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Hello,

I'm new to this site so will tell you a bit about where i'm coming from.

I'm 35 years old. During my 20's i was a cracking road cyclist, very good in the mountains, but 16 months ago i was diagnosed with the auto-immune disease sarcoidosis, which has no cure and no known cause. The first signs of the illness began 18 months before that, and i had not felt in the mood for exercise, sarcoid had made me depressed, so my fitness had dropped considerably. I had put on an extra stone. The disease had attacked my lungs and left it with scarring. After the diagnosis (by bronchoscopy) i was put on a high dosage of corticosteroids (predisolone). These drugs make most people balloon up and there was no way that was going to happen to me so i starting running, early in the morning, on the very first day of my medication.

The first run was hard work. I used my heart rate monitor so I could see exactly what my heart was doing, on the first slight gradient my heart was up in the 170's even though I was hardly moving. After the first mile I had to walk and let my heart drop before continuing the 2-mile circuit. I was in very poor shape but the exercise helped me mentally. However, I had serious concerns about whether I was ever going to get fit again? The only thing I could do was persist.

About every six weeks throughout 2007 I saw my specialist who did the usual blood test and chest x-ray and then gave me the good news that he was going to drop my medication by 5mg. My mood dropped with every drop in pills, prednisolone can make you elated. I'm currently down to 7.5mg a day, but can't drop anymore at the moment because the disease becomes active again.

My lifestyle has changed in many ways. I now have a strict routine and strict diet. Certain foods make me feel like shit for some reason so i try to stick to a clean diet of fresh fruit, vegetables, rice, pasta. My binges changed to blueberries and raspberries – much better for me and actually nicer tasting, but ironically more expensive than all junk food put together. I haven't touched alcohol at all since being on the steroids and this has been no problem at all to live with.

Mentally, getting into a new routine was hard at first, but persistence does pay off. Mainly I keep myself going by keeping sarcoidosis in my mind, and a spirit of not wanting to be beaten by it, it is a good motivation.

I have continued to run every other morning and i now do between 10 and 20 miles a week going out at 6am. It's extremely hilly round here and i actually live on the top of a hill, so every direction i go in the morning is downhill. I have one 6 mile route which is exactly 3 miles down hill followed by 3 miles up hill and, including warm up and warm down, I manage an 8 minute mile and i'm fairly pleased with that. I manage a 7 minute mile on the flat and i always use my heart rate monitor and try to stay within my zones, usually doing one interval training run a week. This is fine for me, i wouldn't really want to do anymore because running isn't really my thing! I find listening to music while i run is very helpful and i've tried most types of music, rock is definitely the genre for me, especially Led Zeppelin or Muse.

It hasn't been easy going. I've learn a hell of a lot about my body. I've had a few muscle aches and pains, in the arch of the foot and in tibia (shinbone) but they healed themselves with care and attention. I've had blood in my urine for which i had a cystoscopy and an ultrasound, nothing was found and the urologist told me it is very common for runners to pass blood and it's usually due to not drinking enough water, if the bladder is empty the walls can bang against one another and bleed. So now i get up half an hour earlier and drink 2 or 3 glasses of water and make sure it's working its way through my system before i go out for the run. I have also discovered that running can cause other problems such a diarrhea depending on what you eat the night before (nice). It's all about preparation. It's been a big learning experience and hopefully now i will continue to run even if my disease cures itself, because the benefits mentally and physically are worth the effort. But i still miss my bike.

Shane
 

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Sarcoidosis

I have just been diagnosed with the above. My symptoms are breathlessness and a dry cough. Both of which started all of a sudden. After spending 6 days in hospital and being tested for Tuberculosis which has similar symptoms and having a Bronchoscopy, I left hospital none the wiser. I went back for my test result yesterday and was told I had Sarcoid.

I have my steriods (Prednisolone) and I am on 30mg per day. I am not worried as I feel that if it came all of a sudden, I can return the favour and get rid with the treatment prescribed. My physical appearance, blood pressure, appetite & attitude to cutting about as normal all remain the same. I have just lost around 2 stone. I was 15.6 before Sarcoid and I should be around the weight I am now. Because I know that I am going to struggle for breath if I run up the stairs to go to the toilet makes me not worry anymore due to knowing why.

I do have what I believe to be the easiest Sarcoid symtoms and I am prepared to maintain a high level of fitness and use the steroid to my advantage.

We do not all have the same symptoms, but hey if it is a time to get fit, DO IT.

Bless you all,

Monty......

:lol: - In The Face of Adversity.
 

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Probably a dead thread, considering it's been four years since the original post & three since the reply. But just wanted to let you two know there's a third in your small group. I was an avid runner before my symptoms started. Ran four minies and tons of 5k's. By the time I was diagnosed though, the shortness of breath had brought my weekly mileage down to zero. That, plus the IMMEDIATE weight gain from the 'roids has made getting back to my previous mileage a goal I'm still working toward. But I am still working toward it. I've found that wearing a heart rate monitor really helps in that it makes it easier to know when I need to ease back versus when I'm just wheezing because that's what sarcoid does. As long as my BPM is in the right zone, I'll keep running regardless of the noises I'm making. This does elicit some odd looks from other runners - they seem to think the wheezing fat man is about to have a heart attack any moment. Passing other runners who look and sound fitter than me has become oddly motivational for me. :)
 

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Hi everyone, I have joined the forum because of this thread, in hopes that you're still part of the forum even though its an old thread.

I was diagnosed with sarcoidosis in 2011 (symptomatic since 2009), and I am desperate to try to build up my ability to exercise. I've had a few goes at running, and really enjoyed it when I was able, and I really would like any advice that you have on running with sarcoidosis. (I am worried about my lung capacity being a hindrance - i have enlarged lymph nodes in my lungs).

I also suffer from really debilitating fatique, but I've made a lot of changes in the last year in my diet (gone organic and started juicing veggies) and I'm no longer on pred (apart from pred eye drops occasionally).

Anyway, if you're still around and have any advice for me, I'd be really interested to hear from you.
 

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Hello! I too have joined this forum because of this thread.

I have had sarcoid since 2006. It was very severe for the first 5 years. I have heart, lung, and joint involvement. I had multiple surgeries and and took a LOT of meds. After a lot of trial and error, I am now off of all meds. I found the best way to combat sarcoid is to eat clean. A great rule of thumb is that if the ingredients end in an "ite" or an "ate", don't eat it. Also, avoid sunlight. I run at 5 am each morning to accomplish this. Vitamin D is NOT your friend. In fact, it is essential in creating the sores in your body. As for the lungs, running 5 days a week has taken away my cough and most of the lung secretions. The heavy breathing really keeps the lungs cleared out. I hope this information is helpful. I know how frustrating the disease can be.
 

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Another recently diagnosed 'sarcy' here - i hope everyone is doing as best they can with what they are going through - its been a scary few months not know what was wrong.

As i am at the very early stages of my diagnosis i dont know what is going to be good/bad for me yet. I dont even really know how long i have had this so no idea what category i come under.
 
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