Pain and IPF: What’s the Deal?
I am sure there is some underlying rule that a patient will have some type of pain when diagnosed with a chronic illness. Either that pain will come from the disease itself, or it will be a secondary symptom of it, such as inflammation, sore muscles, etc.
Until recently, I haven’t had pain since my diagnosis of idiopathic pulmonary fibrosis (IPF). But that seems to have quickly changed. Perhaps my pain is not associated at all with my lung disease, although that’s doubtful. What’s hard for me is that I cannot think of anything I have done physically that would have caused this type of pain. So, by process of elimination, I think it must be my IPF.
When the body is chronically under-oxygenated, the muscles, tendons and joints are fed less of what they need, which is oxygen-rich blood. According to my massage therapist, even bones can become weakened.
I’m sharing some of the painful symptoms I have had over the past few months, without really knowing why I’m in pain. I’m curious to hear if others living with IPF have had similar experiences. I also have included what I have done to alleviate that pain temporarily so readers can seek medical advice and try these things, too, if needed.
- Lower back pain that shoots down into my legs. This is a new symptom that is extremely annoying. It stops me in my tracks when I lean forward to pick up something, and it hurts in my pelvis when I cough or sneeze. The main source of relief I have found for this is taking a painkiller that addresses inflammation, specifically, and applying cool packs on the primary source of the pain. I have also sought out massage therapy, as I am not a big fan of taking excess pain medication. Upon examination of the pain, my registered massage therapist discovered that I have stressed the muscle in my lower back that is responsible for twisting, bending and lifting. That is also the muscle that is the “connection hub” for my hip flexors and my glutes. Is it any wonder that I am having pain throughout my lower back and legs? She recommended an acute period of having massages regularly, so I am scheduled to see her every week for a few weeks. She also suggested I perform a pelvic tilt when things are really sore. This exercise should stretch out the muscle that is inflamed and sore, and it is something I should also be doing before I complete a movement that causes pain such as bending down or reaching to the floor. These are two methods of relief I hope will address this new pain I am experiencing.
- Swelling and fluid retention in my feet. My physician says this is likely because of medications and not the disease itself. Nevertheless, it still causes pain and discomfort when I try to be mobile. The first attempt to alleviate this has been to put me on diuretic medication to help lose some of that built-up water. She has also recommended elevating my feet above my heart frequently for short periods. This will help alleviate the build-up of fluid in my feet, and by elevating them for only a short period of time, it won’t disperse the fluid too quickly to other regions of my body. I have also had a fluid tap in my feet where a needle is inserted to drain excess fluid. This is uncomfortable, but it is the quickest form of relief. Lastly, another medical professional suggested any of the topical icy/cold rubs, which will reduce swelling and inflammation, and hopefully alleviate pain.
- Tight chest and back muscles from coughing. Unfortunately, a constant dry cough is a symptom of IPF, and I don’t anticipate it will go away anytime soon. This regular motion of coughing and repeated use of these muscles is causing pain and discomfort from overuse. The only recommendation from a professional I have to alleviate this is to be mindful of my posture and where I am carrying stress in my body. We tend to carry stress in our shoulders, which then tugs the muscles of our upper back and chest upward, contributing to their soreness. When I am sitting or standing for long periods of time, I consciously try to be aware of how I hold my upper body so that these muscles that are sore from coughing can feel relaxed and open to receiving as much oxygen as possible.
Do you have any additional tips to share?
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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
Al Clark
Pain shooting down the legs can be caused by compressed nerve, usually near lumbar #4 or #5. I had this issue before I was diagnosed for IPF and had microdiscectomy surgery that cured it instantly.
It recurred several years later and another surgery cured it (by this time I had already been diagnosed with IPF).
However, I now have a pain; not shooting down the legs but right above right knee joint at back of knee and it only happens when I start walking. I don't know if that is back related or oxygen related. I notice that walk tests for the lungs always ask if your legs hurt after the walk test.
Jorgen Piene
Hi
I have read your note with interest as I havn't had any pains so far, now 1.5 years after firm diagnosis. So I wonder what oxylevel you usually have at rest and activity. and if you are on oxytherapy.
The only discomfort I am experiencing is when I am running low on O2, it is bad but I know after some time it is back to 85+ and things start to normalize.
