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exercise with problems breathing, heart racing and lower back pain
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Hi,
I was amazed that there are so many of us over 55 who have this disease. I also am surprised to read about the heart rates around 50 when O2 is in 50’s and then bounce up to 110 or 120 as O2 rate goes up, then go back to your normal rate. My hubby told me my heart rate of 50 wasn’t possible, it had to be an error with my tester. Now I know I test out similar with my friends or buddies in my pulmonary fibrosis group.
Anne
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Goodluck Anne! How did it go with the endocrine doctor the other day and obtaining a pulse oximeter? Was thinking of you!
Char. -
I saw my pulmonologist yesterday and told him about the O2 saturation of 47 and how my heart rate went down to @ 50 when that happened. He said it something he sees all the time, in the hospital, just before someone has a cardiac arrest. He said STOP doing that. It can make you DIE. If your oxygen drops down in the low 80s and stays there very long you are doing organ damage. There are some people who can adjust to lower oxygen levels, however, As a general rule, if it goes lower than that and your heart begins to slow, you are in danger of having a cardiac arrest.
So, your pulse O2 isn’t necessarily wrong. Don’t risk it. Stop before you drop low. I need to stop before I’m even feeling out of breath. This disease sucks so much.take care of yourselves out there. Exercise can be deadly if we aren’t careful.
Kristie
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Hello Kristie, I am relieved you spoke to your pulmonologist about your oxygen levels. Thank you for sharing the conversation you had with your pulmonologist with the forum members. Please watch levels and breath easy. Mark
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Hi Gil,
So sorry for the delay in getting back to you!
How is your arthritis pain since we last spoke? It is still on my ‘to-do’ list to do some research about the correlation between PF and autoimmune conditions. That said, since it isn’t super time-sensitive, it keeps getting bumped on the list. Let me know what you find out, and I’ll do the same. Fingers crossed some new information will be revealed for all of us living with this cruel disease!
Hang in there, thinking of you.
Char.
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@anne-tarantino, @reglois @kayelmcv
Heck I can’t even get a couple of doctors to try and work together to help me figure all this out. My heart races just sitting in a chair. My blood pressure is all over the place from real high to all of a sudden it drops. If I start feeling hot when all this happens I just pass out it all happens so fast I really don’t have much warning. I can’t even get drs to see me because all my problems were caused by Covid. The drs that did take a test would come back tell me they aren’t sure what to do. I finally fought and fought to see some of my medical records and I now have several autoimmune issues, rheumatoid arthritis, IPF, now I’m having heart problems. I started ofev to try and slow things down. I had nothing show up in January with my physical. This Covid has like activated every negative thing in my body and it’s all happening since August. I can’t keep up with it all. My drs won’t even tell me what’s happening I had to go hunt down my medical files to find out well I mean my son had to do it. Now it’s starting to effect my mind and eye site. I’m not sure what to do I have been turned away from most of the drs around here. The drs I do have don’t seem to care about telling me the truth or who to see for what. They have me referred to another then they say can’t help and refer me on. Finally I have the Mayo Clinic in Florida to take a look at my files and none of the drs or hospitals will send them to Mayo. I have been fighting for everything with this crap and in January I was hard at work now I can barely get out of bed to go to the bathroom. If I feel kinda ok my exercise is just trying to walk to the kitchen with oxygen and I still have trouble it takes me hours to try to get dressed get to a car to go to a dr. I’m trying to remember everything I might need on a road trip to Florida so anyone that has left town with these problems what should I take. My luck has been so bad I’m afraid to leave my house. Any suggestions would help really new to all this and not getting much help. Thanks everyone
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Hi Kristie
All very well your doctor saying stop doing that, wish we could, I never know from one minute to the next what will cause it, ie carrying something little will sometimes do it, then carry something heavier wont !! I do know for me even bending a little will cause an instant large drop, so bought a grabber.
Saw my doctor yesterday for prescription renewal, she saw the state of my breathing and my swollen hard leg the scleroderma plaque has swelled and is full of fluid which is now leaking, I was supposed to go to hospital three weeks ago but no beds now with the country in full lockdown there is a bed available next Tuesday, so hopefully will get leg sorted and more oxygen if that is what I need, they think I have Pulmonary Hypertension. Still a bit scary going into a hospital under Covid conditions (had my compulsory test this morning)
Take care every one. Sue
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Hi,
I have been reading along since I was diagnosed with IPF in Nov.2019.It’s 2021 and I still am fighting with oxygen .The way it goes up and down.How much to use etc.Like many here sometimes it drops down in the 47 range but if I sit down it goes up fast into the 70 to 80s,then on up gradually.If I just sit it can be set at 2 or 3 and I get to thinking I am ok.I have a fib as well.Both of my Dr.s say My symptoms have not changed and give me a new appointment.My pulmonary Dr. says to use my oxygen at whatever number I need for what I am doing.My cardiology Dr. says I can not have surgery but he can give me medicine if needed.This is definitely a journey for all of us.I did not choose to take the medicines to slow this disease.I end up allergic to medicine and did not want to even try.I do hope they will find a treatment for it.I have learned a lot reading what everyone else who has this writes.Thanks all.Nancy
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Hi Nancy @norunyan123, I would agree with your pulmonary doc and crank up that O2! I’m not a doctor, but 47 is very very low. Even maintaining in the 70s and 80s at rest makes me nervous. It’s not a sign of weakness to need more oxygen. In fact, using more so that your saturations stay higher will help with your overall health and make you feel better and more energized. Imagine putting a plant inside a box with a hole poked in it… the plant requires sunlight to thrive and grow. Just because the hole does technically provide the plant light doesn’t mean it will be healthy in the box. You wouldn’t leave it in there knowing it could thrive if you set it outside, right? Give the plant what it needs… give your body what it needs 🙂
Wishing you the best and I hope you can find a treatment plan that works better for you.
Christie-
Hi Christie, thanks for the reply.I will talk more to my Doctors about these problems.I have always been healthy other than the usual aches and pains until this came along.Also have been used to grinning and bearing illness until it went away.I am 83 .
I just try to figure most things out myself.The low oxygen would come when I try to keep doing things and force myself to finish instead of sitting down and breathing.I will usually be in the 90s when I sit.If I am up and doing I need 4 to 4.5 .Then Still need to sit and rest when I start to get breathless.Thanks for your interest.I will keep reading what people have to say about
themselves.It helps me a lot.
Nancy
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@anne-tarantino
Hi Anne,
That’s an inspiring story. I try to exercise but my heart doesn’t like that because of PAH. Yesterday my wife and I went for a walk but only a couple hundred meters as I was struggling. Later in the day, she wanted to take a short nap which is rare for her so I told her I wouldn’t make her walk so far the next time. – We laughed.
Did your doctor assign you PT at someplace with a heated pool?
Stay well – Steve
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