Newly diagnosed. Terrified.

Chest and lungs
1

Hi all. First, please bear with me if my post is a little long. I know not everyone has the time or desire to read through long posts but I really hope at least some of you will be kind enough to write even a word or two.

I was diagnosed with this terrible illness 3 weeks ago after a biopsy (lung). The whole thing started 8 months ago (in July '16) when I woke up one day with this strange and terrible pain in my joints and could barely walk from the pain in my feet and ankles...Prior to this, had some swelling in my feet for a few days but wasn't accompanied by any pain but I really thought it was caused by some work I'd done (lots of squatting). 4 doctors and one hospital visit later and many blood tests for R. Arthritis that came back negative I was sent to a Rheumatologist. X rays, CT scan, then the biopsy, and it's....sarcoid. It took 3 months of waiting and worrying.

I am no stranger to suffering and have suffered (mostly mentally and emotionally but also some physical) just about every day of my life for the past 40 years but this was a whole new level. Being a worrier and suffering from severe anxiety and depression, these 3 months were nothing but hell. I was literally paralyzed with fear, spending hours and hours on the net reading on this illness. Doctor also thought it could be cancer at first. Stopped eating as appetite is always the first thing that goes when I'm worried. What makes things much worse for me is that I live alone and have no relatives around and only a friend or two who hardly call at all. So, I spend the whole day lying on my couch just worrying how bad my case is going to be. I don't work now and I don't go anywhere since it's almost always raining here (west coast of Canada). I just feel miserable and extremely depressed.

At the moment, my symptoms aren't bad at all. In fact, after the initial onset in July, the pain gradually went away in about 4 weeks but I only have occasional mild pain or burning sensation mostly around my right elbow and some mild pain in the left ankle and right above it that comes and goes. I did feel like the pain got a little worse in these areas after the confirmation of sarcoid, which I know is due to anxiety and stress since from what I've read can aggravate the condition. For the past few weeks and especially after my bronchoscopy, I feel some pain or discomfort in the middle of my chest after eating especially if it's something dry (it feels like some food is stuck in there) but it goes away after about 1 hr. That scares me and I'm wondering if it's because of the swollen nodes, or maybe because I've hardly been eating for these months. Another thing that scares me is eye floaters since I've read they can be caused by sarc but I've had mine for many many years but sometimes my mind makes me feel like they're worse and they can bother me. I also have some popping sounds in my shoulders and right elbow that started after this whole thing. Also some burning sensation in my sinuses/mouth but it seems to be most noticeable when my stress goes up. I don't have any shortness of breath that I notice (I used to bike). I do suffer from panic attacks and that can make my chest feel tight. I don't know about the results of my breathing test but according to the person who did it, it wasn't bad! I haven't talked to my doctor about it.

I've been waiting for some more tests on my heart (echo) and eyes for the past 2 weeks but I still havent heard from them. I'm just terrified that I might have it in my heart, eyes or god knows where else. I just can't stop this vicious cycle of worrying to death and surrendering to my worst thoughts. And here they won't give any meds for anxiety no matter what.

I know this is long but I don't know where else to turn. The loneliness and the fear are killing me, literally. I feel I'm wasting away slowly.

I'm sorry. I know my symptoms aren't bad compared to how bad others have it but knowing how unpredictable this curse (sarc) is, and to someone with severe anxiety it can be really bad.

Any help, suggestion is deeply appreciated. I can't find any local support groups.

Good luck to all of you and I pray to god that we will all be cured.

2

Hello. I was diagnosed with sarcoidosis August of last year after I had a chest x-ray for some pain I was having in my ribs. They saw some spots on my lungs so I also had a CT scan done and a lung biopsy.

I know how scary that the diagnosis can be. But in my case, all I kept thinking was that cancer would be the worst thing that they would tell me so once I found out it was sarcoidosis, I was actually very relieved. My pulmonologist explained to me that most people can go on to live completely normal lives.