Sandy
Tips I learned from 31 days in rehab for my back. (I’ve had multiple fractures). When bending, always, always bend your legs! Go to google and ask for exercises for lower back. I have a bunch for upper and lower body with weights (mostly all while sitting) with 2 upper and 2.5 lbs lower. Also, when standing, hold in your core and when standing starts to bother you or before, sway back and forth. These all work for me and I hope you too!
Sandra Bereza
I have found that otc lidocain patches help with the muscle and nerve pain in the lower back and down the leg. There are several different brands but I have found the Aspercreme works quite well for me.
Peg O
I found that doing heel raises while seated (just raising your heel, leaving your toes on the floor) took care of foot and ankle swelling. It engages the Soleus muscles, called a "second heart."
Andre
I do chi qong and Tai chi Evert day,i took a different diet,and my coughing went down 85 procent.iam 64years old from Holland and sorry About my english .and for pain medication for me THC
Patty Nickolaus
I'm wondering if anyone else experiences severe headaches if awakened suddenly, like by an alarm clock or sudden noise? It's been happening to me for almost 30 years, before I was on oxygen, and doctors have no clue. If I can go back to sleep and wake up on my own, the headache is usually gone. I'ts been suggested that it may have something to do with breathing shallower when asleep, causing low oxygen and the buildup of of CO2. I've been on full time oxygen for several years now, but it still happens.
katherine broach
I used pain patches sucessfully for a few years and soon the adhesive gave me terrible rashes so I quit using them. I am 79 with many years of arthritis which i manage with tylenol arthritis. However, my 5th year since diagnosis begins soon and the pain is almost unbearable at times. I do get relief in my recliner or bed. I shared before that I have outlived the terrible cough. I hope this brings hope to someone out there. My fatigue has lessened and my air has increased amazingly since I no longer take the beta blocker Metatoprol/Toprol. I have remained at the well spectrum since diagnosis 4 years ago. I don't take any of the IPF meds yet or require oxygen. I am blessed to be retired with grown children. My heart goes out to the young victims of this disease. God bless.
Robert B. Dunlap
I have been diagnosed with IPF and have been on OFEV for several months . also I have reduced my use of oxygen significantly. My heels knees and hips have been hurting. Any ideas?Thank You.
betty
Hello Robert - I was diagnosed ipf in April 2016 - my heels hurt when I walk and I am suffering clubbing in my fingers and toes - my specialist has put me on no medication except to aid my lack of sleep - best wishes
Patty
I was diagnosed 6 yrs ago. Was put on oxygen 4 yrs ago during exertion and sleep and I've been taking OFEV now for 2 yrs. I have a lot of GI issues with nausea at times, but it decreased my coughing and I can still lead sing at my church, which I am very grateful for.
I feel positive thoughts is what keeps me going as well as I am.
Phil Callaghan
Phil C,
I am into my fifth year since the diagnosis and am on Esbriet.Over these years,I have had a variety of what I try to describe as muscle spasms,contractions,which can stop me and hold me disabled for several moments(usually in the rib cage area,back or chest.I recently talked to my respirologist about this and he put me on a drug called apo-gabapentin.I have only been on this a few days and will not know it's effectiveness for a while,It can help in seizure like events.I will see.
The comment section is interesting for me.Thanks.
Roz Pam
Hi, I,have been diagnosed with interstial lung diseases 10 years ago. I have had my. Bouts with days of coughing and staying on the couch for 2-3 days. Fortunately I am retired (71 years old)
I find myself getting out of breath from walking from one room to another lately and having severe muscle spasms under my breast bone and my bach, which cause excruciating pain.
Don’t no were or which Dr. To see. My pulmonologist is not much help. Can anybody recommend a pulmonologist in south east Florida?
Charlene Marshall
Hi Roz,
Thanks so much for writing to us. Unfortunately, I am not much help in terms of recommending physicians in Florida as I am in Canada. That said, have you heard of our PF New Forums? The link to join can be found here: http://pulmonaryfibrosisnews.com/forums/ and there may be people on there who are from Florida and can recommend someone for you. Sorry to hear of the troubles you've been having, and especially that your pulmonologist isn't much help. That is so difficult for you! Wishing you luck in finding a doctor that will help with your needs... hang in there!
Charlene.
Pat
How far r u from northern fl? They have a Mayo Clinic there. They r suppose to be the best in that field.
Kathy
I am 8 months into my diagnosis. I too get those disabling muscle spasms in my stomach area.. I am not currently on meds for pulmonary fibrosis... Just take what comes for now..
