1. Community
  2. Chest and lungs
  3. Sarcoidosis

fed up now

Posted , 3 users are following.

kristy1980
kristy1980

ive been ill bout 7 years now only diagnosed in 2012 , ive been on steroids for my lungs been of them over year now , im feeling like noone is listening to me , i woke the other day in pain it was like my whole body ceased up if i moved i was screaming it hurt that much my 7 year old was only one who heard n woke to help me slowly throughout day it eased of managed get up n walk had cancel vets noway could drive that far and get dog in out car as shes old n refuses get out , gave 14 year old day of to help we went doctors she put my pain killers up from 75 to 100 so thats 200 a day (pain clinic gave me these ) they say i have spondolosis in my neck which is causing pain altho xray dont show it there , me personally thinks its the sarcoidosis but they keep saying no yet i found a page other day with load symptoms of sarcs and joint pain was one , i printed it of circrled all i have n will show hospital monday when i go as been refered back to them cause i keep getting bad chest and cough , hope not got be put on steroids again im in enough pain i dont need be putting on more weight , then theres me being on jobseekers i struggle to do everyday life let alone get into a job where i would most likly have carry things which make my back worse and shoulders hurt , i want to work but i feel i need a time out to get my meds right n pain eased of

1 like, 3 replies

3 Replies

  • tangles
    tangles kristy1980

    Posted

    Kristy

    I am so sorry to hear you are in such a hard situation.

    If it helps, the symptons do get less as you go on.

    Hope things improve for you sooner rather then later.

    Thinking of you.

    Tangles

  • Nickademus
    Nickademus kristy1980

    Posted

    Hi Kristy

    I so feel your frustration, and perhaps youve hit a brick wall with it all or would like to!

    First of all, I think the best bit about this forum, although we are not medically trained, we understand and genuinely know what others are going through. It most likely we have been there too.We can support each other with shared experiences. Its not about 'mine is worse than yours' or putting others down, but just being able to tell people who wont judge or who just get it is medicine in itself. Just my view anyway

    I went back to work after a month in hospital and 9 months off sick. On reflection I should never have gone back when I did but it was financial and the fact i' worked so hard to build up my Dept and it was starting to crumble and I needed some routine and focus back. Some grasp on 'normality'. Working is hard. I am a high school teacher and there are days i cant get out of bed but I somehow do andits been my sheer stubbornness and 'bloody' mindedness that has got me there. The kids are very helpful to me when im having a bad day. What im saying is I understand the need to work and the will to work and its ok. In hindsight I needed another 6 months off but I was caught between a rock and a hard place. And there is a down side to it all. Other stuff doesnt get done or takes longer. My social life isnt very socialble because either Im too tired or some people just dont see problem. And im too tired to even attempt to explain. I take an antihistermine for the itching in my skin, 400mg Ibubrofen 4 x day, 1000mg Co Dydramol 2 X day, For pain, 40mg frusomide for water retention in my legs. if i dont they are huge, heavy and so painful i cant walk. 25mg Omozerprole to stop the drugs reacting in my stomach, 200mg hrdrocloxochloroquine 2 x day. This is supposed to me for rhuomertoid arthritis but my consultant gave it to help my joints. Oh and I have a CPAP machine as the weight gain has created sleep apnea. Without that, I wouldnt be a work. It took about 6 weeks to get used to and its horrid at first but now I cant sleep without it. I have been on Prednisolone steriod for 2 years and I took my last one last Saturday. They want my next lung funtion test to measure how things are without them to give a true picture. I must say as the week as gone on, I am struggling. much more out of breath, painful lungs, slower, even more tired. was so tired last night but couldnt sleep because of pain. But im determined to be off them. I gained 4 stone in a year and it came on like someone threw a bucket of flab at me, so quick and SO hard to lose. My Consultant said dont be a hero, if i come off and I need them go back straight on, but i need to give it more than a week

    I think my biggest issue is the frustration. It upsets me at times. Mind is willing but body lets me down. When the energy plug is pulled out , as you know there is no reserve and accepting thi has taken a long time.

    My only advice with the 'Professionals' is to go to your appointments informed with what you want to 'hit' them with (not physically.......) and if they arent listening and Im sure we've all med the gods of medicine who know best, ask for a second opinion which brings them into question. As they are scientists they cannot argue with proven facts.

    I just wanted to sayI get it, and so do others on here and we could all have a joint scream if we had enough breath to scream. Im lucky as I have an excellent consultant, I do know and appreciate that

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.