chronic pain from sarcoid - treatment

Posted , 8 users are following.

Hi. My wife  Eve has chronic sarcoidosis in both lungs and  is  in bad to severe pain all day. She is frequently bent over in tears with the pain. Is this common with sarcoid? She can cope with the associated sarcoid problems but the pain is the mayor problem to her quality of life. She is 78 and now needs help/assistance all the time.  Been on most of the pain killers none of which seem to help much. She is on pregaviston  at present. Pain is always at or around (radiates from,) the biopsy site which was over 31/2 years ago. Told it was a over night stay which ended up as 3 weeks – x-ray every day.  Strongly suspect students were involved. We are told by all that its nerve pain but we don't believe it. Until around 2/3 months she often wake in the mornings in little or no pain.. But when she starts moving it starts. If you touch the area it can hurts.  It the car hits a small bump it hurts. the more she moves about more it hurts. But nobody listens. Recently the pains got much worse – disturbed sleep, awakes in pain and often needs my assistance to get out of bed / chair and to the bathroom all due to the pain.

 

Had to take Eve to A&E on 1/1/15.- two days after our GP said she had a minor infection and would be fine. They saw her quite quickly, put her on oxygen, drip, injections, x ray etc. then moved her to intensive care ((AMU 1).  mechanical ventilator, CO2 in blood v/low sodium, high blood pressure water in the lunges. Just glad she didn't have a serious infection! Discharged after 2 weeks, Extensive chronic pulmonary sarcoid , fast af, ccf . medication on discharg – Lansoprazole 30mg.  pregabalin 75 mg x3. prednissolone 40 mg. bisoprolol  75 mg. furosemide 40 mg.

Would ask for referral to a sarcoid clinic but it would mean a London hospital  involving travel - stairs and walking which she would not be capable of and its unlikely at this stage the treatment would be any different. Considering a private consultation – don't think it will help but at least we should get the basic facts of the situation. Has anyone tried acupuncture  or pain killing  injections for sarcoid?

Appreciate any advice on painkillers that work for anyone in/with a similar condition.

She gets an abundants of sympathy what she needs is some effective pain control and up front advice on her condition. Appreciate any advice on what painkillers that work for anyone with anyone in/with a similar condition. Thanks

 

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    I'm really, really sorry to hear that you're going through this.

    I'm not sure what it can be; I also had a pneumothorax and it can be painful; but not like that.

    I also had some lung pain because the TB infection I had before attacked my pleura (however, the pain went away after I ended the treatment). I didn't find painkillers to take away my pain. It was better for 1/2 - 1 hour, then the pain was back....

    Usually, sarcoidosis and infections in lungs don't cause pain...the only explanation I can think of (this is what my doctors told me when I had lung pain) is that, whatever it is - be it an infection, or sarcoidosis, or something else - it has reached pleura...

    As far as I know, acupuncture may work, but you need a really good specialist...What you can do is to call an (or two, three) acupuncturist(s) and explain the symptoms; only s/he (they) can tell you if acupuncture may work or not...

    Wishing you all the best,

    Magda

    Report / Delete Reply
  • Posted

    Really, really sorry to read your post.

    I have stage 1 sarcoid which I have been told is not severe enough to be treated with medication and and at present I am being treated for acid reflux - had umpteen tests and taking lots of pills but I still have chest pain/heartburn pain everyday. My story is long - I could write a book!

    Anyway, I wanted to let you know that I have been having acupuncture for the past 13 weeks and although I am not cured I do feel it has helped - I am sleeping better and certainly dealing with life better.

    Anything is worth a try!

    Best wishes,

    Lynne

    Report / Delete Reply
  • Posted

    Hello

    My regards to your wife and you too are suffering because she is suffering. It feels like you are at your wits end trying to bare her pain too.

    The level of pain she is in doesnt sound normal . I have had sever Sarcoid and been treated. my lungs hurt and that means my upper back and shoulders are painful. I have chronic pain in my lower back radiating down my legs and sometimes halts me walking. pain killers dont do anything

    Ive had acupuncture in the past and it helps. Ive seen a cranial osteopath in the past and Im seeing him next week. This is very very gentle and seems like they dont do much but its fab. It realigns all your skeleton. I would ask the Hospital for a 2nd opininion and a referral to the Pain Management clinic. They are very up to speed with things, meds, techniques etc. I 1st went to pain management 25 years ago when it was a new concept in this country and I was part of the clinical trials. They help manage the pain if it doesnt go. 