I can definitely relate with the anxiety that you're having. Ever since I had my daughter a year-and-a-half ago, I have suffered from major health anxiety. I am always worried that there is something wrong and spend hours on "dr Google" ( which is never a good idea). My husband likes to tell me "don't worry until there's something to worry about." It makes me think more in the moment instead of looking at possible worst-case scenarios that could happen.

For some people, sarcoidosis is short-lived and some may never have it return. There are others that have the chronic version of it that are sometimes quite sick. It really just depends on the person. And I know it's easier said than done, but try not to worry so much. That can definitely make things worse.

Did the dr. Put you on any sort of medication or anything? I'm on prednisone and I'm gradually tapering off since my last CT scan showed an improvement of the nodules. It completely took away all the joint pain I was having and apparently also seemed to help shrink the pulmonary nodules down.

3

Understand your fear of not knowing, I was diagnosed in 2015. I live in Australia gone through different drugs til nothing was working. After receiving Infliximab infusions everything settled down and I turned the corner. It's forums like this which are a good place to seek answers to questions you have. Best of luck hope it all works out for you

 

4

So sorry to hear this. My partner is 29 and we have been waiting 4 month on an accurate diagnosis. Although it's 90% sure sarcoidosis we can't have it in paper as of yet. It's a scary time. I wake up some days and see his face and just no we are in for a rough day. These forums are great and I've spoken to some lovely people on it so please keep in touch as speaking to someone who understands really does help. I always feel others may not fully understand as they aren't going through it. I really hope you start to feel better soon. Maybe try some mediation cds/books etc. They can sometimes take your mind off the outside world 😀

5

Thank you to all those who replied. I really appreciate your taking the time to read my long post and replying. It does help a bit in my case since I hardly have anyone to talk to. I think this site might be my only hope for now for some relief and a compassionate ear.

Gwens and david, I'm really glad that things are better for you now. I hope it only gets better for you and all others.

Shelby, sorry about your partner. I know how scary waiting can be. It took me 3 months of waiting to find out. It was nothing but torture for me. I think I have more damage to my nervous system because of the anxiety and fear. I still wake up in fear and my heart starts beating heavy the moment I open my eyes. That's what 3 months of worrying does. But I don't understand why you still have no diagnosis after 4 months. I really hope you hear something soon and I hope it's not as bad as you may fear. I have a soft heart and it's always tortured me to see or hear about people's suffering. 

Gwen, I'm not on any meds at the moment. Still waiting for my heart and eye exam but things can be really slow here. I'm just hoping for the best even though for someone with anxiety it's always the worst that we expect. If any medication I wish I could get it's something for severe anxiety. My fear has completely taken over me and I'm unable to take my mind off of things a little bit. Being alone 24 hours a day is only making things much worse but like I said I don't know where to turn.

Thank you all again. I really hope to stay in touch.

6

Hi Sufferer

Sorry to hear of your poor health. We all understand as we are in similar boats to you.

Reading your post I found it interesting that you had acute foot and ankle pains. Is it possible that you may have gout? Gout is one of the three forms of arthritis, often joked about and wrongly associated with drinking too much alcohol. It is really a form of arthritis and easily identified by blood tests and if proved positive it is easily managed by meds.

Some of your other symptoms sound like they may be separate problems and worthy of separate investigation.

I live in Australia like David but I have not met him. It’s a big country.

I cannot believe an advanced country like Canada will not issue meds for anxiety.

Is it worth crossing the border to USA and getting medical attention for this problem?

Hope all goes well for you.

Regards 

Tangles

7

Hi Tangles. Thanks for taking the time to reply. It makes me feel a little better when I know I'm not alone, at least in the virtual world.

I would be pretty happy and grateful if I don't get worse. The pain in my right hand and left ankle isn't nearly as bad as it used to be when all this started (couldn't move a finger back then). I don't think it's gout. It's like remnants of the original pain only it's much milder but it's the same type of pain (more like a burning sensation around the elbow). The pain in the ankle is where the foot meets the leg bone (front), and a little higher in the shin. I doubt this can be gout. I know I've always had some discomfort in my joints and fingers but according to the Xrays I don't have Arthritis. I don't know. But I know the snapping sound in my right elbow and shoulders only started after my initial onset of pain in July. I don't know how this damn sarcoid could've affected these parts.

