Is it me? Do I imagine this or do I know myself better than the Dr's?

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Hello

I haven't replied to the forum for a while now, I fell out with my sarcoid for a while and didnt want to deal with it. But Im back!

I'm coming up to nearly 5 years since diagnosis and treatment. I only medicate myself when I need to. Not as often as should though. I suppose my question / thoughts are about am I right in thinking I still get symptoms and side effects 5 years on, even though it hasnt erupted again. I still get massive sweats; mainly my head, neck, shoulders chest. I still get very very tired and switch off. When I dont feel well, for no reason my chest tightens, or its painful to breathe deeply. I still have a bad cough. When my sarcoid erupted, I had 4 severe infections in my legs. Those burnt the tissues in my skin and i suffer from quite bad water retention and my legs and feet hurt constantly. I also had spots on both legs which one medic said were sarcoid spots. They reflected the areas of sarcoid on each lung. Another Dr told me there isnt such a thing. But when i dont feel well or I get a cold those spots re-appear. Medics also told me the pain and swelling in my legs isnt from the cells and tissues betting burnt with infection? so what causes it then. 5 years down the line where the infections burnt my skin, the hairs have never grown back,so there has to be damage, surely. I get cross at the illness because if it had to burn the hairs from my legs, why on earth couldnt it burn all of them off, instead of patches. As a woman it could have least done me that favour!!

OK,I now sound like the rantings of a mad woman, and probably not far off, but honestly you good people. Is it me? 5 years down the line am I blaming an illness or am I intune with myself far more than I realise.. or a bit of both?

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9 Replies

  • Posted

    First of all, I don't know why but this site is dying or something as people are replying less and less to patients' questions.

    With most doctors being completely ignorant and clueless about this illness, I think you are your own best doctor. So, if you suspects those symptoms you're having are related to the illness then I'd say most likely you're right about it. I myself feel all kinds of weird things and I have no doubt it is because of this god damn sarc. It is not a coincidence that a lot of the people with this illness have mysterious symptoms (that most doctors can't diagnose). It just proves that this god damn thing DOES and IS causing weird and inexplicable symptoms.

    So, NO. You're NOT imagining things. I'm not imagining things either even though my stupid doctors thinks I am ! I'm sick of the world.

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  • Posted

    I'm just curious to know what you mean by " I only medicate myself when I need to".  Are you talking about steroids, cortisones....?

    Also, I just want to say that just like you, I've never had a second attack (eruption of pain...) since my first one more than 15 months ago but I still get these weird sporadic less intense pains and burning sensation here and there especially in my shins and feet and of course other sorts of weird symptoms.

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    • Posted

      Im off steroids. I never ever want those things again. Putting weight on was immediate. Losing it is a life battle. Im prescribed anti inflammatorys, high dose painkillers, tablets to stop me itching (they dont really work). Ive stopped the vitamins and calcium and water tablets. I only take the water tablets regularly. I told the Dr I didnt want any further Sarcoid medication treatment, the regular ones they experiment on you with. And when I stopped taking them all, I went through a few weeks of my body adjusting - which actually means pain, sweats cramps and hell. But I take them only when things get too much for me. And my mind feels alive again. I can think straight. My 1st consultant was a Professor and I had great respect for her; she told me the bigger and heavier the Sarcoid attack the less likely it will ever occur. And mine was apparently massive. So here's hoping its cleared off!

      You will probably think im a complete saddo, but Ive built a relationship with my Sarcoid to help me cope. Dont get me wrong ive had the screaming ad dabs at it, why have something so perculiar? What did I do wrong to get this? Will I ever be well again?

      Ive hated it, Ive fell out with it,  ive ignored it and now I have an understanding with it. I never asked my Sarcoid to invade me. I never invited it, never wanted it. So whilst its in my body it has to remember this is my body, its passing by, its not staying. Whether its for 5 years, 10 years+ its not welcome. I dont love it,I dont like it, but whilst its here, I acknowledge it and it has to do as I want. Ok it ignores that bit. But as a passer by I will not be a martyr to it, I will not let it control my life

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    • Posted

      Thanks for the reply, Nickademus.

      I understand these meds they use for sarc are poison and can have worse effects and sides than the disease itself but what I also know is that in some cases -where the disease is affecting vital organs- a patient has no choice but to take the meds. I really do not want to take any - I haven't yet- but scared to death of having to if they find this damn thing is in some vital organs. Would I have any other choices ? Just had an echo done a couple of days ago and I'm so scared of what the results might reveal.

