PF Symptoms: Aching Joints and Muscles

[Dianne]

Interesting, I also have fibromyalgia and osteo arthritis so it is extremely difficult to determine what is causing the pain.  Are there others that experience this as well?

[Charlene Marshall]

Hi Dianne,

Thanks for your comment and contributing to this thread! Sorry to hear of your diagnosis of fibromyalgia and osteo arthritis, in addition to PF: what a tough combo to manage.

I found this really interesting as well, and I certainly didn’t suspect aching muscles and joints would be a symptom of my IPF, although it seems like it is based on others I’ve connected with. I am also experiencing this a lot more frequently as well, but I am unsure if it is definitely linked to my diagnosis or not. Do you do anything to alleviate your discomfort?

I hope others respond to this thread as well sharing their experience with pain and discomfort. I have obtained some additional responses in other forums on this site as well regarding pain, feel free to check them out 🙂

Warm regards,
Charlene.

[Chris]

Man, I’m tellin’ ya. I used to be a very strong, active woman, but as this wretched thing gets worse I am severely limited, not just by breathing issues, but by burning pain in thigh muscles and trapezius. I chalked it up to the lack of O2 to the muscles, causing them to go anaerobic very quickly and deplete their glycogen stores. Once that happens, you’re done for awhile. Seems like every old injury is making itself known in spades, too. Sheesh. My thighs burn just walking up the very slight gradient to the barn from the house. And forget about carrying heavy loads very far!

[Joyce Douglas]

I have been having some (actually a lot) of muscle pain and some cramping.  I asked my Dr. re this and he didn’t give me an answer. It is so nice to know that I’m not the only one.  The reason I believe is that the muscles don’t receive enough oxygen and then they begin to ache until the build up of oxygen reaches them.  Or, until the pain relief kicks in.  This may also be the reason my back aches when I stand for too long a period.

[Charlene Marshall]

Hi Joyce,

Thanks for responding to this thread, although I am sorry to hear if your muscle pain and cramping. Do you find this is worse during certain times or the day, or specific activities you’re doing (ie. standing or sitting for long periods of time)? I am trying to track this for myself but it has been difficult with life being so chaotic lately (I am also recovering from a car wreck, so I am having a hard time identifying what is IPF-related and what is not). I too find comfort in knowing that I am not the only one experiencing this, although I wish none of us had to live with pain.

I think your theory about our muscles being under-oxygenated is a good one and this makes sense to me as well. I try to use some topical creams to alleviate the pain (my favourite one is an essential-oil based one) as opposed to pain medications, although I know this won’t relieve the issue of being under-oxygenated. Have you tried this? It gives me temporary relief anyways and then I take pain medications if I need them.

Goodluck with managing the pain, and I sure hope it subsides for you.

Warm regards,
Charlene.

[Joyce Douglas]

Hi Charlene.  Yes, I believe it was because of my aching joints/muscle pain, etc. as well as severe shortness of breath that I ffinally was able to convince the Dr. that I was not getting diagnosed properly.  However, the real cincher in the case was my severe lack of oxygen in my blood – at a 69 and then a 72 low giving the Nurse in the Physicians office the idea that the Dr.s weren’t looking deep enough. A Dr listened to my chest and hearing a ‘Velcro open/close sound’ said,  he was sending me to the hospital on oxygen. I have been on it ever since.  Thankfully. I can breath much better now, but still find that my blood oxygen level dips very fast. Just a walk to the bedroom to pick up something and return to the kitchen area makes it dip.  If I just sit and don’t do ‘anything’ the rate stays about 92ish, if I walk and perform any physical activity along with that it dips to 80 or 77.  It used to recover quickly but I’ve noticed that it isn’t doing the same speedy recovery as it had been doing.  I am very tired and just cannot do anything physical without experiencing the lowering of oxygen in the blood.

[Charlene Marshall]

Hi Joyce,

Thank you so much for sharing, although that sounds like a difficult experience for you – I cannot imagine what oxygen saturations at 69 or low 70s would feel like! I remember feeling as though I was a bit crazy when I was 28 and so short of breath for 9 months before they figured out something was really wrong. When they did that by checking my oxygen saturations, I wasn’t nearly as low as you, so I can only imagine how unwell you felt.

