Sarcoidosis & I'm scared

Posted , 7 users are following.

I had the cough a year ago & went to the docs who sent me for an x ray which led to a CT which led to pulmonary sarc - I have it in my lymphs & lungs.  

I work in sales & I have 2 little boys.

my breathlessness comes & goes , good days & bad.  But my condition peaks & troughs.

I had a flare up of rib pain over Xmas which went within a month with anti immflamatories.

since September I have had calf pain & recently pain in the tops of my legs.

its freaking me out, I don't take anything for my sarc.

Docs don't know about the condition & three months between consults is a long time if things change.

has anyone else had the leg pain? I'm hoping it will just go eventually.

i don't let this get me down outwardly but inside I'm petrified - no one really understands & when you talk of your symptoms you just sound like a hypercondriact.  I know what I feel ... It's just worrying I guess 

be happy to share discussions with people who know what I'm feeling.cool

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  • Posted

    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.
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  • Posted

    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

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    • Posted

      Hiya! Nicola,

      thank you very much for taking the time out to respond.

      it sounds like you have had a rough time of it - but it sounds like you have learnt to cope with it really well.

      it reassures me to know that you have had the same as me but with the leg pain, your mind can play tricks on you & you google things then become  unsure perhaps I have that too etc etc - it's easy to loose perspective! 

      My chest is bearable/doable & by that I mean I live a really busy life ... My two boys keep me going plus my job as a sales manager - sometimes I'm up & down like a yoyo! I can't believe what I do in a day lol but some days I get home & just feel totally wasted , I sit on the sofa and have hardly enough energy to put my boys pjs on them! With the children - they don't understand & I get very frustrated if I'm running on empty & they insist on me repeating myself I just find it exhausting!

      my lung function was as good as 95% of the population in October but the last 2 months I've been coughing again & feeling tight chested but I'm told that with this you can get peaks & troughs & guess I'm having a flare up?

      my legs aren't too bad - not as bad as yours by the sound of it. My calf muscles feel like I've been in the gym - worse first thing in the morning or after periods of inactivity & the tops of my legs have begun to hurt too.

      Other than these complaints I seem to be ok & I've not been offered steroids.

      im working on eating well, excercising & positive mental attitude but I just seem to get anxious every now & then.

      did your friends still train (the runners) as I'm a keen cyclist & would like to know if they kept on running or took a break from it? 

      I hope that you can stay off the steroids - they sound like they can be nasty 

      i look forward to spkng with you again.

      thanks again

      caz

       

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  • Posted

    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

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    • Posted

      Thanks for the info - I've not had any 'lesions' which is a good thing.

      I'll defo ask about the absorption - I have a long function in Monday.

      Yes, if say the symptoms flare up . I was defo feeling better between aug & dec. the consultants don't fill me with confidence & they treat you like you should just be ok with everything . It's tough to keep up.

      I find family & friends understanding & supportive but they don't actually get it & they don't get the condition either - it's so varied for so many people.

      My brother had sarc 10 years ago - same as me but his main symptom was sore lymph nodes. His went away after a few years - he was exactly the same age age as me when he had it. Wierd eh. But he can't relate to me because his sptons were different.

      I think you are right - you have to manage the sarc not the other way around - this whole thing has thrown everything into perspective for me & I'm glad that I have my amazing little

      Boys to keep me going.

      Does your sarc cough get worse with cold weather? Sorry forgot to ask!

      Regards

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    • Posted

      The cough - far worse. If I go out of a warm building into cold air, it makes me cough a lung up, I nearly choke. I always (well nearly) always have a scar across my mough or I pull my jumper up. Other times my breathing is worse and so therefore I cough more are Air conditioned buidlings, places like shopping malls as there is no fresh air. I live in the country but on the occasions Ive been to London the underground nearly kills me. I wease, cough,I cant get my breath then pour with sweat. I make a rasping sound when breathing. This is due to the pressure, lack of fresh air. Its embarassing. Everyone stares. I try to avoid confined spaces where lots of people are. 

      I found the person doing the breathing tests tell you quite a bit of information if you get chatting and ask what each test actually does and has it improved. Depends on how friendly they are. If youre feeling brave, ask the Dr what their experience of Sarcoid is and how do you compare to other patients. Ask them how your Sarcoid differs from your brothers. You may know the answers to these but see what they will tell you. I got Sarcoid when I was 40 which is common. I would have preferred some diamonds but life isnt fair !!!!!

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    • Posted

      Yeah me too - I take my boys to the skate park every Sunday & it's bleddy freezing! I sit there and progressively feel worse the whole time I'm there! Then the coughing starts & it's relentless!

      My husband keeps putting the air con on in the car & it chokes me up! I tell him to turn it off - he really doesn't understand, it's like fake air is not helpful.

      I also find lots of talking makes me cough too.

      I think the cold weather has made my symptoms flare up .

      Good job I've just booked a holiday to Cyprus in June! Roll on the summer !

      I was diagnosed last year so I was 36 but I'm 37 now. I've had this for one year at least now.

      I feel a bit scared to ask the questions in case they tell me something I don't want to hear - I sometimes feel like denial is easier!

      Think I will try & pluck up the courage to ask on Monday.

      I live in Cornwall so should be plenty of fresh air out there lol

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    • Posted

      Does your husband realise how much petrol Air con uses? it drinks it and when he realises how much it takes he maynot be so quick to turn it on. As a teacher I talk for a living - ive learnt to start my lesson, I talk, the kids cant interrupt until I stop and they can see me run out of breath. They are very good with me, its a bit of a game, so yes I speak less which the world is quite happy with but when I do speak its purposeful. Thats with friends and family too. And I'm a better person for it!!!

      Im a naturally curious person and I need to know all the facts. At first they thought I had TB, then Lymphoma and ended up with Sacoid.But thats just me and I realise not everyone wants to ask or know. remember they dont know very much!

      Let me know how Mondays goes

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    • Posted

      Lol that is true! I'll enlighten him!!

      You must seriously run out of mojo with all of those children to contend with! It's a scarey thing when a doc tells you that you could have lymphoma. They told me that too & had to wait 8 weeks for the CT to confirm sarc. Phewww.

      I want to ask the questions so hopefully on Monday I might find the courage to. I'll let you know!

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  • Posted

    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 

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  • Posted

    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.

     

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    • Posted

      Hi there

      Thanks for responding.

      Sounds like you have similar to me - this cold weather seems to be making my cough worse & the pain in my legs. I don't have any rashes but my legs are so stiff especially in the morning - nothing I can't deal with but defo uncomfortable. Mainly in calf muscles & more recently upper thighs. How long have you had sarc? I've had it for just over a year now.

      I've had sore armpits too but luckily this came & went quickly.

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