Diaphragm pain?

[JUDIEMATUL]

I have been waking up with bad pain in my diaphragm and my doc told me to increase my bipap use when this happens(keep it on after I wake up). I was diagnosed in May with limb onset but is moving quickly to affect my breathing/speaking. Using the bipap doesn't do much to help the pain. If its not too bad a hot shower will help. Any suggestions? I currently sleep with 2 pillows and the bipap through the night.

[Blackpool]

I find the hot shower helps, also I put a bean bag in the microwave to heat up and put that across my midsection. The RT came out the other day, he is getting me a wedge for the bed untill the electric bed comes from the ALS closet. Do you go to Als clinic? or in touch with the ALS Society they as a team can help you. I know what you are going through it tough.Also passive stretching can help RTt can help with this also,from homecare. Good luck

[hopingforcure]

Welcome to the forum, so many people from PA. Some states seem like we have a ton more PALS and CALS than we should. Wonder why? Anyway do you go to Hershey? and see Dr. Simmons?

[marywest45]

Hi Judiematul,
Sorry to hear about your breathing difficulties and pain.
I also have breathing problems and have a lot of upper back and chest pain. My doctor is telling me that you don't get pain with ALS.
I use a heating pad a lot, it helps with pain, esp. at night. I have a hospital type pad- Thermidore", I got it from a medical supply store.
Do you get your pain in the back and side too, or only chest region?
Have you had a chest fluoroscopy to check your diaphragm movement?
If you don't mind me asking what is your FVC?
Take care, Mary

[hopingforcure]

Okay who saw my post before I edited it? I should have let it go, Kim and Glenn would have both got a good laugh. It said welcome to the farm.. Not to be confused with the forum,,(which I of course meant). I use a disposable pain patch, they work 12 hours and I place were I am having the most pain that day. My insurance does not cover them which is the big down side. I love them, but they are like gold to me, I cut them into pieces, try to spread them out, my son and husband like them for brace's pain, and my husband's neck, so they are really awesome. Called flex-all I think.

[brooksea]

Thought you meant the "funny farm!" LOL

Are those patches OTC?

[hopingforcure]

I guess you guys would have thought we could call this place a FUNNY FARM... that is cute.

[GlenBrittle]

and this "Funny Farm" has Wabbits EH !!!

[JUDIEMATUL]

Hi Judiematul,
Sorry to hear about your breathing difficulties and pain.
I also have breathing problems and have a lot of upper back and chest pain. My doctor is telling me that you don't get pain with ALS.
I use a heating pad a lot, it helps with pain, esp. at night. I have a hospital type pad- Thermidore", I got it from a medical supply store.
Do you get your pain in the back and side too, or only chest region?
Have you had a chest fluoroscopy to check your diaphragm movement?
If you don't mind me asking what is your FVC?
Take care, Mary

I, too, hear that there is no pain with ALS but I experience pain when I get up in the morning all around my midsection and expecially at night after wearing a bra all day. I feel that it constricts me but I also have fibromyalgia, which is why I think the Prednisone works. The pain radiates along my sides and ribs and under my chest and affects my morning speech terribly. I have not had a chest fluroscopy...maybe that is something I need to do? My FVC went from 49 to 55 after I started using my BiPap more often.
I do see Dr. Simmons in Hershey and really feel that the clinic there is helpful. I will be moving to NC to be nearer to my kids next month and start the clinic at Wake Forest of Duke. I hope the clinics there are as good as Hersheys. I will be right in the middle of the two...anyone have any helpful info? -Judie

[hopingforcure]

We have people who go to Dr. Simmons, and Duke, I go to Simmons, as does Jeff, and some other's also. I think I have heard good things about Duke also. I have a ton of pain, and I do tell Dr. Simmons that also, he has at least 2 patients with Pain. I have pain from anything that touches my muscles sometimes, even wearing a braclet.. When did you first have symptoms? What were they? We alll have differneces and similarities, and even Rascally Wabbit's...

[Erica]

Hi Judie,
Welcome to the forum.
Duke ALS clinic in Durham, NC got a good reputation.
Good luck with your move to NC.
Cookie

[Erica]

CJ,
I was given RX for pain patch called Flector. So far it works OK.Cookie