Trouble breathing

Hi Donelle and welcome to the forums !

Unfortunately, most of us know nothing about asthma - at least, I guess so. This is a sarcoidosis forum, and most of us suffer from sarcoidosis and sarcoidosis-related conditions. If you have sarcoidosis, we will be more than happy to offer you additional information or advice so that you can find the right answers to your questions - I guess you have a lot of questions. About having trouble breathing, it is completely normal if your condition has affected your lungs.

If it's sarcoidosis, and you are going to see a specialist, he or she will assess your overall health condition and establish whether sarcoidosis has irreversibly affected your lungs. If sarcoidosis is still active (sarcoidosis can be dormant or active), the specialist will probably prescribe an anti-inflammatory drug (e.g. prednisolone) to keep sarcoidosis under control. You'll have to go for regular check-ups every 3 - 6 months; same if sarcoidosis is inactive; it really depends from one patient to another. If you'll be put on anti-inflammatory medication, pay attention to stomach lining and calcium. You can find more information about many sarcoidosis-related topics by simply browsing this forum; as well, you are welcome to ask us any questions you may have regarding this condition.

All the best,

Magda

I think what Donelle May mean is that they had misdiagnosed you you with asthma and now have realised its sarcoidosis?? This happened to a friends brother of mine. I am in the uk and was only diagnosed in October, happy to help if I can? 

Sorry to hear you are unwell, let us know what the specialist says. It took about a year for me to be diagnosed, and then it was a process of elimination really, at one point they said it could be TB or cancer, though I was generally unwell with a wheezy chest and dreadful cough but had had symptoms for many years too general to point to anything until I had a chest xray prior to an emergency op for perotinitus.

Don't let the process dishearten you, keep smiling, even if you dont feel like it, apparently smiling muscles trick your brain into thinking you are happy, and a happy body is probably healthier than an unhealthy body, thats my life law anyway haha.

Hi Donelle

Symptoms of sarcoidosis, when it affects the lungs which is the most common, are very like asthma. That may be why theres been a delay in your diagnosis. I'm assuming consultants in Australia would treat sarcoidosis the same way as they do here in Scotland - in which case the consultant will probably arrange a barrage of different tests to determine exactly which parts of your body are affected. Although the lungs are most common, a lot of folk can also have problems with joints and skin, are quite rarely kidneys and heart. Those last 2 are pretty unusual though so don't panic. 

Once they have an idea of what's affected and how badly then the consultants will probably talk about treatment. As has been said already anti-inflammatory steroids (prednisolone) is a common treatment, mainly because so many scientific reports show that sarcoidosis tends to respond well to this one. Other than that they tend to treat the symptoms as appropriate, so if you've been having trouble breathing an inhaler (like you'd get for asthma) might be suggested for instance. 

Keep us posted and if you have questions there's a good chance someone will have an answer. 

Hi Donelle!

I was diagnosed after a biopsy to rule out lymphoma about 2 years ago (I had a cough that had appeared about a year previously.) I had been ill for many years before this (digestive issues, anxiety, heart arryhthmia - constant at times, nerve pain in hands and feet, head pressure, fatigue etc etc) but doctors just said I had anxiety/depression. They presicribed me various drugs which didn't suit me and I got progressivly worse. I believe if the Doctors had listened to me properly and I had been more in tune with my own body all those years ago my illness wouldn't have progressed to Sarcoidosis.

I refuse to go on the steroids the specialist wants me to go on and am trying to help myself the non prescriptive drug way - I have not seen any Doctors in over a year! I have good days and bad and go around in cirlces sometimes but I have improved quite a bit. Pretty much no heart arryhtmia, incresed energy, less coughing, less aches and pains everywhere.

I believe most illnesses start in the gut. My diet was terrible as a teenager and I was also a party animal so I really wasn't helping myself back then when I thought I was invicible! I ignored those early warning signs (digestive) so went more and more downhill. I say I had my first signs in my early 20's, I'm now 40.

It's also imprtant to deal with any emotional issues. I was adopted and dealt with this quite badly so think thoughts can effect the digestive system also.  

