Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 kAT, It was amazing to me when my pulmonologist would say "your numbness is from hyperventilation." I wanted to slap him. I knew I was breathing - but was impaired. It was in a pulmonary rehab class that I took-- it was a 6 wk program - that one of the pulm tech's explained that when you have pulmonary fibrosis from the scarring of the lungs, and the oxygen can't get across those scars-- then you begin air trapping, and end up with way too much carbon dioxide in the bloodstream. So, yep, we're hyperventilating. Wouldn't it be wonderful if our MD's would take the time to explain this-- rather than state that our PFT's are in acceptable range- but hey- you can't breath. If they take away the overall picture, and the percentage of each impaired section of the pft test- and look at the diffusion alone, we are not NORMAL! This is so much the reason that any amount of exertion, walking to the mailbox, grocery shopping, vacumming the house, taking a shower-- that we get into breathing problems. Add the extra weight from all the steroids, and immunosupressants, and the pain from not having the correct amount of oxygen in the bloodstream to help heal the body- and here are. Obese, out of shape, in pain, and frustrated - to a point often times of depression. Add the extra pain, and the lack of sleep, and now not only do you have all the issues listed above, but now you are in a full fledge pain cycle-- that makes the depression, pain, exhaustion, and fatigue worse. If you can find guided imagery tapes that teach deep breathing, these are wonderful! Yoga tapes that have a 15 min meditation are excellant for this. If you continue to be short of breath, do get a CBC run. Anemia also causes the SOB. So does hyper or hypothyroidism. Sarc likes the parathyroid gland also-- and that is the one that controls calcium absorbation. Interesting, isn't it.... Take care, and I'm glad this info is helping to explain what is happening-- to way to many of us. Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2007 Report Share Posted April 20, 2007 Tracie, So I guess instead of taking a cigarette break like a lot of the employees do, I should tell them I going outside to take a Deep Breathing Break. LOL I notice when I am in the building all day at work and I do not go outside that I get so tired. If I go outside and walk and breathe the fresh air outside then I do not get that way. Thanks for explaining this to me. My initial major attack was in 1980 to my left lung and I have been going crazy trying to figure this out. You know everyone else is going around and you feel all this pain and then you take deep breaths and you feel better and the pain alleviates for a bit and you wonder what the heck is going on and why. Thanks KatSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 My neurologist told me to drink some tonic water as it contains quinine.See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2007 Report Share Posted April 21, 2007 Hi Tracie, I thought that something was wrong with me when I take showers and it seems like my breath was taken away. I no long take long baths because it seems to make me feel like I can not breathe. Is this from the sarcoids? I knew something was going on but didn't quite know what. For the muscle spasms, is there anything to take over the counter, It seems to really act up when I get off prednisone. I have had cramping so bad that it wakes me up at night. I have them all over in arms, legs, hands, and back. I have asked my doctor and he just suggested quinine. Should I take some potassiums tablets or something to help? I have probably asked you this before so excuse me if I did. Lately I am feeling extremely tired and started to get headaches again but not so severe and my sight had been acting up. I think I am beginning another flare up. I am going to see the pulumanary (sp) doctor soon. It has been a while since I have had a thorough checkup. Shauna in Atl. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Shauna, I take prescription Quinine Sulfate 325mg daily for the cramping. One of the drugs for sarc has quinine in it, so if you are that you shouldn't take extra quinine. I can't remember the drug; I'll look it up. I first heard about quinine from a nurse at work & was going to get some from a health food store, but all they had was "quinine water." I read up on it & found that the amount of quinine wasn't adequate, so my neurologist gave me the prescription. It really helps. A couple of times I've run out & not refilled it & within a few days, I'm having lots of muscle spasms. It's very cheap, too. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: DEEP BREATHINGDate: Sat, 21 Apr 2007 09:53:00 -0700 (PDT) Hi Tracie, I thought that something was wrong with me when I take showers and it seems like my breath was taken away. I no long take long baths because it seems to make me feel like I can not breathe. Is this from the sarcoids? I knew something was going on but didn't quite know what. For the muscle spasms, is there anything to take over the counter, It seems to really act up when I get off prednisone. I have had cramping so bad that it wakes me up at night. I have them all over in arms, legs, hands, and back. I have asked my doctor and he just suggested quinine. Should I take some potassiums tablets or something to help? I have probably asked you this before so excuse me if I did. Lately I am feeling extremely tired and started to get headaches again but not so severe and my sight had been acting up. I think I am beginning another flare up. I am going to see the pulumanary (sp) doctor soon. It has been a while since I have had a thorough checkup. Shauna in Atl. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos. The average US Credit Score is 675. The cost to see yours: $0 by Experian. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 Quinine, is a good old malaria drug. We take it as Hydroxyquinoline.- aka Plaquenil. With quinine, or even plaquenil-- it can effect the retina's of your eyes. so it is imperative to get a baseline ophthalmological exam, and then checkups each 6 mo. If you were to start to see a change in vision- (when they used it onboard ships - men would literally go blind) you stop taking it, and it does clear from your system. However, it's a crap shoot as to whether your vision will come back. I know that they use a weight to dose faction-- but don't know the numbers. I'd ask the MD or pharmacist. One thing about the hot bath-- if you have active inflammation, heat is going to increase that inflammation. Ice, on the other hand, reduces inflammation, and still works wonders to get the blood circulating better (as you warm back up). I've found that as wonderful as my jacuzzi is, I can't handle much at all-- it sends my systemic inflammation into flare. So I end up getting into the jac and then icing about an hour later. Also, heat is going to add more inflammation in the bronchials-- so that may be what the sob is. Where I have the granulomas throughout my lungs, the medial stinum and the bronchials--there isn't alot of room for air to move thru freely-- so I am really careful about respiratory infections. I use Humibid LA (DM now) daily, as it helps keep the mucus from building up. It's over the counter now-- and you can get Costco's brand generic! I've also found that if I use my Albuterol inhaler before I get into the hot tub, it's better. Over the counter, for pain-- MSM powder. Anti-inflammatories, Vit C, anise seed (licorice), Milk Thistle to detox the liver and keep it that way- I'll have to pull my article and try to scan it from my son's computer-- Till later, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2007 Report Share Posted April 22, 2007 So I guess instead of taking a cigarette break like a lot of the employees do, I should tell them I going outside to take a Deep Breathing Break. lol!!! you got it!!!!!!!!************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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