Could this be another symptom of sarc? Please, someone reply.

Posted , 2 users are following.


It's been a long time since I posted here. Anxiety can make things much worse for me and reading some of the posts make my fear level go up. So, I try not to come here often but I've been having some symptoms that are driving me crazy and even though I've been scared to ask, I think I've got to the point where I need to know the answer IF someone has it.

First symptom : Stinging sensation (like when you rub wall insulation on your skin) that's mostly in my hands but sometimes it's all over. It's not really bad but I feel it and sometimes it does bother me. It's NOT itch. I've had this for the past 4 months now and it comes and goes.

Second symptom : I notice that it's much easier -since my first onset of this damn sarc about a year ago- for my skin to be "dented". Like it's easy to leave a mark on my skin and sometimes it lasts a long time. Also, the color is brighter (red) than usual. I don't know but I don't think it's my imagination. I don't have any swelling and I don't mean edema. But like if I press a coin even without too much pressure against my skin it will leave a mark that lasts for some time.

- Twitching, or something similar to muscle twitches but it's not in the muscle but it moves all over my body. This has been going on for a year now even though it's gotten much better but it still happens although not every single day. This started right after my first onset too.  I keep thinking it's neurological and maybe this god damn sarc is affecting my nerves. The twitches when they happen only last like a second or 2 and then they're gone.

- Another symptom is that resting some parts of my body against anything cause them to become sore. Like when I'm lying on the couch and resting my heels on the cushions or even resting my palm on the steering wheel cause them to become sore. NOT normal.

I'm scared. I want to see a doctor again but I'm sick and tired of doctors who don't seem to know anything about this.

I hope someone can tell me something but first I hope I have the courage to read the replies.

Thank you for reading.

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  • Posted

    I'm sorry that you are feeling so worried and anxious, they are terrible feelings.

    I am not a Dr, but none of things you've described sound like Sarcoidosis to me.

    Sarcoidosis is a dangerous disease for those of us who struggle with anxiety; because  it can present in so many different ways, it creates too much open-ended possibility which our mind can worry over.

    I believe that you are trying not to fixate and worry over these symptoms, but I suspect you are losing the battle.

    Bodies are not perfect machines and at any point in time almost everyone has a few unexplained aches, twinges, shooting pains, spasms etc... Many people are able to notice these anomalies and then put them into the back of their mind, because they understand that it is More Likely to be nothing, than something. Those of us with anxiety find that very difficult, but the more we worry and fixate on the anomaly, the 'worse' it gets.

    I would suggest you go to the Dr, so that you can fight your anxiety with the knowledge that a medical professional said there's nothing to worry about. Then I would seek some support for your anxiety and find a project you can get your teeth in to, to help take your mind off of the worry for a little while.

    I do know how awful the worry is and I hope you are able to find some relief soon.

    Best of luck to you x


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  • Posted

    Hi friend,

          My husband is currently suffering w sarc and it has caused many strange symptoms. One after another and then subsides a bit. He has swelling and the indents with it, then may get sores- a few. This sarc ftom what I see is different for alot of folks. He has seen evrry dr posdible and other than lung issues he gets good reports yet feels awful. Now anxiety is an awful thing to deal with but there is help from dr . My greatest source for his  and anxiety i experience is to lean in on the bigness of Jesus. His word, comfort, wisdom in the bible. It is like medicine for our soul. Jesus Savior and Lord is more than happy to help you. 1st step is accepting we are all sinners and we all need forgiveness hence ask Jesus tobecome Lord and ask him yo lead you. Not religion but relationships w God. Find a good non denominational dpirit filled church and a bible. Pray- talk to God. See your do tor as needed too. God is able to help all andloves us. Be well. I pray for healing 

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  • Posted

    Thank you, InRemission and dnr77 for your replies. I really appreciate it and sorry for the late reply. I was too scared to come back and read the replies but I knew I had to do it eventually.

    Yes I know anxiety and stress are the worst thing for this illness. I experienced this first hand and still do. Unbelievable how much stress can affect this illness. But I still don't know if the symptoms -or at least some of them-  I'm experiencing are stress-related. The redness and the markings and also the twitching started right with my first onset of pain. I still had no idea what was wrong with me. I had  actually started feeling better until I found out 8 months later that I had this curse, which caused the pains -and even new pains in the chest and waist area... - to come back, and I'm sure stress had a lot to do with it.

    I don't know what to do with my anxiety. Nothing's helping and the doctors here where I am (canada) don't give anything to treat anxiety. I'm sick of this and don't know who to turn to. The pain just started again in my feet and this has caused my anxiety to skyrocket, which I'm afraid will cause even more pains to come back.

    I believe in God and I pray to him and know he can do anything but I've had a pretty bad life to begin with and things never worked out for me and now this. How much more can one take without getting a break ?

    I just might go see another doctor but that's a problem in itself because I'm sick of doctors who don't care.

    BTW InRemission, are  you actually in remission ? I'm hoping so.

    Thank you again for the replies.

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  • Posted

    Hi all. It's been a while. I had been feeling better until a few days ago when I felt like I had something like congestion in my lungs and some pain in my feet and that sent me into a state of fear and crippling anxiety. Went to see my doctor but he's as useless as talking to a door when it comes to sarc. All his answers are " I don't know" ! So, he's going to send me back to the lung "specialist", another person who barely gave any answers to my questions. Being in Canada, this will probably mean MONTHS of more waiting (before I can see the specialist)....which for me, means more anxiety, fear and depression.

    So, who do I turn to for help and answers and actual care ? It's been 15 months since my first outbreak (of pain). I'm not taking any meds because they tell me my case is mild but how do I -or they- know the disease isn't doing damage to whatever organs in my body since they haven't done any real investigation (No PET scans...) ? Blood tests dont reveal everything from what I understand. What if I have nerurosarc ???

    It's so frustrating the lack of care and even basic knowledge (on the part of "doctors"wink.

    Very hard living not knowing what's causing the symptoms mentioned above and not getting any answers especially when you have anxiety.

    Any suggestions ? This is more than I can take.

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