Some Lesser-Known Side Effects of Pulmonary Fibrosis
It only takes a moment for someone to Google pulmonary fibrosis (PF) to discover a list of unpleasant symptoms that accompany this disease. Some of the most common symptoms include shortness of breath with exertion, dry cough and fatigue. As you may imagine, there are many other diseases, or even common illnesses, that can mask these symptoms of PF. This makes the diagnosis of PF that much more difficult.
In trying to diagnosis my episodes of dyspnea over 13 months, I was misdiagnosed with asthma, chronic fatigue syndrome, bronchitis and multiple chest infections. I was treated for these accordingly, simply because my symptoms were so common to these other diseases. I don’t blame anyone for misdiagnosing me throughout the year, because who would have thought a disease like idiopathic pulmonary fibrosis (IPF) would have targeted someone at the age of 28? I sure didn’t suspect anything like a diagnosis of IPF. In fact, I consider myself lucky that it only took a little more than one year to receive my diagnosis, since the average time it takes to diagnosis this disease is approximately 26 months.
After outlining these common symptoms, I thought I would write this column about additional symptoms of IPF, and the lesser-known effects of this disease, especially because they often are more difficult to deal with since they are not as common or obvious to others. The following symptoms are my personal experience and observations from living with IPF. A medical professional does not endorse or confirm them in any way, and they do not apply to everyone with this disease.
Inability to sleep: I have yet to determine if this is a physiological or mental consequence of living with IPF. Since my diagnosis, I feel as if my mind is busy all the time, which makes getting a good night’s sleep more difficult. I know that feeling tired and general fatigue is a physiological effect of this disease, but I also wonder if I would feel less tired if I was able to sleep better. I find I wake up in the night either from coughing, feeling short of breath and as a result needing to adjust my pillows, or thinking of an upcoming appointment, test result, etc.
Cold and clubbed fingers and toes: This is one of those symptoms that will appear in the list you Google when looking up PF. Clubbed fingers and toes are a result of chronic under-oxygenation, but of these two effects, feeling cold is a lot more bothersome for me. I always have despised being cold. Now it is not uncommon for me to have to run my hands and feet under warm water to relieve the discomfort of my fingers and toes being constantly chilled.
Muscle and nerve damage: Perhaps this is not a symptom of the disease itself, but during a recent setback and hospitalization, I am now dealing with a significant reduction in muscle tone in my left foot. I was given medication via various IVs, and one was in my left foot, and “popped.” The medication leaked, causing damage to my muscle. It is a work in progress and in time may resolve itself, but it also may not. So, I am left dealing with a droopy left foot due to lack of muscle strength. I also feel as if some of the medications I recently had have caused nerve damage and tingling, although this has not yet been confirmed.
Chest and back pain: I have been told this comes from the pulmonary muscles surrounding your lungs, which are responsible for respiration. These can become sore during the expansion and contraction of the thoracic cavity in patients with IPF. Whatever the reason is, this is an unpleasant symptom of the disease, and often leaves me feeling uncomfortable and sore.
Well, there is my list of the lesser-known side effects of pulmonary fibrosis. In my experience, these symptoms are more of a nuisance than the common ones. It is my hope that this column reminds readers, especially those who love someone with IPF, that the lesser-known effects of this disease can be difficult to deal with.
I hope it also serves as a reminder to all of us living with IPF how resilient and strong each of you are for facing this disease.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Patty Marquez
Passing thru TSA at the airport my back caught their attention I have to curve line at the base of my lungs (lots of patting) of they found nothing can that be PG
Terry L Kaly
Curved base of spine. It looks like two backs
Mary
Is this why I have such back pain?
Ron
I find myself being cold or hot depending. I don't know if it's the IPF or my medication. I'm on Pirfenidone (esbriet) and I think it disrupts my sleep and
Thermostat. My mind is also active and I wake up a lot.
