Sarcoidosis Along With Fibromyalgia And Asthma
Mar 13, 2010
Just been diagnosed with sarcoidosis of both lungs. Also have Fibromyalgia, Asthma and various other medical problems.
Had bronchoscopy and biopsies on Tuesday, felt every one taken from my right lung was in complete agony. Had x-ray 2 hours later and was told there was no pneumothorax and sent home.
On Wednesday I was in a lot of pain, but as I was seeing my consultant on Friday decided to wait to see him and it had subsided somewhat by then. Told him about the pain and he sent me for another chest x-ray which confirmed I had a pneumothorax, which he said would heal on its own.
I have to go back next week for another x-ray to see if it has healed.
He said that he wouldn't prescribe steroids at the moment and will be sending me for another lung function test in the next 3-4 months to see how things are going.
Just feeling very tired and slight pain from the pneumothorax.
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I have been very unwell for sometime now and have had numerous tests for different things including TB and now Sarcoidosis. Reading what people are saying on here is very uplifting.
When I went to see my consultant again a couple of weeks ago I still did not have a clue what was wrong with me. He then said ok let's go with Sarcoidosis, then you ask what is this and he comes back with Granulomas, small tumors on you body organs. Ok here goes I then ask is this a condition for life will it go away? He said that we will discuss this when you come back next time after putting me on six steriods a day, which I have been taking and have now put on 5 pound in weight.
I am a very happy go lucky lady and will be 49 in May.
The posts that I have read in most cases have been positive.
It is now 3.54 in the morning and not for the first time I am waking up in the middle of the night for a couple of hours then getting up and going to work. Will the mortgage get paid if I don't go to work and would I be covered by critical illness. Such worrying times.
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does anyone get a very hot head
I feel dizzy and hot but when I put my glasses on the top of my head and take them off it's just wet having to wash my hair every day sometimes morning and night.
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Has anyone looked into treating the autoimmune part of sarcoidosis, if so, what was the outcome?
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I have lumps in my lower legs, shortness of breath (COPD) that is getting worst, even though I haven't smoked in a year. My eyes are not affected, just had them tested. I have been on leflunomide 20 mg for 2 months and lumps are going away. Doctor also put me on O2 at nighttime. My entire itches and that is driving me crazy, I take a baths only every 3 days, and have used all kinds of skin cream, nothing works. I have itches for 5 years, not allergies, that has been ruled out. Sometimes I itch worse than other times. I have also had all kinds of blood tests and the results always come back being OK.
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Well I had a small boil on the inside of my nose for months and it just wouldn't go away. I visited my NHS Dr who prescribed some cream, nothing happened - he advised to continue using it and suggested perhaps getting it cut off. Anyway I visited the Dr at work who advised getting it cut off which I thought would be end of it. But to my dismay they did a biospy on it and found out it was Sarcoidosis. My mum has this so I was aware of it. I was devasted. This followed with CT scans, lung test, blood test which confirmed Sarcoidosis on the lungs and enlarged nymph nodes. After a long consultation it was decided not to treat it yet as I had no other systems. But a couple of months later I developed a cough, two months later I am still coughing and on exertion (netball albiet quite a bit of running around) I end up having a sort of ashtma attack. Anyway to cut a long story short this is all related and have been prescribed steriods and some other stuff to counteract the side effects. I am really reluctant to take them but after reading the different views on this site with all the different effect I feel I should start taking them (waiting for the NHS to reluctantly prescribe them) before it gets worse. I am wondering now if I have had this for ages as the symptoms of tiredness, aching neck and shoulders I have always had but just thought it was me. My mum was diagnosed 20 years or so ago and it has only just flared up again but in the bones of her ankle. She has trouble breathing which they have said is asthma...
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I recovered from stg 3 Sarc (in lungs, lymph, joints, sinus) 13yrs ago, after 5yrs of illness and 2yrs of steroids.
