sarcoidosis

Chest and lungs
1

hi, I'm emma im 31 yrs old with 2 kids. 

I've just been diagnosed with sarcoidosis and looking to speak to other sufferer's so I don't feel like I'm going mad. looking back I think I've had it for yrs .but a couple of months ago I was waking every night with pins and needles  in my hands and legs and when I got out of bed I'd hardly be able to walk as my ankles were so stiff and sore.i just put it down to the shoes I had been wearing and all the walking I'd been doing recently.then about a month ago I noticed these odd red lumps all over my legs and my ankles were swollen. The next day I couldn't walk and all my joints in my whole body were hurting (including my jaw) my boyfriend took me to see a doctor where I was told I had erythema nodosum and given tablets.i spent a week and half in bed and had to had an ice pack on my knee.Then just as the pain started to improve from that i started to get chest pain and heart palpitations and i was really short of breath, to the point I was out of breath just watching TV. I was sent to the hosptial and spent a week there. I have granulomas in my chest and having a biopsy on sat aswell as a 24 heart monitor fitted.i hate moaning but it's really scary as I get so tired and I've been getting alot of back, hip and lower tummy and leg pain as well as awful vivid dreams.im only on normal painkillers.

 I need to get back to work and start being able to pick my daughter up from school.i don't feel like me anymore and it scares me sad 

2

Hi Emma, I was only diagnosed last week and I know how scared you feel. I have been really poorly since May and it's taken them 5 months to find the sarcoids behind my chest, I have not had a cough or a rash so it was only when I had a CT scan that they found it. Like you I just want my life and energy back but on a plus point I am much better than I was initially, I am now able to do nursery runs and I'm lucky enough to work for myself so I just do the hours I can manage! I have never had an illness for more than a day or two so it was such a shock. I am having respiratory tests on fri then seeing a consultant so I hope to know more then.I think I was more scared when I didn't know what it was because I knew I felt really ill and every x ray, scan, blood test was normal! I am on a prescription painkiller which I have for nervous system problems but my doc is not sure if they will keep me on that now they know it's sarcoidosis. Hopefully now they have found your problem they can start to help you but it's s scary place to be. It's nice to find a place where you can talk to others, I only joined a couple of days ago but I have learnt so much. Good luck for sat x 

3

Hi Emma,

I guess one of the best things you can do is to read online about sarcoidosis, what it is, its symptoms, how it can be treated, etc. You can also browse these forum as there is plenty of useful information from other people suffering from this condition. I know it's hard, but try not to stress yourself too much, as it will only make it worse. I guess you're scared because you don't know what to expect. well, in most cases, sarcoidosis can be controlled, but it depends from case to case. make sure you talk to your doctors openly, have all checkups done regularly, and follow treatments. Evidently, you can write on forum, whenever you feel like or whenever you want to find out something that bugs you. We, the "veterans", will be more than happy to help, if and when we can.

What to expect? To begin with, fatigue and yes, some pain. Although, some people going thorough all these can get back to their normal lives within several weeks or months - again, it depends on each person.

You never know how your body will respond, so you should not worry. I mean, yes, sarcoidosis is something serious, but it's not cancer. If you take care of you, and comply with doctors' orders, you have great chances to see your babes getting married and having children. So, hang in there. Good luck and I hope you'll feel better soon.

Magda

4

Thank both so much for replying. I was only diagnosed last week .It is a massive shock.i feel alot better than I did a couple of weeks ago. I've managed to do abit of ironing as I felt absolutely fine and wide awake...20 mins later I'm yawning and want to sleep!! I've been off work a month now (I work in a small busy shop) how am I meant to go and stand there for hours

 my friend is walking with me tomorrow to go pick my daughter up from school so il see how I manage. isnt it scary how your life can just change over night!  means alot having others to speak to about this! xx 

5

Yes, working while having to deal with sarcoidosis symptoms ins't easy. However, this is mainly becuase you're most probably experiencing a flare-up. After taking drugs for a while, your overall condition will improve. If sarcoidosis becomes inactive, you'll feel more energetic than you do now; you will have no more pain and your sleep pattern will improve a lot, which will help you function normally. Most people with inactive sarcoidosis have no symptoms at all; they do not even know they have this condition.

Maybe you can take some more time off from work until you feel better.