It’s interesting that you share about the velcro sound, which is common and is one of the signs of PF, although my doctor didn’t hear that initially, and still says he doesn’t. It is the only “piece of the puzzle” missing my diagnosis, but he expects it will come in time.

Do you notice symptoms of your blood oxygen levels dropping, ie. light-headedness? Or do you monitor this mostly using an pulse ox? Sorry to hear that it drops so quickly, that must physically leave you feeling unwell on the regular, if it happens so fast…

Thanks for sharing, and I do hope you continue to do well on the supplemental oxygen. I can relate to the fatigue, I’ve really been struggling with that this week and I don’t have any idea why. It is a lot warmer here the last few days, about +28 with the humidex so maybe that is why? In any case, it is a lot of work from the comfort of my couch and bed this week.

Take care and thanks for sharing!
Warm regards,
Charlene.

[Joyce Douglas]

Hi Charlene,  re the topical creams to relieve pain from sore muscles and cramping…I have used Voltaren when I had a fall and that really helped my sore muscles (also ribs as I managed to land on my portable oxygenator! – yeah, I know very clumsy).  I had not used it prior to this winter but I found it comforting and took away the pain to allow me to rest. Like you I am not sure what is IPF and what is sore from something else.

 

[Charlene Marshall]

Hi Joyce,

Thank you so much for sharing about this topical cream! I have used it as well and really like it, as I certainly find it gives me temporary pain relief. I use the essential oil cream from DoTerra as well called Deep Blue, and I actually find this works better than anything else I’ve tried 🙂

Just another option if you want to try it. Glad you’ve found something topical though that gives you relief!

Charlene.

[Joyce Douglas]

I agree that it is exhausting having the oxygen go so low.  Just have to get my Dr. to cue into this and to show him in his office by the oxyimeter next week. Don’t know what he can do though.  I found today by turning up the rate to 4l per min I did better, but when I sit still I don’t require that much. It is a hunt and seek, try and guess how much I’ll need so I can judge ahead of time.  I try to bull through but that isn’t really wise I know. Figure it out, or stop and try another way would be better.   Last night during the night I had an anxiety time come over me and a feeling of impending doom. Hopefully I will be fine tonight. Have to ask him if I can take a anti-anxiety med then or not.  He isn’t a psychiatrist though so he may not even know. G.P.’s rarely do much with psych meds.  However, that was my first time so hopefully I can forgo that for tonight.  Do have a good rest yourself.  I am amazed that you are so in touch with the Forum folk and answer us so quickly. Thank you for your consistent ‘being there’ for us.

[Charlene Marshall]

Hi Joyce,

Thanks for writing back so quickly 🙂

Is this something that your doctor doesn’t know happens on the regular, re: the low oxygen saturation reading? I just worry that if he doesn’t know how quickly it drops for you, or trends of how low it goes, perhaps your oxygen settings aren’t high enough for you? I know you’d be able to determine this as well, as it seems like you have been able to do with turning your oxygen up to 4LPM. I just hope there is something he can do to help you a bit, if he isn’t aware of how low and how quickly it drops. Even to help with the anxiety, as I know the feeling you’re referring to: the impending doom and anxiety attack…. not being able to breathe is terrifying! I always say to people that there is truly no way for others to understand how that feels unless they experience it, which I don’t want to have them do. It’s just such a terrible feeling. An anxiety medication is something worth considering for sure, I know a lot of folks who are on it for this exact reason and they do say it is helpful. Hopefully your GP can help a bit, even if it is a referral if he/she can’t do much about it 🙂

I am just about to crawl into bed for the night, I am hoping that going to bed earlier each night will help combat the fatigue that has been unpleasant for me this week. Not sure what’s going on, but sure hope I am not coming down with something. It’s a hard thing for me to do, but I’ve just said no to helping out others this weekend. I think I really need some down time and some quiet for me to just ‘be’. Take good care, and thanks for the kind words about the forum participation – it is truly my pleasure to be part of such a helpful community. I get so much help from it myself and am grateful to all of you!

Warm regards,
Charlene.