I know I should get the other problems I'm having checked out but I'm just mentally tired and I'm scared of going back to see more doctors but I think the discomfort in the chest after eating will need to be checked out.

Yeah here they won't give you anxiety meds even if you have a heart attack from anxiety. I've been asking for help with my anxiety for the past 15 years and I always get the same answer from doctors - we can only give you anti depressants (have tried them all and they're as useless as sugar pills to me). I've pleaded with them to help me as I feel my body and nervous system are being destroyed from anxiety and stress but it's always the same answer. I think once a hospital gave me 10 Ativans after my first panic attack more than 10 years ago.

I have actually thought about going to the US since I'm only minutes from the border but then I'll have to pay to see a doctor and then I'm not sure if they'll give me a prescription or not and I'm not even sure if it's legal to bring it across the border. I'd also have to pay the full price of any meds down there and without an income at the moment I don't think I can.

 Lucky you, you live in a sunny place. If I had no problems at all the rain alone is enough to give me the worst depression. In this part of the planet sometimes it rains 24/7 for weeks at a time and most of the year.

Thanks again for your reply. At least this gives me something to do since I have to write back, and it helps me take my mind off of things.

I wish you good luck.

8

Im so sorry that you are going through all of this but I am happy that it is doing better.  I was very lucky I did not suffer any pain.  The blindness in one eye anddeafness in one ear were the worst, but no pain, when it was active in my lungs they just though I had pluerisy/pneumonia suddently .. 5 times in 1 year.  it wasn't until recently when I went blind that my eye doctor caught it!  they were able to confirm by the lung biopsy.  I had hd 3 previous pulmonologist and only 1 thought pneumonia did not cause the pleurisy but he did not know what did....and dropped it.  Thankfully my eye dr caught it.  I haven't started the Humira yet and only started the Methotrexate on Saturday.  the fatique is terrible since sunday but getting better today....but dont know how that will be once we add the humira.  still consider myself absolutely lucky...if I had to have something this is at least treatable and for as rare as it is and as rare as the neurosarcoid is...I still consider myself lucky compared to your and others story.  I am so sorry that you have had a rough time.  I get how scary this is and it makes me feel a little better knowing I am not alone in being scared.  THANK YOU for you courage to post...and everyones!!

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Thanks for the reply, Magghe. Wow! I envy you for the way you're handling things. You've lost sight in one eye and hearing in one ear and you still consider yourself lucky. I'm terrified of something like that happening to me. In fact, I've always had a phobia of having some disability. I think you've gotten it worse than me even thought I still don't know the extent of my illness. Yes, the pain was unbearable in the beginning and I still to this moment have fear that I might wake up one day and experience it all over again but my sight isn't affected so far and I don't have shortness of breath that I notice but then I have to deal with a whole lot of other problems (depression and anxiety and others....) that have completely ruined my life.

So, there's no way they can do something about your sight and hearing that you lost?

I really hope things get better for you and I hope god gives you -and us all-  the patience to deal with this.

 

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Hello T, I know the anxiety you are going through and wondering what is in store for you in the coming months.

Aside from the treatment for Sarcoidosis, if you already have a support network of psychologists and/or psychiatrists, it's time now to contact them. If you don't have support network, you must establish psychological support.

I'm not familiar with Canadian weather, particularly the cold weather you have. Find out if there are any walking groups that go walking in large shopping complexes like Westfield. It is very popular in suburban Adelaide and it happens evert day, very early in the morning as deliveries are taking place.

The local one here is the Marion Mall Walkers group, named after the Marion shopping centre where it happens. You can walk in comfort with fellow walkers, have a coffee together after the walk and have something to sit down on if needed. My doctor is adamant, exercise is a must, it helps with overall fitness and it helps with mental health. 

You will always find support from fellow Sarcoidosis sufferers on here too. Please look through my past posts, you might find something useful there.

