Symptoms from Sarcoid in Chest Lymph nodes

Hello,

I just was wondering if anyone that has been diagnosed with sarcoid in their chest lymph nodes only experiences weakness, fatigue, chest pain and digestive problems. My doctor says that my lymph nodes aren't big enough to cause such issues and my last X-ray in December showed no change in size. I had an abominal/pelvic CT scan as well that didn't show anything unusual and definitely no lymph node involement. Only thing that has changed is my ACE level which went up from 10 to 47 which is still in the normal range.

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i was diagnosed with sarc i my lungs and chest
and i get all those symptoms
my chest feels terrible most times and when you press the lumps they hurt like hell and its never in the same place they move around sometimes pain in my shoulders under my arms in my arms pins and nedles also in my fingers and arms

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I was diagnosed with pulmonary sarcoidosis with mediastinal lymph nodes enlargement and couple of nodules in the lung. I feel tiredness, little chest pain that I was said may relate to pleural involvement, and had an abdominal pain below left ribs. Couple of months after I was diagnosed with sarcoidosis, I learned that I have celiac disease and polyp in the small intestine. The polyp was taken out, I have been on gluten free diet and I do not have that pain anymore. I have been free of any medication so far.
It does nnot necessarily mean that you have celiac but you may check for that. It is only blood test to begin with although a definite diagnosis needs a gut biopsy confirmation. My ACE level is within normal range.
Hope this helps.

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Hi NHNick,

I sense what you seem to - that your doc is way off base and ignorant of current Sarcoidosis info. The more you read here (archived posts here) the more you will be convinced how outdated and limited his knowlege is. Think about seeing a rheumatologist to evaluate and manage your Sarc and the accompanying pain. Slowly build your healthcare team with this doc as team leader. He treats the whole person and refers to specialists as needed. Doctor hopping is par for the course with many Sarcies, so don't be disappointed with the flunkies - just move on.

Learn as much as you can so you can be a knowledgeable self advocate. If you search the web and use the search window at the top of this page to check out specific Sarc issues you will become more confident making suggestions to your docs and in making your treatment choices.

Keep us posted on your progress :)

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I was just diagnosed a week and a half ago..although I have suspected this since last April. I have both lungs fully involved in sarcs. Your symptoms sounds just like what I have experienced. They put me on 40mg of Pred. immediately after my biospy results came in last Friday. Now on fday 5 of the meds and I do feel more awake, not as fatigued. But breathing and swallowing more dense food, like meat, sometimes hurts going down.

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P.s. Your ace levels are really good my were 168. Guess my sarcs are very active right now.

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Hi ya. I was diagnosed with sarc in my lungs an lymph nodes back in 08. I get tired really quickly and breathless even by just popping to the shop, Dont seem to have any energy anymore. I do get stabbing pains in my chest like electric shocks and my joints do ache. My legs are effected too, feeling like lead most of the time. Since been diagnosed i have also started suffering with migraines which i never used to get. I go for 6 month check ups at the hospital ( i have chest x ray's, breathing tests and blood tests ) where they tell me my condition hasn't got any worst an see ya next time. Mean while your left with your life on hold!! Take care. X x

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Count me in! That is how I got my diagnosis, lymphnode biopsy. Never suspected it, never heard of it (sarcoid that is). In fact as many of us, I was told that I had lymphoma. Biopsy came back about 3 weeks later and was told I had Sarcoid. In fact biopsy report reads........All lymphnodes were actually taken over my granulomas (left side of neck), and also in chest. never had it in lungs as far as I know.

I had 4 children ages 5,3,2,1 so I thought I was exhausted from being a VERY busy mommy :)
How long ago were you diagnosed?
Take Care,
~Tonya

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Hi,I have had Sarcoid for 15 yrs,it started in the chest but has progressed to multi-symptom,the pain you are asking about in the chest for me is like a slicing stabbing pain right in the center of the sternum,, i can actually tell when the Lymphnodes are swollen,ie: a flare -up it's quite uncomfortable,but after this many years I just Deal.. I hope You feel better this is a long haul for most of us,was yours diagnosed thru Biopsy?Mine was back in 1995 and at first the doctors said oh you have lymphoma,you'll hear that alot on here,but of course for all of us sarkies" the doctors were wrong in saying Lymphoma right off that bat. I hope you never progress to multi symptom it is not fun...Heart skelatal,neurological the whole shabang,,,so good luck to you and so glad you found this awesome site you will find many friends here and recognize many of our screen names!!! heres a little secret for ya,,,listen to Irene Marie she is the best !!!! have a good night and best of luck..from: MaMa-Kaz !!

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Dear Yorkshirelass, have you been on any meds?