 

[Joyce Douglas]

It’s me again Charlene,  Sorry I didn’t complete my answer re when the pain occurs.  My muscles do not like me to do any amount of walking as that starts the pain in the hips area and if I stand for a while my back now aches as well.  It appears that my muscles are not receiving the amount of oxygen required to allow them to work and they send messages that I am not receiving the amount of oxygen they need.  I have begun turning my flow rate up to 3 and sometimes 4, but only for the short time I am walking or standing.  That does help considerably and so far haven’t needed the topical cream.  That may be next, who knows really.

 

[Sheila Blanchard]

Hi Charlene, I also get occasional cramps and a lot of pain, I didn’t realize it could be my IPF I thought it was osteoarthritis.I use Voltaren when really bad Tyinol. I am not yet on oxygen although I do get readings on my personal oxonimeter of 90’s or slightly above and very short of breath when showering or preparing meals my back gets very painful and legs wobbly. I have been diagnosed for two years but believe because of symptoms a bit longer. I will be 79 in one month.I also have type 2 Diabetes and some Kidney damage. Reading your forum really helps me thank you Sheila

 

 

[Charlene Marshall]

Hi Sheila,

Thank you so much for joining the PF forums and contributing to this thread. I am thrilled to hear that reading the forums has been helpful for you, and please know that you are very welcome here!

It is interesting how many people with IPF also have cramps, pain and sore muscles, joints and nerves but yet aren’t sure if there is a direct correlation between these things and their disease, isn’t it? I suppose it could be a combination of both for you, the IPF and osteoarthritis, perhaps a good question to take back to your physician next time you see him or her? You might need supplemental oxygen based on your saturation readings and this might help alleviate some of the bone pain you are feeling. Did you read Joyce’s post above? I’m really glad to have learned that her turning up her supplemental oxygen alleviates some of her pain. Something good to note for all of us I think 🙂

Best wishes to you and thanks for reaching out!

Charlene.

 

 

[Charlene Marshall]

Hi Joyce,

This is really helpful information to know actually. I am currently on vacation in British Columbia (sorry I haven’t gotten back to you yet on your wonderful comments, but responses are coming: I promise!) and know that I am pushing my body. I have significant pain at the end of the day because I want to keep up and do everything my friends do, but I didn’t even think about turning up my POC to feed my muscles, in addition to helping eliminate my shortness of breath. This is a good tip that I think I’ll try tomorrow!

I am glad to hear that it has been working for  you and that you haven’t needed the topical creams since doing this. I hope it continues for you. Thank you again for sharing!

Warm regards,
Charlene.

[Joyce Douglas]

Hi Charlene.  Thank you for your ideas.  I have been turning up my O2 from 2l to 3l when I am out of the Apt. and also have found if I am walking then I need 4l.  Of course the O2 on the POL depletes more rapidly, but I can charge the POL in my car and am able to take along an electrical cord to plug it into any electrical plugin, which I have done also.  I am going to see my GP Dr. next week and will tell him of the problems of the rapid depletion of the O2 just doing ordinary things in my home.  I monitor it with the Oximeter and often it does go down to 80 or 84, which tells me to sit down and recover the O2 and then retry to finish the chore. I can feel the lower O2 just by having my shoulders and arms ache, as well as legs, if I am walking. This tells me to turn up the O2 and/or sit down and recover.  Purse breathing does help, but not very quickly.  I also have foggy thinking and brain at times when the O2 is lower. At times I am unable to really relax to get to sleep. Not sure what the cause of that is as I was always a good sound sleeper.  Still dream lots though and am enjoying the dreams…quite a nice change from the poor TV programs, ha ha.  But, yes, the brain does seem foggier and though I do solve daily Crossword puzzles and use the Word Find books I still find there are fuzzy times when I am glad I’m not having to take any tests or write exams.  Of course, at almost 80, I shouldn’t have to take them again!

 

 

 

[Charlene Marshall]

Hi Joyce,

Thanks for your reply, and I hope this note finds you doing well!