Charlene Marshall
Hi Kathy,
Thanks so much for reading my columns and getting in touch via the comments. I'm really sorry to hear about the pain and muscle spams you experience following your IPF diagnosis. Do you anticipate having to go on either of the two anti-fibrotic medications for your IPF? Hang in there and feel free to write anytime.
Warm regards,
Charlene.
Solange
Once diagnosed with IPF, OFEV or Esbriet help to slow the progression of IPF.
jill
I have periods of severe muscle spasms in my upper abdomen and rib area. It is awful pain. It takes at least an hour for it to subside. This is after I had a thoracotomy three years ago for empyema due to double pneumonia.
Charlene Marshall
Hi Jill,
Thanks for reading my columns and reaching out via the comments. Really sorry to hear about the muscle spams and pain you're experiencing, that must be so frustrating and at times, debilitating. Is there anything you've found that helps alleviate the pain?
Take care,
Char.
Brian
Hi I'm 57 and have had an initial diagnosis 3 days ago by CT scan of IPF. Am waiting to see a specialist. I think 57 is quite young, I don't know. I'm pretty fit and have never smoked in my life. Feeling pretty bad at the moment.
Thanks for this website
Katherine Broach
I am just seeing your comment, Brian, from the week you were diagnosed and interested in knowing how you are doing these many months later. I wonder if you were exposed to second hand smoke or even exhaust fumes, not that we know where this disease originates. Most recently I read it might be from reflux and i guess that is as good a guess as any. I worked for 12 years in what i think was a 'sick building' with manufacturing taking place on the floor just below where i worked as a word processor. I am beginning my 6th year w/the New Year 2019 and am still relatively well, w/o meds or oxygen at age 80. I thought I outlived my cough but it is back with a vengeance and the fatigue is relentless. Blessed by retirement.
Best of luck.
Shirin
I’d suggest a second opinion as sometimes ipf can be mistaken in the ct scan when it’s actually pnumenitis.
I know of a friend who actuallly went for a second opinion and a good job she did cus it was not ipf as thought. The only way to be sure it is not ipf is request I biopsy of the tissue on the lungs. All the best thinking of you
Charlene Marshall
Always such a good tip/recommendation Shirin, thank you for the reminder. Its also good to ensure that second opinion comes from a lung specialist/pulmonologist whenever possible, as IPF is so hard to accurately diagnose. Thanks for sharing your thoughts :)
Charlene.
Solange
Brian, you’re young. Though we may not be able to beat IPF yet, so try to remain upbeat. I remember when I was first diagnosed last year, it hit me very hard. Stay upbeat and active!
Charlene Marshall
Hello Solange,
Thanks so much for reading my columns and reaching out via the comments. Its nice to hear from you. I know you were replying to Brian, but I just wanted to connect and let you know that when I was diagnosed with IPF at 28, it hit me like a tonne of bricks too! It was awful, but now I cope with it much better (some days are still so hard) and I admire your suggestion of staying upbeat. So important, thank you for the reminder!
Charlene.
Kathleen gray
I am 58 and Bn diagnosed with pulmonary fibrosis in my right lung,, am fed up with the constant pain in my shoulder neck and arm
Charlene Marshall
Hi Kathleen,
Thanks for reading my columns and reaching out via the comments, although I'm so sorry to hear of your pain. In addition to the exhausting struggle to breathe, being in pain is also very tiring. I hope you and your doctor can find some relief for the pain in your shoulder and neck. Massage has also really helped me with pain!
Hang in there,
Charlene.
Mary-Ann Holm
I am 57 as well. I was just diagnosed with IPF at Christmas. Merry Christmas to me. I'm feeling pretty down. I also have an auto immune disease that nearly killed me in my 40's. If you need someone to talk to who understands I'm available. I'm waiting to start Esbriet, are you taking anything? I'm also on oxygen.
Charlene Marshall
Hi Mary-Ann,
Thanks for reading my columns and reaching out via the comments. Though, I'm so sorry to learn of your recent IPF diagnosis, and at Christmas nonetheless. Hang in there, it is natural to feel down but it's important not to let those feelings consume us too. A lot of patients find hope and support from connecting with others. If you're interested, feel free to join us on the PF forums: http://pulmonaryfibrosisnews.com/forums/ .. there are a lot of amazing people on there who can provide support and understands what its like to live with this disease.
