Just been diagnosed

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suzanne Posted: 04-17-2010 7:12 PM

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Hi my name is Suzanne and 2 months ago I was a very active and busy health professional.I am now struck down with joint and muscle pain that is excrucitiig , fatigue, erthyma nodosum, headaches and have great difficulty just getting out of bed in a morning. I was told yesterday following a CT Scan that  I have Sarcodosis. My GP was unable to tellme much more and he is referring me to Physcian. I have been on the Internet and read about Sacodosis and frankly I am frightened to death. It all seems gloom and doom. Am I going to be like this for the rest of my life or will I go into remission

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michelle replied on 04-17-2010 10:42 PM

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Hi Suzanne,

I dont know much about Sacodosis, but I know a Lady from my Breathe Easy group has it. From what she has told me she has flare ups which she takes meds for, then she settles down for a while. I am not shure if anyone on this site has the same condition has you, but I am sure if there is they will advise you.

I hope you feel better soon. Take care

Regards Michelle

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Maria W replied on 04-18-2010 1:29 PM

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Hi Suzanne Sorry to hear about your recent diagnosis.  I have had similar symptoms to you and also a busy working professional.  The ftigue has been hard to deal with.  I have seen several experts and it was the ENT who felt I have Sarcoidosis.  I did have a gramuloma removed from my throat over 4 years ago and end of last year had swelling and pin in my lower jaw.  I was treated for an abscess and experienced an abrupt onset of pain in my face.  Following which had bells palsy - thankfully rectified and severe pain to include neuropathic pain which may be due the inflammation pressing on nerves - who knows,  I may have been diagnosed earlier however the problems with my face was my main concern.  In fact I had the erhtyma nodosum and never mentioned it to any of the consultants as I felt they thought I was going bonkers.  I am waiting to see a consultant in Liverpool but I suggest you look at the Royal Brompton Hospital in London.   I may ask for a referral there as they are specialist.  Have a look on the SILA website.  I agree some of the information is frightening but some people do go into remission.  If you wish to have a chat with me I would appreciate it as we are both in a similar position.  Hope some of this helps.

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suzanne replied on 04-18-2010 1:39 PM

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Hi Maria

Thanks for that. My GP is still in the process of referring me but I had heard about the Royal Brompton and was going to ask him if I could be sent there, but as we live in Yorkshire I am not sure if that is possible. I ingnored the erythema nodosum myself as I thought I had been bitten! I wish I had seen the GP sooner. As with you the hardest thing for me is the fatique and family and friends don't seem to realise how debilitating this is. It is comforting to know that i am not the only one out there suffering and that I am not going mad( I was told by one GP that I was a menoupausal women and to stop moaning and get on with life!!)

Suzanne 

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SusieQ replied on 04-18-2010 4:05 PM

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suzanne:

It is comforting to know that i am not the only one out there suffering and that I am not going mad( I was told by one GP that I was a menoupausal women and to stop moaning and get on with life!!)

Hi,

Have posted on your other thread as well, but just wanted to say that no way are you going mad - I was going to put that you are as sane as me, but then had second thoughts !

As for the fatigue and others not understanding, I live on my own and am fairly independent, so friends had no idea how my condition (COPD, Bronchiectasis and Asthma) affected me. Then we all (9 of us) went on holiday last June to Cornwall, renting a large house, and they saw first hand how limiting my condition is and how fatiguing.  They also saw and understood for the first time my dependence on oxygen.  It was a breakthrough and in some ways I wish I had let them into my life a bit more before, rather than be that person who could always cope!  It was obviously ok for them as we are off again in September - Cornwall again, but a different house.

Sue

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Ian replied on 04-19-2010 11:28 AM

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Hi Suzanne

If  I could throw two penneth worth in would avoid long journeys to hospitals as the fatigue cost most likely outweighs any gain. The hospital will probably want to monitor you over time to get a clearer picture of what is happening , before they can give a prognosis .  On the up side you have a diagnosis which explains to family friends and GPs  what you are trying to cope with.