I’m glad you’re turning up your oxygen to meet your needs, especially during exertion. I had to do this as well, before I actually met with my pulmonologist and confirmed that I needed a higher rate. What really helped me was to track what LPM helped reduce my symptoms and made me feel better, then my doctor and I could look for trends to determine what my oxygen needs were. She said this made her job easier and could incorporate how I was feeling into determining my oxygen needs, as opposed to just relying on my function tests and scans. Just an idea if you think it would be helpful! Glad your body is also telling you what it needs, this helps us identify what chores/tasks might be too difficult without resting and which ones are ok. I’m happy you are going to share the sudden O2 depletion with your GP next week, hope he/she is helpful 🙂

Doing Crosswords or word games is a good idea to help with the “mental fogginess” – which is what I call it! I have this as well unfortunately, and sometimes I think it comes from lack of sleep, where as other times I worry it is due to oxygen deprivation. Hope with your increased oxygen, you can find some restful sleep…this makes such a world of difference in my ability to cope!

Thanks for writing and I do hope your appointment with the GP goes well next week!

Regards,
Charlene.

[Roger Mills]

Hi Charlene,

I have read the above posts regarding muscle cramps and pain. I have notice over the time since i was diagnosed two years ago that i sometimes develop severe cramps in muscles in my chest over my right and left lungs. Also i develop agonizing ones in the muscle area in my inner thighs. It is difficult to wait for them to pass and relax. I wonder if you or anyone else has these kinds of cramps? I am to start using oxygen therapy at night after a recent oximeter test that showed my level dropped below 88 while sleeping. I welcome any suggestions for relief from these cramps. They may too be caused by lower oxygen levels reaching my muscles.

Roger Mills

[Charlene Marshall]

Hi Roger,

Nice to hear from you, thanks for contributing to this thread and sharing your experiences. I am so sorry to hear of your pain, though!

Hmm I can’t say I experience the muscle pain my thighs, but I certainly have it across my chest and upper back. I find my back (neck and shoulders) actually among the worst areas of pain for me lately. Do you have this? Have you been given any pain medications yet for relief of discomfort? I typically don’t like taking extra pain medications if I can avoid it, simply because I feel as though I already take enough medications. I like the topical rubs if I can manage just with those, and my favourite is an essential oil-based pain relief cream. It is from DoTerra, and is called Deep Blue rub. Something worth a try anyways? What about CBD oil, would you ever consider that for pain relief?

Curious to hear your thoughts.
Chat with you soon,
Charlene.

[Chris]

Hi Charlene:
I have a lot of pain in my shoulders, neck, and upper back when I am out walking around. I use Tiger Balm and it seems to help (it’s a counter-irritant). Thigh muscles also get very crabby when walking very far. But then there’s the right hip, which, when it flares up, necessitates a cane (argh!). This is a lovely NEW manifestation. I am wondering if they are connected (i.e. have the same cause).

[Charlene Marshall]

@corgiavenger

Hi Chris,

Thanks for sharing, though so sorry to hear you’ve been dealing with aching joints and muscles. I’ve heard a lot of people say its likely due to being chronically under oxygenated and our muscles/joints having to work harder, but that’s a hypothesis and not proven (to my knowledge). It’s likely connected to IPF somehow, though I can’t be certain how. Maybe worth asking your physician about?

[Dixie Rackham]

I just thought these awful cramps and joint pain was part of aging  I get awful cramps at night in my legs and feet, in the day I can only stand and walk about an hour, then have to sit back down, the awful thing is that I still think I can do all the things I could before. I make plans to be in all the festivals (I’m an artist) just like I used to then find out I can’t make it through, My husband helps sometimes but not to much, I hate to just give up though. Thanks Dixie

[Charlene Marshall]

Hi Dixie,

Welcome to the PF forums!

Thanks for sharing your experience, but I certainly wish you didn’t have pain. Maybe reframe from thinking of it as giving up, but instead maybe just adjusting as your body needs? I think it is so important for us to give ourselves the grace our bodies need for fighting this cruel disease. I pray you can continue on in the festivals as you have… I love art markets and often participate as a vendor in local ones, so I know how therapeutic and wonderful this can be. I’m so glad you have your husband who can help you!

Take a peak at some of the other responses for pain relief, and I hope some of these will work for your pain relief too. Goodluck!

Warm regards,
Charlene.