Charlene Marshall
Hi Ron,
Thanks for reading my columns and getting in touch via the comments. It is nice to hear from you, although so sorry you're dealing with difficult temperature regulation! For the feelings of cold, I would suspect this is more likely connected to IPF as oftentimes if we're under-oxygenated, it is common for us to be cold. However, I don't know/suspect that case to be the same for when you're feeling hot. Maybe it is a combination of the IPF and medication? I am on Ofev, so I don't have any personal experience to compare with Esbriet. Are you opposed to trying a natural sleep aid, like a lavender oil (to see if it helps?) or Melatonin to help with the sleep disruption? I remember having that too and it makes coping with IPF even harder when we're tired. Something to maybe discuss with your doctor, as our rest is really important. Hang in there and feel free to write anytime!
Sincerely,
Charlene.
Donald Phillips
I’m 76 and have all the same side effects as listed above. Clubbed toes, muscle pain in the back, chest, hips, and groin.
Charlene Marshall
Hi Donald,
Thanks for writing, although so sorry to hear you're also plagued with this terrible disease and the side effects that come with it. I hope you're finding ways to alleviate those symptoms and that they aren't too bothersome for you. Hang in there and feel free to write any time!
Kind regards,
Charlene.
Ruby Buchanan
My husband has/had the same issue with sleep. PF doctor recommended anxiety medication. He is currently on Lexipro and Abilify prescribed by his PCP. This medication has made an amazing difference for him.
Ellen Miller
Officially diagnosed with Interstial Pulmonary Fibrosis with Honeycombing almost 7 years ago after decreasing breathing during exertion. Scans have indicated little progression which is good although I’m finding it more and more difficult to walk independently and use a walker with seat indoors. No medication thus far.
I do not share your symptoms. I love cooler weather. With temperatures above 70, with any mild exertion, I sweat from my scalp, down my neck. I have neuropathy which contributes to clumsiness and frequent damage to toes.
Exercise is water aerobics.
Charlene Marshall
Hi Ellen,
Thanks so much for reading my columns and reaching out via the comments. Glad to hear your disease progression is slow, and I'll keep my fingers crossed that it remains that way for you. It seems this disease is so different for everyone - I know many others who prefer the cooler weather like you do, and some who do not. Kudos to you for doing water aerobics for your exercise, this is so important for those of us with a lung disease. Best wishes.
Charlene.
Stanley W Yang MD
Charlene ,
I totally understand what you and others have experienced . I am a 75 years old retired physician. I retired in July 2016. I have been active all my life. I used to be a snow skier, tennis player ,swimmer and work out on a regular basis.
I suffered from a severe flu episode in 2017-2018. I was admitted to ICU for two days and stayed in the hospital for 8 extra days . It took a month to recover to be able to walk around the backyard. Ever since then I felt that I started losing exercise tolerance and loss of appetite and started losing weight. Physical examination and blood chemistry were unremarkable. I attributed Those symptoms to “ out of shape and getting old” as others have described in some who responded to your article. I continued to work out on the elliptical machine although I had to rest for 30 second after 30 second of work out. I continue to work out persistently although each work out take 2-3 hours.
Until November 2019 I was admitted to the hospital for “a touch of pneumonia”.
I had passed out a few times from “coughing hard persistently “. Eventually upon admission to the hospital a “CT scan of the chest reveled pulmonary fibrosis “. I never smoked a cigarette do not have asthma ever in my life and thus “Idiopathic Pulmonary
Fibrosis” was diagnosed. I was the put on oxygen by nasal cannula now requiring 6 liter per minute ar rest and completely bed room bound.
The symptoms most uncomfortable is constant mucus mostly thick and sticky and very hard to cough up. Coughing persistently frequently led to exhaustion . Family members and love one frequently poorly understand the suffering one goes through as outwardly one looks relatively normal although there is evident weight loss. I feel my muscles are so weak and become unstable standing or walking. Additionally my feet started feeling numb and unable to dorsiflexed. Started on “ESBRIET” a month ago hoping to slow down this deadly disease until a cure with “Stem Cells treatment” for lung regeneration become a reality.
