Copd/spasms

[Fleurbaby]

I suffer from mild to quite violent twitches/spasms, usually head jerks & right arm jerks/spasms lasting off & on for 5/10mins to a lot longer. Sometimes it starts as above & will then go through the other arm, legs, toes & fingers! Quite scary, sometimes I worry it will not stop! I can be left quite exhausted! I live on my own with no family, l worry constantly about lying alone for days because I have no-one,

[Caspiana]

Hi Fleurbaby .

I see this is your first post. 😀 It's really nice to hear from you. Maybe you could share more background information on your condition. How long have you been ill? Are you on oxygen? What medication are you on?

It's really hard to say if these spasms have anything to do with COPD. It sounds a bit like Myoclonus which can be caused by momentary nerve dysfunction which is harmless. Sometimes certain medications may play a role. To be honest, it's best to get a professional medical opinion as it could be a number of things and best not to be ignored. It's so understandable that you feel scared and it must be very uncomfortable too. 😕

Thinking of you,

Cas xx 🌹

[Fleurbaby in reply to Caspiana]

Thanks for your response, l have been " officially " diagnosed since my spirometry test around 11 June 2018 , I think! My fev1 was 51% & 70% lbthink for the other, my fev1 was 43% average when tested blowing on computer in nurses office, my lung specialist is referring me for sleep test b4 next official spirometry test. I am using anoro eĺlipta, losec for my hernia, quinipril for BP, my HIM is 42, so I am a fatty, also escalrooram for my GAD

[Fleurbaby in reply to Fleurbaby]

Sorry, BMI IS 42 also escalorapram for my GAD

[Fleurbaby in reply to Fleurbaby]

I have just been reading up on myoclunus, I had a series of epileptic type fits when I was about 13/16yrs old, they disappeared as soon as they started, my GAD has been with me most of my ĺife, just never joined the pieces until my hospitalisation about 3 may 2018, until then never had a reason to!

[Caspiana in reply to Fleurbaby]

My goodness Fleurbaby . I am so sorry to read you have generalized anxiety disorder on top of everything else. It seems that GAD does have something to do with pathways in the brain that don't connect smoothly, it can also be hereditary. I hope the escitalopram is helping you with this. I had terrible anxiety for many years although I am better now, it never really goes away completely. Apart from medication are you able to have talk therapy (counselling) ? Are you on oxygen? Do you manage to get out of your house much?

Sorry for the many questions. xx 😊

[Fleurbaby in reply to Caspiana]

I struggled all my life to lead a normal one, I tried to kill myself in 1984, I used the excuse it was my failed relationships, it wasn't! I struggled for over 35yrs to deny my being gay, l got bells palsy in 2010, finally admitting to myself about 4yrs ago,.

My oxygen is always around 95 - 100%, l struggle to control my breathing & tend to hyperventilate, l think it is possible that I am suffering a little toxicity, which worries me terribly?

[Caspiana in reply to Fleurbaby]

My dear Fleur. 👋

*Hug* Not being able to be yourself and having to suppress who you are, does take an awful toll on you emotionally and physically. Thirty five years is an awfully long time and I am so sorry it's been so horrendously hard for you. It really is no wonder that you had had enough. I am so glad you are here with us. 😊

When you say toxicity do you mean CO2 retention? Has your doctor ever performed an arterial blood gas test? That should show if you are retaining it not. When you say your O2 is around 95-100% is that when you are sedentary or walking? xx 🌸

[Fleurbaby in reply to Caspiana]

Got a visitor right now, can l respond tomorrow?

[Caspiana in reply to Fleurbaby]

Of course! Whenever is convenient for you.😊

[Fleurbaby in reply to Caspiana]

I am not too sure about terminology, doctor said to me yesterday, l am breathing too fast & not exhaling enough

[Ergendl]

Hi, Fleurbaby. Thanks for your post. Have you thought of going to pulmonary rehab classes. They might help you with your hyperventilation and general fitness, and are tailored for people's different medical conditions. You could also look up singing exercises on YouTube as singing can also help with hyperventilation - done properly they can give you more control over your lungs. Wishing you all the best.

[Fleurbaby in reply to Ergendl]

Thanks Ergendl, if I sang all the neighborhood would get sick! As far As pulmonary rehabilitation goes, they were waiting for other test results first, l was supposed to get a cardiac stress test first, but, when the cardiologist saw me with a walking frame, she wouldn't do it. So!!! ............

[Ergendl in reply to Fleurbaby]

The singing group I run doesn't have auditions as we use singing as exercise, not to perform as a choir. It's worth finding out if there's a similar group in your area. If not, YouTube has some great videos about how to sing properly.

By the way, 75% of the people in my singing group were told they can't sing, when the problem was for most of them that they have lower voices and can't sing a normally pitched tune.

[Izb1]

Hi Fleurbaby, so glad you have joined the site, i cant improve on the advice given by Caspiana, she has alot of knowledge, but can say welcome. I do hope things get better for you soon. Irene x

[CDPO16]

HI and welcome. I just wanted to say that a drug induced cardiac stress test can be done for people with limited mobility. I have had this done and it isn't as scary as it sounds. Under controlled conditions, a drug is injected via a vein to speed up your heart rate while a scan of the heart is done to assess heart function. I'm surprised that the cardiologist didn't suggest this.

I'm sorry that you have so many problems to contend with and hope that things soon improve for you.

[Fleurbaby]

Sorry, l am really tired, l have homecare coming in the morning to shower me etc. My god that was a mission getting all this done, nobody helped really until 2 weeks ago. The nurse is lovely, l was worried with being naked in the shower with her there, but, no worries, I am most definitely gay! Lol, no embarrassment Fri either of us, thank God! Lol going to bed guys, thanks for the advice.

[Caspiana in reply to Fleurbaby]

I am so, so glad you are getting help Fleur. Have a good night. xx 🍁

[Geoff592]

Hi Fleurbaby

I suffer exactly the same as you, my spasms tend to be at night when I am in bed or tired during the day and can last for about an hour or so but occasionally much longer. If I get a draft in bed that also kicks them off. I have tried to hold off on one medication at a time to try to isolate the culprit but the only meds I cant do without for one day is my LABA. This is Relvar Ellipta (yellow top). I suspect this is the one but the spasms are the lesser evil than not breathing so I put up with it. Strange the spasms have started now though as I have been on this for over a year with no problem (had no problems with other LABAs but this one is the most effective). Definitely the same as myoclonus, in my case, as Caspiana mentioned, as I used to get them as I was falling asleep way before I had COPD. They feel like a spring is being overwound then it just lets go, sometimes when lying down my knees would jerk up to my waist. Tough being on your own but there are some good folk on this forum that will give you plenty of moral support and good advice, take advantage of it.

[Gary56]

I too, have the twitches and jerks, however, mine affects walking and speech.

Had tests to find a cause. I’ve had eeg, mri, and lumber puncture. We were worried it might be MND, luckily, not the case. I’ve been “diagnosed “ as having Idiopathic Myoclonus, but the cause is , so far, unknown, and no cure

[undine]

are you on steroids - they are what cause my muscle twitches/spasms ? xxx

[Fleurbaby in reply to undine]

No, I am already obese, steroids will add to that so I told my doctors no!