[Christine Bruyere]

I have had Fibromyalgia for over 20 years and IPF for 10 years – diagnosed March 2008.  My mom and I were diagnosed about the same time and she passed away six years ago on June 9.  My PF was considered stable and of no concern for a few years.  I know that I am going somewhat off topic here and delving into more symptoms in this text than just pain.  However it ties in with the changes in the body that lack of oxygen creates aside from pain.  My pain has increased and has also changed or rather, different types of pain have started up.

The IPF seemed stable for a few years and three years ago I noticed a change but not to such an extent that it changed my life much.   The Fibro had already done that for me years before! One of the changes was when I would be exerting myself – house work, shower, climbing stairs – I would have coughing fits.  When I would feel like I needed air  and would step outside for the fresh air – it made no difference. I developed bone spurs and arthritis in my feet so I could not bear to put my feet down on the floor.  I started taking K2 and this helped so after a few months I could walk again.  A the time, I never connected this to the IPF getting worse but since doing research, of course the lack of oxygen affects all parts of the body.  I also have the clubbing of the finger and toe nails.

One year ago this month I had my first major exacerbation, caused by a trial use of a CPAP machine.  I will never ever advocate the use of that machine for anyone with IPF!   Seeing my lung specialist after that and having a the first CT scan in 7 years – it showed a lot of increase in the fibrosis. Since that exacerbation, my life has changed drastically.    The lack of oxygen has caused my skin to dry and thin out and be very crepey – I am 63 and my hands look 83; I have lots of the brown spots (sometimes called age or sun spots) and skin tags; My body temperature changed.  Where I used to not be able to stand the cold and my hands and feet were often cold and I had to have lots of blankets on at night, I started being hot and not wanting blankets on.  My hands and feet are warm. (those are not changes I am unhappy about.)  Exhertion causes me to have coughing fits;  What I had thought was the Fibro getting worse I am now seeing that perhaps it is the same pain that others are feeling due to the lack of oxygen.  Although, that lack would of course increase the fibro pain as the nerve centre is changed in its function due to insufficient oxygen.  I have sharp pain down the backs of my legs.  My feet have sharp pains on the sides and the top – feels like in the skin.  I liken it to the diabetic nerve pain although I am not diabetic but it was not the type of pain that fibro gives me.

My Fibro fog (unclear thinking) and memory has deteriorated drastically along with my Apptiude.  I am having to give up my bookkeeping clients as it is too much to solve small problems etc.  My head feels dehydrated – best I can say to explain the feeling  – and achy and heavy; I get a bit tongue tied with words on occasion and of course my memory is shot.

I do take Ofev since last November but is wreaking havoc with my stomach, intestines and BMs so am thinking of stopping that soon.  I want quality of life over quantity. I have muscle ticks which I believe is a symptom of lack of magnesium and so I take magnesium and that helps a lot to not have the ticks and lessens the pain.  I do take Melatonin and Tylenol at night.  I have a sample bottle of the CBD and just started trying that – a half dropper a day.  Dont notice much with that so may increase it to twice a day.

I am just starting the process to see if I qualify for a transplant – I have an initial go ahead and will be given a program in May to start on before being listed.  I would like to hear from anyone else with Fibromyagia, especially any that have had the lung transplant.  It will help me decide if I want to go through a transplant or not.  If the Fibro gets worse or the pain does not lessen afterwards I think I will not.

 

[Charlene Marshall]

Hi Christine,

Thank you so much for taking the time to write such a thorough message about your experience and how the lack of oxygen can impact the body by developing certain symptoms. I found your post very informative and I know others will benefit from reading it as well. Please also know how much hope you’ve given me – to know you’ve been diagnosed for 10 years, and still here to share your story with us (despite your pain). Thank you for letting me know that!

May I ask what K2 is? Is it a supplement? I was aware of the clubbing, but I am certainly learning more and more about how chronic under-oxygenation can impact our bones. I mean, that does make sense but it is always beneficial (for me anyways) to hear of others’ experiences.