Charlene Marshall
Hi Stanley,
Thanks so much for reading my columns and reaching out via the comments. I'm so sorry you have experienced the wrath of this disease as well, it's so tough! The episode of the flu sounds severe, and I'm sorry to hear of your ICU experience, tough recovery and the 2019 admission... what a difficult time you've endured. One of the things I hope my columns illuminate is the struggle we face, regardless of age, from this terrible disease so that others can better understand. Like you say, many family members don't understand fully what patients go through, though not from lack of trying. I hope the Esbriet is tolerable for you, I know the side effects can be tough. Thanks for writing!
Take care,
Charlene.
Stanley W Yang,MD
Dear Charlene
I suspect the severe flu episode damaged my lungs and resulting in my IPF. A study done at University of Alabama has demonstrated that flu virus can damage the lung tissues .
At I was very active until then. After the flu episode My symptoms started . Additionally because of burden of the lungs’ inability to pump enough oxygenated blood through the lungs to the left side of the heart I had repeated episode of Congestive heart failure relied strong diuretic like Lasix to cause diuresis . Congestive heart failure frequent result in excess mucus so time very thick making it difficult to cough up even with nebulizer and Symbicort ,Albuterol inhalers.and mucomyst nebulizer.
Insomnia is a common complication and required prescription sleeping pills to get relieve.
I only time I feel best when I am asleep as I don’t experience any shortness of breath. My dream usually free of IPF .Always wake up with disappointment for being awake and realized the reality of loss appetien,shortness of breath and other unpleasant symptoms that go with the disease.
I have been bed room bound since December admission to the hospital as I require oxygen cannula at 6 liter per minute when the big oxygen concentrator is located.I hope sharing my detailed experience will help others and their loved one to understand this dreadful disease.
Stanley W Yan MD.,
Charlene Marshall
Hi Stanley,
Oh gosh, I'm so sorry to hear about this difficult experience with the flu - how awful! Influenza really can be so damaging to our system longterm but so few people realize that, it sounds like your experience was so tough. I am glad you're doing better but of course, very sorry to hear about the subsequent IPF diagnosis, how tough! I hope some of your inhalers - I'm on some of the ones you mentioned as well - are helpful for relieving some symptoms.
I have no doubt that your selfless sharing of your experience will be beneficial for others Stanley, thank you for being so kind in sharing that with us. I'm glad you're finding relief in sleep, I do as well. Take good care and thanks for writing.
Charlene.
Pepe
Hello Charlene and everybody. Thank you for sharing your information. I was diagnosed with IPF in 2015. I feel there is a huge need for research about the causes of this awful disease that is robbing years of our lives. I am passionate about research and I am sure that patient involvement in drug trials is key to finding a cure.
Conni borwick
Have had this disease since 2014 if not sooner since first doctor
Said asthma. I have been very active all my life ,running,biking,
Running my dogs in agility. Pulmonologist tried immuran,which
I got very sick on,then tried cellcept. Couldn’t take that either
Been on prednisone different mgs for years. Went on ofev 4 years
Ago.remained slowly progressing only used ox at night and when
Tracking/walking with my dogs. 2022 on April 1(April fools day)
Had a heart attack. 5 way bypass later but now unable to be off
Oz. 24/7. Did a great pulmonary rehab program at innova hospital in northern Va,
When I came back to fl . 2023 spring,the disease has progressed much faster .
I did better in the cold than the awful humidity of Florida. Have recently had trouble with so much mucus. Take 1200mg mucinex daily.I can’t seem to have any energy
To exercise and recently after last cat scan suggested to get into palliative care.
They recommend morphine for breathlessness and bad coughing which is fairly recent. I agree that the coughing is exhausting, seems more common in the evening and/or after I have eaten. So take the morphine only in the evening after a coughing spell and it does help me sleep. Since it was impossible to get a good nights sleep! It is interesting how even the very good care team I have no so little about ipf . Copd they are familiar with .