Feel free to write anytime.
Charlene.
Alice
My partner is 47 and he got diagnosed 3 days after his dad died of lung cancer. Im 33 and we have a 5 year old boy together. And to get told hes got a awfull condition which is rare in people his age breaks my heart for last 2 weeks hes been in unbearable pain in lower back and sides what pain medication can i get him please. Hes to scared to go doctors because of coronavirus.
Vivian
My husband is in his 7th year with ipf. He has been taking pirfenidone (esbriet). The cost is covered by the drug company. I consider it a super drug. His regular exercise and a semi regular month long stay in a rehab hospital have both helped to slow the progression of the disease. Seven years and counting
Charlene Marshall
Hi Vivian,
Thanks so much for reading my column and for getting in touch by sharing your husband's experience with IPF and Esbriet. I'm so glad this drug has been helpful for him in slowing down the progression of this disease. He sounds very motivated as well with regularly exercising... kudos to him as this is not an easy thing! Hoping this stability continues for your husband over the next 7+ years. Wishing you nothing but the best.
Warm regards,
Charlene.
Patty
Hi my name is Patty I’m 53 years old was diagnosed with IPF in 2008 was doing good until 2017 now the Drs are considering lung transplant uncontrolling coughing oxygen at 4liters I hope everyone out there that has this be blessed.
Charlene Marshall
Hi Patty,
Thanks so much for getting in touch with us and sharing a bit about your experience. Wow, I'm so happy to hear (gives me a lot of hope!) that you're still doing well from 2008 to 2017, although I know things seem to be tough for you now if you are considering a lung transplant. I hope that consideration goes well, and that everything works out for you. Sending blessed thoughts back to you and thanks again for connecting!
Warm regards,
Charlene.
Patricia Taylor
Why does he hocto hospital while on Esbriet Is there a reason why he is hospitalized. I have knee pain and calf pain at night when I sleep. My knees feel very hot but no redness. Have trouble sleeping
Charlene Marshall
Hi Patricia,
Thanks for reading my columns and getting in touch via the comments. I'm not sure if you're asking us whether someone needs to be hospitalized on Esbriet? Is that what you're hoping to find out? They shouldn't be, as long as they can tolerate the drug and your symptoms aren't too bad. Just double check the heat doesn't turn into redness or swelling, which could indicate a reaction or infection. I hope you're able to sleep a little bit better soon, I know that is one of the worst things for me and this disease. Check out the PF forums on tips to help improve sleep if you want, the discussions can be found here: http://pulmonaryfibrosisnews.com/forums/forums/topic/finding-a-balance-of-rest-productivity-on-the-weekend/
Take care,
Charlene.
Mary Adams
Hi all I was diagnosed 3 years ago with IPF still not on oxygen yet thankfully , but I started having pains coming through the front of my chest out my back I can hardly breathe. I also have chronic back pain that I get injections for and long lasting pain meds that do me no good for the pain but the injections on upper back work not bottom. Could this be caused by IPF or is it just my back, had back trouble for 5 years so I am confused right now my lung doctor retired and a lot of the doctors no nothing about IPF themselves. Any help appreciated, bless all.
Charlene Marshall
Hi Mary,
Thanks for reading my columns and getting in touch! Sorry to hear of your IPF diagnosis, and that you're struggling with pain in your back and chest... what a terrible experience this must be for you. Unfortunately, I think based on the symptoms you're describing, this certainly might be a side effect of IPF. I'm not a doctor though, so please keep that in mind. Do you cough on the regular? Right now where I live it is very humid, and the air quality is poor so I am coughing a lot and my chest, upper back and shoulders hurt pretty badly. It also feels as though I can't get a deep breath in without coughing. Very frustrating! This could be your experience too if you're having a dry cough on the regular, even if it isn't a forced cough. Something to consider anyways? I hope you're able to find a new pulmonary doctor that you're comfortable with! Best wishes to you Mary.
Kind regards,
Charlene.
Carol ann
Hi my husband is in his 2nd year of idiopathic pulmonary fibrosis, unfortunately prifedone didn’t work for him, the liver started to deteriorate and his Gaul bladder as thickened, he as a lot of pain down his left arm and shoulder. Bad legs and can’t walk very far, tired all the time, most days in bed at 4pm, loss of appetite and only eats foods cut in little bits or porridge,rice pudding, welli suppose this horrible illness is different in each individual, not nice ?