Did they confirm that the exacerbation for you was directly linked to the CPAP use? I’ve never heard of this but am glad to know. Did you catch a virus from it somehow, or did it just make your lungs work harder? I do find I have the pain in my feet like you talk about, and my doctor described my nerve pain to be similar to diabetic nerve pain, although I am not diabetic either. Did your doctor give you any meds to help with the fibro pain? I am on one (not for fibro) but the nerve pain and I do have to say that I think it has made a difference. It is Lyrica, and it hasn’t been hard on my system but I do think it has made my sleeping worse, so just something to consider.

Best of luck with your transplant assessment, please do let us know how you make out with that Christine.

Take care and wishing you nothing but the very best. Please feel free to reach out any time!

Warm regards,
Charlene.

[Dianne]

I am very interested in giving CBD oil for pain a try.  Is there a good quality brand I could purchase on-line?   Would someone PM me with a brand they are using with good results.  Thank you so much.

[Charlene Marshall]

Hi Dianne,

Were you able to check out the post by Chuck Landon regarding CBD oil? I don’t believe it was posted to this thread so it may have been missed but you can read it here:https://pulmonaryfibrosisnews.com/forums/forums/topic/cbd-oil-ipf/#post-11906

He made a suggestion about where you can safely buy it online 🙂

Cheers,
Charlene.

Using CBD Oil For IPF

[Jason Pilgrim]

Hi

I have Rheumatoid Arthritis and Heart issues like most with it do and I now have PA which is giving me muscle and joint pains that are a bit different from the long term arthritis ones. When I drive (Uber driver) for a few hours I get very sore arms and riding my Motorcycle also causes my muscles to ache now whereas a few years ago I could go all day no problems. As I was already on Cortisone for the RA it must help with these new pains. I often wonder what they’d be like without it.

[Charlene Marshall]

Hi Jason,

Thanks for contributing a bit of your story through this thread. I am really sorry to hear of your pain from the RA though, and I do hope the corticosteroids are helping manage that pain for you. Do you find anything particularly helpful in managing the pain otherwise? Feel free to explore the forums, a lot of wonderful comments have been left on how people manage different types of pain, especially in the muscles, joints, nerves etc. I do specifically remember my RMT mentioning that heat is to help with the muscle pain, as opposed to cold which sometimes I did not knowing which one was actually best. I hope this helps a bit!

Take care Jason, and thanks again for writing.
Sincerely,
Charlene.

[Joyce Douglas]

Hi to Chrisine Bruyere.   I read with interest that you were diagnosed with PF 10 yrs. ago.  I had never heard of it until last year when I was diagnosed.  It seems to me that you have managed fairly well over the past while until your recent problem with the CPAP machine.  We have a friend who was diagnosed with a fibrosing of his lungs who also has sleep Apnea. He does use the CPAP machine and is very much helped by it. It just goes to show us that each one of us is different and this illness is very individual.  However, he is on oxygen at 4 l  pm for  24/7 which he is able to connect to the CPAP machine and it helps a lot.  I also have to use oxygen for 24/7 but mine is on 2 l.  I just wanted to let you know that we are thinking of your and your problems and hope you are able to get to a stable place again and that you are not too discouraged.   My aching joints and muscles were what kept me going to the doctor to find out the reason for the pain and weakness.  Finally, after my oxygen dropped to 69 and then 72 next morning, I ended up in emergency and from then on have been on this ‘Hose to Nose’ club.  Still have muscle cramping and pain at times even though on oxygen.  I know I need to remember to breath through my nose rather than my mouth to help the oxygen.

 

[Charlene Marshall]

Beautiful message Joyce!
Let me echo it and say that I am also thinking of you Christine, and hoping you are not too discouraged with your recent difficulties. Please let us know if there is any support we can provide to you, we’re all in this together!

Joyce, it sounds like one of your primary symptoms in detecting your IPF was actually pain and weakness in your muscles and joints, would you say that is correct? Was it because of this that you discovered low oxygen sats? Just curious to learn a bit more if you’re comfortable sharing…

Thanks and best wishes to both of you!
Warmly,
Charlene.

[Joyce Douglas]

Hi Charlene.  I will give the DuTerra a try for sure. Like to be pain free when and if I can. Thanks.

[Charlene Marshall]

Hi Joyce,

Great, let me know if it works for you! Not only do I find it an effective topical pain reliever, it also smells amazing! 🙂

Chat soon,
Charlene.