All the best,

Magda

6

Hi Emma is there anyway they could let you go back part time when you're ready? I'm a hairdresser, and after a couple months I managed 2 or 3  at work but then I would come home and fall into bed. I still have a sleep most days and I sleep all night, before my diagnosis we used to joke I had sleepyitis!!!!! My husband has been fabulous and mostly looks after our little girl, he is shift work so again I'm lucky he is around most days. I feel I've missed the summer, although we did manage a week away last week, I only had one day in bed I'll week, but I wouldn't have gone a couple of months ago, like you I couldn't walk far and I didn't drive for 6 weeks. Mine is getting better tho, and I only occasionally have a whole day in bed, so fingers crossed yours will do the same and hopefully they will try some treatment for you. X 

7

Sorry that should read 2 or 3 hours!

8

aww bless ya I was meant to go away next week to alton towers haha don't think I'm up to that yet. I only work part time which is lucky but like you being on your feet is gonna be hard! but I need to work and feel "normal" again. How long do these flare ups last? This has been like a month now..obviously I'm know where as bad as I was. just the tiredness.i remember my boyfriend joking about my falling asleep most evenings while we were watching TV. couldn't even watch a flim as I'd be fast asleep after like 20 mins haha I felt like an old person!  I'm so glad I'm not alone with this! xx

9

I have no idea how long but I think all of us are different? It was really interesting Magda to read that it can be active or inactive, I could not work out how I could feel so ill for 3 months, then feel normal(ish) and then feel ill again. I'm usually sofa bound in the evening but I can manage a normal day now (mine started in May) most days. I feel like an old woman too although I have a few years on you Emma lol! Does anyone know why we feel so tired and ill during a flare up? I felt just like I had the flu for weeks but I didn't have any other symptoms, like I say I've been lucky not to even have the horrible cough x 

10

Ps. Meant to say I never really want to go to work but once I get there something kicks in and I actually enjoy the normality of it. X

11

Yeah I couldn't work it out either and why I was so knackered when I'd only worked 4 hours and walked to the childminder , it didn't make any sense.so did you say you have more tests soon? xx

12

Yes, I had a ct scan last Monday and my doc called Thursday evening to tell me, hospital called on Monday and I have appointment on Friday at respiratory clinic then with a consultant. My lung x rays were both clear because my sarcoids are behind the lungs so it was a mystery. They only did a ct scan cos my veins are enlarged on left side of my neck so they were checking for tumours etc. amazing that we've both found out the same week. I'm happy for you to private message me if you like so maybe we could see how each other gets on? X

13

bless ya this disease is so strange it affects so many different parts of your body  

yeah I'd be more than happy to private message .It is amazing we both found out around the same time at least we both know how we each feel xx

14

Hi Emma,

I’m really sorry to hear about your condition, I too was diagnosed on Friday 31st Oct just gone.

I started with issues breathing, coughing etc early Feb 2014, which my GP thought was pneumonia, however my symptoms progressively worsened, with the onset of erythema nodosum, systemic arthritis in all joints preventing me from being able to move due to the pain, serve vomiting and mass weight loss (just over 3 stones in less than two weeks through the inability to keep any solids or liquids down), forgetfulness and numbness of the right side of my upper back and lower left leg.

I was admitted to hospital, where I had several bloods tests, CT scans, bronchoscopy (including extraction of lymph glands), MIR of the head (to rule out neurosarcoidosis of the brain) etc. The result of all these tests was inconclusive, falling somewhere between Lymphoma, TB, or Sarcoidosis, of which I commenced treated for TB (At which point I was praying for either TB or Sarcoid as I lost my father to cancer six years ago).

During the course of the last 8 months I’ve had 3 more CT scans, what seemed like endless blood tests, etc, which still did not provide any further clarification of a diagnosis, although as I started to regain some of my strength, which resulted in the doctors ruling out Lymphoma. I remained on the TB treatment until early October, and had a final CT scan which led to the diagnosis of Sarcoidosis, as this CT scan now revealed a significant number of granulomas around my lungs.

I’ve been back at work since June, as I had just purchased a new house prior to falling ill, and couldn’t afford to take any more time off work. Although I’m back at work, I’m constantly tired, and then when I get home, all I long to do is play with my boys, and spend time with my wife, which then also contributes to my fatigue.

In addition, I’m also suffering from depression, as a result of the fatigue, the frustration of not knowing the cause of my illness for such a long period of time, more infections that seem to be popping up as a result of being rundown, and the recent discovery of the illness to which there is no way of knowing if or when there may be another flare-up.

I hope that you’re now getting stronger by the day and that you’re able to play with your daughter, as I can with my boys.

Take care and all the best.