Exercise Intolerance??

[Marnster]

Hello!! How many people here have exercise intolerance? Last night, I TRIED to exercise on our Elliptical. I did it 15 minutes, on the lowest (beginner) level, by the time I was done my legs and arms were shaking.

I wasn't having problems breathing, really, just shaking very badly. I am so sad and frustrated, because up until now, I was walking 2.5 miles every day with my husband. I lost 55 lbs. over a couple years to now this.

I'm just coming off Levofloxacin, and feel the pneumonia is gone, but still so fatigued with upper back pain. Just wondered if this goes with Bronch? Trying to stay positive but my life just seems to be changing so fast.

Thanks in advance,

Marnee

[Patsy164]

Hi Marnster I get exercise intolerance but I keep on at it because going to pulmonary therapy it has shown me what I can do. I do what my body says I can do start off slow and gradually work my way up to feeling ok. I went for a short walk and found it really hard the other day and my husband said well next time you will do better. If you worry about what you can’t do it can make you worse. Stress is not good with bronch.

If I take a walk in the park I take the shorter route to start a few times and then longer. It will take a while to get over pneumonia you will feel fatigue and you won’t be able to exercise much you have to let your body heal.

I feel once you accept that you don’t expect too much of yourself and let nature take its course. You will be able to exercise again but just not too much at the moment. Xxx😊

[Yogibreath in reply to Patsy164]

Really good advice!

[Marnster in reply to Yogibreath]

I agree!!

[Marnster in reply to Patsy164]

Thank you Patsy164. I really struggle with being,or should I say, feeling lazy. I am learning to slow down and take care of myself and stop pushing all the time.

My doctor appointment was the 15th. Then it was changed to the 6th, and now it is Monday! So I'm excited but nervous. Had a rough day yesterday. Fatigue and achy upper back (lung area) but today I feel better. My husband is very supportive and helps me any way he can. I think me being so sick this time really scared him, too. So he is the one getting all my doctor appointments changed around. <3

Do your symptoms vary every day? That every day is different? I have the ache a little today but it is tolerable and the fatigue is better. Do you have sinus issues with your Bronchiectasis? I'm just trying to get as much info as I can since I'm new to this. Thanks.

(Hugs),

Marnee

[Patsy164 in reply to Marnster]

Hi Marnee the answer to your question is yes each day can be different sometimes I’m well but some days Im not and I don’t do anything. I’m retired so I can do that and my husband is very good he knows when I’m good or bad now and tells me to rest.

I have been diagnosed for two years now and I suppose I’ve got used to the ups and downs and you will too. I just look after myself don’t get near anyone who is ill, people will soon say I won’t come over because I have a cold. I have been really good for the last 6 months so have been able to go to London and away for weekends. Before I couldn’t plan anything as I was always ill. My biggest problem which took the hospital ages to realise was that I am resistant to amoxicillin so I was constantly ill. I have had sinus trouble when I am bad and bringing up mucus the doctor gave me a nose spray which was good called Avamys. At the moment I am having problems with my knee and back had it for years but have been reading about bronch and body aches as you mentioned and realised it must be part of the condition. I also get sharp shooting pains in my body all over the place and have read that also is a symptom. The more I read the more it makes sense. I don’t take notice of everything I read on the web but this came from a fellow sufferer on the app “The Mighty” which I just joined and the young lady who wrote it was only in her 20’s and her blog was so true about bronchiectasis, the site covers every ailment. But of course nothing like this site which is the best.

Good luck on Monday and please let us know how you get on xxx 😘

[Marnster in reply to Patsy164]

Thanks again Patsy164. I had a very nice day today. Went to my Mom and Dad's to spend some time together. My Sister was there, too. I haven't seen them since having them over for Christmas. Being sick kept me grounded at home.

I went for a walk with my husband. I was contemplating whether to go or not but I went. I live in Wisconsin so the weather is cold, about 25* today. Halfway through we had to stop so I could take a painkiller. I'm hoping when I get diagnosed and get appropriate treatment I will be better with the walking.