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Hi ya MathsterT,
I've been on the old fav Prednisolone, that was when I was having difficulty walking and not been able to climb stairs, but with my family having a very strong history of Osteoporosis my doc's dunt want me on this drug at all, so its used with me like a jump start. I was given Omeprazole for my 'heart burn' last year after one of my 6mth check ups, I nearly fell of my chair for that one!! Other drugs I keep getting are pain killers and also anti sickness tablets. These have been a god send when I've needed them!! But like what has been said before, I've had to learn to deal with this Sarc and I'm lucky to have very understanding family and friends!! That I think is the most important thing!
Xx

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Yes I have symptoms like yours but my lymph nodes are 2 inches in diameter by ct scan and medastinal lymph biopsy. I also have them in my abdomen and are pressing up against abdominal organs.....mostly gallbladder. I started feeling awful about 6 years ago and they could not figure anything out and I misunderstood that I had fibromyalgia too until I finally did some research and had an insurance without refferals to get the actual doctor who can diagnose it. Sorry I have to run 3 year old is in need of mommy attention asap!! Do some research of your own and make appointments with good doctors who can help diagnose you then they can treat your problem better.

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They discovered this disease more than 100 years ago and here we are today being told by most drs. that they know little about it. It will probably take them another 100 tears to know a little MORE about it. And,to answer your question...I feel like someone is sitting right in the middle of my chest.
Dave

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I am a 49 year old male and was diagnosed in 2007. Enlarged lymph nodes in my chest were accidentally diagnosed in 2000, but with no other symptoms I was monitored by my pulmonologist for the next seven years. In 2005, I began to get the cough, but it would come and go. In 2007, I got asthma symptoms, went to the dr and ultimately back to the lung dr. He did a ct and told me granuloma were in both lungs. The did a mystianoscopy to confirm Sarcoidosis. My primary symptoms are coughing, asthma type issues, periodic fatigue, especially after harder workouts like running several days in a row and sporadic and unpredictable chest pain. I only take Symbicort, no steroids. It keeps the coughing and asthma symptoms to a minimum. I was getting CT scan every 6 months and now have gone to annual scans. Since 2007, lymph nodes and granuloma have not changed. I just wake up every day and work through whatever symptoms I face and feel blessed that it isn't any worse.

The hardest part for me is the fatigue; I run a large company and travel and attend many evening functions and quite often feel worn out. Good luck to you.

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Your story sounds similar to mine. I went to MD a few yeras ago due to a sore lump on my neck (swollen lymph node). Had a CT of the neck, then CT of chest which showed enlarged lymph nodes in the chest and mediastinal area. Blook work showed positive for RA. Was sent to see a rhuematologist who examined me and said, "you're perfectly fine". Went to a pulmonologist who said...'you have enlarged lymph nodes and granulomas in your chest, could be from old infection or virus or could be sarc". No pulmonary symptoms or any other symptoms for that matter at that time, so I had annual chest CT's with no changes. Now I'm noticing occasional wheezing, with some chest congestion, occasional right neck and top of shoulder pain, fatigue (especially early evening), some insomnia, & dry, itchy eyes, 2 small zit-like bumps on my right leg (groin-ish area) that have been there for several months, etc. I have an appt to see the pulmonologist in a few weeks. We'll see if these symptoms add up to sarc and what the next CT shows. I have a feeling that I may get an official diagnosis soon. I'm not looking forward to the biopsy though.

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Thank you all for taking the time to answer my question and for all the extremely valuable advice and feedback. This site has taught me a great deal about sarcoidosis and it always comforting to know that we are all in this together and that this site has so many people willing to reach out and share their experiences and knowledge. God Bless you all!

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To diagnose me, they first tried a lung biospsy. It was outpatient and I was home by evening. Not a big deal. That did not confirm it. They waited about 60 days and then did the Mediastynoscopy. It was also outpatient and I was home by the evening. Recovery was not bad either. I hope you can get a firm diagnosis to elminate the wondering. I hope your case is as mild as mine and can be managed with minimal drug therapy. The other thing that messed with me at the time was additional symptoms brought on by the stress of it all. Over time many new symptoms I was feeling began to go away as I learned how to manage day to day. I now mainly have some periodic coughing, bronchial related stuff, and periodic fatigue. My eyes do bother me from time to time, but my dr thinks it is related to allergies. Make sure you get regular eye exams and have them do a slit lamp test which should tell them if there is any sarcoid. Good luck and my prayers are with you.

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Same here. lymph nodes swollen on lungs. lots of joint pain, sleep issues, and digestion problems.

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Yes. The nodes in my chest are aggravated as well. Hurts to swallow sometimes and indigestion bothers them. I seem to have more indegestion as well. I would be very worried about my chest hurting when I swallow, but it feels a lot like it did after my lymph node biopsy..so probably just sarc pains. I have a many enlarged nodes in chest, pain in other node areas and lots and lots showed up hot on a PET scan. I think in my case the ones nodes that hurt do not always show up on the CT. Dr sais all are sarc inflammation. I am starting a wheat free diet to see if it helps with the indigestion.

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Do you ever feel like something is floating in your throat when you try to swollow? My father used to complain of this and now I have the same problem. I almost choke on food sometimes. I have pulmonary Sarc since 1995. (Although there are swollen lymph nodes everywhere; spleen, stomach, lungs.)

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I am not sure from day to day if the pains I have everywhere are normal for Sarc patients or something I should be worried about. I go every six months for tests and once a year for a PET scan since I had breast cancer and many other illnesses since this nightmare started.

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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