Sarcoidosis & I'm scared

3 months is definitely a long time between consults for a relatively new diagnosis. You should also have been prescribed something. I have had sarc for 8 years.

Hi

I have Sarcoid in my lungs and lymph nodes

First of all yes I have extensive leg pain since I was diagnosed with Sarcoid exactly 2 years today!!! No im not having a party to celebrate . If I am sat, when I go to stand up sometmes I cant walk immediately. I have to stand a moment. My legs feel like steel girders at times so heavy and stiff and no matter where I put them ie, rest them, lay down, stand sit, they ache and hurt. I did have three infections in my legs and they have damaged the tissues which causes pain and burning but they were in my lower legs and the tops of my legs hurt so I know this is from the Sarcoid. I have quite significant water retention in my legs from my medication so take further tablets to reduce this. I know when the retention is bad as I can hardly pick my legs up.

When I first came out of hospital I saw the Consultant weekly, then fortnightly, then monthly, 6 weeks and now every 3 months. All I can say is they think its under control if they are happy seeing you every three months. I do have the arrangement if I need to go back I can call for an appointment sooner, even for re-assurance. Perhaps this is something you can ask for. I came off Steroids after 2 years last saturday. I've walked around the supermarket today and anyone would have thought I's sprinted round I was so out of breath. I can really feel the difference without them, but im determined to stay off them so to prevent the side affects returning

You will find the medics know very little and tey do fob us off at times. Ive been told im breathless due to the steroid weight gain. So why is it im on steroids - oh yes Sarcoid and they symptoms are..........

2 people I work with have had Sarcoid and they are fully recovered and are both runners. It affects us all in different ways. I dont have my own children but I am a Secondary school teacher so I know how kids run you ragged and this condition doesnt help. When the energy plug is pulled there isnt a back up and kids dont always get that. And adult either

Its deteriorated the sight in one eye, and I get frustrated at the things I struggle with that every one takes for granted. 

I cope with it all and the things that crop up - the aches the pains and medicine side affects by having a word with myself and saying this is how it is, and its ok and find something to be thankful for

Just reading your post again, Yes I have leg pain but its not constant it comes and goes. I know when I walked too far as I cant walk well the next day. Having Sacoid doesnt follow a pattern but its seems to be a basic understanding that we are symptomatic for appox 3 years and it goes altogether in 10 years. Dont shoot me down for putting that, thats what Ive picked up from the Consultants and conversations on this forum. I know we are all different. 3-10 year seems a long time but its not forever. 

I hope it gets better for you and I just want to say, I understand you

All the best 

Nicola

something ive thought of. I have spots on my legs. they are left from my infections. I have more on my left than my right. about 30 on my left and 20 on my right. they are on the inside of each lower leg, on my ankles and inside edge of my feet. Some days they look purple, other days they are greyish. When Im unwell, they go red and become slightly raised. My GP said they were because of water retention. I said they were Sarcoid spots. He said there isnt such a thing. Baring in mind Im the 2nd person he has seen with Sarcoid in over 20 years. I read an article about Sarcoid spots so they do exist. How true this is I dont know. I was diagnosed with Sarcoid after a month in isolation in infectious disease ward. A Doctor told me that the legs reflect what is going on in the lungs. As they are an internal organ, to show there is an issue infections, scarring etc show upon the legs to reflect whats going on. If you believe in acupuuncture and reflexology this is very likely.. The Dr also told me that these spots are the Sarcoid scar on my lungs. Ive monitored them and when Im unwell they turn red and go hard. A different respiritory Consultant told me that even though the Sarcoid is dormant  (he daren't say gone) patients are sympotmatic for about 3 years ie out of breath, tired, flare ups. He tried to tell me Sarcoid doesnt flare just the symptoms do but my jury is out on that one.I decided to manage my Sarcoid not my Sarcoid manage me. Yes its hard and there are days of deep depression, no light at the end of the tunnel. On those days I look back over the last 2 years and realise how far Ive come. Dont get me wrong, I have days of throwing a 2 year old's tantrum, sobbing and its not fair, but then that takes too much effort !!!!!

My last consultation at the end of December, they told me last year I absorbed 61% oxygen and a year on I am absorbing 73% which is great. However, my consultant mentioned early on I wasnt absorbing oxygen but that was it. This last visit was the 1st time it was discussed with me. Maybe this is something you can ask about - absorbtion and is a contributor to tiredness

As for reading stuff on the net - we are all victims of that. Ive just terrified myself as I got a letter from the hosiptal with bag asking for a blood test. I had them in December and they are asking for more. I read the medical bit and then looked it up on the net. OMG! think I had 1/2 an hour to live!!!! Then I got a grip and read more and I have so many other things wrong according to the net I decided to stop it and wait!

Its not about people having worse experiences than others, its about sharing and picking up bits that fit with your own condition but the monst important thing for me is 'knowing' others get what youre going though, get that 'tired' is really the wrong word, and its ok to share worries that others dont get or say youre ridiculous

Nicola

I had bi-lareral infections in my legs, Cellulitis, Panniculitis and erethema Nodosum. I had loads of Dr's and Students coming to look at me. The were calling each other to come and look as they read about them but rarely get to see them let alone together. Alot of my leg pain is from the damage of the infections

My boss had it about 10 years ago, he had lumps in his armpits and raised calcium levels. was on steroids for about 3 months. He goes to the gym everyday and runs with a club. He says it never flared and he is very fit (55) My other colleague has it in her skin. I asked my consultant about it and she said Skin Sarcoid is a different version and often masking some other issue - her words not mine. She says her elbows and ankles are sore. She has been on steroids but never put weight on. She often run to and from work and has run a half marathon. I exhausted putting my wellies on in this snow, I counld contemplate doing any of that. My point is, there is hope and a good possibility you can cycle again. I think they took a break whilst they were having treatment but have vigorously exercised since. Avoid the steroids if you can. I got fat in lumps over my torso and back of my neck, water retention, incontinence at times, huge calves, skin ulcers, hair falls out, nails just break, made me very anxious on the high dose, my bones are softened, the weight gain has cause sleep apnea so I sleep with a mask with a CPAP machine, chipmunk cheeks, and my other drug combinations have given me stomach ulcers. I really hope that is enough to make you avoid if you can!!!!!

Gosh I sound a complete monster LOL 

Hi mate, I just found out I have this sarcoid as well. I have my good days and bad days with my breathing, My legs ache, armpit aches. Im going through tests now. Im not on any medication. I will have to wait and see.