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    • #22551
      Susan Howitt
      Participant

      Hello All

       

      Has any one got any tips or found any solutions re frequent chest cramps, getting far too frequent now, I have tried magnesium supplements, no difference.  Got rather dangerous yesterday when I had to drive a courtesy car as mine was in the garage, was on the main road (driving for about a minute) needed to turn and as I turned the wheel huge chest cramp, took my breathe away and I struggled to make the turn.  Cramp lasted all the way home 12kms.  Realised I hadn’t transferred my seat belt relaxer, will NOT forget next time, but the cramps happen even when not driving and for no apparent reason.

    • #22552
      Nan
      Participant

      @reglois

      Susan i can so relate, i get them too. Any twist at all and bang on comes a cramp. I have some stretches my PT gave me to do which really help but while driving hard to do and I have had them while driving. I took take magnesium, maybe it helps, not really sure. No one I have asked knows the answer so maybe here we will get more suggestions. All the best.

      Nan

    • #22557

      Hi Susan,

      So sorry to hear of this experience, that must have been so scary (not to mention uncomfortable)! I don’t tend to have any chest cramping unless I am sick, but it isn’t unheard of for patients to have muscle spasms if they have IPF, especially if their chronic cough is bad. Make sure you’re getting lots of water, as this can help with muscle cramping and magnesium can too, though I know you said you’ve tried that already. I’ve heard vitamin D can help relieve cramping too, though important to ask your doctor about this. Not sure what else to recommend, though I’d connect with your physician if you can and let him/her know it is happening.

      Take care,
      Char.

    • #22559
      Susan Howitt
      Participant

      Hi Charlene,

      Already take prescribed dose 10,000 ???? per month of Vit D as I am not very good at manufacturing it.

      Got an appointment with the professor on the 3rd of Feb but I am fast losing confidence in him as he never

      listens and treats me as if I know nothing, tis true though that the French never ever question their doctors or any one that is considered learned.  Me I research and research and do it all again and try and find ways to self help, prof doesn’t approve of that at all, but when I am treated as if I have COPD and not CPFE plus 2 other lung problems everything I have read says that I should not be treated as if I have CIPD because some treatments are even dangerous, had that already when I was prescribed Symbicort, nearly killed me, apparently the worst thing they could have given me.  I do have a pulmonologist much  nearer to me  (was hospitalised there, at my request, last May) than the professor so not that worried if he dumps me as the other doc (she does contact the professor when unsure) but she actually listens to me and says I know myself best.  She read my pulseometer reading and immediately ordered wrist vein blood tests and put me on oxygen when the prof just said I needed to get fit. I think walking 4kms to 5kms daily and using an exercise machine I am fairly fit

      Ooops sorry moaned a book again.

      regards   Sue

       

    • #22561

      Hi Susan,

      Thanks for writing me back, and hope you’re having a good weekend.

      Ah yes, the vitamin D dose can be a lot but it sounds like many of us are on a high IU amount of it. My prescription is 50,000 IUs! I’m glad you’re seeing the doctor in early February, though sorry you don’t have a lot of confidence in him. I sometimes think not challenging physicians is a generation thing, as my Mom wouldn’t dare do this either, but I always would. Is there any way you can just skip over the doctor you’re schedule to see and go see the pulmonologist? Sounds like it might save your time and frustration, though I don’t know how it works there. Goodluck with the upcoming appointment!
      Charlene.

    • #22562
      Susan Howitt
      Participant

      Hi Charlene   Wish could skip the professor but to get to the one I want I have to be released by the professor first so flaunting French protocol and not cowtowing to him might just work, I want him to wash his hands of me so I can go to her as he cannot just leave me high and dry. Would be labelled as a difficult patient, I’m not it is just that I haven’t got COPD and shouldn’t be treated as if I have because treatments aren’t the same. Get all my info from USA and Canada as there are more cases like mine there, only 70 in the UK and as far as I can find none (registered) here.  Brexit (now end of January) could be a serious repercussions  though,  removing the reciprocal agreement, there is no way I can afford the treatment myself on a pathetic GB pension, I am sure that the French would not just drop me (I hope) but might suggest that I go to a cheaper consultant, YES, then I would be sent to the one I want, she is eager to learn.  Left a 0 out of my script for Vit D I’m on 100,000IU monthly  sounds really high doesn’t it but I do not manufacture it well myself.  old age and illness don’t help

    • #22563

      Hi Susan,

      Ah, sorry to hear that! Sounds like your process there is a bit different than here. You’re absolutely right – treating you for something you don’t have is not only ineffective, but potentially dangerous as well. Hopefully you can tell the physician that when you see him, and not be labelled as a difficult patient, but one who is knowledgeable. Hang in there and I hope your appointment goes okay!
      Charlene.