[Joyce Douglas]

Yes Charlene. That was exactly how it came about. My disappearing muscle tone and strength had me asking my Dr. for the reasons why this was happening when I was already attending Curves 2 or 3 times some weeks.  He had no answer except to put me on another puffer, which didn’t do anything to help the muscles.  They would just throb and ache when I used them.  If I had an oximeter back then I probably had low O2 stats then also.  I was first notified that my O2 stats were really down – at 69 on night after a trip into and home from Winnipeg – a long day.  The nurse doing the stats suggested I go down to ER.  I waited and went down the next morning and was kept in hospital for 4 days.  With complete bed rest and on O2 I recovered fairly well so was sent home.  A few days later I again had difficulty with aching muscles and throbbing so I stopped into the Dr.’s office and his nurse called in the ‘Walk-In Dr.’ and told him that they weren’t looking deep enough as I looked way too well.  My O2 was 72 at the time.  I was made to lie down, an ambulance was called and I have been on O2 every since 24/7.  I was diagnosed on May 6th, 2017 and my anniversary is today. I just remembered that!  A Respiratory Specialist was called in and I was put through many tests, and blood tests,  6 min. walking test (the tester had to keep raising the O2 so I could finish).  I was diagnosed with Advanced IPF, as well as COPD and Emphsyema.  I spent 12 days in hospital on Oxygen and many more tests.  Finally got home, was referred to the Respiratory Rehabilitation Clinic that was being presented in the Hospital (free with referral) and have continued on from there.

[Charlene Marshall]

Hi Joyce,

Thank you for sharing this experience – wow, a pulse ox of 69 must have felt terrible for you! I am glad you went to the ER when you did, and although it wouldn’t have been fun to be in hospital for the 4 days, I am also glad you recovered well oxygen. It sounds like if you’re off the oxygen, your levels drop pretty quickly so as much as it is a pain to live with supplemental oxygen 24/7, I am sure this is so much better for your body. Do your muscles generally feel better since you’ve been on the oxygen?

I remember those diagnostic tests well, and I still have severe anxiety when I have to do the 6-minute walk test or any stress testing for my heart. I always fear that I’ll run out of oxygen, or they will miss turning it up when I need it. Have you done the pulmonary rehab program at the hospital? If I’ve already asked you this, my apologies!

Thanks again for sharing your experience with us. Did you do anything to acknowledge your 1-year anniversary date yesterday? I always do, but I recognize that others don’t 🙂

Take care,
Charlene.

[Dianne]

I was diagnosed with PF and emphzema 5 months ago.  Prior to that had been using a CPAP for apnea with very little troubles except for loud non-stop snoring.  My biggest challenge with over-all well being is chronic pain.  It is so frustrating to me to figure out what is causing the overall chronic pain and exhaustion.  I am on Cymbalta and Lyrica for fibromyalgia, not that much of a difference in pain. For Osteo-arthritis I just had a total hip replacement one month ago.  I am scheduled to start Esbriet in 1 month.  My point of all this is I have no idea anymore what’s what? What causes this and what causes that?  Anyone else feel this overwhelmed when dealing with more than 1 major health issue?

[Charlene Marshall]

Hi Dianne,

Thanks for your contribution to this thread, although I am so sorry to hear of your pain. I couldn’t agree more – chronic pain certainly impacts all aspects of our overall wellbeing. It is exceptionally frustrating, as Joyce mentioned below, trying to deal with all the side effects and how they interlink as well.

I hope you can find a good way to manage your pain that doesn’t cause other side effect issues. Do you journal your side effects/symptoms according to what disease/ailment you think it might be? It just might help you decipher in future… just an idea, and one that was suggested by their doctor to another member of this forum.

Take care,
Charlene.

[Joyce Douglas]

Hi Dianne.   Yes, I know how overwhelmed one can be with more than one health issue that can cause other problems to surface that we didn’t know we had.  I suppose when we think of it, when the body has a weakened condition and low immune system then we do get more new illnesses.  However, like you Dianne, I find my body is having old issues cropping up again and I thought they were fine.  Will be thinking of you and praying for a safe and good surgery and a fast recovery so you can get on with living with a lot less pain in that hip!!  You go girl and have a great one.