I now have Erythema Nodosum (sp?) - red painful bumps on lower legs.
Research suggests that 'EN' is associated with a specific version of Sarc, Lofgren syndrome, which is usually resolves quickly and without treatment.
I'm scared to go to the Dr, as I don't want to face the tension & round of tests to exclude a Sarc relapse. It's not something I want to go through again...
I wonder if it's very likely for a relapse to come with a whole new presentation of the Sarc? Or is it unlikely to be sarc, as I never had EN the last time?
Does anyone have any experience or advice which may help me decide what to do?
Best wishes to all who are currently battling with their Sarc, I truly understand your pain and your exhaustion. I was not expected to recover last time - but I did.
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Due to Sarcoid I have an enlarged spleen & liver. It seems that other sufferers have the same problem. Question; has anyone found a solution to this problem. I have not heard any discussion on this topic ever?
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I had a Mri scan for back pain, result found 2 small nodules in lung. Seeing specialist in July, I get a little short of breath and a little wheezy at times nothing to alarm myself, but I have terrible fatigue also have red lumps on forehead chin and buttocks. Worried this could be sarcoidosis my father had this sadly died 26 years, I have read different views on this being hereditary, so worried seems ages till July I am female age 55 & a smoker, any thoughts ?
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So it's getting to that time of year again and I'm wondering if I should have the flu jab. I have mild asthma ( I only have symbicort and ventolin) and have never had a proper attack or flu. I was only diagnosed two years ago, but it's likely I've always had it (I'm 19) according to the nurse given that I have a history of breathing issues.
Last year the surgery I was with didn't receive any of the vaccinations until december. I was offered on but refused as it wasn't convenient at the time. I'm a student and had a two weeks of term left, full of exams and assignments. As I always feel unwell after jabs I didn't want to risk it!
Personally, I don't feel that I need it and I don't want to have one when people need it more than me, but I also don't want to be stupid and refuse it and then end up unable to breathe!
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I used to have breathing difficulty and when I have it, I always get fatigue and won't be able to sleep. things that triggers this condition include dust, cold drinks, oil fumes and so on. lately, this condition has suddenly reappeared. I have a serious tightening of d chest, shortness of breathing, water dripping from d nostrils and cough. what is the solution
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I have asthma usually managed with symbicort inhaler and ventolin reliever. I get intermittent chest infections and consequently I have been taking prednisolone occasionally for 5 years now - 2 or 3 times a year along with antibiotics when I feel I can no longer function at all normally and have to resort to going to the doctor's. I take 30mg a day for 5 days and they work very well. I am concerned reading other experiences of taking prednisolone and the horrendous sounding side effects. I have always known these drugs are not "good" for you but they have provided me with such effective and fast relief that I have continued to resort to them, albeit occasionally. I have no severe side effects - some interrupted sleep, heartburn etc. Can anyone tell me if, at the levels I am taking them, whether I am likely to suffer the side effects other people speak of - e.g. weight gain/redistribution, moon face, osteoporosis etc? Also whether the side effects go away and how long they last once you have stopped taking the pred?
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My peak flow best is 400, and normally is around 300 plus or minus 10-20 points. Ever since I walked through a cloud of cigarette smoke yesterday, it's hovering in the low range, although not quite to the red zone. And of course, it tends to get worse at night, after office hours. Don't really want to keep hitting the rescue inhaler as much as I have. Do you think if I wait it out it will gradually get back to a normal range, or should I break down and seek medical attention tomorrow? Still trying to learn how to manage asthma and what my personal limits are. Thanks!
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I've been diagnosed by my doctor three weeks ago. going to a specialist on the 22nd of this month. Just want to know what happens now? It's going on three years having trouble breathing. They said i had asthma.
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Well I'm 21, coming 22.
Quit smoking after doing it for 6 years and 2 months!
Last cigarette 52 hours ago and I'm NOT going back!! I've been using the eCig - they're brilliant.