When it comes to diet I TRY to be sugar, gluten, dairy free and have recently reduced the amount of other grains I eat. I could do better as I tend to be good during the week then have a few treats at weekends which probably stops me from gaining more health - my vice is red wine!

There are books you can read on the Paleo diet and another book I have recently read makes much sense also. It can all get a bit hippy-ish but some changes mentioned REALLY have helped me. 

Unfortunately I don't have the funds to pay for the various supplements people suggest so I do the things that are pretty much free! (1 supplelemt I did take for a while and am sure helped was Serrapeptase.) 

I oil pull every morning, dry body scrub, hot/cold shower, Juice everyday, eat as many alkalining foods as possible, eat black garlic, eat a couple of apricot kernals a day, drink diluted Apple Cider Vinegar (with Mother), drink plently of organic homemade bone broth, home made Kombucha and Saurkraut, eat grass fed meat.

I'm just about to start home enemas but am reading as much as I can about them first!!!

At the end of the day we're all different and what might help 1 person might not necessarily help another so it's all trial and error. 

I have to say, if it was legal here in the U.K, I would be growing Cannabis to juice the leaves and make oil. I truly believe this plant can work miracles!!!!!

There is the Vit D issue (avoidance) with Sarcs ____________ so this could be something you could research. I am undecided on this as my health was the best it has been last Summer and has got a little worse since the Autumn. SO SO Confusing! I suggest getting the VIt D test if you can but it's very specific so have a look at their website. Seems Doctors here in the U.K don't know much about Sarcodisis so only hope your Doctors know more in Australia!

Best of luck with your healing journey! 

Mary-Anne

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Donelle, your reply just reminded me of how very different this illness is for each of us. When it rains my breathing is easier, not that I walk much, too many aches and pains, but I look after the garden in the rain. I am sorry to hear walking has become marred by poor breathing. Having said that last summer was the best summer for me for years and it was hot and dry so what does that tell me ? Its all very confusing. Take care

Hi Donelle,

as Earthia says, this illness depends on how each person reacts to it. For example, I'm not meteo sensitive, but sarcoidosis destroyed my lungs. I also did not take prednisolone - my doctors also thought that I had other conditions - so I ended up with permanent scars in my lungs (fibrosis), which reduced my lung capacity to 50%. so, it's very important to ponder things very well before deciding not to take anti-inflammatory meds.

Talk to your doctor and ask him/her what will happen if you're not going to take the prescribed medication. Last time, I asked my doctor and she explained that sarcoidosis inflames lung tissue; if the patient does not take anti-inflammatory drugs (or finds a way to treat inflammation), inflamed lung tissue turns to scars, reducing lung capacity. When she explained these things, I started to take anti-inflammatory drugs; now, I'm on 5mg prednisolone / started with 25mg; probably, I'll take it one more month - when I'll have my check-up, and then stop (the entire treatment will last for 5-6 months; however, other patients take prednisolone for years - it really depends (again) from one patient to another).

In addition, my symptoms are similar to yours. I breathe quite all right when I don't do any physical efort. When I have to climb a hill or some stairs, I have to stop from time to time to breathe properly again. I also have to avoid high relative humidity and cold; I feel much better during summer, when it's dry and hot; though , I don't feel too well if I spend time in the sun, so I stay away from direct sunlight as much as I can. But again, this does not mean that your lungs have been irrevesibly damaged.

Another important thing: try to find a good doctor. It really matters a lot to have a doctor who is willing to make compromises. My doctor also doesn't know too many things about sarcoidosis, but she really cares about her patients, so she is wiling to make compromises regarding treatment to make sure that her patients are ok with the treatment they receive.

so, that's about it. take care and don't think too much about your condition; stress is the no.1 enemy of sarcoidosis.

All the best,

Magda

Too much vitamin d is definitely my worst trigger, I only got diagnosed last year after a months trip to Australia! I had a horrible flare up 2 weeks after coming back which lasted for 4 months... I had days when I couldn't lift my head from the pillow. But I do believe that everyone is different, and I will be experimenting with our sunshine this summer to see how much is too much! It's all a bit of a lottery.