 

[Charlene Marshall]

Great response Joyce. I also hope Dianne can continue on with as little pain as possible!
Thanks for such kind words 🙂

Charlene.

[Dianne]

Dearest Charlene and Joyce, I have already had the hip replacement 1 month ago.  So it’s a number of issues causing me pain.  What a wonderful, encouraging, knowledgeble and supportive group you are.  I thank God I found you dear sister warriors.??

[Charlene Marshall]

Hi Dianne,

I am glad you found us as well. We’re all in this together!

How is your hip replacement recovery going over all? Did they say your pain would subside as you continue to heal and recover? My stepdad had a knee replacement, which I know isn’t the same, but I do remember him having significant pain for awhile afterwards. I remember a surgery I had as well, and sometimes it isn’t even the surgical site/incision that hurts it is other areas of the body that are tense or are over compensating for the area that had surgery. This can be so painful as it causes stiff and/or extremely sore muscles/joints. I hope you are feeling better soon, and get some successful relief of your pain.

Take care and reach out any time 🙂

Charlene.

[Bert Jukes]

Hi Folks

 

Thanks for sharing your experience on this fantastic forum.

I was diagnosed with IPF last July and my condition is mild to moderate.

I have just joined this web platform so that I can help share my experience with all.

I am in the natural health supplement business and have found some useful ways to combat tiredness, fatigue, sore joints,muscles and right now I am working on a cream to help relieve coughing. I am not on here to sell stuff, that I promise.

The last few posts on this forum caught my attention this morning and gave my brain a jolt in order to contribute with helpful information that hopefully could help others.

CBD Oil is a fascinating product as is the CBD creams and lotions. It’s best to study  this research before buying and trying. I have tried several but some of them were no more than a cheap hemp oil and had coconut oil added. Some CBD products are stronger than others and that makes the dosage a guessing game.

I do not know whether I can or cannot point people in the right direction for these products, just in case it is a violation of the sites protocol but as I said earlier I am not on here to sell you anything. The improvement I have seen with the right diet and exercise has been terrific but I am trying to slow the progress of this debilitating illness naturally … that’s my main goal.. so the herbal and natural health supplements is the road I am pursuing until instructed otherwise by my respiratory consultant.

 

 

 

[Charlene Marshall]

Hi Bert,

Thank you for joining the PF forums and sharing your experience with natural supplements, including CBD oils and creams. I also really appreciate your acknowledgement of not trying to sell people products, as this is important to our forums community so thank you for that 🙂

Your approach to slowing the progression of IPF sounds great, and I know many people on this forum are interested in the use of natural supplements and products to do the same (based on their previous posts). If you find something that is particularly effective, please do share it with the sole purpose of helping fellow patients alleviate their symptoms of the disease we all fight on a daily basis. Once shared, we can look into it further or politely decline depending on our need for more information. I am thrilled to hear that it is helpful to you though, and like the idea of natural products and supplements.

I look forward to getting to know you a bit more through the use of these forums Bert.
Take care,
Charlene.

[Dulecia Lunde]

Hi Charlene, I’m experiencing muscle and joint pains everyday as well. My fingers go in spasms, sometimes it pulls up and have screaming with pain. My loved ones have to use muscle relaxer and rubbing ointment to help give relieve. I have IPF, fibromyalgia and lupes. They are never sure which flare up is causing the symptoms. I also have chest pains all the time and constant phlegm. I tire easier and get headaches. Not sure if this is due to the lesions I have on my brain.

[Charlene Marshall]

Hi Dulecia,

Thanks for getting in touch, although I’m sorry to hear of your muscle and joint pains. It is difficult to deal with these, as they impact everything we do! Do you find a topic muscle relaxer or ointment that is particularly helpful in giving you relief? I wonder if you could share it, in the event others might benefit as well?

Hopefully they can get some clarity on which illness causes the flare ups to effectively treat the symptoms. This must be so frustrating for you! Did you check out the thread on our forums about dealing with phlegm? Some members had some good tips to share, and might be worth taking a look for you 🙂

Hope you are able to get relief, and to feel as well as possible.

Warm regards,
Charlene.