    Dont suffer in silence. please dont be offended by what i say, its totally sincere and I say this because I see it happen to my Dad who is 74. Because you are 'old' and I know youre not but you get my point, they will patronise you, fob you off, put it down to age etc, talk at you, treat you like you are stupid. My dad has alot of conditions. His last assessment had a written report about him and there were 14 points that were factually incorrect. It talked of him having an examination and the Dr noticing clubbing to his hands - he never took his gloves off!. He noticed the hernia on his stoma. My dad sat down didnt take his coat off and the stoma is covered by his jeans jumper and coat. in fact no examination too place They are just two examples. My point is they are not Gods and they dont always know. When it comes to Sarcoid they rarely know

    I appreciate its hard to ask for help. However there is no point in suffering in silence. Perhaps you could chat to your GP and tell him/her how its affecting your life, how youre the carer and need support to help her. They will do something PDQ as they dont want you to go down as its going to cost them money!!! 

    Im sorry if Im so blunt, Im trying to help and put a practical point across of different tactics to help you. I hate to see people struggle and people take advantage. I will shut up rattling on now and I hope things go well for both of you

    Take good care and lets us know how things go

    Kindest Regards

    Nicola

    Report / Delete Reply
  • Posted

    Hi Evelyn

    I am so sorry to hear of the pain and the disruption to your everyday life this illness has caused for both of you.

    Besides having sarcoid I am also the primary carer for my mother in law.

    Thelma is 85 had a major stroke and many complications caused from the stroke.

    I take on and support what Nicola said in her post. 

    "When it comes to Sarcoid they rarely know

    I appreciate its hard to ask for help. However there is no point in suffering in silence. Perhaps you could chat to your GP and tell him/her how its affecting your life, how youre the carer and need support to help her. They will do something PDQ as they dont want you to go down as its going to cost them money!!! 

    Im sorry if Im so blunt, Im trying to help and put a practical point across of different tactics to help you. I hate to see people struggle and people taken advantage of. I will shut up rattling on now and I hope things go well for both of you"

    Sometimes doctors feel that if they tell that everything is all right a lot of people just accept that and go away feeling better.

    There might be other issues in Evelyn's health. Afer so many weeks in hospital you would think they would have looked at all of these things. But they do not.

    I would be starting again at ground zero and having a very long talk to your family doctor. This level of pain is unacceptable.

    Hope things work out OK for you both

    Regards

    Tangles

    Report / Delete Reply
  • Posted

    Hi, I know this post is a year old but I thought I'd make a suggestion.  Any chronic pain which fails to respond to the standard opiates or anti inflammatory drugs screams NERVE PAIN.  Which is very difficult to treat.  With your wife's Sarc symptoms it might not just include her lungs having fluid, it also invades the tissues in the body.  This fluid can represent inflammation to that area also which then irritates the surrounding nerves and can be excruciating.  Try talking to her health care providers about nerve blocking medications like lyrics or Gabapentin?  They have helped me immensely.  They can take time to work, but when they do nothing can compare.  She needs to drink loads of water too, and I can see she is on frusimide which is too flush out as much excess unwanted fluid in her body. This can be very hard on someone in chronic pain having to get up and down to the toilet.  Have a commode beside the bed.  Also using an ice pack NOT A HEAT pack on the most painful spot will give her instant relief.  It's never nice in the winter to have to think of using an ice cold compress, but once she feels the pain relief she won't go back to heat.  Well I do hope she has improved, all the best Cheers.  

    Report / Delete Reply
  • Posted

    My wife has had sarcoid for 16 years it has got worse over the years to the point she had to have her spleen removed. Her pain levels has got a lot worse. They tried every pain killer known to man.The only one that works well is an old narcotic called talwin. She has been using it for years and work well for her. She takes it and is still able to drive and function normally. It is expensive so u need insurance to afford it. She takes 2 every 6 hours wich is 240 per month. At $750.00 per month. You can get a week supply for $112.00. I hope u are able to try this it does not take all her pain away but makes it manageable so she can enjoy life.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums 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 forums 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.

newnav-down newnav-up