ever had this with your COPD?
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Courtney_J
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Courtney_J
Community manager
Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 30 in the COPD Forum
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@lightening1952 Hello lightening1952, thank you for opening this discussion. I'm glad to hear that you'll be talking to your doctor, in the meantime, let me tag a few members who may be able to share their thoughts and experiences with you.
Hi everyone, how have you been? Have you every experienced experiences of uncontrollable shivering like @lightening1952 describes? Do you think it's linked to COPD? How did you handle it?
@Slrdmr1 @randerson801 @Ks1962 @MrSlyde @hras240 @Msmonica43 @Annleelee @Cherann61 @byumimi @sschlinh25 @lawless @giggles @Maynerd @Keally @LynninTx @Mommastruggling @mrmiles
Feel free to share any advice or experiences you may have here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity US
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I have something diagnosed as Essential Tremors in 2013, where my limbs would tremble for no apparent reason. The doctor told me it is harmless and many people get these tremors due to different causes: 1. Low Blood Sugar; 2. Not eating or drinking anything since your last meal (a major cause of low blood sugar); 3. Traumatic experiences past or present; 4. Lack of movement or regular exercise; 5. Reaction to medication. I carry those glucose chewable candy tablets with me when this happens. I noticed them after I had a T.I.A. at work in 2013. I get them when I am extremely exhausted or have insomnia and sleep 1-2 hours per night. When I took Advair, I'd get them all the time and my anxiety went through the roof! My Pulmonologist took me off it and gave me Albuterol Sulfate and Ventolin instead -- no tremors or major anxiety caused by the switch. My tremors are mainly now from this pandemic lockdown, not being able to go and socialize with family and friends unless it is via social media or mobile phone, go out shopping, taking a drive somewhere and stopping at a new café, restaurant, diner for a relaxing meal, etc. Since March 17, when we became aware of COVID-19 locally, I put a total of 500 miles on my car and I usually do 4-5,000 in a matter of a year! I only go out now to pick up my meds at the local drive-thru pharmacy window, or ATM machine. Nothing for fun. If I don't move around during the day, then the tremors/shivering starts! It may be 90ºF outside but I'm wrapped in an afghan blanket sitting in my recliner! COPD is not fun by any means. I constantly monitor my oxygen levels with an oximeter and a breath strength tester. If my level drops below 85, then the shivering starts; not much you can do but wait it out! I tried meditation, but that made me more anxious and it was boring as Hell! What relaxes me and reduces those tremors is playing The Sims game on my laptop. There, I can create the perfect person living in a perfect world, and that takes my mind of my stress and COPD. In the meantime, keep wearing that mask
, social distance,
and wash those hands!
. Like a billboard I saw locally stated: "MASK IT OR CASKET!", it was an ad for a local funeral home!
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CarolSchmidt
@KathyA, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.
Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!
She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!
Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.
The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.
There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.
Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)
I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope you have a wonderful reunion!
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cbholder3
@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.
GSKForYou | GSK Patient Assistance Program
Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.
See the best comment
CarolSchmidt
@KathyA, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.
Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!
She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!
Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.
The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.
There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.
Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)
I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope you have a wonderful reunion!
See the best comment
cbholder3
@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.
GSKForYou | GSK Patient Assistance Program
Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.
See the best comment
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lightening1952
lightening1952
Last activity on 09/02/2024 at 3:58 AM
Joined in 2018
4 comments posted | 4 in the COPD Forum
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I'd like to know if anyone has episodes of uncontrollable shivering. I get them randomly and for no apparent reason that I can pinpoint. Picture standing outside in freezing weather and shivering from the cold. Sometimes it's just my hands or could be my whole body. I take Advair and Spiriva but have been on them for years and none of my meds have changed. I plan on talking to my doctor, but wondered if anyone else has experienced this.