Charlene Marshall
Hi Carol ann,
Thanks so much for reading my columns and contributing your thoughts to this thread. Although, I certainly wish these weren't your husbands experiences. It sounds awful, and yes this disease is very individualized but cruel to everyone who gets it unfortunately. Wishing your husband better days, and comfort.
Kind regards,
Charlene.
Richard Quiggle
I have had Ipf for around
8 years now on oxygen all the time now, and getting a lot of cramps in my chest is this common with anyone. Thanks
Charlene Marshall
Hi Richard,
Thank you for reading my column and for getting in touch. This side effect of IPF isn't something I've experienced personally (I don't think, unless it feels like heart burn?) but I would imagine many others have. Have you joined our Pulmonary Fibrosis Forums? The link to do so is here: http://pulmonaryfibrosisnews.com/forums/ and I only ask because there are a number of wonderful patients on there who might have a similar experience as you do with the cramps in your chest. They could give some insight into it maybe? I'll let you decide if you want to join us, and sorry I couldn't provide more insight into this as it isn't something I've experienced yet.
Wishing you well.
Charlene.
Barry
Hi Richard, I was diagnosed with PF in 2000. There were no drugs for it then. The Lung Doctor told me I didn't need to come back, there was nothing he could do. I figured if he was that big of a horses ass I would do without a Lung Doctor and here I am almost 19 years later. I'm on oxygen at night, only get to 83% when I try to do too much. During the day I'm above 90. The cough went away 10 years ago. It was so bad I tore muscles in my side.
I have had chest cramps for over 20 years. Last night they woke me up 6 times, makes for a long night. I have yet to find a solution. I think quinine might help but I haven't tried it yet. Hang in there buddy. You don't have an expiration date.
Charlene Marshall
Thank you so much for sharing a bit of your story Barry, I so appreciate it hearing it even though your reply was to Richard. It filled me with a lot of hope, thank you :)
Charlene.
Sue Howitt
Recently diagnosed with PF, cause now known, my old job had me breathing in zinc chloride daily for 28 years, also have emphysema.
Had a severe crisis a couple of months ago which has left me in pain in my back, cramp like symptoms and under my ribs. Prednisolone has worked absolute wonders for the coughing, tiny dose of 1/2 tablet and I rarely cough. Being put on the French version of Esbriet at the end of August. I am so lucky to have been put under the care of the very top man after being passed from another pulmonologist that sort of panicked when finding the two diseases together, got a letter from the other hospital marked *urgent* and when I phoned to see what it was about they asked me to come in at my earliest convenience, hospital not close so I knew it was bad. For the swollen legs and feet I have found that drinking as much water as I can stomach has completely cured them, no longer swollen and itchy. I am not on oxygen yet but struggle to take deep breathes, hurts in my lower trachea as I do have nodules there too, and ribs. I am 72 and have always had delicate lungs from young, regular bouts of pneumonia. As soon as I can breathe better I intend walking my 4 dogs again, I live in the mountains so hasn't been easy.
Charlene Marshall
Hi Sue,
Thanks so much for reading my columns and for getting in touch, although I am so sorry to hear of your PF diagnosis. What a difficult time for you, especially knowing that it was your career that caused your lung disease. That must be so tough! Sorry also to hear of your respiratory crisis, those are scary and I remember how many symptoms (such as back pain, rib discomfort etc) it can bring on. So glad to hear that the Prednisone is helping you and working for the cough. Are they doing anything to treat the emphysema for you? I'm glad that drinking water helps you, and that they aren't uncomfortable for you anymore. Take good care and will be praying that you feel well enough to walk your dog! We have one, and she is the light of our life so I can imagine it is upsetting to not be able to walk them :)
Take good care,
Charlene.
Whit Wright
Ipf diagnoses in Dec 2016, using OFEV and on oxygen approx. 12 hours per day. Recently developed tightness in chest and difficulty with deep breaths. The tightness reminds me of pneumonia I had years ago.Other than ipf in good physical condition. Curious to know if anyone has ever changed medications from ofev to esprit? Thanks for your comments.
