MemberFebruary 18, 2020 at 9:23 am
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?
MemberFebruary 18, 2020 at 6:52 pm
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.
MemberFebruary 18, 2020 at 6:56 pm
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.
MemberFebruary 18, 2020 at 8:34 pm
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.
MemberFebruary 18, 2020 at 10:06 pm
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
MemberFebruary 19, 2020 at 9:28 am
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.
I have excellent cholesterol numbers, and have never used a statin drug.
Hope this will help others,
MemberFebruary 19, 2020 at 9:31 am
Thank you Jack. Your suggestions can most likely help another member who is experiencing this difficulty. Take care, Mark.
MemberFebruary 19, 2020 at 10:40 am
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
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
MemberFebruary 19, 2020 at 2:55 pm
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.
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