               Ian

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lahlah replied on 01-25-2012 9:18 AM

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HI Suzanne, I have just joined this forum and came accross your post. I was in your posistion 10 months ago. I dont wish to put anymore pressure on you but if someone had told me more about the diesease then I would have been able to cope with it sooner. Firstly DONT be frightened to death, it wont help and it will hinder your recovery. I was a very active professional House Keeper on an estate, and bang, just like you over night it all changed. But now you have to "adapt, improvise and overcome". Life isnt all doom and gloom, it change and accomodate. Planning is the key. I dont know about your personal circumstance, married, kids blah blah. But my Husband and I have found that after the initial 6 months things got better because we have a really go routine going. I have the added bounus of the Erythema Nodosum hasnt gone yet and caused hyper-sensitivety in my feet. On the basic level now, if you are tired, sleep. If you are in pain, take painkillers. If someone asks can they help, let them. Donot stress over this, please it wont help you. It took me months to realise that it wasnt going to go away overnight nad I wasted soooo much time stressing over it. Its a bugger of a thing but life can go on with it, no more partying though.

Good luck Lucy 

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Lorien replied on 01-25-2012 9:28 AM

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Hi Lucy,

Welcome to the forum.  Suzanne doesn't seem to have been around for a while but your post will be most welcome to people who have sarcodosis - or any other disease - as you come across as so positive in your attitude. 

How do you manage now?  Did you have to leave your job?  I'm wondering if you lived in and therefore had to find somewhere else to live?

Best wishes,

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lahlah replied on 01-26-2012 1:35 PM

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Thanks for the reply. I think being positive helps much more than being negative, but thats the way I have always been, not that I havent sat with my head in my hands crying my eyes out at times, but that just makes you breathless, so counter productive! Iam very lucky in the fact that both My Husband and I come as a "team", hes the Gardener/Handyman now also proxy Houseman. Our Boss is very understanding and isnt putting me under any pressure to return before I am able, I do think that never having taken the mick and being a very hard worker in the past really has paid off.  As I have said to many people, be prepared ( always a good housekeepers motto). On a good day do what you can, but most importantly "know your limits". If you dont feel too good today, dont do it. Home shopping and a good slow cooker is an abosolute must on the day to day running of life.  Another thing I have found is dont feel guilty, this is out of your hands, accept it. When I feel a bit miffed over something, I used to take a deep breath ( ha,ha) but know I just sit down put my feet up and count to lots. Try to keep your hands or your mind busy on a good day, that helps I made all our Christmas Pressies, Tissue box holders, Lavender mice, silly stuff like that but I had the satisfaction of knowing I handnt wasted my time. Heres to another busy year, albeit sitting down. take care Lucyx 

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Lorien replied on 01-26-2012 3:50 PM

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Oh, what a lovely post Lucy, I hope you stick around!

Tell me about these laveder mice.  :)

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lahlah replied on 01-27-2012 9:00 AM

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Absolutely easy peasy,  three pieces of materials. 2 pieces in the shape of a tortoise shell and 1 piece round. The 2 pieces place wrong side together and sew along 1 side ( the top).  Sew the 3rd piece to the bottom of the opening leave a little opening, turn so the right side is facing out now, fill with dried lavender and sew closed. Take a piece of wool and plait a tail and sew to the bottom, sew on felt eyes and ears to the face and sew on whiskers and nose with embroidery thread. Very cute and good fun to make.

Not being able to do a great deal, even something a silly as that does help me feel like I`ve achieved something today. I found the local library have been great for find various books to get ideas from, I am very lucky in the fact that being rural we have  a library bus which stops outside the house!! Its worth giving your local library to see if the have a bus, it has been a real lifeline for me.

take care Lucyx

Take care Lucyx

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Lorien replied on 01-27-2012 10:39 AM

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That's really lovely.  I bought a bag of lavender last year and ended up doing nothing with it.  I've just seen a weekly craft session opening up in the next village so I've signed up for that.  I'll make some lavender bags (though the lavender has probably lost its niff by now!)

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lahlah replied on 01-28-2012 9:04 AM

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Just add a few drops of Lavender oil and give it a shake. Well done you for signing up for the classes.

take care Lucy

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rita replied on 01-29-2012 10:24 PM

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Thank you Lucy - you have given me some new ideas!  Some years ago I cross stitched some lavender bags and tucked them in with my undies and nightwear.  Still smelling a little now, but as have reams of material left (found a sale about 10 years ago and still have loads left!) I could get it out and do some more.

Well done to you too Lorien for going to a class.  Will you use your scooter to get there or can you drive now?  Hope the winter has been kind to you so far

rita