Charlene Marshall
Hi Whit,
Thanks for reading my columns and for connecting via the comments. Sorry to hear of your IPF diagnosis in December 2016, and the need for supplemental oxygen and OFEV. Its so tough to experience chest tightness isn't it? I find it really scary, because like you, it makes me fear that I am falling ill with a viral or bacterial infection such as pneumonia but usually I'm not and it is just IPF-related discomfort. Glad you're in good condition otherwise. I have only been on OFEV so unfortunately I wouldn't be helpful to share information about switching to Esbriet, but hopefully someone can connect with you about this. Wishing you well!
Kind regards,
Charlene.
katie broach
I am on gabapentin for neuropathy and it has helped my cough. I later read on line that it can be helpful for IPF coughing. I love a multi task med. This week a friend suggested Pedialite for the leg pains. I thought like the old German gma: No harm can it do.
Charlene Marshall
Hi Katie,
Thanks for getting in touch with us regarding this topic. As always, it is nice to hear from you and I hope you're doing as well as possible. I've not heard of gabapentin being effective for the cough, so that is really reassuring news to hear! I'm sure others will really benefit from this information as well. I love a multi-tasking medication too :) Did you find Pedialite helps for the leg pains? I'm having this at night time as well and something as "simple" as Pedialite would be welcomed to help with this! :)
Cheers,
Charlene.
Terri
I also take gabapentin for cough. It works wonders for me.
Charlene Marshall
Hi Terri,
Thank you so much for sharing this, I am sure others will find it informative too. There are lots of folks looking for a cough suppressant, so they will be eager to learn about it. I am so glad it is working well for you :)
Charlene.
COZAD, IVONNE
Hello
Thank you for sharing your thoughts. I have been diagnosed for a few months but have this cramps under my ribs for over a year. It comes and goes but some days are harder than others. I've also had a lot of join pain but that's probably from my RA which I had for over 10 years. I'm 37 and have two little ones so being down is not much of an option. I also found that changing my diet really help.best luck.
Charlene Marshall
Hi there,
Thank you so much for reading my columns and getting in touch via the comments. I am 31, so it is nice to hear from someone who is similar to my age, although so sorry you're having to deal with this also! The pain in your ribs could be from coughing for sure, what helps me with this is heating pads or a topical hot/cold ointment to relieve the discomfort. Massage also helps me! Thanks for sharing the idea of changing your diet too, I appreciate hearing what works for others. Wishing you the best.
Charlene.
Rich lu
I have not been diagnosed but I have similar symptoms. I have lower back pain and pain in my chest. Nothing helped! But now I’m better. I take tramadol 50mgs but what really saved my sanity was 1000 mgs of CBD cream. It truly works wonders. You can order online or find locally. I get mine from a gal in california. Thankful to not be diagnosed but depressed I have multiple symptoms. Best of luck to everyone here and those working on a cure
Charlene Marshall
Hi Rich,
Thank you for reading my columns and reaching out via the comments. Sorry to hear you're experiencing the symptoms mirroring IPF - they can be so difficult to navigate, can't they? Thanks for sharing about the CBD cream. The talk about CBD oil has been very popular in various platforms, but I'm not sure anyone has written about a cream so I'll need to look that up. Hang in there, and thanks for sharing what helps you.
Sincerely,
Charlene.
Shayla Joy
No diagnosis yet, but stiffness in lungs. Mild pulmonary arterial hypertension, beginnings of restrictive lung disease. Can’t take deep breath. Have autoimmune diseases.
Charlene Marshall
Hi Shayla,
Thanks for reading my columns and connecting via the comments, though so sorry you're enduring pain and stiffness in your lungs indicating a restrictive lung disease. These diseases so us no mercy, and I can relate to how difficult not getting a deep breath is. Sorry to also hear about the autoimmune diseases, there is some literature to support lung diseases are connected to certain autoimmune conditions so I hope your doctor is looking into this too. Stay strong and feel free to write us anytime!
Charlene.
Evelyn McCullough
I am 49 Yrs old and I am a lupus patient. I have had my spouts of complications but now I am diagnosed with cystitis of the lungs. Wow. I did the chemo infusions for 12 months to help with the lupus for it had already started in my muscles, nerves, joints (even went into renal failure but I came back out). Now the lupus has spread to my lungs. I have a 12 yr old son. How do you tell a child you may not live long? I am in constant pain in my chest.