    • #22565
      Nan
      Participant

      Hi Susan, I was thinking of you at 3 a.m. when i woke up with muscle cramps in my chest. They use to think that cramps/spasms/Charlie horses where because of dehydration, they no longer think that. They really don’t know the cause but magnesium has been implicated. The problem with magnesium is we don’t absorb it well that is why it is used as a laxative, milk of magnesium, mag cit rate for bowel prep etc. There are some preparations that are better absorbed such as pico inonic.   We can also absorb it through skin, Epsom salts, magnesium creams they are pretty good. I use a magnesium filter on my water jug (BWT) and I think it helps as i have much less cramps in my feet and legs. However I still battle them in my chest. 5 or so just yesterday. Only on right side, front and back, same side i have breast cancer and radiation and the most lung damage so i believe they are related.  I have experiences with docs that are like that too, not fun for sure.

      All the best, Nan

    • #22567
      Susan Howitt
      Participant

      Hi Nan My cramps are mostly on my right side too, hate the ones in the big back muscle leaves me breathless, though I do get all over chest ones, few in my legs but my toes cramp often, right side again one seems permanently in cramp !!!

      Yep the professor really frustrates me, not supposed to question some one with such standing !!!  I will argue when he says that because my FEV tests are near normal I should exercise more, I do a goodly amount, he ignores completely my diminishing DCLO  findings which are rapidly declining and of course hinder me somewhat in what I can do, no longer capable of doing the 10ks from three years ago. all DCLO numbers now way into the red from two years ago when only one was only just in the red,  will fight tooth and nail to save myself for as long as possible, alone if necessary. Since I refused Esbriet he has mostly ignored anything I say.  Really hope he washes his hands of me on 3rd Feb.

    • #22568
      Nan
      Participant

      wow that is terrible. I had an oncologist d/c me because I refused to continue tamoxifen d/t the side effects and no quality of life. My family doctor was pretty discussed with the oncologist. Terrible how they make us feel eh?

    • #22569
      Susan Howitt
      Participant

      Thank you Nan, you have no idea how your answer has helped me.   I was thinking it was just me and was having to battle foreign ideas alone but your answer has helped me see that I am not that inflexible and that it does happen to others. Being alone in a foreign country with a deadly and rare disease  is not easy. Luckily I am made of fairly stern stuff. lol. There is one article that lists CPFE as *the worst of both worlds*. CPFE was only recognised in 2005. !! and I have 2 others added to that and just been diagnosed with GERD on top

       

    • #22587
      Nan
      Participant

      Susan, that sucks and I feel for you, glad you at least have this online community to connect with. Seems me and you have a lot in common. I had a GP before, for 25 years, he was such a grump. He told me to come back in 2 weeks, then I did and he then asks why I am bothering him, ugh. We don’t have much choice in our docs here, I was able to change docs because I moved, only 15 minutes from where I was living but in a different county and I was able to use that as a reason and I did get a new GP and she seems very good.

    • #22594
      Barry McGee
      Participant

      Hi Sue and Nan

      I have had chest cramps and I thought I was having a heart attack.  Also have leg and foot cramps during the night.  Try drinking 3-4oz of tonic water, I use diet tonic water, and the cramps should stop in a couple of minutes. Also, I am on my 3rd pulmonologist and have been to 2 university ILD clinics. I haven’t trusted any of them. Hope this one works, he has about 40 years in practice.

      Good Luck

      Barry

    • #22596
      Fred Schick
      Participant

      My pulmonologist prescribed Omeprazole (over-the-counter drug) at time of diagnosis three years ago;  this helps control GERD nevertheless I had occasional chest cramping.  His opinion is that this could be skeletal based pain and not IPF. I continue to take this medication because GERD can be as painful as the chest cramps. I find that drinking water and deep breathing also  relieves the chest cramps.

      I get leg cramps more frequently than chest cramps and they do hurt.  One of my Pulmonary Rehab nurses suggested eating a teaspoonful of mustard; this has been very effective for me as it causes the cramp to subside within a few minutes.

      Hope this helps…

       

      Fred

      • #22607
        Susan Howitt
        Participant

        Hi Fred,

        Yes also on Omeprazole for severe GERD, still get severe chest cramping, sorry but can’t imagine being able to eat mustard, my throat is very sensitive due to coughing.  Though the deep breathing, almost an instinctive reaction I find, and water do help

        Hi Karen, yes mostly right side chest and right foot, wonder why this is !.  I have to kick any blankets off as any weight seems to worsen the cramp.  I used to love tonic water but GERD has put a stop to anything fizzy.