But I'm so worried - could my asthma have progressed into COPD?! Sometimes when walking vigorously, I get tight chested, but it goes away by itself.. I think I've always had that?
My lung capacity hasn't changed (yes, I actually measured it all those years ago when I started).
Reading about COPD is what made me give up. Basically, is smoking for 6 years long enough to change my asthma into COPD?
* Smoked 10-15 a day for first 2-3 years, then 20 a day the past 3 years roughly
* Used reliever inhaler 2x per day during that time
* Since stopping smoking, I've only used my reliever in the morning
* Have a very dry cough with tiny amounts of phlegm - when smoking had more phlegm!
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I'm having some problems with my allergies, and was sent to spirometry to check if something was wrong with my lungs as well. The results were suggesting I had mild asthma, however I smoke from time to time, and I haven't told the doctor about it because my parents were there. To be precise, I smoke one cigarette every other day. In comparison to other people, I know it is not much, however, is it possible that this small amount could have triggered the heightened concentration of carbon monoxide in my lungs which indicates asthma ? Thank you.
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For the past couple of months I've started belching /burping ,it's not acid ,I get a feeling of a lump at the back of my throat and feel the need to rub my upper chest / throat to help relieve it.
I have asthma to ,not sure if the two are connected ,it's a new problem for me ,I'm 69 and was diagnosed with asthma back in 1992.
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What is the mechanism of action in inflammation in asthma vs pneumonitis?
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I was diagnosed with pleurisy and the pulmonary doctor gave me dulera. Has anyone else been prescribed dulera. And is asthma related to pleurisy.
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So, I had bad wheezing after a cold from last winter. A regular doc prescribed me Symbicort. I had been taken it regularly, but recently my wheezing went away, so I stopped taking the Symbicort just to see what would happen with my wheezing.
The wheezing has gradually died down, but now I have trouble breathing at certain times during the day especially at night around 8 o'clock and on. I can't tell if the wheezing going away is a good thing or a bad thing. Also, sometimes, I also feel a murmuring sensation in my upper chest when inhaling.
The biggest thing is when I inhale I don't feel like I'm getting enough air. I want to go to a pulmonologist, but it looks like it might be a while before I'll get in. I have a few doses left of my Symbicort and want to save them.
I'm uncomfortable going to sleep and I'm also nervous about things like the "silent chest" since my wheezing has really died down. It's also really humid where I am right now, so I don't know if that's factoring into my trouble breathing. Lastly, I also have had panic attacks in the past, so I'm always hesitant to go to the doctor over things like feeling like I'm not getting enough air.
How can I tell the difference between a panic attack and asthma?
Do you think it's asthma? Why does it seem to happen from 8 o'clock at night and up? What can I do so I can sleep?
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I am 24 years old, 82kg and been stressing about my health for the past month.
I first experienced a very fast heart rate from a short 2 min jog up the road were i had to stop and wait for my heart rate to slow down.
now since then my stamina has gradually gone right down to the point were I am unable to go up two flights of stairs without my heart racing and feeling out of breath. bearing in mind at rest I only experience a tight chest no shortness of breath.
To rule out heart problems I recently had a Echo-cardiogram,ECG,holter test and a chest x-ray. I was told all my valves were fine, my arteries were not blocked and my ecg came back abnormal but it was not serious. (all these tests were done in the past 3 weeks)
Now as I had my consultation with an expert they noticed I was wheezing and I explained to her every single day my chest feels sore and tight. even now as i type laying on my bed. I was diagnosed with asthma when I was a child but I seemed to grow out of it, however back in 2006 I had similar feeling to what I have experiencing now which is tight chest pains, shortness of breath. but I cant remember my heart jumping really high from exertion of walking up the stairs.
so now I am going to visit my asthma clinic on thursday to see what they say,suggest etc.
So my question is could these symptoms of tight chest and short breath be linked to my fast heart rate?
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