I sincerely wish you all the best for your future health. Whatever you do, don't suffer alone and don't belittle you suffering, you are allowed to state how you are feeling and what you are going through.

Kind Regards

 

11

Thanks for the reply, zss. I appreciate you writing me with your suggestions. At the moment, I'm not actually taking any meds yet.

Unfortunately, I don't have any support,  psychological or otherwise. I'm not even sure if psychological care is even free here. I will be seeing my useless family doctor in a few days and I'll ask him.

I'm literally all alone against this. I have no true friends around. I'm an introvert. No. I'll just admit it, I have social phobia, which makes it hard if not impossible for me to go out and meet people. The weather here is miserable most of the year (rain, rain, rain.....), which is another reason why I hate going out since cloudy weather and rain make me extremely depressed. I feel like I'm surrounded from all sides. I feel like I'm drowning and there's nothing around me to hold on to. This is a nightmare, as if I didn't have enough to deal with to begin with.

I used to go biking once or twice a week in a beautiful park here but that's only possible in summer but I don't know if I can do that now that I know what I have and I can't stop thinking and worrying about it. The fear is paralyzing me and I have no interest in doing anything at all not even eating or leaving my couch.

Writing here is just about my only contact with the outside world with the exception of a phone call once or twice a week.

Thank you again for your care. I wish you the best too.

 

12

Hi Sufferer.

Health care is different in different parts of the world.

Here in Australia your GP can give a referral to mental health after an assessment to see a psychologist for ten hours pa.

This is at no cost.

I hope you have something similar in Canada

Worth asking your GP on your visit

Regards

Tangles

13

Thanks, tangles.

I doubt it's going to be free although there might be some places where they offer some counselling on a sliding scale (fees) but most will also have a waiting list.

I'll ask the doctor this Fri although I don't have much hope he'll be of any help. This guy wouldn't give me anything for my anxiety or my lack of appetite and he shows zero compassion.

14

Time for a new doctor!!!

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Im sorry I seemed to have missed it last time I read your comment. I get that feeling of "food stuck" at times.  I asked about it because I thought it could be due to swollen nodes.  Dr. assured me it wasn't.  now I just try to ignore it and take smaller bites with water if I need to.  That has helped a lot.  I also have anxiety but haven't had a panic attack in close to 20 years thankfully.  when I start to feel anxious I think about how much worse it could be.  For instance I could have MS or cancer.  it sort of helps to reassure myself.  when I first get bad news I do tend to shut down for a day or two...but then I slowly start joking and making people see Im "ok" and my humor is probably innapropriate but I dont care because its about me (so Im not hurting someone else) and it me find some humor in it.  I know none of this helps you I know how terrifying anxiety can be and I will think of you and hope that you get through each time with less and less.  People could tell me the sky was blue ...but if I was in the middle of a panic attack I would be convinced it was purple....so I do actually understand a little.  Im sorry they wont give you anything to help.

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I dont know how they would handle it (a dr. giving you anti anxiety meds) but Valium/diazapam is very, very inexpensive and althouth its not super stong at least it would take the edge off the anxiety.  I think the dr. visit would be more.  I live right across lake Erie and am a nurse.  I also have a nurse friend in Canada near Brockport (?) I could do some checking pricing and see if there is a good Sarcoid clinic for you over there I go to the Cleveland Clinic.

17

The drs. are still hopeful they can restore some of my sight, although we had to Laser some of it...so it is permanently gone, but they have hope.  I m getting well adapted so I actually wish it wouldn't change I dont want to "re adapt" for a little bit of sight. I dont want to lose anymore.  Thank you for thinking I handle it well but I have definately had my days and I used to have dreams that my right eye went just as quick as I was driving and I had to stop in the middle of the road.  Its getting better now though, we are doing everything we can at this point I guess.   I dont notice my hearing too much I was bord partially deaf anyway so Im kind of used to that I am terrified of going completely blind though.  From what I understand blindness is extremely rare.  I think now that they finally diagnosed me I should be ok on the other eye and I think you should be good too.  I have been told by several sarcoid drs that it is really really rare to go blind. so I think you and "eye" should be cool I hope that relieves even a teeny tiny bit of anxiety for you .