    • #22597
      Karen Martin
      Participant

      I too have chest cramps and am surprised to hear how many others also suffer them, mainly on the right side.  I also try to stay hydrated, use tonic water (max 6 ozs,), massage and stretching.  For you ladies out there, I also find it helps to unfasten/loosen my bra. (Sorry, guys.)   For the foot and leg cramps, I find keeping my lower legs warm is a big help and also a heavier blanket at night is beneficial.  Might be that the weight is part of the answer for those.  I hope this is helpful.   Karen

    • #22614
      Judy
      Participant

      Thank you for talking about the he cramping. I too suffer from the chest cramping also cramping in my legs and feet. I had asked my dr regarding them. Didn’t know if it was related to my fibrosis or not. One dr thought it was a bruised rib. After reading the above i feel better about them. At least have a reason. For my chest area I usually just wait it out, taking an extra strength tylenol if needed. For legs and feet either walk off or use heat. I will say that I have a very high pain tolerance and can’t take most pain relievers due to allergies so I have learned to compensate.

    • #22625
      Susan Howitt
      Participant

      Hi Judy

      Glad you feel better knowing you are not alone, does seem that forms of Fibrosis and chest cramping go together, no idea why this is though. I also do not take tablets just a personal choice though I am a bit of a wimp.  My daughter has a high pain tolerance and that doesn’t always do her any favours.

    • #22628
      Nan
      Participant

      Hi Barry, sorry to hear of your challenges with pulmologists and clinics, I am curious to know your story if you are willing to share it. I have not tried tonic water but i will, thank you.

      Barry, i dont have GERD that I know of, definitely seems skeletal just not sure why my muscles like to spasm lol. Mustard eh, interesting never heard that one, but hey if it works.

      Hi Karen, thanks for the suggestion. for my leg cramps I have to stretch it out and walk, blankets make it worse for me.

      Judy, Susan – we are not alone some how that helps a lot. We seem to have good company here, thanks everyone!

      Counter stretching works for the spasm just wish i could prevent them 🙂

    • #22633
      Penelope Wenzel
      Participant

      I have IPF and getting leg cramps, especially during the night for which Tonic water helps a lot. I do not like fizz so I pour my 4 oz of tonic water into a glass and stir until no more bubbles. I hate the taste so I drink it quickly and make a really bad face and eat a cracker. I do this early evening and have few cramping episodes now. Hope this helps someone. Penny

    • #22634
      Barry McGee
      Participant

      Hi All

      If you don’t like the fizz, you can let it go flat and if you don’t like the taste, a shot of gin and a little lime helps.

      Take care

      Barry

    • #22635
      Susan Howitt
      Participant

      Duh I am so thick, never even thought of stirring the bubbles out of tonic water lol.  Now all I have to do is try and find it on the shelves out here, as a life long tee totaller, the gin is out, I haven’t much idea of what tonic water looks it looks like or what it is called here, will ask my neighbour. Thanks

    • #22649
      Karen Martin
      Participant

      Barry, gotta love your solution to the taste of tonic water!!  Karen

    • #22652
      Susan Howitt
      Participant

      Hi Fred

      You say you have GERD, have you been diagnosed with Systemic Scleroderma?, it is often associated with IPF and CPFE and frequently causes GERD, that is the cause of mine.  GERD is not at all helpful with any lung condition because of the acid gases getting into the lungs. Omeprazole daily controls mine very well

       

    • #22667

      I love the suggestion as well, Barry!! 🙂

      I haven’t tried tonic water but I think this is something I need to give a shot. Stay tuned – I’ll let you know if it helps me like it does as many others. Such a great tidbit of information shared on our forums. Char.

    • #23027
      Susan Howitt
      Participant

      Hi World

       

      Pulmonology Professor was a s nice a pie, just when I was ready for a fight too, he said I have a right to decide what I will and wont take or do, it is my life, complete turn around from the last appointment !!! basically he thinks I am shortening it but I would rather shorten  it by a few months that feel ill on tablets that will, in my opinion do nothing for me as I have several progressive diseases so what is the point of maybe helping one when the other three will not be affected, nah, I will just keep plugging on as I actually feel fine, just can’t breathe which is a bit of a b………….  next appointment is at the end of June, which will include a blood gas test, arterial blood from the wrist.., 6 minute walk, x ray, and  breathing tests, can never remember what they are  called in English, you know the huffin and puffin ones..

