29 with sarcoidosis any help please?

Hello Adam, I really do feel for you!  I was diagnosed with Sarcoidosis of the lungs earlier this year aged 51 after a biopsy of my lungs. I'm now on steroids which did improve my condition and I managed to reduce the amount taken which can be tricky to balance but I've had to increase them again recently as feeling breathless especially when walking on an incline/stairs etc and causes the pressure across my chest as if stressed.  I have had a problem/pain in my left ankle a few weeks ago, but it did subside but not sure if it was related to Sarcoid.  Exercise is supposed to be good but don't stretch yourself too much; have you thought about walking, yoga or pilates?  Another tip is to try to introduce anti inflammatory food into your meals to reduce inflamation of the lungs ie: salmon, kelp, spinach, blueberries, dark leafy green vegetables, brochilli, tumeric, oregano, garlic, rosemary, ginger, green tea, sweet potatoe, papaya. Avoid certain foods which affect the immune system; processed foods, high fat foods, sugar, saturated fats, dairy, fatty red meats, cheese, margarine, cured meats (ham, sausages etc), food additives, alcohol (beer, cider, wine and spirits), vegetable oils (use sunflower oil/virgin oil instead).  It may be worth you looking on the internet yourself for more information.  I hope that helps Adam.

Adam

Sorry to hear you are so poorly.

Your post calls for many answers so I will do my best.

Lung bronascope and tissue collection at the same time will confirm sarcoid.

Suggest they leave the enlarged spleen alone as it is such a delicate organ and you do not want to upset it. If at any time they suggest spleen removal fight it with all of your strength. A body without a spleen causes many, many other medical problems. I have lived with the enlarged spleen for over thirty years with no side effects other then a slightly low platelette count (you should get yours checked).

Joint pain, take glucosamine, krill oil 1000mg and panadol osteo daily to reduce this issue. In winter I take two panadol osteo (slow release) morning and night in the warmer summer months I half it to one morning and night.

I have not found a total answer to this problem and I welcome anyone who can add to management of joint pain. Granuloma in the joints cause this problem.

Fitness is hard when you have all of these issues. I have found walking several times each week for 60 mins helpful in several ways.

respiratory improves

weight loss

general fitness

joint pains lessen

You may need to start on steriods first to get down the inflamation and improve your lung capabilities. This will get you started in the right direction.

By the way, the post by Maria is an excellant one, What she said is right on target.

Regards

Tangles

Thank you for your advice and help I really appreciate it will start the diet and exercise tips straight away and let's yous know how I get on knees are really bad at moment and back feels like it's constantly on fire not nice at all

Thanks

Adam