I know this disease has haunted me for so many years. Going to the neurologist because of the shooting pains, I had, especially at night. Always tested for Lupus and RA which was negative. All the joint stiffness, back pain and shooting pain all fits in so well. I just keep going through the past and all the puzzle pieces fit in to places that were empty!! Even going for bike rides with my husband and son. We were going up a bridge and I was ready to pass out. I knew I was in better shape, and not too much overweight, since I lost so much weight walking but why was I always struggling? Everything makes so much sense. Cutting the grass and coming in the house to take a break just shaking. Then the fatigue that hits me the next day(s) was draining. It's crazy to think about it all but the more I think about it the more it all says, "Yeah, it's me Bronchiectasis trying to take you down all those years!"" Finally, I realize whether docs found it or not, I (was)am as sick as I thought.

I'm going to check on "The Mighty" too. I hope your aches and pains get better and that you are doing well. Thank you for always getting back to me. You are such a sweet lady and I appreciate it. Will let you know about Monday.

(((hugs)))

Marnee

[Hidden in reply to Marnster]

Thank you for your kind words. I am glad you had a nice time with your family and you enjoyed your walk. You seem to be doing all the right things to ease your pain, losing weight, eating well, trying to be active and I agree this disease makes life difficult sometimes.

I have been tested for RA many times but always negative. When you are finally diagnosed it will be a great relief it as was with me. I went through the shock then anger, mostly that it was missed for many years and then acceptance. My husband warns me not to do much as he knows that I feel ill the next day. Him and my daughter both understand, my sons just say your always ill mum! My friends are good most of them understand.

I really hope you get on ok on Monday and would like to know the outcome.

Sending hugs too xxx 😊

[Hidden in reply to Hidden]

Sorry this is Patsy164, I opened an account with Akibio16 and don’t use it must delete it. X

[Marnster in reply to Hidden]

Hello!! I wanted to tell you that I had my doc's appointment this afternoon. Oh my gosh, my husband is right, this doctor was fabulous!! To get right to the point. She doesn't think it's Bronchiectasis but thinks it's an autoimmune disease attacking my lungs and possibly other organs. She thinks me having pneumonia and pleurisy a couple of times, may have damaged some nerves, too, so she put me on Gabapentin.

To be honest, I have had these systemic manifestations, that were overlooked for so many years, I forget about them and focused on my lungs. It was always Fibromyalgia and Irritable Bowel Syndrome and there's nothing they could do. She is sending me to an ENT, Pulmonologist, Rheumatologist, and a Dermatologist for a rash on my face and finger/nail changes. My finger nails keep flaking and the skin above my cuticles are changing. She said if they can't get to the bottom of it she may send me to Mayo Clinic. She is very aggressive. I have never had someone like that before! And I love it!!

I go for blood work tomorrow and HRCT Monday. Also PFT on Monday, right after the HRCT. She said they will check for Bronchiectasis, too, even though she doesn't think that's it. She asked so many questions and listened to my hubby and I, too.

I don't know this is a lot to take in. Even though I knew for so long something was wrong it kind of hit me like a ton of bricks. Not sure what to think but staying optimistic.

I hope you are doing well. Even though I may not belong on this site I may check in to see how you are doing. My friend many, many miles away.

Thank you for your kindness and caring. I really appreciate it and it can make a world of difference to anyone who feels alone.

(Hugs)

Marnee

[Patsy164 in reply to Marnster]

Hi Marnie I am so glad you are beginning to get answers, it’s like someone can actually help me and understands when this happens.

Your symptoms are so much like mine but some you have said about your fingers and rash are not. I’m glad you are having the Hrtc scan and pft done that will elimate bronchiectasis. Don’t say you don’t belong on this site you have lung problems so that’s what we are all about. I was reading on the bottom of the webpage that healthunlocked covers more than just lung diseases it covers many diseases.

I would like to know your diagnosis when you have had all your tests done. My friend had to go on gabapentin for a while for Trigeminal neuralgia and they helped enormously.

It has been nice for me to be able to talk about my illness as my family just look at me as just being always ill and they care but never fully understand. The only one who does really understand is my husband and gives me his full support, as your husband does.

I felt like you did when I got my diagnosis and wasn’t optimistic but you end up accepting it eventually. You are right you do feel alone sometimes with any illness but being able to share makes such a difference.

Keep in touch when you can my friend it’s been lovely to talk to you 😊

(Hugs)

Patsy xxx 😊

[Brenda102]

Hi Marnster,

The Levofloxin is a fluoroquiniline thoe drug. It can cause muscle and tendon weakening and aching. It is best to go east for awhile so you don’t tear a tendon, plus tell your Dr. You can look up the side effects in case your Dr dismisses your concerns.