       

      Must admit this horribly damp weather is getting to me, coughing a lot more because of it.

       

      A bientôt  Sue

    • #23034
      Wendy Dirks
      Participant

      I just saw this topic, sorry for my slow response. My husband gets horrible muscle cramps in his legs and feet and I get them in my chest too after bad coughing bouts. He drinks tonic water – loads of it – as the quinine is supposed to help reduce cramping. Maybe worth a try?

    • #23052
      Mark Koziol
      Keymaster

      Hello Susan, thank you for the update. I’m glad your appointment was a successful encounter with your specialist. We must always advocate for our healthcare. It’s our body and we know what is best for our bodies. I support your strong will. The damp weather also negatively effects me, even after my transplant. Take care, mark.

    • #23055
      Mark Koziol
      Keymaster

      Hello Wendy, thank you for suggesting the quinine to alleviate the cramping. I sometimes cramp in my legs. I drink more water, and days where this effects me I know I haven’t had enough water. Maybe I will try the tonic water. Thank you, Mark.

    • #23056
      Nan
      Participant

      Susan so glad appointment went well, we have enough anxiety in this life without doctors causing more.

      I have so many cramps in my chest mostly. I talked to my doctor today and she had no suggestions. She did hear my cough though, i have 2 doctors in the last week hear my cough and say “that sounds horrible and like an ILD cough”. She gave me some hydromorph to take when it is really bad. I am going to try to get CT date moved up.

      I have not tried tonic water, i must do this. I will get some tomorrow, i dont want the sugar though, can you get it without?

      Mark i agree, damp weather – ugh that really makes me cough.

       

    • #23060
      Barry McGee
      Participant

      Hi Nan

      I am very sorry that you are having the cramps.  Canada Dry and Schwepps both make a diet tonic with less or no sugar. That’s what ai use. You must try it.  Hope you get your CT moved up.  Have you had a Pulmonary Function Test yet? If not then you certainly should, ASAP.  Hope they can give you something for the cough. Depends if its a drey or productive cough.

      Wishing the Best for you

      Barry

       

       

       

    • #23066
      Jack Blum
      Participant

      After 5 years on Esbriet, and having a bad cough every morning for the last year, I have discovered what has helped me with rib cramps.

      I had been on Qunol CoQ10 for the last 2 years. I found it helped me with periods of being overly tired and not wanting to do anything. The main problem was the size of the big pills. I tried the liquid, but it did not agree with my digestive tract. Tried Kirkland brand CoQ10, and after empting a bottle, decided CoQ10 was not really being effective any more. I quit taking all together.

      After about a month, I noticed I was getting bad rib cramps and they continued to get worse. If I turned and reached for something on the end table next to my couch, I would get the worst cramp and charley horse below my left rib cage. It got so bad, I would lean into a door jamb and press as hard as I could to relieve the cramping. It would last over five minutes of terrible pain.

      I researched and only found that a heating pad would help if used 3 or 4 times a day. Then it dawned on me. The main reason people take CoQ10 was that it helped with leg cramps if you were taking a statin type drug for cholesterol.

      I immediately bought some Qunol CoQ10 and started taking it again. Within 3 days my rib cramping became less and less. I have had only 1 or 2 small cramping episodes in the last 2 weeks.

      It may not work for everyone, but it definitely has helped me.

      P.S.

      I have excellent cholesterol numbers, and have never used a statin drug.

      Hope this will help others,

      Jack Blum

    • #23067
      Mark Koziol
      Keymaster

      Thank you Jack. Your suggestions can most likely help another member who is experiencing this difficulty. Take care, Mark.

    • #23068
      Susan Howitt
      Participant

      Thanks for this Jack, I hate taking tablets but as this is a naturally produced thing that the body makes I can only surmise that with our diseases that our bodies are sadly lacking in this, hence the cramps,  am going to try as my cramps like yours are getting dangerous, especially when driving, looked it up and can get it in Europe

      Hi Nan

      Yup keep pressing to get the CT scan moved up to the quickest date possible also try and get your doctor to get you a blood gas test.

      A bientôt  Sue

       

    • #23072
      Nan
      Participant

      Hi Barry, thanks I am picking up tonic water today :). I have had PFTs a few times, the last time a decline was told my lungs are shrinking. Signs of restrictive lung disease they say.

      I emailed the centre and told them waiting 4 months for a CT is torture, will see what they say.

      Thanks everyone

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