Charlene Marshall
Hi Evelyn,
Thank you so much for reading my columns and reaching out via the comments, though so sorry to hear you're dealing with this condition now! It's so cruel, and to have it develop from another condition seems truly unfair. Have they diagnosed you with IPF/PF or was it "cystitis"? I don't know the latter term, but I am not a physician so that doesn't mean anything. Sorry to hear you're dealing with a lung disease in any case...
Regarding your son, this is a really delicate topic but I think it is important not to overthink what to tell him, when, how much etc. I have training in child & family therapy and one of the most stress-provoking things parents do is try to plan the conversation with their child, whether it comes to illness, grief, death/dying, etc. Kids are incredibly resilient and what they need to know pertaining to something difficult is different for each child. I'm happy to provide some thoughts here if you want to email me: [email protected] but I completely respect your approach as well, as you know your son best. However, I'd recommend assessing what is understanding is of your illness and start there, not with the thought of not living very long as none of us really know this with certainty :) Not sure if this helps?
Char.
Alice
My partner is 47 and he got diagnosed 3 days after his dad died of lung cancer. Im 33 and we have a 5 year old boy together. And to get told hes got a awfull condition which is rare in people his age breaks my heart for last 2 weeks hes been in unbearable pain in lower back and sides what pain medication can i get him please. Hes to scared to go doctors because of coronavirus.
Charlene Marshall
Hi Alice,
I'm so sorry to hear of your husband's experience, especially after the loss of his Dad. It's important to know that many people with IPF can manage to live with this disease for a long time, even if it means navigating life with supplemental oxygen as the disease worsens. Try to read only credible sources of information on IPF, not "Dr. Google". Your husband's doctor should be able to do a video or phone consultation with him and prescribe pain medications. Is that an option? He shouldn't have to go in, but if things get really bad it is important to weigh out the benefits (pain relief) with the potential risk (covid-19) of going to the hospital. The hospitals are doing everything they can to keep patients safe. Take care, Charlene.
Rick DeArman
I will be 74 in a couple of weeks. I was diagnosed with IPF in March 2018. I have been on Ofev over 3 years and I have found that it has helped. I have been a gym-rat for over 8 years and that has helped as well. I continue to exercise regularly. Recently, I have developed severe pain in my chest and rib cage. I have coughing attacks and my oxygen gets so low during those times that I have come close to fainting several times. I am seeing pulmonologists both locally and at Emory Medical Center. At my age, a lung transplant seems to be off the table. Lately, I have had more difficulty breathing than in the past. I have to assume that the disease is getting worse. Because I am reminded that I have this disease every time I breathe, I have found myself thinking about death a lot. I work constantly on staying positive but it can get to you very easily. My prayers are with everyone who has this disease. It wasn't supposed to be this way when I got "old".
Marsha Doolittle
I was diagnosed with IPF 4 years ago at age 57. I also suffer from severe spasms in my upper abdomen and rib cage. Initially, following lung biopsy surgery, I only had spasms where the front incision was placed. Over time the spawning has spread out. I also feel pressure. Following a spasm attack my upper abdomen will feel like I did way to many sit-ups for the next few days. I have spoken to the surgeon, pulmonologist, rheumatologist and a pain management doctor and have not received any information other than strange looks. . If these spasms occur while around others, I cannot help but muffle a scream while bending over and gripping the spasm. I’m so grateful to hear someone else is having these strange symptoms. I was really feeling a bit crazy. I’m sorry you too suffer with this.it is definitely not fun and a huge distraction as well as so painful. Let’s not give up and hopefully someone will have an explanation and can offer help! Thank you!
Jan Zacharias
Lung issues seem to run in my family. I was well into my 60s before I hit a patch of ill health that included two pneumonias and a bronchitis or two within a few years. After a series of tests procedures, I was diagnosed this year (2022) with NSIP after a lung resection biopsy. I have only paused my coughing for brief periods over the past 5 years when taking prednisone. I'm also taking cellcept, a sulfa drug, decongestant, and antihistamine and using an inhaler and two different nasal inhalants, plus a few meds for my GERD. I have experienced back pain, chest pain, and abdominal soreness, probably from holding in my coughs so much. I live with a Ricola cough drop in my mouth, because often I can't get my words out (no one seems to know what that's about). I have learned a few breathing exercises that seem to help me and I am able to walk for a couple of miles a day, for which I'm grateful. We are about to move, and I'm anxious about finding all new doctors, plus the exhaustion of moving. I have learned that I just have to rest more often; I'm not the force of nature I was for my first 60 years.