      Unfortunately, illnesses hit us even if we are good people who've never hurt any one. I've never done any wrong to no one and I'm always sympathetic towards others that it actually prevents me from being happy or enjoying my life (always feeling guilty for the plight and suffering of others) and I've had a miserable life full of suffering since I was a child and I have more than I can handle and now I have this sarc to add to all that. WHY ? There isn't really an answer but I know life is NEVER fair and it never makes any sense.

      I also know that illnesses invade our bodies and whether we like it or not they can and will stay as long as they want to and they might never leave us alone...or worse. But I hope you have all the strength to fight this illness and I really wish you the best. I hope for most of us it will be a temporary thing and for the rest, I just hope they find some cure or a better treatment because I'm sick and tired of all these useless and harmful "meds" they keep throwing at us.

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    • Posted

      I fully understand that taking meds is life saving. I wouldnt be here if I hadnt taken them. I came as close to death as it comes, followed by plans to amputate both my legs. It affect my lungs and was close to spreading to heart. So I do get it.I also get the tough life. But nobody said life is fair. My point was about mind over matter, finding the strength to live with sarcoid rather than exist with sarcoid. On those days when its too painful to get out of bed; breathing hurts, and I feel so lethargic and sloath like I dont want to go on. Its cold outside, its raining and foggy. I force myself up, remember I'm glad for my life - and yes i argue with myself about that too - but i want to live as ive existed far too long

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    • Posted

      Sorry to hear about what you had to go through but I'm also glad things never went that far (death, amputation..). I really hope you have all the strength to fight this damn disease and live a healthy life. I wish I had the same attitude about life and living life with this disease.

      Good luck with everything.

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    • Posted

      But as a fellow sufferer, you too can have the same mindset. Life isnt easy, life deals so cruel,sometimes nasty things to us, especially for no reason and we arent deserving. But the hand is dealt; its what you do about it. the positives in every day may be microscopic at times, but celebrate the small things and let them build. Mindset is the biggest obstacle. Things like Im out of breath for a shorter time today. This evening I dropped the canister of rice - I cant grip or hold things well. I was annoyed it I only dropped half of it and it was on the worktop. It could have smashed the canister, it could have gone all over the floor. And in building the positives really helps me lift my spirits when everything hurts and everything is just too much. Mind over matter; if you dont mind, it doesnt matter!!
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    • Posted

      OK. Thanks, Nickademus.

      I know the mind is a very powerful thing and it can either help or make things a lot worse. The problem is, not all people can control how their minds think or feel about things. I have had so many negative things in my life that I really can't see the positive things any more and all I see is the "negative". No matter how hard I tried it never worked.

      Thanks again for the encouragement though. I wish you all the best.

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  • Posted

    Hello Nickadeus. I like your positive attitude. It's been my experience that the doctors aren't aware of all the odd things that correlate with this strange disease. We know our bodies and can observe things they wouldn't be able to. This disease manifests in so many ways, how could the doctors know every aspect? Seems my doctors are fairly well informed and have helped me a lot, but sometimes when I have a question, I get the impression they are speculating when they answer. I don't bother them with some of these weird details if I feel they won't know the answer. I am very grateful for medical intervention. I would have died had it not been for prednisone. Was close to hemorrhaging to death. Granulomas in my bone marrow was preventing blood platelets from forming. Those are the little things that help our blood to clot. Didn't know I had Sarcoidosis until the hemmorging risk put me in the emergency room. That was after a chest exray. Then a biopsy. Had gone to doctor for difficulties breathing and sudden unexplainable bruising. Took doctors a while to figure it out....that the low platelets and lung lesions were all related to the same disease. So prednisone saved me. What an experience that drug is. I've been a natural leaning person for 45 years. Never was in the hospital with anything before. Never on medications! Eat natural foods. So prednisone was a leap for me. They are tapering it off and will transition me to low dose chemo. Hoping the sarc will go into remission. But I am peaceful with the disease. I was too goal oriented and being forced to slow down has caused me to reevaluate what each moment in life means. Flowers suddenly more beautiful. Feeling empathy for folks around me..in stores, friends, you name it. There's so many ways see reality. I'd rather squeeze the sweetest thing out of each moment even if this body can't run around all the time. It's a choice we make with ourselves with each breath. It also means not beating up oneself for having to be less active. Blessings to all my brothers and sisters dancing with this mystery called Sarcoid. Hope you all find some peace in your hearts. Thanks for sharing.

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