18

oh I am so sorry!!! I wish I could visit with you and show you people do care.  I wish I could get you a good dr. that would care and help you.  You need to look around it really will help with the right dr.  I just know it will...My eye dr. who started all this with me and finally got me diagnosed has spent countless hours discussing my case with collegues and spending multiple appoints just holding my hand and telling me it was going to work out.  he has alway been honest and forthright...but compassionate and hes a youngin LOL so maybe he just isnt jaded.  But its nice to know he doesn't let his ego run wild and didn't mind asking all of Cole eye clinic what they thought.  my "difficult" case has been discussed many times at Cole and the sarcoid clinic.  it makes me more relaxed knowing multiple people believe my treatment is best and to know that many people are wanting to save my vision and routing for me to get some back.  I only asked for enough to start drawing again....I didn't get any back but I eventually adapted just like my doc said I would and Im drawing again just like I was in October.  heres a   big Cyber hug to you if you 'll have it

19

Yes you're right. Only thing is this is my new doctor...unfortunately. He replced my previous nice caring doctor. But I'm going to start looking.

20

Thank you so much Magghe for the nice words and the encouragement. I really appreciate that more than I can say. Yes I'm sure there are people who do care out there, unfortunately, there's none around me (in the real world).

I'm going to see my doctor tomorrow but I'm hoping to find another one - a good, caring one- soon but I know it won't be easy. I used to have a really nice doctor before this guy. She would sit and listen and not rush me. Not like most "doctors" who just look at you as a number and rush you. I'm going to need a lot of luck finding another one. But I'm glad you are happy with your doctors and you feel like they're doing the best for you. It seems like your eye doctor is one who really cares and is willing to take the time to diagnose, something many doctors aren't willing to do IMO. I saw 5 different doctors (one of them at the ER) about my pain and symptoms but only one decided to send me to see a rheumatologist, that one was my previous doctor. One of them even told me I had no medical issues and needed to look into sports medicine !! Just don't know how such people get to be doctors. I probably would've been screwed had my doctor -then- never refered me to a rheumatologist to try and get to the bottom of what was wrong with me.

Anxiety is something I've had for a very long time. When I first wake up I'm usually anxious and worried..for no reason. Well, that was before all this even started. So now.....multiply that by 1000. I used to struggle with panic attacks that I couldn't even drive in traffic or even go into stores like Walmart or Home Depot. Then I gradually got better until they almost disappeared until this started. I actually almost had a full blown attack right before I left the hospital after my biopsy. Luckily I was still next to the bed. Anxiety is like torture. I just can't stop thinking and worrying. What's going to happen to me and how's this illness is going to affect me and how am I going to manage on my own.....

Not knowing and the fear of the worst is what makes my anxiety get out of control. Heck, prior to my Xray and CT scan results I don't think I had much of symptoms but now that I know what I have and with all the anxiety some of my pains are coming back. Never even had pain in my chest or swallowing issues until they told me I had sarc.... Amazing how stress can affect us.

I'm like you in that when I first hear something bad it totally paralyzes me with fear then I gradually start getting better but this time seems to be the exception. Every time I think about this illness and how serious it can be it hits me like a wall and I fall deep into depression and anxiety. This is like a never ending nightmare. I just wish I were a little stronger than this but that's me.

I'm glad for you that you can make yourself feel better when anxiety hits you. I'm also glad that you can draw again but I really hope that they can do something for your eye. I really do.

Oh and this swallowing issue or the feeling of food stuck in the middle of my chest,  I don't know but I feel it's connected to this damn sarc or the swollen nodes. Or maybe the anxiety just made it much worse or more noticeable. I'll ask the doctor tomorrow but thanks for letting me know. It kind of made me feel a little at ease that your doctor didn't think it was connected.

Again, just want to say thank you for writing again and for your care...oh and for your hug   I hope we all have better days coming to all of us.

Take care.